In a message dated 12/4/2004 9:36:07 AM Eastern Standard Time,
mcfast1124@... writes:
Anybody have any advise or knowledge of if this is pa or fibro or am I just
crazy...
You ar not crazy because I get pains in the ribs also. I get pains in the
sternum which feel like someone punched me in the chest sometimes.
Janet
-Hi Wendy,
Its good to see a few Aussies hitting the air-waves.
I have read a lot of the postings in relation to humidity and it
certainly does seem as though this makes things a lot worse. I live
in Southern Victoria so the humidity is not such an issue - here the
very worst times are when the frosts come and it is minus 6 or 7....
thankfully we only get a few of these a year.
Anyway welcome aboard - this is a fabulous group - it seems that
there is absolutely no end to the information and knowledge that is
shared.
Sue from Sale
A friend of mine has the type of pain you described and her doctor told her
it was 'shingles', left-over dormant chicken pox which flare-up and
affecting the nerve endings in that area. I know she is in a lot of pain.
The doc has her on Vicoden. I am not saying that is what you have, but you
could ask your doctor the next time you see him/her. Jo Ellen
I have difficulty to find a health store to buy
non-wheat bread. i don't like to buy online. it takes
time.
soheila
I read and heard that we should stay away from sugar,
but almost most fruits have planty of sugars. i am not
crazy for sweeties but our body needs vitamins from
fruit.
thanks
soheila
This is major step for me, lol. I know...I'm a wuss. I will post
my results or if and how it affects me tomorrow!
Sharon
[Editor's Note: Congratulations, Sharon! You are not a wuss - this IS a big
step. When I took MTX for the first time, I left a post-it on my PC at work
with the name of the med and my rheumy's phone number, "just in case". I am not
usually a drama queen, so looking back on it now I am totally embarrassed, but I
WAS scared at the time! Hope MTX works well for you as it has for so many
others. Kathy F.]
Allison, congrats! After I take the metho about 2 or 3 months I
will be started on Remicade...that is if the metho doesn't help me!
Keep us posted, ok? And Good luck!
Sharon
My ribs also hurt. It is one of my worse complaints.
I can only wear a sports bra and that causes more pain
than I can stand most of the time. I know its
miserable and I wish I could give you a solution or
even a suggestion to help with the pain but I have yet
to find one. I also have fibro and pa but I've been
led to believe that it is the pa that is the cause.
I have started taking minocine 100 mg twice a day just
last week. my stomac is upst but I think i have got
some improvemnt for taking minocin (it is only 7
days). I take monicin on empty stomac and wait 2 hours
to have meal after taking minocin. I have already had
acid reflux and taking medication for that. any
suggestion please.
soheila
Hi Lynne,
Thanks for your answer. I am sorry to hear all the trouble you have to
put up with.
Hopefully, things will get better soon.
Robert and Marianne
Hey Nancy, I have the same pain in my sternum & chest - so if you're crazy I'm
right there with you! LOL
According to my old rheumy, that is typical for PA and you can get steroid
injections there...I haven't gone that route yet. Hope you wake up tomorrow with
a pain-free chest.
Beth
mcfast1124@... wrote: "...I get sporadic pain on the sides of my ribs
sometimes feeling like knives between them sometimes just like a soarness.
Anybody have any advise or knowledge of if this is pa or fibro or am I just
crazy...
Hi Lynne,
Thanks for your response. Since the sjogrens i do sometimes have acid reflux
but no so much lately so that is why i stopped taking the acid reflux meds.
Therefore i am assuming it is soemthing else causing the nauea. Every doctor has
different opinion on what it could be yet none have been able to help me. Right
now taking high dose steroids to see if it helps because I tested positive for
AIED. But most ear doctors did not want to do that saying that wihtout hearing
loss AIED is not accurate. I tested positive twice on it, its called cochlear
anti 68 or something. Also my ENG tests showed vestibular damage in one ear then
when it was repeated showed vestibular damage in the other ear. They say this is
not possible, very confusing. When I tried doing it a 3rd time to see which eat
it was, the technician that time did not know what she was doing so we could not
finsih. That's basically it. The nausea began Sept 27 after I had an upper neck
chiropractic adjustment.
I dont get what Vit D has to do with AP therapy. If you have too much/too
little or your ratio is off how do you know if you should or should not do the
therapy? Which Sjogrens patiets do you know who had success with it? I assume it
helped their dryness not just their fatigue?
Thanks for your help.
lynneandsantos <lynneandsantos@...
Hi Vicki;
The only lab that does a really good test for vit.D is Quest
labs.Blood sample must be sent to them frozen.You need a ratio around
1.2 .Are you sure that your nausea is not gerd?For me it felt exactly
the same.Try to get a prescription for Nexium but do not get the full
prescription until you know if it will help.Get a dozen capsules to try
it out and that way you will not be wasting money if it does not help.I
do not like taking anything unless my back it really against the wall
so I take digestive enzymes and found that it works as well as nexium
for me.Most people over 40 have a lack of HCL and the digestion is not
complete thus causing feelings of nausea.I know many people for whom AP
has worked for Sjogren's Lynne G/SD
In a message dated 11/19/04 11:06:25 PM GMT Standard Time,
Pugnfriend@... writes:
You have hit on something very significant, Karen. If we were to survey
this board, I bet we would discover that we are black, white, Asian,
Arabian,
Hispanic, Christian, Muslim, Hindu, Jew, European, African, Middle Eastern,
North and South American, old, young, gay, straight, married, single,
chubby,
thin, male, female and NOT ONE of those differences matters here because we
are
united in a desire to help one another. We ask not what each other is - we
ask what each other needs. What a gift it would be if our leaders could
find
their ways to this simple path.
Kathy F.
See Kathy? I told you that you should be President! lol
Martin
[Editor's Note: Actually, Martin, you told me that YOU should be President!
Ha, and you were right! Kathy F.]
Hi Kathy,
I honestly don't know how you keep up with all the editing, and keep
your good humor. :) Hopefully our editing will help.
Dear Kathy and Marti, I just realized on my last email, I neglected to do
this again! I mean well, but hit the send button too fast I guess. I'll
keep working at it. Love, Ever forgetful Fran
[Editor's Note: Not to worry, Fran, your back is covered, not aimed at, LOL.
If people can trim their own posts, great, but if not, please post away anyhow!
Love, Kathy F.
Thanks to everyone for their comments on Curascript. I
finally got in touch with a real live human there, and
they were helpful and informative. I've decided to go
with Remicade rather than Enbrel, so I won't need to
use Curascript after all.
-- Allison
=====
yea rash is a sign of an allergic reaction.. i take prednisone and i am doing
really good with it. i hope that all goes better for you.
smoosh215 <smoosh215@...
31 year-old mother of 3 and I'm
trying to figure out how I should proceed with my treatment. For
about a year I have had joint pain in my hands and wrists which has
slowly progressed to my feet and toes. The skin on my fingertips are
extremely dry and cracked/split very deeply. I have seen 3
rheumatologists who have run extensive tests. They have all come back
negative - all of them. They each want me to take Prednisone,
Plaquinil and even Mexthotrexate. I was able to convince 1 doctor to
give me Minocin after reading The Road Back, but since taking it I've
developed an itchy red rash all over my arms, legs and trunk. Each
one has said they think I'm allergic to the Minocin and I should stop
taking it right away. I got a prescription for a Prednisone taper
(from 30 mg to 5 mg over a 2 week period) but I'm hesitating to take
it. I don't know if I should continue on the Minocin because the rash
is part of the Herx, or stop and take the prednisone. I'm so
confused. ANY advice would be MUCH appreciated.
