In a message dated 2/6/2005 11:08:51 AM Central Standard Time,
costello@... writes:
I left
that philosophy in August when I went to a holistic health care facility.
What kind of costs are involved in doing this? Does your insurance help?
Where did you find the facility? Was MTX the only drug you have tried?
Thanks,
Tiffany
I was just diagnosed 2 weeks ago. I have had a strange water
blister like rash on my elbows and knees and scalp since I was 14.
It came and went once or twice a month. My dermatologist told me it
was hormonal. I have just been so sore and my feet feel like they
are going to explode, my fingers hurt in the cold etc, etc. My
lower back also kills me. I dread standing up after a long period
of sitting, it's agony. I am 29 but feel like I am sooo much
older. What can I expect down the road???
Thanks,
Mandy
Hi Soheila;
Ap does not always work quickly and you really have to play
around with different antibiotics.For the first 3-4 years of SD and AP
consisting only of mino I had virtually no improvement other for a
little less pain and the fact that I was not dead depite the docs
telling me I would not last a year.About year 4 I added clindamycin one
day a week 1200mg devided over the day and mino the other days 200mg.I
had a bit of improvement and like you I just kept on working.In year 5-6
I found out about my celiac and food problem along with a real whacky
vit.D ratio.I dropped all those foods and vitD foods.I was only somewhat
careful of daylight,covered up when I was in the greenhouse but could
not wear No IR glasses as I needed to see bugs.I also dropped the mino
to 100mg every other day.What a blooming difference that made and
remission came in less than a year.Now my doctor rotates different
antibiotics so that I do not develop a tolorance to any oneand I alway
take Diflucan or Sporomax on rotation as well because we all have a
yeast problem eventually.Mine started at the very beginning of SD,long
before antibiotics so that had been festering for years without knowing
it.Patince is the name of the game.I did not have an AP doctor for the
first 6 years,just a very nice family doctor that let me learn and wrote
the prescriptions I wanted.I had to be my own doctor and thank this
board and Roadback for giving me the tools I needed to pretty well fix
myself.I only found my AP doctor after being in remission. Lynne
Hi Dolores,
Thanks for all the good ideas. The winter months always seemed to be the
hardest on my skin. I buy medical supply and the 'yellow' gloves in bulk!
I just have to remember to use them. I used to be able to purchase white
thin nylon gloves; sometimes called hosiery gloves to use to prevent snags
etc. I can't find them anywhere so if anyone knows of a source I'd love to
have it. I originally got them at a National Wholesale in NC but they
haven't sold them for a number of years. El
_____
Hi Cooky
Thank you for the kind words.I try to be patient but I
have a full time job and live alone. My Dr believes in
AP but he is familiar with Clindamycine IV's. I take 2
days a week 150 mg clidamycine capsuls twice aday. 5
days aday I take minocin. I saw improvements on
minocin after 3 months then i had a flu or something
flulike that messed up everything. I am on ap for 9
months.Today i am so stiff that i hardly can walk but
i am at work. people don't know how sick I am. anyway
thank you
soheila
Debbie,
You said, "Is this normal?" There probably isn't a soul on here that knows
what "normal" is, but there will be a whole bunch of us that can commiserate
with you with similar symptoms! :-)
It really is a provocative question.... bottom line, probably some of
both..but tired is tired just the same.
Liz T
Hi Dolores
How are you doing?
I am still the same. no improvement. my feet and hands
killing me. I have pain in whole my body. only
Ibuprofen helps me a little bit. I am still on
minocin. I guess it is almost nine months. I don't if
i ever see any improvement with AP. It seems my
disease has started now.
It is so frustrating that you and others say within
few months of AP you felt better. mine is the
opposite. I heard Ap works for 80% not for all. maybe
i am in the 20 % unlucky group.I saw Dr. withman last
week. he asked me to do more blood test. he wanted to
know how is my SD factors since one year and half
ago.He told the pain in my feet maybe from vitamin D
deficiency. I am going to see him next month. I told
him about triple AP he asked me to give the name
antibiotic are prescribed by other doctors.
talk to you later
soheila
Kathy, while I understand what you are saying about a single charismatic
person's effect on people, I feel that if a person is going to be persuaded in a
particular direction it will happen no matter what is said here. I remember
when all the fuss was made about David. I remember that when I responded to
anyone on the subject I always added an admonition about talking with your
physician before making any decisions. I'm sure that advise was heeded by some
and ignored by others, which is just exactly what happens in everyday life. I
was under the impression that the purpose of the group is not to endorse
anyone's opinion but rather to faciliitate discussion of all aspects of our
disease. If we fear what David has to say isn't it possible that we could also
miss other information that could potentially be the best treatment available
just because it is new and unfamiliar? I sincerely think there are very
competent and knowledgeable people here (you are extremenly high on that list)
which couldn't possibly be destroyed by a single individual. That is my 2 cents
worth. Cheri
Cheri,
Very well said.
Kathy F.
In a message dated 2/6/2005 12:11:51 P.M. Eastern Standard Time,
cdyost@... writes:
Kathy, while I understand what you are saying about a single charismatic
person's effect on people, I feel that if a person is going to be persuaded in
a
particular direction it will happen no matter what is said here. I
remember when all the fuss was made about David. I remember that when I
responded
to anyone on the subject I always added an admonition about talking with your
physician before making any decisions. I'm sure that advise was heeded by
some and ignored by others, which is just exactly what happens in everyday
life. I was under the impression that the purpose of the group is not to
endorse
anyone's opinion but rather to faciliitate discussion of all aspects of our
disease. If we fear what David has to say isn't it possible that we could
also miss other information that could potentially be the best treatment
available just because it is new and unfamiliar? I sincerely think there are
very
competent and knowledgeable people here (you are extremenly high on that
list) which couldn't possibly be destroyed by a single individual. That is my
2
cents worth. Cheri
My doctor just suggested it. I took it years ago, but who knows if it works
or not. With this type of A, symptoms come and go with little reason. I
have added it back because my doctor suggested it. It can't hurt?
Ks Di
Dear Pat, I wish I could say Ive never felt the kind of pain you are
describing, but I have that all the time now in my back. I just got an MRI
back on my lumbar area about 2 months ago and it was full of bad news. I
wont go into all the problems here, but Ive been trying injections to slow
down the inflammation. So far I havent had much luck.
Your bone scan might show inflammation in those joints or where your pain is
coming from. One thing Ive realized with my back is a lot of my pain in my
legs, hips and thighs is from my back. I hope you get some answers and if
not I would insist on a MRI. The sooner you find out what is wrong the
quicker you can treat it.
Take care, Love, FRan
Hi Sandy, I used Dove soap for showers and nothing else. My Raynaud's
disappeared
within a few months after beginning Minocin 100mg twice daily. Has never
returned. That
was two years ago. I am now on M/P (Marshall Protocol). Just started! Will
update in 6 months. Dolores
2468 8462 <sandykayball@...
for those of you that have used the above, what benefits have you
experienced?
I have had several weeks of severe Raynauds and now my fingers are peeling -
has anyone experienced that?
thanks again to everyone for sharing - I've learned so much these past few
years
Sandy Decker
Beaumont, CA
MCTD/pulmonary fibrosis, etc.
Hi everyone,
I have a question on back pain. I have developed a pain in the center
of my back on the spine. It feels like electric shocks or like
someone is pushing pins into my spine. It hurts alot. It started out
occuring mostly in the evening and now it happens all day long.
Tomorrow I have to go for a full body bone scan and maybe that will
show something. The pain in my hips are getting much worse with the
left more than the right. Has anyone experienced this type of pain in
their back?
Thanks
Pat
I tried that link and got an error but was able to find the info. I did find
the page above it http://www.healthtalk.com/psoriasis/programs/ but dont know
which particular link would refer to the info you suggested. Can you go to
this page and see which link it is and let us all know? Orin
In a message dated 2/5/05 8:44:42 PM Central Standard Time,
quirkygirl98815@... writes:
I had a web site marked in my favorites on things to eat or not eat
when you have psoriasis. It is really helpful because it talks about
foods that help or hurt the inflammatory process;
www.healthtalk.com/psoriasis/programs/11_378/pageof.cfm I know
that is really long and I don't know if you need all of that address
to get to the site or not. Just wanted to pass this along, Susie
Hi everyone,
With all the hype around Glucosamine as a natural treatment for
osteoarthritis I was wondering if anyone here has tried it and
whether they found any benefit?