~Michelle
Hi Vicki;
The only lab that does a really good test for vit.D is Quest
labs.Blood sample must be sent to them frozen.You need a ratio around
1.2 .Are you sure that your nausea is not gerd?For me it felt exactly
the same.Try to get a prescription for Nexium but do not get the full
prescription until you know if it will help.Get a dozen capsules to try
it out and that way you will not be wasting money if it does not help.I
do not like taking anything unless my back it really against the wall
so I take digestive enzymes and found that it works as well as nexium
for me.Most people over 40 have a lack of HCL and the digestion is not
complete thus causing feelings of nausea.I know many people for whom AP
has worked for Sjogren's Lynne G/SD
Dear Annette, this is miserable. Luckily, I've only had it a couple of
times. It's strange but I've used Neosporin and that helped as much as
anything. The gel is sort of soothing and plus it helps with any infection
of any kind. Hope this helps. Take care, Love, Fran
Hi Monique;
I know about not needingto be that careful of light but somehow I
have to get my Dlevel down to around 1.2.Since I am not eating any food
containing it that only leaves sunlight to deal with.It has been a 2+
year strugle but I will get there come hell or high water since I know
that regular AP does not work for me.I wasted over 4 years with it.
Lynne G/SD
Thanks Marti,
Good to hear from you again.
Take care,
Martin
I've had pa for 7 years and for about 5 have had a spot under my left front
rib that hurts like a bruise. I get sporadic pain on the sides of my ribs
sometimes feeling like knives between them sometimes just like a soarness.
Anybody have any advise or knowledge of if this is pa or fibro or am I just
crazy...
nancy
HI Susan,
Thanks so much for your response. I did find the places he was talked about in
a negative manner but I won't post them as I would feel bad if it is not true.
ALthough I just want to find out answers, I dont claim to know anything.
What I do know is that I am so happy he was able to get you well! What type
of doctor is he? That is amazing and he deserves recognition for that if he was
the reason you got better. May I ask your diagnosis and what he suggested you
do? Most people on here have RA and not many Sjogrens patients like me. I suffer
from unexplained nausea too all the time which is killing me. Have seen so many
docors without any success.
As far as AP therapy I have taken Micocycline daily 100mg for a month and
Flagyl and Clymidacin 2x a week during that momth. Then I stopped as I just was
not sure what i was doing and it it woud help or hurt me.
With the nausea i worry about taking anything since when a med worsens it I
cant always tell when it gets better. But the nasuea has been there ever since a
chiropractic neck adjustment last September. It's hard trying to focus on both
problems, one with no cure they say the other they dont even know what it is
despite postive tests for inner ear problems.
I have no idea what to do next. I did contact Dr. Marshall but the response
was to read on this web site and that personal emails cannot be responded to.
But it was not specific to Sjogrens. Plus how do I know if his protcol or
Strattons is the one for me? Or if AP therapy is it at all? I am totally
confused.
Susan Boston <essybee@...
Hi Vicky,
Dr. Mercola is a wonderful doctor. I credit his regimen (which was incredibly
rigorous and quite hard to follow) along with the antibiotic protocol for being
able to do whatever I want to do after being bed-ridden.
He has taken on the medical profession (the overly zealous AMA is in Illinois
where Dr. Mercola practices) and risked a lot by doing the work he does, but if
you read his newsletter at mercola.com you will see for yourself that he offers
lots of information and help to anyone interested in pursuing good health
basically for free. I have also seen him back up and retrace his steps when he
has found out he was wrong about something, so I value his integrity as well. He
has also admitted when he doesn't know something, specifically how to cure
cancer...although he will offer tips to prevent cancer.
The two comments not quite positive I would make about Dr. Mercola: he does not
have the most pleasant bedside manner...he is not a hand-holder...he expects you
to be the dynamic in your own healing process. He is not very accessible. He is
on a campaign to change the health care in this country and as a result is very
very busy. But as you can see, those aren't really negatives at all, unless you
are hurting and want a doctor who will put the cup to your lips, rather than
just lead you to it and tell you to drink.
and he is very expensive if you can't use your health insurance to pay for his
services, but I consider my money well spent having taken advantage of his
program for nine months.
Susan
Vicki <genuinelysweet2002@...
I am not trying to start anything controversial, I am asking because I don't
know the answer....
I read somewhere but can't find it now, that Dr. Mercola was a fraud. I wish I
had the info to show you so it does not look like it came out of thin air.
Anyway, has anyone heard such thing? Maybe it is all false. But I was curious
about it. Thanks!
Hello Everybody,
Do any of you get p in your nose. A Dr and an allergy specialist have both told
me you cannot get it in the nose but I feel that what I get is psoriasis.If you
do what do you find helpful for it. I find it hurts. My nose feels "thick" and
blowing it doesn't help even though it's so irritable thats what I want to do.
I'd be appreciative of any info, especially if there is info about medication or
it's existence in the nose that I can tell my Dr about.
Bye for now,
Annette
Hi Kathy,
I honestly don't know how you keep up with all the editing, and keep
your good humor. :) Hopefully our editing will help. Do you think
they will allow another member to become a co-editor and help you out?
I can think of at least a few who would be good at it.
thanks for all your efforts,
Marti
[Editor's Note: I think it would be wonderful. If anyone would like to
volunteer, please let me know. I'll pass this on to "the powers that be".
Thanks for your kind comments. Kathy F.]
Hi Vicky,
Dr. Mercola is a wonderful doctor. I credit his regimen (which was incredibly
rigorous and quite hard to follow) along with the antibiotic protocol for being
able to do whatever I want to do after being bed-ridden.
He has taken on the medical profession (the overly zealous AMA is in Illinois
where Dr. Mercola practices) and risked a lot by doing the work he does, but if
you read his newsletter at mercola.com you will see for yourself that he offers
lots of information and help to anyone interested in pursuing good health
basically for free. I have also seen him back up and retrace his steps when he
has found out he was wrong about something, so I value his integrity as well.
He has also admitted when he doesn't know something, specifically how to cure
cancer...although he will offer tips to prevent cancer.
The two comments not quite positive I would make about Dr. Mercola: he does
not have the most pleasant bedside manner...he is not a hand-holder...he
expects you to be the dynamic in your own healing process. He is not very
accessible. He is on a campaign to change the health care in this country and
as a result is very very busy. But as you can see, those aren't really
negatives at all, unless you are hurting and want a doctor who will put the
cup to your lips, rather than just lead you to it and tell you to drink.
and he is very expensive if you can't use your health insurance to pay for
his services, but I consider my money well spent having taken advantage of his
program for nine months.
Susan
Vicki <genuinelysweet2002@...
I am not trying to start anything controversial, I am asking because I
don't know the answer....
I read somewhere but can't find it now, that Dr. Mercola was a fraud. I wish I
had the info to show you so it does not look like it came out of thin air.
Anyway, has anyone heard such thing? Maybe it is all false. But I was curious
about it. Thanks!
Hi Sue,
I will be praying for your surgery and recovery. Ronnie is right, of
course, better to ask what the company meant in their commercial than
to just guess as I did. If you don't get time I can call for you.
:)
Marti
I'm so confused. I thought Vitamin D was a good thing and low levels cause AI
disease.
I don't know if I am a candidate for AP therapy, Marshall or Stratton or
whomevers.