Ive had PA since I was 24 so thats 7 years and I have tried many
things. Im currently on 20mg weekly of MTX and have just stopped
taking Celebrex and now take Piroxicam (NSAID).
Cheers
Melanie
It's been well over a year since I last posted. I had been on
Methotrexate for about a year. I got off of it January of 2004. The
PA has been tolerable, but the psoriasis went crazy...worst flare in
about ten years. I've simply not been able to control it with new
stuff popping out so fast that I haven't been able to keep a handle
on it. I went to the dermatologist. He wouldn't let me do any more
UVB or Puva because of all the little potential skin cancer bumps
I've got all over my hands.
As far as the PA goes, I still get aches and pains. The worst joint
is in the ball of my foot. That aside, the PA has been tolerable
since dumping the MTX.
I figured going on Enbrel would get rid of a lot of the aching,
especially in my knees and hips. I've only been on it for two weeks
now, 2 syringes full twice weekly. The psoriasis has started to
calm down a bit, but I'm getting a lot of swelling in my hands and
feet that wasn't quite as chronic and I'm feeling "tendonitis-like"
inflammation in my left elbow which was a problem in both elbows
before I went on MTX two years ago. Is it possible for the PA to
react negatively to the Enbrel? I feel like I'm going backward on
the PA and making progress on the P. Maybe just two weeks into
this, it's too early to be second guessing...
Any insights any of you have would be greatly appreciated.
Thanks,
Mark Kelley
Parker, CO
Hi,
Seems if other people are discussing alternative/complimenatary
treatments David should be allowed back in too. Kathy is quite good
at pointing out what is opinion and that everything does not work for
everybody which would solve the only possible danger of a newcomer,
newly diganosd that is, putting off valuable medications. If I
remember correctly, David , himself used traditional meds also.
"aye"
Marti
I was diagnosed a few months ago with Psoriatic Arthritis. It
started with a very swollen finger. Now I have pain in my hands,
wrists, elbow and lower back mostly. I have overall stiffness mostly
in the morning. I don't start feeling "normal" until after noon. I
am also sleeping a lot more than before. The doctor has me on a low
dow of Prednisone (I can't handle Prednisone very well so it is a
very low dose) as well as Mobic twice a day. I have done some
research about this condition on the web but am still really unsure
as to what to expect from this condition. I was also wondering if
anyone used alternative medicine and how it worked for them.
Also, I feel that when I try to tell others that I am just not
feeling well or that I am very stiff or sore, that they just don't
understand and just think I am whining. I used to be able to walk
around and shop for hours but now after a short time my lower back is
very sore and I get very tired. Is this normal? Is the tiredness
from the condition or maybe from the meds?
Any information or advise is greatly appreciated.
Debbie
I did the colon cleansing on my own. I just read the directions on the
internet and did it. The ear coning was done the first time by a friend,
then I did it by myself the next time.
Ks Di
There are a number of good programs for voice recognition software,
and I bet your local school would have such programs and recommend a
good one. My eldest son, has always looked written poorly, only in
taht his hand could never keep pace with his mind. Being extremely
gifted, his inablity to write legibly was affecting his grades and
confidence. The school recommened this software, and after a few
hours of programing his voice, he was well on his way.
The expense can vary, so like I said,, i would seek recommendations
if possible before forking out the cash on just any one.
Good luck,,,
Sharron
I had a web site marked in my favorites on things to eat or not eat
when you have psoriasis. It is really helpful because it talks about
foods that help or hurt the inflammatory process;
www.healthtalk.com/psoriasis/programs/11_378/pageof.cfm I know
that is really long and I don't know if you need all of that address
to get to the site or not. Just wanted to pass this along, Susie
---Hi Sue. My appointment went well. I got 16 trigger point
injections. In my neck, shoulders, underarms, lower back, and my
thighs. They are hard to take but sure do notice a difference in how
I was hurting. He upped my dose of arava and continued me on
predinisone but will start tapering it off in 2 weeks. I see him in 1
month to see how things are going. He said I am a good canidate for
some of the biologics and maybe the methotrexate, we will see if I
need to go there or not. He is a great doctor and I am so blest to
have been recommended to him. It is a long way to go to see a doctor
but there aren't any in the town i live and it is so worth it when
you can tell he knows how you are feeling and really wants to help
you. He is just amazing. Thanks for writing, Susie
In all the things I have tried over the years....only one thing really
worked for me. That is the pellatized (time released) minocin. I tried about
everything people told me about and was under a rheumatologist care for 8
years.
Nothing worked well until I went to a doc who specialized in antibiotic
protocol using Minocin. I have been pain free pretty much since 2001. I stay
on
100 mg minocin three days a week. Feel good, energy is back, no more joint
damage. Life is great and I highly recommend this protocol. Martha
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hi orin,
i second your aye (aye, aye!) lol
karen
--
hi sharron,
around january/03 up to and including may/03 i started seeing a
naturopath weekly - in december/02 my rheumatologist wanted me to
start mtx and after researching it, i got very scared and 'ran
away'.... i didn't visit my rheumatologist for 6 months. meanwhile i
went through testing for food allergies and the like, started on many
types of homeopathic remedies, etc. ibf (insert brain fog) - i can't
remember off hand exactly what i was taking but quite a few things.
unfortunately, my flares continued and my pa became so bad i could
barely walk and had to stop working. in june/03 i finally went back
to my rheumatologist who took one look at me and said "karen, you are
in trouble". i started mtx (which didn't work), was already on
plaquenil (from previous year) which also does not do much, and am
now on gold injections. the disease continues but i am not in as
much horrific pain as i was during the spring of 03.
i realize this is only my experience but i thought it might be useful
in providing balance i.e. both sides...
good luck,
karen
i realize this is
Hi Harald the Italian Minocin is indeed Minociclina Cloridrato.
Now the big question how often should I take it? The three times a
weeker or the daily intake?
Ros, I developed my first nodule on my knuckle before I reintroduced
Minocin in place of generics. What shall we do about the nodule(s). I
believe. they come and go. I am hoping for the 'go' part.
Ken.
Hey
I'm starting to have a lot more problems with my left hand now and I was
wondering if anyone had any helpful suggestions for either typing or
voice-recognition software that could help me out when it's bad. I think I
could probably get some help with typing up through the university, but for
all their efficiency I'm not sure it would get done soon enough.
Jo
congrates !!!!
Dave & Skana <gynot@...
Hi Jen,
All the best with your plans to start a family. I'll just give you a brief
rundown of my own experience. I'm almost 37, diagnosed 10 years ago at 26. I had
been on a couple of the lower-end medications but they really didn't help that
much. I got pregnant at 29 and went off the meds I was on (a NSAID and a sulfa
drug) immediately. It seems like everyone's experience is different, but I had a
fantastic pregnancy. I'd say my PA was 95 per cent in remission. I felt better
than I had in years. I gave birth to a healthy baby boy (the light of my life!)
and the remission continued while I was breastfeeding exclusively, for six
months. I continued to breastfeed when I returned to work at that point, but as
our nursing lessened, my symptoms returned with a vengeance. I ended up on
plaquenil, which is not contraindicated for nursing but which turned my milk
bitter, so that part of our relationship ended, unfortunately, when my son was
about 15 months old. The plaquenil didn't do a thing and I
went from there to methotrexate, which also did not help. It was very hard
caring for a little one while coping with chronic pain, but it was worth it. As
a last resort, my doctor put me on Enbrel nearly four years ago, just after it
was approved for prescription here in Nova Scotia, Canada, and it has been the
miracle drug for me. I have felt fabulous ever since. My husband and I started
trying for another baby about 2 1/2 years ago, to no avail it seemed. However, I
am now pregnant. Yippee. I stopped Enbrel as soon as I suspected I had
conceived, as recommended, and I am now about 10 weeks along. The nausea has
been pretty bad, along with the food cravings, and just in the past week or so I
notice my wrists and hands becoming stiff and sore and some days I feel pretty
old to be having another baby. I'm hoping another remission will kick in, and
that I can keep it going afterward through breastfeeding (I'll have one year of
maternity leave this time) -- it was one of the most
amazing (but at times difficult) parts of motherhood and well worth the effort
for mother and baby.Discuss everything with your doctor and don't be afraid to
ask questions -- that's usually the only way you'll get answers! I'm wishing you
all the best, and wishing the same for myself.
Skana
Dear Mary, I don't know any doctors in your area. I just wanted to write to
wish you good luck with the new appointment. I think this time it will go
better for you because you already have a diagnosis from another doctor.
Even though rheumatologists have egos like all other doctors, he will be
hesitant to throw out the other doctor's diagnosis without thinking twice
about it. If he does say it's all in your head, then I would just walk out.
I would tell him that since he thinks your illness is all in your head, he
can pretend the bill for the office visit is all in his head! Hopefully,
you'll be fine. I'm sure your current doctor wouldn't' send you to someone
who he doesn't like, or he thinks will disregard his opinions.
Good luck and let us know how it goes. I'll be thinking of you since we've
all been there with lousy doctors from time to time. It's time you got a
break and got a good doctor. Hopefully, this is your time. Love, Fran
Hi, You are not alone. I have been on Minocin for 2 years and my legs also
bear the blue
marks. That doesn't stop me from wearing shorts. If anyone asks, I take it
as an opening
to let them know about A/P, Th 1 diseases, photosensitivity and blue marks on
legs. Better the legs be blue and I feel well than have spotless legs and be on
my death bed. That was my option two years ago. Glad I chose A/P. I am in
remission now. Dolores
janielamoore <janielamoore@...
I haven't posted here in a while - but many of you have helped me
before.
Been on Minocin 2 years 2 months now. Doing really well.
Dose is 200 mg daily pelleted capsules brand.
Here is my problem: I have developed blue bruise-like patches on both
legs - present for about a year now. Can't wear shorts/skirts.
I read this can happen with long term use.
Does anyone else have this and what can be done
Thanks for your help
Janie
Hi Sharon,
I used to take Methotrexate, Folic acid & Mobic. For more than 2 yrs. now, I
have been on a detoxification program. I did coffee enema everyday but starting
this Feb., I have been doing it every other day. I had colonics about three
times. I take 6-8 glasses of fresh juice (apple-carrot, pineapple-banana, etc.)
everyday. I also do skin brushing.
Thank God, I'm feeling fine. I still feel pain on my shoulders especially in the
morning but when I do my stretching excercises, I'll feel okay.
I'm happy for you,Sharon. Best wishes.
Mafe
Sharron <sharron@...
hi all
I was just wondering about the experience of anyone who has
undertaken a thorough cleasing.
As part of my stop smoking program, I am seeing a Homeopathic
practitioner to assist me with the cleansing. In addition, I am going
to have a colonic irrigation ( sounds yuck eh?) and ear candleing.
anybody out that been down this road? Any success with homeopathy?
Brightest blessings to you all
Sharron
Good luck with your appointment, I do not understand how anyone can be told that
this
disease is "all in their head" with so many physical attributes involved! Stick
to your guns
and be confident in your understanding of what you have and what you need.
If I had to see a new doctor tomorrow I know that I would insist that he or she
understand
that I have PA and that they will treat it aggressively. I truely believe that I
would not have
as much damage to my joints right now if this had been properly diagnosed from
the
begining.
Tom in Anchorage
impromptu poll; who all would welcome David back to the group say aye.
aye Orin
Ken,
If the UK capsules say Minocin and Wyeth
Pharmacueticals, and if their content is pelleted
instead of powdered, then I would guess that they
are the real thing. Please provide the exact
cost, since some of our members may wish to
purchased by mail order from the UK, thereby
saving hundreds of dollars per month.
I am more concerned about the Italian capsules,
since "capsule rigide" would indicate a hard
capsule and a non-licensed generic. I would guess
that the label states Minocycline Hydrochloride, not Minocin.
Sincerely, Harald
Does anyone else have problems getting their enbrel from Caremark?
It is like pulling teeth. I always miss dosages when it is time to
refill prescription and they are just so hard to deal with. Sorry
I just had to vent and wanted to see if anyone else was experiencing
problems.
Joy
I was switched from Medco to Caremark this January do to BCBS change over. What
a mess it has been. I have been on the phone so much, my ears hurt with
Caremark. The people you are supposed to contact for "special drugs (i,e,
Enbrel) are NEVER there to answer the phone, so you leave a voice mail and NEVER
get called back. I thoroughly dumped on some young gal who had no control
whatsoever, but she contacted a supervisor (I was not allowed to speak with the
supervisor!!) and promised my Enbrel would be delivered Tuesday. God I hope so,
since I will be out and leaving town on Weds. I am very seriously considering
contacting my State Insurance Commission. This is the most awful situation I
have ever encountered for getting a prescription filled!
From now on, I am taking very detailed notes of everyone I talk with, what they
say, times, etc.
So, yes Joy, I agree with your frustration! Linda in Poulsbo, Wa.
As with most of you of this board, I have been through
so many doctors that told me that the pain was all in
my head because they didn't know what it was. Mine
and my husband's cardiologist is also an internist and
he's the one that finally diagnosed me after I broke
out with P. He hasn't done much for me except treat
the pain but that's more than I had before so I've
been thankful for that. I've been asking him for a
year to prescribe Enbrel and I finally realized that
he was afraid to because he didn't know enough about
it so he's referred me to a rheumy.
I used to be so excited to have an appointment with a
new doctor because with a new doctor came the hope of
an answer. After I went to that doctor I'd always
leave crying because once again I was told that it
must be in my head and no matter how hard I tried to
convince myself that it was in my head I couldn't make
it go away. I haven't been to another doctor in a
couple years and I was excited because I thought that
this was it. I was finally going to be put on Enbrel
and this was my chance to feel better. Now the
appointment is Monday and I'm scared to death. I'm so
afraid that I've been referred to a bum doctor and
he'll tell me once again that its all in my head.
Anyway, my question is has anyone heard or gone to Dr.
Zashin in Dallas? I know that this is short notice
but my appointment is Monday so please respond quickly
if you can help me.
Thanks,
Mary
I found this Ankle Brace Quarter sock by New Balance very helpful. I also have
a swollen ankle and heel and it help me a lot. This is what they say about the
sock. This product was specifically designed to provide the optimal level of
compression at the Ankle and Arch resulting in Ideal Support and Comfort for the
serious athletes or the weekend warriors. This patented design will help reduce
the risk of Sprains and Strains by providing Support and Stability to your
Ankles without restricting movement. Athletes have also experienced pain relief
from common foot problems associated with overuse." - Dr. David Shaffer DPM
They are expensive but will worth it. There are many sites on the internet that
sell them. Just Google it for Ankle Brace Quarter. Hopes this helps.
Margaret
hi kathy ~
we're going to miss you!!! thanks for letting us know - i hope the
business trip is a great success.... (please don't overdo it... ok?)
(((hugs))), love karen
Dear Kathy, Have a safe and fun trip. Come back to us soon as we will all
miss you. I know we all don't say if often enough but thanks so much for
what you do. I know for a fact that this takes a lot of your time. You are
our hero.lol. Be safe. Love, Fran
Hi All,
I'll be away on a business trip starting on Tuesday - Sunday so if the list
is a little slow, please bear with the other moderators.
Wishing you all wellness,
Kathy
Debbie, Sorry to be so long is getting back to you but I am not here much
on the internet while hubby is finishing chemo/radiation. Just a fluke I
checked the email finally! To answer your question, it is LDM100. You can
do
a search and it is an item easily ordered on the internet now. At that time
years ago, it was not a really known item. I don't know that this would be
something for long term. In fact, I might be afraid to do it long term but
for a short term problem, it has been a lifesaver for me.
That said, I picked up a terrible bug a month ago and have really been
fighting it. So MANY nasty ones out there now. I also resorted to a product
back to the days when I was being actively treated for SD in Texas. At that
time, I had found many patients there who used "Miracle Soap." I have not
been without it since, ordering it from a little store in Tyler, Texas when I
need it. At the time, I also bought Miracle Neutralizer and used 6-9 drops a
day in water. Then time passed and I quit using this. After this bug hit
my lungs, I went back to the Miracle Neutralizer and my lungs are clearer than
they have been in a long time and I have expelled so much phlegn which
apparently was really a problem. You might try googleing Miracle Soap and see
the
off products at that site. This product, like so many supplements, has been
practically shut down and panned and criticized, many of which you will see
there; however, those critics don't care about my health or pay my bills and
I really do like this. If you cannot order this and want to, let me know
and I will find the phone number for the place that mails it to Montana for me.