I have severe Sjogren's Syndrome and unexplained chronic nausea not related to
SS since there is no such evidence.
Anyway, my 1,25 was right in the middle of norm. I can ask the doctoer to do
d25 too but and know the ratio is suppose to be 10 right? Which should be
higher?
I am confused if i should be getting some sun or staying away. You always hear
that sun is good for your immunity (with SPF of course). I don't know if I
should be taking Vit D or not. I dont know if the AP therapy will help or not.
I appreciate any advice. I did do 100mg Minocycline for a month then stopped a
few weeks ago. I had added flagyl and clymadicin 2x a week then too but stopped
those too because I got confused on the vit d stuff. I take my vit d supplement
sporadically now that I dont know what to do.
Any advice appreciated. Thank you.
Hi Martin,
so glad of hear of your good results in hospital and your certain
approval for enbrel. Glad to have you back here as well. as Fran
said...we need your light touch.
:)
Marti
I am not trying to start anything controversial, I am asking because I don't
know the answer....
I read somewhere but can't find it now, that Dr. Mercola was a fraud. I wish I
had the info to show you so it does not look like it came out of thin air.
Anyway, has anyone heard such thing? Maybe it is all false. But I was curious
about it. Thanks!
http://www.mercola.com/2002/sep/14/sarcoidosis.htm
mercola also says here that in sarc one should avoid D. well now MP is
being used to treat other Th1 diseases so why would it not apply to them
as well? i think the imp. thing is to get proper tests for BOTH D levels
checked and then decide.
monique
Hey! Anyone got a really good suggestion for a good over the counter
Hi,
I like Keri advanced moisture therapy and the moisturizers from bed
and bath although they usually contain a scent and if the p is
hurting it can sting it. Do you have to refrain from all skin meds
for 90 days?? that's a long time :(
Marti
hi sue,
i know your surgery is on monday.... i just wanted to let you know i
will be there with you in spirit and you are in my prayers. it goes
without saying we are all rooting for you and look forward to hearing
from you as soon as you are back in front of a computer again.
take care, and the best of luck for an easy procedure and speedy
recovery period. we'll all be thinking of you.
love,
karen xoxo's
Dear Kathy, I'm sure I'm one of the biggest offenders on just replying and
sending the email. I'm so glad you brought this to our attention, so we can
help you just a little. I've decided you must be a speed reader anyway to
even read all of these emails so quickly and get them on the board right
away. I'll do my best to do what you asked. Don't hold it against me if I
forget from time to time. Anymore, I'm lucky to remember to hit send when I
do reply to emails.
Thanks for asking for sweet and for being such a great moderator for us all.
Lets here it for Kathy!! Love, Fran
[Editor's Note: Aw, gee, thanks, Fran. Unfortunately, you didn't edit THIS
post either as it still contained the trailer from my original post, LOL. By
trailer I mean the paragraphs begining with "Please visit our Psoriatic Group's
informational page..." located at the bottom of my post. I've left it in to
show you what happens if you just hit reply and your email program includes ALL
of the original post. In this case you will see the "Please visit our Psoriatic
Group's informational page..." twice. Once when it was attached to my original
post and included by you in the reply and again when the system attached it to
THIS post. As I said, if you forget to edit it out, no problem, I'll continue
to edit it, but it would be really helpful not to have to cut this out of over
one thousand posts each month. In any case, thanks for your kind words and for
all the wonderful things you do for this list. Kathy F.]
Dear All,
During the month of November, we posted 1285 times - a PA list record! How
wonderful to see so much information and so much understanding support
shared among our listmembers. Thank you all for making the list the special
place it is.
And now I have a favor to ask. As most of you know, I have PA and also have
a family and a full time job. Moderating the list is a pleasure, but it can
take a lot of time to review over a thousand posts. Many of you edit your
own posts before sending them (THANK YOU!!!!) but the majority of list members
have their email set to include the original incoming message in their
reply. That means that every one of your posts carries the "trailer" that we
put at the end of posts about visiting our web page, etc., etc. If you do not
cut this portion from your outgoing post, it will appear twice when your reply
is posted on the list: once in the original post to which it was appended and
then a second time when your reply is sent to the list and it is again
automatically appended. To avoid that means that I have to cut out the trailer
from most of your replies. It would save me a lot of time if you
would cut the trailer out yourselves before you send it.
In addition, because many of you include the incoming message in your reply
without editing it, we end up with the original post, the reply to the
original post, your reply to the reply, etc., all in one post. No one wants to
read 5 posts in one. Please edit your outgoing message so that you are
including ONLY the germane parts of the message that you are responding to. If
you don't edit it, I have to and that's a lot of work.
Lastly, many members are receiving their posts via digest. If your mail
server is set to include the incoming message in your reply, every single post
in the incoming digest is repeated in your reply! Wow, that's a lot of editing
for me to try to manage inbetween meetings or at 6 in the morning before I go
to work.
Anything you can do to edit your own messages will speed up the time it
takes to get your messages posted on the list.
I REALLY appreciate your help on this. However, please be assured that if
you don't edit your own post, I WILL take care of it and will see to it that
it gets posted to the list.
Thanks for your help, everyone, and please know that if you don't know how
to cut and paste your post, we'll love you just the same!
Best to all,
Kathy F.
i just thought i would say hi and tell you that you i
am recently diagnosed with RA and am actually doing
pretty well. I started getting water behind my knees.
I walk a lot and thought that it was just overuse.
Thein I woke up and couldn"t pull the bed covers up.
My joints were swollen and hot hot hot. and even my
jaw joint swelled. I had a pretty good idea it was RA.
Blood work confirmed it. Iam taking an antibiotic
therapy. and i do not eat any grains. just veggies,
fruit and meats, chicken and fish. and nuts dried
fruit and bean sprouts. water and herb tea. ok and
once in a while some chocolate.
Milk puts me in awful pain, causing swellling. rice
also gives me difficulty breathing and makes my joints
swell. wheat gives me asthma for a week. see if food
effects you too. you can get the reaction right away
or anytine over the next 24 hours after eating it.
lots of times its the food we love most to eat. often
a person with allergys craves the food they are most
allergic to.
There is a bath that i found and tried. it was on the
Hi Robert;
It really took a long time to get down to 1.8.I avoided all foods
with D.It was fairly easy as I have Celiac disease and cannot eat
grains,The Celiac caused sensitivity to Dairy so that was out
also.Therefore I only had to avoid eggs and fish.I do not buy any
precessed foods and make everything from scratch so as to be sure I
don't get any gluten.I have a rough time avoiding high light because I
have an orchid greenhouse so I cover up and use No IR sunglasses.They
are only the medium grey ones as I have to be able to see spider mites
that are extremely small.All in all it took over a year to get there.
All people with SD should be taking Zestril to lower the blood pressure
to prevent kidney failure.I had to take it even though I have normally
low bllod pressure of about 90/60.Doc switched me to Olmesartan(Benicar)
40mg a day.I do not take the full dose as per MP. Lynne
You are using my favorite already. Have you tried tea tree oil? You can
get it at a health food store.
Ks Di
---
Hi Martin,
Your back-then I'm leaving!! lol! Just kidding!! Actually I am
leaving but not because your back!! I'm having my total hip surgery
Monday so I will be gone for a week or longer. It is nice to have
you back-I miss your sense of humor. You are a "ray of sunshine" to
our group. I hope you are better and I hope the Enbrel helps.
God Bless, Sue.