As an aside, if you ever use the Miracle Soap, you probably won't go back
to another one.
I hope this helps. Write again if you have another question. I will
try to get better at checking this site again. Life got a bit complicated
there! Sandra
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hi pete,
what a wonderful e-mail... i'm going to forward it to my personal e-
mail so i can save it to re-read some of your tips on those 'bad'
days :)... i'm right there with you regarding the warm baths....
part of my daily routine and so helpful... exercise as well, when i
can...
thank you so much for sharing,
best, karen
Hi Jean, Good for you for insisting on being treated with A/P. It is your body
and you
have the right to be treated the way you want. I am not from Atlanta, but you
will find
out from others that Atlanta is not much different than any other city when it
comes to
scleroderma support groups. When I first went to my monthly support group, I
was the
only one on A/P. I was, of course, disappointed! then it struck me that
since they knew
nothing about it, this would be a great opportunity to teach them. I started
a year and a
half ago. It was slow going at first, but when they saw me getting better and
better and
they weren't, the interest change. We get new people every month and I never
miss an
opportunity to speak about A/P. I had another lovely session last night at
the meeting. These folks are now all my friends and thirsty for more knowledge.
I never go to a meeting
without information about A/P. I am their living testimony. The response has
been fabulous.
Don't give up on them. Learn from this site, the RBF site and google
everything you can re:
Minocin, A/P, and any other protocols out there. Check out labs that do this
type of research like Dr's Garth and Nancy Nicholson in Ca. Read the books by
Henry Scammell and Dr.Thomas Macpherson Brown. The internet is full of info.
Share it with those who don't know and think of it as a great opportunity for
yourself and others. It's the greatest thing for your own immune system to know
you are helping others live while healing yourself. Good luck, Dolores
jeanhoward15 <jeanhoward15@...
I was recently diagnosed with scleroderma. My rheumatologist
prescribed 100 mg of minocycline twice a day 7 days a week. She does
not believe in using anti-biotics, but agreed that no harm would come
if she humored me.
She is an excellent rheumatologist, but definitely does not believe in
antibiotics.
Is there anyone out there in the Atlanta area who is on AP & has a good
doctor to recommend? I would love to talk to someone in Atlanta area
who is going through same experience. I went to scleroderma support
group but everyone is on "heavy" drugs and traditional treatment no
talk of AP.
Thank you,
Jean
Call Dr. Robert Franco at 951-788-0850. His nurse is Vicki, at
extension 23. Best wishes. Linda
My only expertise is DEALING with this disease 30 years, so my
experience could be different from yours...
When I have pain, back, hands, feet, whatever, a really hot bath
with bath oil such as alpha-keri type, first thing in the morning
helps. It is CALMING. This also is a huge help in staying warm and
avoiding dry skin. I usually follow this with very mild exercise of
whatever hurts. Of course, I start the day with pain meds before
bath to give them a chance to work. I usually plan a few times a day
to nap or break, to deal with the pain and schedule the rest of the
day according to what can be done.
Afraid of needles?? If the pain is not as bad as the needle, why
bother?? If the pain is worse than needle, stop being a big baby. I
remember having trouble swallowing pills. It seems much worse to
choke on a pill than to get a skin wound you can hardly see.
RIB PAIN and "closing in"// "closing in" sounds like psychologic
trouble more than PA. Although I found low O2 blood sats to give
that feeling/ you know , shortness of breath, rapid heartbeat, chest
pain, sweating. Whatever the cause of the symtoms: low cardiac
output, low red blood cells, panic attacks, pneumonia, I have had
all of them. I also had costochodritis with nasty chest pain and
twinges and recurrant chronic pain for several years after CPR. The
cracked sternum didn't help. This pain largely subsided after I
started ENBREL. Strangely, after avoiding exercise for years, I
found my back, chest, and hip pain were more tolerable AFTER
exercise combined with hot baths, pain meds, and SOLOFT. The
exercise benefits are long term and slow to realize. The pain
immediately after exercise only lasts a day or two for me. Years
ago, instead of Soloft, VALIUM worked the same way for me. WORRYING
TOO much about the pain made the PAIN more important. Living and
continuing to move and get stuff done, with breaks to deal with pain
is better. Besides, it makes the remissions more enjoyable, since I
maintain strength and feel in control.
When I have pain from shoveling snow or a long walk, I know the
cause, the course of the pain is predictable and therefore more
tolerable.
For balance, I should mention that my knee, hands, and feet get
worse with exercise but the trade off of FEWER sharp, stop
everything (including breathing) pains from back and hip are worth
the stiffness. Before ENBREL, I was on the path to wrist surgery and
back surgery. Now these are not in the plan and the wrist braces I
wore for years every day are sitting unused, even after I shovel
snow.
We tend to think of the mind and body as separate things, but
Soloft, paxil, prozac, valium and others are a valuable part of
treating chronic pain as well as chronic itching. Chronic itching is
draining and makes the pain less tolerable. I spend an hour a day on
skin lesions during breakouts. It helps your mind to take care of
the skin. If you can live without the FEAR of the next bad pain, the
next big breakout, it frees up a lot of wasted time and energy. It
helps you stay in control.
SIDE EFFECTS--On a standard dose of Soloft, I slow down and stop,
like my feet slowly become heavy. I cut the dosage and found a level
that keeps away the panic and spasms without feeling glued to the
floor. At night, lower than standard doses of temazepam and soma
work for me, but not good enough, so I am still experimenting to
find a regimen that allows sleep AND lets me get up when I want to
get up.
Think of the meds as being like alcohol. The effect and side
effects are DOSAGE related and fairly well understood. I take my
meds at times when I can deal with the side effects which are fairly
predictable in timing. The disease flareups are the unpredictable
part. But the more you deal with, the more you learn to deal.
STAY WARM, even sweaty when you can. Gloves are a big help in my
snowy area. Cold seems to increase finger swelling for me. Get some
sunlight every day.
Are you MISERABLE and no one wants to hear about it? I find holding
a CAT and hearing her purr is almost as good as a hot bath. I was a
dog person for years, but cats are lighter and easier on my hands.
And they don't bark.
HEY// HOW do the rest of you deal with the bad times??
Pete from Baltimore
Hello all, I have only lurked for a few days. I'm trying to find out
as much information as possible as I was told I have PA last week,
waiting for the Rheumatologist to confirm next week after x-rays,
blood test results etc.
My first appointment was a bit of a blur, he told me I had pitted
nails felt my joints and then told me I had PA and he then proceeded
to tell me about PA and to be honest the information went in one ear
and out the other as I was expecting him to say my joints are sore
from playing sport etc.
My PA is very mild, he put me on Mobic and the tenderness and
stiffness has somewhat gone from my fingers, though my ankle is
still sore.
I have had Psoriasis since I was a child. Mum told me she actually
thinks I was born with it but the doctors told her it was eczema. I
don't class my psoriasis as severe. My psoriasis is there all the
time and doesn't respond to medication, but is limited to my elbows,
scalp, face and lower back so I count myself as lucky, though for
how long I'm not sure it seems to be flaring a lot and spreading.
I'm 25 and live in Victoria Australia
Regards Kylie
Lissa,
Dr. Franco is in Riverside, CA and it is definitely worth the trip to see
him, from what I've heard from many in the group. Does anyone have Dr. Franco's
contact information?
Emma
**************************************
Check out AOL's list of 2007's hottest
products.
(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)
I wanted to suggest that for the time being while your husband is on Metho,
he should be on at least 1 mg of Folic Acid a day except the day of his shot
<or pills
fatigue, mouth sores, etc..
Before you go for the shot of Enbrel, I was wondering why no one has
mentioned trying Arava? It is a pill you take once a day and it is very strong
and
works well for lots of people. The one proviso is that you need to protect
your stomach by getting prescriptions ahead of time for things such as Nexium.
Otherwise stomach pain and possibly ulcers can occur.
Good Luck to you and ask the group questions any time.