Hi Lynne,
I read with interest your comments on vitamin D,25/25 ratio. You stated
that you finally
got it down to 1.8. Did you accomplish this with diet alone or are you
on Benicar ?
My wife Marianne is on AP for RA and doing well after about two
years.She is avoiding
vitamin D food as listed at MP but we have not recently checked for
the D ratio. She is
avoiding sun and bright light but not the degree list by the MP.
So, it would be of interest to us what you all tried to limit/reduce the
D ratio.
Thanks for your answer.
Robert and Marianne
For those who want one more article on Vitamin D, this link takes you to one
by Dr. Mercola.
http://www.mercola.com/2002/feb/23/vitamin_d_deficiency.htm
Linda
Dear Martin....Hooray!!!! It's great to have you back. Boy have we missed
your sense of humor these past few weeks, or has it been months since you've
been gone. It just seems like forever...lol.
Was it worth the stay? Are you all cured and all better now? I sure hope
so and I hope you were nice to the hospital staff, better than I am. Talk
to you soon. Love, Fran
hi ashley.. i'm betsy and i barely got diagnosed with rheumatoid arthritis and
i'm 19.. how are u feeling today :)
ash_cat_girl <ash_cat_girl@...
but not new to arthritis i was DX at age 3 and
im 12 now
ashley
Hey! Anyone got a really good suggestion for a good over the counter
cream/lotion? I am in the 90 day evaluation period of my clinical
trial w/out any meds. Can't take anything w/ a steroid in it. I am
using Eucerin right now, and it is working pretty good. Whatever I
use has to be thick and preferably non greasy because I have to wear
it all day at work too. I am one big lesion right now. Any
suggestions???
In a message dated 12/2/2004 6:01:47 AM Eastern Standard Time,
spur522000@... writes:
I found this interesting article while surfing the net. It's a
study on how chronic pain can shrink the brain. I thought some folks
might find it iteresting.
http://www.livescience.com/041122_brain_pain.html
My brain must be the size of of a pea.
Janet
Hi Jane,
Sorry for the obvious delay in replying to this but I just got out of
Hospital last night..............................Oh come on
everyone...................Don't leave....................I will be
quiet...............promise!
lol. I have still got over 700 e-mail's to read through so forgive me if I
don't
get too involved over the next few days. (Thought that would cheer you all
up.) Thanks for the kind thoughts Jane.
Take care,
Martin
[Editor's Note: Yeeha!!!!! Martin's back! We have missed you, Martin. We
forgive you for everything, LOL. Please let us know how you are doing. I think
of you every day and on some days I even think of you fondly, ha. It's so good
to have you "home". Kathy F.
hi dr. chiu
i feel the need to respond to this post. i was on ap 200 mg a day for RA
for 3 years. after 1 year i went into complete remission and then in
late 02 i came down with horrible vertigo and fatigue and had to stop
the minocin. 3 x since 03 i have tried to start it as within one year of
stopping it RA came back. each time i tried restarting minocin vertigo
and fatigue came back so strong i couldn't get out of bed. thus i tried
using cod liver oil and other supplmts along with a no grain meat fish
veg diet and within one year of this got a lot worse - RA spread from
just hands and feet to other parts of body. i have followed the progress
of 5 ppl with RA - 4 of whom were formerly on ap - now on MP from a year
to almost 3 years - and all are doing better now than when they started.
i have met others on ap who avoided all D in addition to ap and dietary
changes and are doing much better. one man who hadn't gone into
remission on ap and had in fact gotten much sicker - like me had
developed CFS in addition to the RA - after 18 mos on MP went back to
work f/t. i'd rather try MP than accept the risks of enbrel or one of
the other TNF's that my rheumy wants me on.
i hope you will consider this info. have you seen the dvd's from the LAX
conference last year?
sincerely
monique sauve
Hi,
Thanks to everyone for answering my questions on arava. I hate to
think I'm so vain that it bums me out to lose my hair...sort of
ironic after deformed joints and p everywhere...I guess it's just one
more thing...but you have encouraged me and now I will see if I can
get it the arava covered.
Welcome to our new members. I'm sorry I don't know the answers to
your questions but I am sure someone here will.
Take care all,
Marti
[Editor's Note: Marti, I've been on Arava for about 18 months and have not
suffered any hair loss. Sometimes I think my hair is getting thinner, (I'm 55
and post menopause so I wouldn't be the first "old lady" this has happened to),
but every time I get my haircut, the stylist tells me that I have thick hair.
As I've said before, I feel that when Arava was used as a monotherapy, I didn't
think it did anything for me, but when used in concert with Humira, I've done
really well. I've also decided that if I lose my hair, I'll get some work as
Clarabell. Beep, beep. Best of luck with it, Marti. Kathy F.}
I'm seeing Dr. Box at St. Joseph's. He's good too.
We'll have to chat offlist. Feel free to email me.
-Allison
=====
Yes, I am. I only get them when I reply to this messages from this group. If I
email "reply to sender" instead of "reply to group" I do not get the mail
deliverly problems.
Carol_DM
Dear Janet, Your message didn't come through all the way. Can you send it
again. Love, Fran
[Editor's Note: If Janet's message contained an attachment, it was
Dear Marilyn, I fell a lot before I was first diagnosed with PA. I blame
it now on shoes because like a nut I was more fashion minded than comfort
minded. Every time, it was a stumble and then crash. It hurt and that's
when I first damaged my jaw. Since I've been diagnosed, I've been more
careful... wear comfortable shoes and walk much slower now.
What you are describing sounds completely different to me. If I were you
I'd get to the doctor immediately. For all of your joints to just give out
all at once sounds extremely dangerous and no wonder the pain is so severe.
You never have a chance to even think about catching yourself or protecting
yourself from the fall. This sound more neurological involved to me, but
please get to a doctor ASAP. At least you can relieve your mind of worrying
about everything that could be causing the falls. This is too serious to
just consider it another weird side effect of PA.
Let us know what the doctor says. Good luck and please don't put it off.
Love, Fran
I was on Dolobid years ago for a ruptured disk in my back. It tore my stomach
up and caused gastritis.
Rae
Hi-
I'm new to the list as well as fairly newly diagnosed-5/04
Im 37, exhausted, and in a lot of pain! In May, I did 4 weeks of MTX;
2 weeks off, then 4 weeks of higher dose MTX with no results, just
tons of side effects. I was also getting steroidal joint injections
weekly. Additional meds at the time included: Lexapro 20mg/day,
EffexorXR 75 mg/day,Celebrex 200mg/day, Provigil 200 mg/day.
I had intense pain at the injection sites and felt horrible so in Aug
I felt that the treatment was becoming worse than the disease and
weaned myself off all meds.
I have been doing acupuncture for pain control with good results
until Nov. I noticed that as the weather changed - the more pain,
tingling and numbness especially in hands and feet.
I saw a new Rhemy 11/29 and we agreed to start introducing one med at
a time. I stared with Dolobid 500mg 2x day since Monday. It's
Thursday and my gut is still wrenching and diarrhea continues.
I read that these are common side effects with this drug but does it
get better? Will my body adjust eventually or is this 'normal' for
this drug?
He wants to add Enbrel in 2 weeks but I can't imagine adding anything
else with the way I'm feeling. But I also don't want to give up so
quickly.
Anyone else have any experiences with Dolobid?