Michelle S.
group founder
Hi all,
Noticed you were referring to David's posts and wanted to let you
know he has a website: www.elfstrom.com where he has posted some
medical articles with his ideas.
best,
Marti
Hi Jen,
All the best with your plans to start a family. I'll just give you a brief
rundown of my own experience. I'm almost 37, diagnosed 10 years ago at 26. I had
been on a couple of the lower-end medications but they really didn't help that
much. I got pregnant at 29 and went off the meds I was on (a NSAID and a sulfa
drug) immediately. It seems like everyone's experience is different, but I had a
fantastic pregnancy. I'd say my PA was 95 per cent in remission. I felt better
than I had in years. I gave birth to a healthy baby boy (the light of my life!)
and the remission continued while I was breastfeeding exclusively, for six
months. I continued to breastfeed when I returned to work at that point, but as
our nursing lessened, my symptoms returned with a vengeance. I ended up on
plaquenil, which is not contraindicated for nursing but which turned my milk
bitter, so that part of our relationship ended, unfortunately, when my son was
about 15 months old. The plaquenil didn't do a thing and I went from there to
methotrexate, which also did not help. It was very hard caring for a little one
while coping with chronic pain, but it was worth it. As a last resort, my doctor
put me on Enbrel nearly four years ago, just after it was approved for
prescription here in Nova Scotia, Canada, and it has been the miracle drug for
me. I have felt fabulous ever since. My husband and I started trying for another
baby about 2 1/2 years ago, to no avail it seemed. However, I am now pregnant.
Yippee. I stopped Enbrel as soon as I suspected I had conceived, as recommended,
and I am now about 10 weeks along. The nausea has been pretty bad, along with
the food cravings, and just in the past week or so I notice my wrists and hands
becoming stiff and sore and some days I feel pretty old to be having another
baby. I'm hoping another remission will kick in, and that I can keep it going
afterward through breastfeeding (I'll have one year of maternity leave this
time) -- it was one of the most amazing (but at times difficult) parts of
motherhood and well worth the effort for mother and baby.Discuss everything with
your doctor and don't be afraid to ask questions -- that's usually the only way
you'll get answers! I'm wishing you all the best, and wishing the same for
myself.
Skana
Hello All,
The last 6 weeks have been very frustrated. My husband is 40 and was
in good shape & health. He turned his ankle and experienced some pain
and discomfort. His PCP suspected gout and treated him for that with
indocin. Some releaf of pain but lots of inflammation. Went back
after the holiday with minimal improvement and PCP took more blood
work and sent him to Rheum. The pain now went from the left ankle, to
the right ankle & right wrist...to the point where he was unable to
walk. Rheum diagnosed him with PA and put him on 40 mg of Prednisone
and cortisord shots in left ankle and right wrist.
After 2 weeks with minimal improvement, he's now on Methotrexate.
Rheum says it takes 4- 6 weeks to kick in and really 10-12 weeks for
results. We're in week 6...he's on 20 mgs/wk of MTX and 10 mgs of
Prednisone and not really getting better. We go back in 3 weeks if we
can hold on that long. The Rheum indicates that if the MTX does work
we'll start on Enbrel.....is this normal? We are getting very
frustrated with the lack of any significant improvement.
[Editor's Note: Your rheumy is spot on - MTX does take 6-8 weeks to kick in and
if you are going to benefit from it, you probably feel its benefits in a big way
by week 12. If you don't feel it by then, it probably isn't the right
medication for your husband. It is very common these days to move to Enbrel if
MTX doesn't work - but in part that depends on your husband's health insurance
company. In any case, Enbrel often works when MTX doesn't. If Enbrel should
fail, too, fear not, there are many other wonderful medications out there. Good
luck. Kathy F.]
Hi Susan,
I probably missed you before you left for your Dr. appt. wow, your Dr. office
must be far from you. Mine is about 40 miles away.
I use to hate needles-I couldn't understand how anyone could give themselves
shots, even a blood test was awful. My daughter who is 15 years old gives me my
Enbrel shots. I haven't been able to take any for a month because of an awful
bladder infection. Boy do I miss it. My hands are so stiff, my skin is so
dry-when I was on Enbrel my skin was as soft as a baby!! Even my feet. I had
more energy, now I sleep most of the day. Anyhow go with what you think is best
for you.
I will be thinking of you. God Bless, Sue.
Susan <quirkygirl98815@...
I am seeing my rheumatologist on Friday. I am leaving today to travel
there. He is in a different town. My question is does anyone have
some suggestions for me. I am currently taking arava for pa. I
started it last June. I did notice it has helped with pain in my
knee, hips and elbows. I started have pain again in those area's
about the first part of December and since has progressed to my
spine, right shoulder blade, under right arm and my hands and feet.
Besides taking meds for the pain, it seems like other people have
relief from fatigue and just that their quality of life is better. I
see that some people take the disease modifiying meds and also the
biologics. It seems like people have great responce with injectable
medications but I am affraid of those. I was just hoping to have some
opinions from some of you before I saw my doctor. Thank you for you
replies, Susie I wanted to thank Mickey for his reply to Jennifer.
I liked your discription of our disease being there one minute and
gone the next. There was good information in your post. thanks
hi dove and laurie,
i have exactly the same thing... that can't sit still feeling -
happens at night for me. i also have very sore ribs. the odd thing
about all of this is that i am NOT on mtx - i was, but haven't been
on it for about 6 months now - it was not helping, had debilitating
fatigue from it, and also a cough... i do have restless leg
syndrome as well as fibro and myofascial pain syndrome... i had
been assuming this was what was causing that fidgety feelings...
i'd be interested in seeing how many others out there have the same
thing, and are either taking or not taking mtx...
take care both of you,
love, karen
Hi Lisa;
I can just imagine how rattled you are right now.When I was diagnosed
with Scleroderma my first thought was to kill myself.After a while we
get into fighting mode and look for answers.You are doing the right
thing in changing your diet.A good rule of thumb is "nothing white" such
as sugar,flour,potatoes etc,etc.Have you been checked for celiac disease
that may be the cause of your RA? You can read up on that at
www.celiac.com There is one thing that you said that makes me wonder if
you may not have Sarcoidosis and not RA.Nodules in the lungs at such an
early stage is definately not common.read www.sarcinfo.com and see if
that makes any sense to you.I can tell you for sure that antibiotics
help tremendously.I was told I would be dead in less than a year.That
was 8 years ago and I am in remission.It is a constant fight to stay
there but it is feasable. Lynne
Hi Shar,
A rheumatolgist is the appropriate dr for PA, So it's great you got
to one. The quick diagnosis is slightly suspect, because PA has no
definitive test and while it may seem that you have all the symptoms,
the same symptoms could be caused by many other things. Hopefully
your GP has ruled out many other possibilities. If not, perhaps you
should have some things ruled out before beginning treatment of PA.
But, I would certainly continue seeing the rheumy. Voice your
concerns and at least learn about what proposed treatments he/she is
considering for you. Most rheumys will start with NSAIDS, if your
are experiencing pain and/or swelling, these can be a first step to
helping you be comfortable, albeit if you have PA, NSAIDS will only
be a temporary fix. Longterm treatment should address the cause as
well as the symptoms.
Stay Well,
David
I had a really hard time quitting smoking until I got pregnant. I was sick
24-7 for six months. I never smoked another cigarrette!
If pregnancy isn't an option, check out the latest program with your doctor.
My friend just had good success with starting an anti-anxiety drug two weeks
before her "quit" date. There needs to be some sort of emotional program or
support group as well. The American Lung Society has an on-line program and
support group.
Good luck.
Ks Di
Sandra....I read a few weeks ago a post from you regarding something to aid the
lungs ...I believe you mentioned it had been sent to you from Maureen Taylor, DR
W's patient. I have been contacted re SD lung issues by someone on the BB and I
remembered your post...could you post that product info again...sorry, I only
remembered that it was you, one of us, old timers here on the BB and that it
came from M. Taylor. Thanks much, Debbie
For those new to the disease,
Psoriasis lesions and joint inflamation come and go for a variety of
reasons, with or without medication. The timing can seem random. So
here is the problem. If it gets better, was it the medicine or just
coincidence? If it stays the same or gets worse, what would it have
been without the medicine?? So good meds can seem bad and quack
cures can get lucky.
All this assumes that other diseases and meds aren't also confusing
the picture.
I think that is why some doctors wait too long, sticking with a
medicine that worked for some other patient and not you.
I have tried a number of treatments over THIRTY years. The regimen
that works for me is less effective for my son. My mom doesn't use
much medication and just LIVES WITH the pain and deformities.
I try everything, and dose according to what seems best.
For me, long work hours, physical activity, winter (both cold and
less sunlight), depression, problems without solutions, all cause
more sores and more joint problems even WITH all the medicines.
Medicines include steroids, enbrel, methotrexate, topicals, coal
tar, and pain meds including percocet, celebrex, soma, and on really
bad days morphine. I can go from skipping meds because I feel pretty
good and exercising one day and be in the emergency room the next. I
go to the ER when I can't get up off the floor. I rarely stay
bedridden for more than a few days, but I have gone months without
relapse and months without working.
So if you haven't found a cure on your first year of doctor visits,
welcome to the club. Training a good doctor and planning your
interactions are your new hobby. Hoarding meds and prescriptions is
your new hobby. I am happiest when I have enough left over pills to
feel like I have at least some control over the next crisis, and can
try adjusting meds while waiting to see the next doctor.
So what is more depressing, how bad some people get or how lucky
some people are? One more thing--if you have a remission, store
those meds and braces, because the day could come when you need them
again. You have a spare in your car, don't you?
Just remember, remisions do come, and you will find that some meds
help.
Pete from Baltimore
I am seeing my rheumatologist on Friday. I am leaving today to travel
there. He is in a different town. My question is does anyone have
some suggestions for me. I am currently taking arava for pa. I
started it last June. I did notice it has helped with pain in my
knee, hips and elbows. I started have pain again in those area's
about the first part of December and since has progressed to my
spine, right shoulder blade, under right arm and my hands and feet.
Besides taking meds for the pain, it seems like other people have
relief from fatigue and just that their quality of life is better. I
see that some people take the disease modifiying meds and also the
biologics. It seems like people have great responce with injectable
medications but I am affraid of those. I was just hoping to have some
opinions from some of you before I saw my doctor. Thank you for you
replies, Susie I wanted to thank Mickey for his reply to Jennifer.
I liked your discription of our disease being there one minute and
gone the next. There was good information in your post. thanks
Hi Heather
I know how difficult it is to quit smoking. Tomorrow February 4 it will be
13 years that I quit. Best thing I ever did and hardest. I could not believe
the difference it made for me. I did gain weight, but finally two years ago I
managed to take it off.
Take one day at a time. I will gladly be here for you, even if you want to
email me privately.
Barb
Hello Groups
I was searching internet for a natural pain killer for
Rheumatoid arthritis pain. I have SD but I am in pain
for two months. I found a natural medication for RA
pain called Rhumatol. I would like to know if any of
you has tried Rhumatol and if you did how usefull it
was for you.
Thank you
soheila
Dear Heather,
Im thinking from what you have described you should get a second opinion.
Medication can do some strange things to us and you could be having a bad
reaction to something you are taking for arthritis. I cant believe he
hasnt wanted you to get a head CT or see another specialist. Does he have
any solution to your problem? Ive had a lot of side effects from drugs and
a lot of them make you feel spacey, but you didnt even mention you think it
s related to a drug. Try and get checked out by another doctor to just be
safe. Just my opinion. Take care, Fran
*
Hi Everyone! I saw my Rheumy last night and he said he thinks I
have been having "vascular constriction". I have had a few episodes
where I became "spacy" and could harldy hold my head up. There was
no pain, just a feeling like my head was too heavy. Does anyone
know if this is the same as vasculitis? I was hospitalized with
that in September, but this feels different. He told me that I
absolutly have to quit smoking - so much easier said than done.
Any info/advice would be appreciated.
As an FYI, after reading all of the posts on Sed rates I asked him
what mine was. He said he wasn't even going to bother to look
because it didn't matter. All of the medication we take lowers sed
rates. He also said that if he was only going to treat people with
elevated sed rates he would be out of practice very quick.
Heather
Thanks for your response. Do you live in England now? Linda
Sounds like "fundamentalist science" to me!
Denise
Hi Jen,
I know last June I saw a specialist - Professor of OBGYN and for that reason,
having PA and wanting to achieve pregnancy. Although studies have been limited
they believe PA patience go into remission during pregnancy but will experience
a flare post delivery. If you have questions or concerns you may want to ask
your GP to send you to a specialist that deals with women and high risk
pregnancies. Could answer many of your questions.
Good luck and I sincerely wish you all the best in achieving pregnancy!!
Sincerely
D
Jennifer Reoch <misty_tenor@...
Just a warning for you gents who don't like or are squeamish about
girly topics! :-)
Right now I'm only taking Plaquinil for my PA. It's not really
working at the moment but I'm hesistant to upgrade back to the DMARDS
because at some point this year I'm going to be starting a family.
Has anyone experienced pregnancy and PA/meds? I don't see my doctor
til next month, which is when I'll ask all the pertinent questions,
but I wanted to get some feedback from you guys in the meantime. I'm
not sure if I'll be able to stay on any meds while pregnant.
Also, I remember a loooong time ago someone once telling me that
pregnancy would throw you into remission, thereby negating the need
for meds. Is this true, or just a false hope?
Thanks!
Jen R
Hi Laurie,
I'm on methotrexate and I too always feel like my ribs are being crushed. I want
Enbrel but must complete the metho therapy first, it's not working and all it
does is make me feel ick! My husband constantly teases me that I'm so figity and
I cant stay still. I completely know what you mean.
I'll hope we be both get some relief from our ribs!!
Take care
momlaurie87 <tilly@...
I am on methrotroxate, waiting to be put on enbrel, everytime I
took the mtx my ribs hurt so I take predisone with it, now I feel
nuts, I can't stay still like my muscles are closing in on me, I
almost feel paniced about it so they are putting me on paxil, seems
like everytime you take something they put you on something for the
side affects. Has anyone had where they can't stay still like your
trapped in your body, they say the paxil will take a few months to
work. I don't want to wait a few months, and I don't want to take
paxil, I hear there are bad side affects with it too.
Laurie
Sincerely,
Dove
I just want to say that I have lived in England, which has real
socialized medicine (that's where doctors work for the state, which
is not true in the other countries that have a different form of
single payer healthcare--i.e., publiclly funded but privately
delivered). In England everyone who worked for the NHS that I dealt
with was always polite and wonderful.
Linda
As one of Dr Sentifs early patients....and very successful at that....may I
be so bold to offer a few suggesions. After years of being on Minocin..and
also getting others to try it, here are a few hints. If you are currently
with Dr Sentif make a list of all questions to take with you at your
appointment. If you have a complaint about the staff TELL HIM. He is very
busy as we
all know, but I do not think he is the type to tolerate rude behavior from
staff and needs to know. Constant complaints about an employee from several
patients will definitely get his attention. Also consider that it just may
have been a bad day for that employee. Try to be as pleasant and courteous as
you can..."I know you are so very busy and I really hate to ask for help, but
could you possibly.......?' Courtesy and understanding go a long ways to
get what you need, remember these people have been listening to patients all
day and when people are scared and hurting.....THEY CAN BE CRABBY!!!!
Also as one who has been on this protocol for many years may I offer a
suggestion to those who are not yet patients. You can still get on Minocin
by getting a prescription. You can take the doctor any of the books on the
protocol and let him read up. This is probably only good on a new doc who is
just starting practice and has the time to read. When my old doc retired I
found a new office going in down the road. Shortly after he opened I
stopped by and introduced myself, had my records from Sentef and a copy of the
book "The Roadback". A copy of my years with the rheumatologist where all my
damage occured. He was stunned at how great I was doing and has since given
prescription to my daughter and others who have asked. He is Dr Mark Watson
in Nashville, Tennessee. He is glad to prescribe Minocin for me. He is not
into the overall protocol like Sentef, but my daughter has done fine on her
own and if you are willing to try the protocol by yourself you may find you do
just as well. I have found both general practitioners and internasts are
fairly open to this protocol. Just make sure you get the time-released
minocin.
Many people just go online to overseas and get it without a prescription.
This is also a possibility.
I believe I would have done fine on my own even without Dr. Sentef,
but when you are new to something it is comfortable to have a doctor keeping
tract. This is especially true if you have other medical problems that may
be affected. A couple of times I have come out of remission and had to up my
minocin dosage for a month or two. I have always been able to get myself
back in remission. I am comfortable with the protocol and with the minocin
which I used to have minor side effects, but now my body is very used to it and
the RA is gone. I still take 100 mg mon-wed-friday. I have not been to
Sentef in many years. My daughter does well on her own.
You might ask your own Dr for a trial run on the minocin. I do know
Vanderbilt university is doing research with Minocin and Multiple sclerosis.