Hi I'm either a newby on this sight or have been here a long time
ago. Has anyone experienced a sudden weakness in all the joints
that causes one to fall like a marionette with the strings cut? I
have fallen over about 4 times in the last 6 weeks, and each time,
it as if all the ligaments and tendons have stretched and gone slack
suddenly, mid stride so that although all the muscles and bones are
doing the job, nothing is keeping them in place, and I have sprained
strained and stretched every joint in my body. Both ankles have
been rolled outward, my left knee and hip have done ditto, and the
pain when I fall is excrutiating, to the point of wanting to vomit.
I am just turned 50 and quite strong and fit usually.
Woo Hoo! My insurance company approved my doc's
request for Remicade! I start treatment on 12/20 if
my TB test is clear and I don't come down with
anything between now and then. Yeah!
Actually, the insurance company approved my choice of
Remicade or Enbrel. I'm choosing Remicade because the
cost is completely covered by insurance, but the
Enbrel would have a high copay. The whole infusion vs.
self-injection thing was another factor. Ouch).
Any advice from ya'll established Remicade users? What
should I expect? Any info would be appreciated.
(Meanwhile, I'm staying away from children, holiday
shoppers, and the students here at my office.
Hand-santizing gel is my new best friend. <grin
Thanks,
Allison
=====
I received this from someone and I felt like it was the story of my life.
I'm sure you can all relate.
Hi Becky and Fran,
my dad injured his back in the 1940's - he put off doing anything
about it until late 2002 - between that and a disintegrated hip he
was wheelchair bound and in constant pain. In Nov/02 he had back
surgery and in march, 2003 he had his hip replaced. the back surgeon
said the spinal stenosis in dad's back was one of the worst cases
he'd ever seen - both surgeries were unqualified successes and all my
dad could do was kick himself in the backside for putting it off for
so long. medical procedures are improving by leaps and bounds
now... if i was in debilitating pain, 24/7 in the spine (or anywhere
for that matter) i would always opt for the surgery - at least then
you have a chance of improvement (and i'd hazard to guess a darned
good one) - without, what do you have but pain...
take care,
karen
Allison,
I got my diagnosis two weeks ago. I am seeing Dr. Koenig at Saint Lukes South.
He seems like a good doc. This office has been very nice to work with. Who are
you seeing?
Rhonda
Hi Linda,the information is all here.Should take you all day to read it
though.It explained a lot to me and only after getting my D levels down
did AP work properly.I wish I knew how to edit this article down a bit
but you are looking at the worst computer dummy going.Iknow how to "cut
and paste" and "reply" and that is about it. Lynne
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VITAMIN D TUTORIAL
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Posted: Mon Mar 28th, 2005 23:48
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Reply <http://www.marshallprotocol.com/reply.php?topic_id=2572
Vitamin D--also known as calciferol--has several forms or metabolites.
Vitamin D was misnamed when it was discovered in 1922. It is not a true
vitamin because an ongoing nutrient source is not required to sustain
normal levels in the body. Rather, it is autonomously synthesized in the
cells of the skin into the biologocally active form in reaction to
sunlight or bright lights.
History of Vitamin D
In 1925, Adoph Windaus isolated three forms of the vitamin: two derived
from irradiated plant sterols, which he called D1 and D2, and one
derived from irradiated skin, which he called D3.
In 1931, the chemical makeup of D2 (ergocalciferol) which is derived
from the precursor molecule ergosterol, was defined.
In 1936, Windaus synthesized the molecule 7-dehydrocholesterol and, then
converted it by irradiation to vitamin D3, now known as cholecalciferol.
Although it was assumed that vitamin D was photosynthesized in the skin
from 7-dehydrocholesterol, the final proof did not emerge until more
than three decades later.
In 1968 an active substance identified as 25-hydroxyvitamin D3, was
isolated and later proved to be produced in the liver. During the next
two years, the existence of a second active metabolite was discovered
and found to be produced in the kidney.
In 1971, the chemical/molecular structure of this metabolite, was
identified as 1,25-dihydroxyvitamin D3. It was now clear that the liver
changes vitamin D3 to 25-hydroxyvitamin D3, the major circulating form
of the vitamin. The kidneys then convert 25-hydroxyvitamin D3 to
1,25-dihydroxyvitamin D3, the active form of the vitamin.
1,25-dihydroxyvitamin D3, the active form of vitamin D, was reclassified
as a hormone that controlled calcium metabolism. A hormone is a chemical
substance produced by one organ and then transported in the bloodstream
to a target organ, where it causes a specific biological action.
Dr Tony Norman, at UCR, discovered 1,25-D and has spent his life
studying it, and other related compounds like 24,25-D. Here is his bio:
http://biochemistry.ucr.edu/faculty/norman.html
==============================================
Calciferol--also known as calcidiol or 25-hydroxycholecalciferol or
25-hydroxyvitamin-D or simply 25-D--is an inert, biologically inactive
precursor of hormone D. It is produced in the liver from Vit D2 and Vit
D3 and is the major circulating form of Vitamin D. It is the substance
that is used to produce the hormone (in the kidneys) which is the
biologically active form.
Naturally occurring dietary sources of Vitamin D2 and D3 (especially
fish, fish oils, liver, eggs), foods supplemented with Vitamin D (dairy
products, cereals, processed foods) and vitamin supplements are the
body's main source of calciferol (25-D). A small amount may be generated
by exposure to sunlight.
Some plants and fungi convert ergosterol (a plant sterol) into Vitamin
D2 (ergocalciferol) in response to light and these plants can then be a
minor nutritional source of calciferol for humans.
Taking Vitamin D supplements/fish oils or eating foods high in Vitamin D
will increase the level of 25-D.
Calciferol (25-D) is measured in nanograms/milliliter. The metric
measurement is nmol/L. Some labs measure both Vitamin D2 and D3 and then
provide a total 25-D level.
...............
"Unfortunately, one cannot rely on nutritionists to understand the
actions of Cholecalciferol. They still call it a Vitamin. It is not, it
is a steroid hormone precursor. All the evidence I am seeing indicates
our body doesn't need it at all. All in all, the misclassification of
Cholecalciferol (as a Vitamin) is likely to become one of the biggest
debacles clinical science has ever made."
Dr. Trevor Marshall, PhD
==========================================================
==========================================================
Calcitriol--the active metabolite--is also known as
1,25-dihydroxycholecalciferol or 1,25-dihydroxyvitamin-D3 or simply
1,25-D. It is the most potent secosteroid hormone in the human body and
affects almost every cellular activity.
http://tinyurl.com/7hbz5
1,25-D is formed in the kidneys, the kerotinocytes of the skin and many
other tissues of the body. The level of production is normally tightly
controlled in healthy people. It is measured in picograms (which is
1/1,000,000,000,000 of a gram) per milliliter. The metric measurement is
pmol/L.
1,25-D is directly synthesized from 7-dehydrocholesterol when sunlight
falls on the keratinocytes of the skin. Because the keratinocytes of Th1
patients are parasitized by CWD bacteria, they produce interferon-gamma
(which is part of the bacterial defense mechanism) and TNF-alpha. These
cytokines cause the cells of Th1 patients to produce much more 1,25-D in
their skin than healthy folks. In patients with Th1 inflammation, the
production, by sunlight, of 1,25-D in the skin predominates the
production of 25-D. Studies show that all 25-D produced in the skin from
sunlight is hydroxylated directly into 1,25-D, leaving no 25-D to be
stored in fatty tissues.
Since biochemists have been doing their homework, it makes clinical
science look all the more clumsy:
http://biochemistry.ucr.edu/faculty/norman.html
There is no dietary requirement for calciferol(25-D) to produce 1,25-D.
As long as humans have access to minimal sunlight several months of the
year,they will not become deficient in this active metabolite (1,25-D).
Ten to 15 minutes of natural sunlight or daylight exposure to only the
forearm or face twice a week (for example, while driving) supplies all
the active metabolite of Vitamin D (1,25-D) necessary for health.
Nutritional sources (natural and supplemented) provide the precursor,
25-D, which is stored in fat cells and has a half life of 2-6 months, as
a safeguard for later use. When sunlight exposure is not available the
body uses its stored calciferol to produce the biologically active form
of Vitamin D in other tissues of the body. Patients with Th1 disease
generate their 1,25-D requirements from much lower levels of light than
healthy people, and rarely need any nutritional 25-D.
1,25-D is generated in the macrophages when Th1 cytokines mRNA is
released by phisphorylation of the protein dimer Nuclear Factor Kappa B
by the I-kappaB kinase polymorphs.
The mitochondria of the activated macrophages are responsible for
producing 1,25-D in the cytoplasm of the infected cells. There is only
one of the D-metabolite-converting-enzymes present in the mitochondria,
the enzyme which converts 25-D into 1,25-D. Interferon-gamma (released
by the Th1 bacteria) energetically catalyses this conversion by as much
as 30-fold. So the more 25-D that is available to the inflammed tissue,
the more 1,25-D will be generated. Ingestion of Vitamin D, from food an
supplements, causes 25-D to be available to fuel the conversion to
1,25-D in the mitochondria of the cytoplasm of activated (infected)
macrophages under the influence of Interferon-gamma.
Light falling in the eyes causes generation of 1,25-D and fuels
inflammation in the eye. It is not known how this affects the systemic
infected cells but it often causes severe malaise.
When cell wall deficient bacteria invade the macrophages of the immune
system, calcitriol is produced (due to the Th1 immune system response)
causing the level of calcitriol to exceed the upper limit normally
controlled by the kidneys. As a result, the level of calciferol (25-D)
may be reduced because it is being rapidly converted into calcitriol
(1,25-D).
It is essential to measure both calciferol (25-D) and calcitriol
(1,25-D) to determine if there is a Vitamin D deficiency. The level of
the inert precursor (25-D) does not always directly reflect the level of
the active metabolite (1,25-D). In persons with Th1 inflammation (often
undiagnosed) the level of measured calciferol (25-D) may be low (due to
rapid use of this precursor) while the level of the active metabolite,
calcitriol (1,25-D), is dangerously high due to the immune system
response to intracellular bacteria. Testing only the precursor and
assuming that a low level indicates a Vitamin D deficiency may result in
a misdiagnosis. In this case, supplementing with Vitamin D will provide
more 'fuel' for the production of excess 1,25-D by the inflamed tissues.
This will allow the bacteria to freely multiply with a resulting
worsening of Th1 inflammation.
For information on the effects of elevated 1,25-D, see:
A Review - Vitamin D and Calcium in Sarcoidosis <http://tinyurl.com/3v5ml
Hormonal Diagram <http://tinyurl.com/4hdmv
Hypervitaminosis-D Symptoms <http://tinyurl.com/5y5jp
============================================
For those who are interested in the intricacies of Vitamin D metabolism,
below is a link to a paper which is an excellent in-depth overview of
how the hydroxylase enzymes of the Vitamin D pathway function in both
illness and health.
http://www.jbc.org/cgi/content/abstract/280/21/20604
Also:
VITAMIN D: PRODUCTION, METABOLISM, AND MECHANISMS OF ACTION
<http://tinyurl.com/7hbpn
Hi Monique;
I also know many who are doing just fabulously on MP.It is not that
the vit.D is a problem,it is the ratio of 1,25 to 25 that is the
problem.It has to get some sort of balance and the only way is to lower
it until the antibiotics can help.I wish I could start now but having an
orchid house that is a full time job makes it impossible to avoid high
light.I am just careful about eating anything that has it.Just that has
helped a lot.My ratio of 1,25 -25 was still 3 times too hight even
after 3 months of none in the diet.I got it down to 1.8 and AP suddenly
kicked in nicely Lynne SD
Re the Vit D theories, I have been told by my former Pulm physician, that
Vitamin D is counterintuitive in Sarcoid, seems to make Sarcoid patients
worse...I don't have Sarcoid as he thought, but wanted to point that out to
patients on this BB.
All the evidence and science coming out seems to indicate strongly that Vit D is
under prescribed and the dire consequences of not having enough Vit D.
Just my thoughts,
Debbie
Haven't kept up for a while as busy with other things, but I would
like to point out that
1. There is no evidence that taking fish oils makes arthritis worse.
There are studies that show it benefits rheumatoid
2. There is absolutely no published evidence that lowering vitamin D
helps RA. To the contrary, low levels of vitamin D have been show to
predispose to autoimmune disease. There is also at least one
published study using a vitamin D analog to treat RA and obtaining
benefit.
3. I give *all* my patients vitamin D supplements .. like 50,000 IU
per week or month. No one has got worse. A lot feel better.
4. A study I published of vitamin D levels in my patient population
before I started supplementation showed that levels were generally
less than half those of the normal population
5. Mr Marshall's hypothesis lacks any scientific credibility. I
posted a few questions on his board, and he shut me down quickly. I
believe he has a messiah complex.
6. Grains - the benefit from not eating these are due to the lectin
content which can damage the gut lining, and may in some individuals
induce a leaky gut syndrome.
Happy Easter .. I've got a few eggs waiting!
--
Dr Graham Chiu
---
Hi Cheri,
Thanks for the well wishes-I figure the hip replacement has to be
better than this pain I'm going through with my hip and not being
able to walk.
God Bless, Sue.
Hi-
I'm new to the list as well as fairly newly diagnosed-5/04
Im 37, exhausted, and in a lot of pain! In May, I did 4 weeks of MTX;
2 weeks off, then 4 weeks of higher dose MTX with no results, just
tons of side effects. I was also getting steroidal joint injections
weekly. Additional meds at the time included: Lexapro 20mg/day,
EffexorXR 75 mg/day,Celebrex 200mg/day, Provigil 200 mg/day.
I had intense pain at the injection sites and felt horrible so in Aug
I felt that the treatment was becoming worse than the disease and
weaned myself off all meds.
I have been doing acupuncture for pain control with good results
until Nov. I noticed that as the weather changed - the more pain,
tingling and numbness especially in hands and feet.
I saw a new Rhemy 11/29 and we agreed to start introducing one med at
a time. I stared with Dolobid 500mg 2x day since Monday. It's
Thursday and my gut is still wrenching and diarrhea continues.
I read that these are common side effects with this drug but does it
get better? Will my body adjust eventually or is this 'normal' for
this drug?
He wants to add Enbrel in 2 weeks but I can't imagine adding anything
else with the way I'm feeling. But I also don't want to give up so
quickly.
Anyone else have any experiences with Dolobid?
Hi Josie,not everyone had a vit.D handling problem and that is why it is
so important to have the proper test done.Either that or if you go into
remission and stop taking the antibiotics to see if the problem comes
back.Then you will know for sure what is going on.Vit.D also acts as
well as prednisone and that could be a reason for feeling better.It is
only one molecule of hydrogen different from pred. It is interesting to
see how close they resemble each other if you get the molecular
diagrams. Lynne
---
Thanks Kathy and thanks for having this group for us.
God Bless, Sue.