Word is getting out about these new therapies. If my daughter gets accepted
for the doctorial program at Vanderbilt in chemistry next year.....she will
gladly spread the word to the various department heads on the Minocin and RA.
You just cant stop what works for so many people!! Best wishes to all of
you......Martha
************************************** See what's new at http://www.aol.com
Hi Everyone! I saw my Rheumy last night and he said he thinks I
have been having "vascular constriction". I have had a few episodes
where I became "spacy" and could harldy hold my head up. There was
no pain, just a feeling like my head was too heavy. Does anyone
know if this is the same as vasculitis? I was hospitalized with
that in September, but this feels different. He told me that I
absolutly have to quit smoking - so much easier said than done.
Any info/advice would be appreciated.
As an FYI, after reading all of the posts on Sed rates I asked him
what mine was. He said he wasn't even going to bother to look
because it didn't matter. All of the medication we take lowers sed
rates. He also said that if he was only going to treat people with
elevated sed rates he would be out of practice very quick.
Heather
I am on methrotroxate, waiting to be put on enbrel, everytime I
took the mtx my ribs hurt so I take predisone with it, now I feel
nuts, I can't stay still like my muscles are closing in on me, I
almost feel paniced about it so they are putting me on paxil, seems
like everytime you take something they put you on something for the
side affects. Has anyone had where they can't stay still like your
trapped in your body, they say the paxil will take a few months to
work. I don't want to wait a few months, and I don't want to take
paxil, I hear there are bad side affects with it too.
Laurie
Hi Shar,
I wanted to welcome you. Sorry about your PA-I'm happy you researched and
caught your PA early. I wish I would have done that instead of relying on my
GP.
God Bless, Sue.
schipss <sharsackett@...
I'm Shar, 59 years old, i had my first rhumy appt yesterday. I went
through the xrays and blood tests. She already diagnosed me with
psoriatic arthritis. I'm not sure if I'm sad or finally happy with a
diagnosis. I've had P for 20 years and PA for a year (I think).
Most of my problem is with the tendons in my hands. (Can hardly use
them at times) Just beginning to get involvement in larger joints.
I feel fortunate to have been diagnosed early????? I go back in 2
weeks and she will then put me on something!! I'm apprehensive about
that...as I seem to be sensitive to many other meds in the past.
Don't know what to expect. I happened upon this web site a few months
ago. That is how I self diagnosed myself......after I had been to my
family doctor many times with no success from him. I will keep
reading all the posts and try to become more informed on the various
meds all of you have tried. Thank you for your help.
Hugs to you all, Shar
I'm Shar, 59 years old, i had my first rhumy appt yesterday. I went
through the xrays and blood tests. She already diagnosed me with
psoriatic arthritis. I'm not sure if I'm sad or finally happy with a
diagnosis. I've had P for 20 years and PA for a year (I think).
Most of my problem is with the tendons in my hands. (Can hardly use
them at times) Just beginning to get involvement in larger joints.
I feel fortunate to have been diagnosed early????? I go back in 2
weeks and she will then put me on something!! I'm apprehensive about
that...as I seem to be sensitive to many other meds in the past.
Don't know what to expect. I happened upon this web site a few months
ago. That is how I self diagnosed myself......after I had been to my
family doctor many times with no success from him. I will keep
reading all the posts and try to become more informed on the various
meds all of you have tried. Thank you for your help.
Hugs to you all, Shar
It is a telling situation when doctors who work with antibiotics for RA
etc. are so busy they don't return calls
while the typical rheumatologist is usually available within days.
There are periods where Dr Sentef does not accept new patients since he
is booked three months ahead.
However, things change and if you call at various times you might get
lucky. I got in at March which was a
" slow " period. So, just try at different times
Robert
Just a warning for you gents who don't like or are squeamish about
girly topics! :-)
Right now I'm only taking Plaquinil for my PA. It's not really
working at the moment but I'm hesistant to upgrade back to the DMARDS
because at some point this year I'm going to be starting a family.
Has anyone experienced pregnancy and PA/meds? I don't see my doctor
til next month, which is when I'll ask all the pertinent questions,
but I wanted to get some feedback from you guys in the meantime. I'm
not sure if I'll be able to stay on any meds while pregnant.
Also, I remember a loooong time ago someone once telling me that
pregnancy would throw you into remission, thereby negating the need
for meds. Is this true, or just a false hope?
Thanks!
Jen R
Janet PA can cause the foot to swell, sometimes but I have found
(for myself anyways) and to the extent you are saying that it is
water retention and if I don't take my water pill every day the
swelling/bloating starts. I can gain over 10 lbs just from water in
only a couple of days. I would at least give the water pill a try
and if after a couple of days to a week there is no difference then
you know that is not the problem.
Good luck
Dick
i agree. sentef will see you in his clinic but then you'll not be able
to contact him any other way but in person. many have tried but failed
including me and my friend.
monique
Hi Rose,
Here is our current list for Minnesota doctors.
Chris.
Paul H. Waytz, M.D. RHU 1973
7250 Francis So Ste. 215
Edina, MI. 55435
P: 952-893-1959
Thomas Stillman, M.D.
Hennepin County Medical Center,
Minneapolis, MN.
P: 612-347-2704
Gerald Konkal, M.D.
Allini Medical Clinic
8675 Valley Creek Rd.
Woodbury, MN 55125
P: 651-501-3000
Mark L. Martin, D.O., (IV and oral - will set up home services for IVs)
Physical Medicine & Rehabilitation
Altura, MN 55910
P: 507-457-4328
Email: mlm321@...
Gerald T. Mullin, M.D. IM RHU - 1958
507 Medical Arts Bldg.
324 W. Superior St.
Duluth, MN 55402
P: 612-339-9786
Larry Rapp, D.O.
920 First St. N.E.
Elbow Lake, MN 56531
Hello Group
Does anybody have contact number of Dr. Sentef who is
doing triple antibiotic therapy? I emailed Robert to
ask about it. Didn't get back from him.
soheila
Hi Janet,
So sorry to hear that your trip turned out badly due to your health. I have
a rheumatologist that I love: Dr. Daniel Ricciardi, 200 Clinton Street in
Brooklyn Heights.
Please let us know how you're doing.
Kathy F.
Hello Debi,
We have these doctors listed in Arizona.
Chris.
Paul F. Howard, M.D. (rheumatologist, IV & oral) 1979
Paul Caldron, M.D.
Arizona Arthritis & Rheumatology Assoc., P.C.
9097 East Desert Cove 4-14-04
Scottsdale, AZ
P: 480-609-4200
Offices also in Mesa, Tempe, Glendale
Need to ask for the antibiotic protocol
Dana Keaton ND
5333 N. 7th St. Suite 221 or might be 5702 No. 4th Place
Phoenix, AZ 85014 Phoenix, AZ 85012
Stephen E. Fry, M.D. 1990 started using therapy summer 2000
Microbiology, molecular biology, pathology
15720 Greenway Hydn Loop
Scottsdale, AZ 85260
P: 480-991-4555
stfry@...
Sanford Roth, MD RHU
Arthritis Care & Research
3330 N. 2nd St. #601
Phoenix, AZ 85012
P: 602-234-3444
F: 602-277-9205
I just back back from a cruise which should have been great fun but
turned out to be agonizing. I was in so much pain just trying to
walk aroung the ship. To go into town my husband pushed me in a
provided wheelchair. By the third day of the cruise I could not
recognize my right foot. It was so swollen that it looked like a
whole bologna to me. At that point all I could do was ice on and off
most of the cruise. I came back yesterday and saw my rheumy today.
I am really fed up with him. He kept saying what are you on again. I
told him mobic 15mg and double Enbrel. He told my to reduce the
mobic because it causes swelling and that I needed a stronger water
pill. He said I am filled with water. I just thought my foot was all
swollen from the PA. I told him I was in pain and he just stared at
me with a blank look. I asked to change to remicade and he said my
ins would not pay because it is only approved for rheumatoid A. Then
he said my rheumatoid factor was borderline so lets do blood and I
should call him the end of the week. Meanwhile my foot is so swollen
and I am in pain. Can't my foot be swollen from the PA and not water
retention. Anyway I know I have asked before but would really like
some recommedations of doctors in NYC or Long Island.