Dear Janet, Sorry I didn't put this with the other email. As far as my
psoriasis goes, I can't tell that Arava has helped that at all. I don't
have it near as bad as some do, so maybe that is why. Take care, Fran
<<--- Becky <braine@...
Does anyone have knowledge and/or experience with Spinal Stenosis?
I have that -- it means that the openings from which the nerves protrude from
the spine are narrowing. So the nerves are being strangled in way, and the
pain will radiate accoring to which nerves are affected.
I had a series of epidurals that seemed to help. The first two or three did
almost nothing, but eventually they took effect. My neurosurgeon says I am in
for at least one operation down the line (my spine is a mess, more than just
the stenosis) but I am delaying that day as long as possible.
Robert, New Jersey Lowlands
Hi Rhonda!
I'm 41. I've had it since I was about 12, but finally
got a diagnosis this spring after all the symptoms
ganged up on me. How about you? Which Rheumy are you
seeing? How are they treating you?
-- Allison
I agree w/you Judy. I've been taking Omega-3 complex along w/ extra Alpha
Linolenic acid. I have never felt better. I have been on AP for over 4 years
now, an I can honestly say, that I can actually see the light @ the end of the
tunnel.
For 4 years, the AP has made me function and feel better, but if I missed 1
dose I went back 2 paces...this in 24 hours. I was always so scared, now I
really have hope that I can go into remission.
I'm not saying that the Omega-3 complex is the only thing that has helped, but
it sure didn't seem to hurt.
Being that my heart is worjing better due to the Omega-3, my lungs are now
(today clearing up (coughed up green mucus)..
Josie
Judkeels@... wrote:
Hi group,
I've been giving lots of thought to your theory Geoff re fish oils, etc. My
thought is though, that it is good for imflamation as well as other benefits
such as heart health, etc. AND, if one continues to stay on the AP protocol,
how would it be covering up our RA or others problems?
just a thought
Judy
************************************** See what's free at http://www.aol.com.
To unsubscribe, email: rheumatic-unsubscribe@egroups.com
Dear Janet and Allison,
I wonder sometimes why some of us have so many infections on Enbrel or one
of the other new drugs, and yet some of us can take them and never seem to
have a problem. I wonder if it is a reaction to the drug, or do we have
weaker immune systems to start with?
Janet, I'm sorry your doctor doesn't like Arava. It has been a lifesaver
for me. I saw my family doctor yesterday and he was so happy with my
progress. Yes I still have a lot of things wrong with me, and if I list
them it's still really overwhelming to me and my future. I finally have
some energy back and the pain is not near as bad as it was. I've even
managed without even trying to almost completely stop my breakthrough
medication for pain. I used to take 6-8 morphine fast acting tablets when I
couldn't handle the pain or couldn't make it until my next normal time
released drug was due every day for the past 4 years. Now I hardly take
them at all, and half the time, I even forget to take my main pain
medication. That's not good though because if I go over 12 hours, the pain
hits pretty bad but at least I'm not clock watching anymore. I feel hopeful
for the first time in almost 6 years.
My husband and I were even talking about buying me a new car in case I
decide to start driving again. I still won't be able to do too much, but
hopefully I should be able to make it to my doctor appointments on my own
sometimes. Anyway, maybe you can bring up Arava again with your doctor.
You know how badly I reacted to MTX, Humira and Enbrel, so for Arava to be
basically symptom free is a miracle for me. (The only hair loss I have is a
little more in my brush every time I wash my hair. I asked my hair dresser
about it and he said no problem at all.)
Anyway, I hope you feel better soon. I've really got no guarantee that my
future will be so "rosy" as I probably painted it here, but I do think a
positive attitude is what has kept me alive the past 5 years. If I have to
face disappointment in the future, I will, but for now I'm just enjoying the
ride.
Love, Fran
Hi group,
I've been giving lots of thought to your theory Geoff re fish oils, etc. My
thought is though, that it is good for imflamation as well as other benefits
such as heart health, etc. AND, if one continues to stay on the AP protocol,
how would it be covering up our RA or others problems?
just a thought
Judy
************************************** See what's free at http://www.aol.com.
I found this interesting article while surfing the net. It's a
study on how chronic pain can shrink the brain. I thought some folks
might find it iteresting.
http://www.livescience.com/041122_brain_pain.html
Steve R.
just to let u know mam... fish oil supplements with flax oil have done wonders
for me....
Betsy
Ken and Linda <kglg@...
Geoff, would you please give us a reference for your statement that
"...
increased Vitamin D, such as with fish oil, can alleviate pain while
allowing cell wall deficient pathogens, such as mycoplasma, to multiply
unhindered, thus "masking" our symptoms similar to what the mainline drugs
do." I have never read this before.
Thanks,
Linda
In a message dated 12/1/2004 9:10:35 PM Eastern Standard Time,
darkart42@... writes:
I can't even tell
when my sinuses are acting up anymore, because the
methotrexate interfers with my immune response. No
wonder it's so hard for us to get diagnosed!
I hear ya Allison. I find each day brings a different variation of this
nasty illness. I started Enbrel double doses about two months ago and started
feeling some relief after about a month. Then I came down with a nasty sinus
infection and after about 10 days stopped the Enbrel. I am off it how for
almost 3 weeks and all I can say is OWWWW.. I am going to go back on Friday
but then I am afraid the infection will come back.
Janet
Allison,
I live 20 miles south of Kansas City. How old are you? How long have you been
diagnosed with Psoriatic Arthritis?
Rhonda
Dear Carol,
You posted that you were on AP therapy for RA. How much and what are you
taking? I understand the doctors are finding that helps oster-arthritis
also. How many times a week do you take the antibiotic?
sincerely,
Bunny
Kathy,
This is so interesting. When I was first diagnosed with DM and was in hospital,
one of my nurses had a corgi with dermatomyositis and her vet was treating it
with doxycycline and prednilsone. I was in the rheumatology department, she was
the head nurse there. The doctors knew about her dog and what he was being
treated with but , of course, using an antibiotic for a person was not even
considered. I never even correlated that at the time - brain fog, etc. When I
did find out about AP, I was outraged at how close-minded doctors can be. And 4
years wasted that if having been given the same treatment as the dog would have
reached remission/control much sooner.
The good thing is that I finally found out about the AP and am now in
remission/control.
Carol_DM
Geoff, would you please give us a reference for your statement that "...
increased Vitamin D, such as with fish oil, can alleviate pain while
allowing cell wall deficient pathogens, such as mycoplasma, to multiply
unhindered, thus "masking" our symptoms similar to what the mainline drugs
do." I have never read this before.
Thanks,
Linda
I just got off predisone for five days for a flare for the first
time. Also I have had a chest cold for weeks.I never thought that
maybe my flare was form the Vioxx. It was great for me I could move
and not feel over drugged. Now I mwaitin for my Enbrel , I hope is
the answer.Because I itch and my feet hurt and I cant imagine
another flare where i could blarely walk. In the mornig it would
take me hours to get moving.Winter is creeping up on me and my body
kills. It think dealing with others, trying to get them to
understand. Happy Holidays To ALL!!
Does anyone have knowledge and/or experience with Spinal Stenosis? My Mom
was just diagnosed with it. She has extreme pain in her lower back,
radiating down her leg into her foot. They are going to schedule her to see
a back specialist tomorrow.