Janet
Hi Herman,
I really feel for you and what you went through. I was fired from my job of 20
years because my health "went bad" and no one could find out what was wrong with
me. My whole body hurt-the first joint that went bad was my right index
finger-it is now so curled that it won't straighten out. When it first started
bending I went to my PCD and she said it was gout and to stay away from rich
foods. I saw her roll her eyes at her nurse when I told her that my whole body
hurt-all the joints. Most days I couldn't get out of bed and I loved my job. I
worked through most of the pain-but some days I couldn't. I finally had a
kidney stone attack and had to be in the same hospital that I worked at on a
weekend-that Monday I was fired. I was so lost without my job-not only the
money the social part too. And to be fired when I was hospitalized was awful!!
This happen in 1999. I went with the awful body pain until 2003 when I finally
had enough and called a Rheumy on my own. ( thank God my
husband's insurance lets you do this without a referral) The first question he
asked me when he came into the exam room after he read my chart was do you have
Psorisis anywhere? I told him on my scalp and he told me that I had PA and
started me on pain meds right away. Now looking back I don't know how I made it
through the years of pain-not just the physical, but the mental and emotional.
Even my husband and kids were and still are saying "why are you always sick?"
My husband's cousin from Alabama came a couple months ago-she has PA also and
told them about why we are sick all the time. I hope it finally sunk into their
brains!! It can be so hurtful. I hope you don't mind me sharing...
God Bless, Sue.
hermanrgarza <hermanrgarza@...
hi, how's it going? That's a dumb question cause if your like me
with psoriatic arthritis and psoriasis it's mostly a sucky everyday
struggle with a capital S. i started with psoriasis and did not know
what it was. i was to embarass to tell anyone even my o'lady.after i
went to the doctor i still was not sure what it was. it cleared up
once in awhile with some creams but always returned. Man i was
pissed all the time. it changed my whole personality and life from
MR. Out going first in line to party to get the hell away from me My
o'lady and me always fighting and me shouting at the kids..always in
a bad mood and angry at the world. i was a supervisor at work and
now i look back and man i feel sorry for some of the people who
worked under me. this went on for about ten years and then it got
worse. at first i thought i was just sore all the time cause of the
work i did plus i already had a bad back.in 2002 i went through 6
maybe 8 different jobs untill i could not take it any more. i have
not worked since. i had to move away from my o'lady and kids to my
moms who lives in another state so she could help me. my psoriasis
was really out of control and i really hurt. one day i was on my
moms computer and look up psoriasis and found out that there was
this thing called psoriatic arthritis i had everything it ask for
and more. when i went to the docor he confirmed that's what i had i
went through a lot af meds but they did no good or made me sick and
the doctors did what they could with the cheapest meds cause they
new i was poor. i did some research and found a program called
encourage foundation and they help me get the meds (enbrel) that i
needed.my skin has cleared up except for some small patches but i
still have trouble with the arthritis. weeoh that was good to talk
about. i was always wondering if there were other people out there
with the same thing. i heard there was but only know of two persons.
that's my story.is there any one who would like to tell me theirs
fell free to. herman
Thank you Harry! That was GREAT feedback! Very helpful!
Tiffany
Hi Mickey,
I loved your post...it really had similarities with my life. I've
gotten to the point I just don't talk about the pain with my friends.
They try to understand and be supportive but I get the whole
childbirth analogy. They've seen my overall decline and I think
sometimes they think its bad and other times think I'm just being
dramatic. Again it's amazing to find this board...I'm finding I'm not
crazy, lol.
Thanks again!
Cheers
Jenn
I took mino for a year for inflammatory arthritis and it really
helped, but I could barely tolerate 50-100mg three times a week. On
more I had severe headaches, felt dizzy, didn't like going out, slept
poorly, etc. Even on 50 I felt a bit off, but I tend to more
sensitive to drugs than most.
--
Esther Warkov, Ph.D
Member OMTA, SMTA
Founder, The Piano Connection
www.thepianoconnection.com
971.255-0388 (Portland)
pianos@...
esther_warkov@...
Question -- as the
Hi Allison,
I also experienced what you describe although I didn't have such a
quick success with the joint pain. We did several things. First, we
had me come in every six weeks instead of every 8 weeks. This worked
for awhile. Then we increased the dose and this worked for awhile.
Finally, it worked for only about a month and then would wear off. I
wanted to go in every month but I was also getting neuropathy at the
higher dose so we discontinued it altogether.
Having said this; I think if you are still in the loading phase you
may need to give it a chance and see what dose and how often you end
up needing it. I think it is a good sign that you already have some
improvement after only 2 doses!
Good Luck,
Marti
hi, how's it going? That's a dumb question cause if your like me
with psoriatic arthritis and psoriasis it's mostly a sucky everyday
struggle with a capital S. i started with psoriasis and did not know
what it was. i was to embarass to tell anyone even my o'lady.after i
went to the doctor i still was not sure what it was. it cleared up
once in awhile with some creams but always returned. Man i was
pissed all the time. it changed my whole personality and life from
MR. Out going first in line to party to get the hell away from me My
o'lady and me always fighting and me shouting at the kids..always in
a bad mood and angry at the world. i was a supervisor at work and
now i look back and man i feel sorry for some of the people who
worked under me. this went on for about ten years and then it got
worse. at first i thought i was just sore all the time cause of the
work i did plus i already had a bad back.in 2002 i went through 6
maybe 8 different jobs untill i could not take it any more. i have
not worked since. i had to move away from my o'lady and kids to my
moms who lives in another state so she could help me. my psoriasis
was really out of control and i really hurt. one day i was on my
moms computer and look up psoriasis and found out that there was
this thing called psoriatic arthritis i had everything it ask for
and more. when i went to the docor he confirmed that's what i had i
went through a lot af meds but they did no good or made me sick and
the doctors did what they could with the cheapest meds cause they
new i was poor. i did some research and found a program called
encourage foundation and they help me get the meds (enbrel) that i
needed.my skin has cleared up except for some small patches but i
still have trouble with the arthritis. weeoh that was good to talk
about. i was always wondering if there were other people out there
with the same thing. i heard there was but only know of two persons.
that's my story.is there any one who would like to tell me theirs
fell free to. herman
Micky,
Isn't that book interesting. As being raised Catholic and later converting
to non-denominational it really had me, my Bible and my love of a good
mystery going. What a Good book. I love to read and am having some Sjorgrens
blurring my vision so it is harder, even with a magnifier :(
My children got me "90 Minutes in Heaven" for Christmas, and it really seems
good, but I have only read the Forward. I love a good mystery. Let me know
what book you are starting on next.
Gentle Hugs,
Carol M. in CA
Hi Jennifer
You sound like you having a tough time of it, Let me start by saying welcome
to the group and I hope you find answers to a lot of your questions?
Personally for me one of the hardest parts of this disease is the fact that
one day you can be limping like an old man and the next you're limping on a
different foot!!
One day you wake up and you have a searing pain in your wrist and the next
it is gone! One day you feel like you're at deaths door and the next your
feeling like a normal persona again!
Now imagine your friends are watching this going on.. what do you think they
are going to think? I know before I had this I would be thinking oh come on
your having a laugh! One day your ill, and the next your better? Talk about
looking for sympathy!! Lol
Especially if you're the sort of person who likes to let everybody know they
are in pain (I'm not saying you are by the way) every five minutes
It's hard for us who have this disease to understand what is going on! Let
alone for somebody who thinks that PA is something that your get over, with
a couple of aspirin and an early night! Lol
Don't presume that people will understand. it's not their fault it's just
the way things are in life. If you haven't had this horrible disease then
there is no way you can understand what is going on pain wise.
My way of combating this is to try and say as little as possible about my
day to day pain, and if somebody does ask me then I don't give them the full
juicy details of my pain, I just usually show them my swollen tendons or
joints and let them decide if they think it is painful or not, usually there
so disgusted by the size of my ankles or toes or fingers that they very
quickly realize that it's not an act!! Lol
I'm practical like that.. ok in the office it's not really ideal, but I have
six colleagues who work with me every day and they all sympathize with my
pain, because they have seen with their own eyes and they don't judge me or
say anything stupid like it will be ok in six months!
The point I'm trying to get across is that telling someone you have pain is
not a very good way of getting it across to friends or colleagues as (and I
understand it totally ) the one example I can think of is Child birth.
Luckily I have not had to go through this experience, but from what people
tell me i