Becky
Hi Rita;
The correct dosage is usually 200mg a day.You may find it easier to
use less at the beginning but at least this way you will not run out of
it so fast.Often doctors will only give a prescription for a short
time.That was my problem at the beginning,when I ran out he did not want
to give me any more.I could not take 200mg a day when I started and had
to lower the dose to 100mg. every second day and slowly work up.I have
Scleroderma and it took me 4 years to figure out a protocol that worked
for me.Everyone is different and what works for one,may not for an
other. Lynne G.
I'm seeing an attorney on Friday AM to start the process for my wife
who has pancytopenia(low blood counts) caused by Lupus. We should
share our experiences as we go through the process.
Geoff,
I just picked up on what you wrote that while fish oils alleviate pain that they
allow "cell wall deficient pathogens, such as mycoplasma, to multiply
unhindered, thus "masking" our symptoms similar to what the mainline drugs do."
Do you think that taking fish oils hampers the progress of AP? It is something
I have wondered for some time myself, having tried the MP for my daughter
Samantha (RA since 2001) and failing miserably on it.
Caroline Stronge.
Hi Sue,
I saw a new ad for enbrel where they verbally mentioned the five
years. I could be wrong, but I assumed that meant they had now
completed 5 years of study on a group of people. enbrel can become
ineffective for some people anytime. It may have also continued to be
efective for some for at last 5 years. I think this might be
considered a selling point since the biologicals are so new. Enbrel
has a litle edge over the others, at least for arthritis, since it
was the first one out. As always, in this group,we see the dffeent
meds can work so dferently for different people.
Since we have a life-long illness, 5 years is not a very long time to
have test data.
wish I could be more encouraging,
Marti
Allison - I receive my Humira thru Curascript. I wish I could tell
you that I have had positive experiences with them, however I find
them to be horribly slow. Finally I called my primary insurance
carrier and complained. They dealt directly with Curascript and
suddenly my medication was been shipped. If you find anything else
that works when dealing with them please let me know!
Heather
In a message dated 12/1/2004 1:31:04 PM Eastern Standard Time,
pattybacon@... writes:
Has anyone heard of, or used, Essiac Tea?
It was reccommended to me by a gentleman who says it has controlled
his symptoms of Lupus and Fibro as well as his chiropractor's
leukemia. As with many such things, it sounds too good to be true.
Haven't heard of it but if it does all that I want it. My fibro is really
acting up on this cold Long Island day.
Janet
Scleroderma, another auto-immune disease which my daughter has, in addition to
M.S. (multiple sclerosis).
Ellen
Has anyone tried the supplement Rhumatol? If so, with what results.
Thank you,
Jill
************************************** See what's free at http://www.aol.com.
Try www.healingyou.org/prednisone.html
HTH
Geoff
Acts 2:39
Barb,
You've done all that and your still standing!
We here are on Antibiotic therapy.
I have been reading many books of late, and it seems that some disease's stem
from an infection that has been hiding, and growing. We, here on this site have
seen this therapy work for us.
Another thing that I have read, and found to be true, is that we also must
somehow control the inflammation that is flaring in our bodies. Last year I
stared taking Omega oils, GLA, CLA, Alpha Lipoic Acid, no flush Niacin ,Garlic
and other things. The inflammation in my body got under control, but it seems
the parts that are badly damage, (from all the years that docs prescribed all
those meds), still are inflamed. My hands, knees, feet and ankles are very hot
most of the time. But it took years for me to get this way, and as long as I
see any progress, I will continues reading the wisdom from this group, and read
more, and try to get as educated as possible.
I've been @ my lowest point, under conventional medicine (under many doctors
care, from 1994-2002, and was told it was all in my head), and deviated from
that path, and now see improvements...be it slow (started 2002), but I am
improving. What really makes me mad, is that in 1996 my blood work showed that
I had Wegneres, and the doctors never did anything for me, even though I would
always tell them that I felt like I had an infection. When I was prescribed
antibiotics, I could feel my body getting better form my feet up...but the
doctors don't want to listen, This past Nov. my mother died from Wegeners, when
it started in her sinuses, and w/in 1 month attacked her kidneys, and killed
her. When I came home, I checked all the my blood test reports that I had from
all the blood test I had taken, and was shocked when I saw WEGENERS, and the
docs never even raised an eyebrow, they just gave me more anti-depressants, and
naproxen.
So try what we have been doing, and see if it will help you as well.
Josie
badrewieck <badrewieck@...
Hi, I'm Barb. I am a 70 yr. old granny who was diagnoised a little over
3 years ago with Dermatomyositis. I have been through every test
(blood, x-rays, scans, MRI's, ect. Medications, prednisone, immuran,
pain killers, again, etc.) I think possible, however, I'm sure more
could be found. I have done the IVIG, Cytoxin (via intervenous), I
have been to the Marshfield Clinic (Marshfield, WI) and the Mayo Clinic
(Rochester, MN). I went off the cytoxin in September 2006. and I am
only on 10 mg. prednisone (daily). About 4 months off of cytoxin I
began to feel "free." I seemed to lose a heavy feeling through out my
body. I think it was finally the drugs leaving. I have had to use a
walker with wheels to walk. Two years ago I developed drop foot (right)
and one year ago I developed drop foot (left). I now walk with special
shoes and braces up to the knees. I have a balance problem. When I
started to feel "free" I noticed that I could let go of the walker for a
bit and walk with the support of a cane. I was so thrilled that getting
out of bed in the morning was a joy and I was like a kid with a new toy.
Today I still have the complications of the DM and the Nuropathy. My
feet are numb and the burning goes up to my knees. But God has heard my
prayers and I'm walking again (sometimes without the cain!) Maybe I'm in
the wrong spot for this testimony. I guess I'm wondering what others
think about their medications, etc. I'm very discouraged with
prednisone. On 80-100 mg.a day I put on 50 pounds and was so
discouraged that I had to go on anti-depressants. As I have come down
from Predniswone I have lost the 50 pounds and that in itself has made a
great improvement in my out look each day. Anyway, I'm out visiting
various groups and if I'm in the wrong place feel free to bump me out.
I'll go quietly [:-$]
To unsubscribe, email: rheumatic-unsubscribe@egroups.com
Thanks, Karen.
You know, the most frustrating part of this disease is
that it just isn't consistent. It moves around. It
flares and remits. It seems like things are so much
better and maybe I don't need all these drugs, then
something changes for the worse. Yesterday my skin was
clear. Today I wake up with scales. I can't even tell
when my sinuses are acting up anymore, because the
methotrexate interfers with my immune response. No
wonder it's so hard for us to get diagnosed!
- Allison
Hi, Rhonda!
Where are you in Missouri? I'm in Kansas City.
-- Allison
=====
In a message dated 12/1/2004 12:59:58 PM Eastern Standard Time,
darkart42@... writes:
Has anyone ever heard of or done business with
Curascript mail-order pharmacy? Someone from there
left messages for me at home and work yesterday,
saying only that it's "important." Of course, I can't
get through to a real human when I return the call.
Hi Allison
I use Curascript and they have been great. If you go through the menu you
will be able to get a live operator. My injectibles are covered through
Curascript.. I get my Enbrel through them. The set up a delivery date and
ship
the meds in a styrofoam cooler. You don't need to sign if you give
permission to have it left at the door. They call about two weeks in advance
to set
up a date for the following month. I have had no problems with them.
Janet
Thanks for passing on that important message, Sue. All of us who are on potent
medications should have our eyes examined at least annually even if we don't
feel anything is wrong. I'm sorry that your eyes are as bad as they are, Sue,
but I'm really glad that you will finally get the problems treated and be on
your way to restored vision.
Kathy F.
The other day I went to my Eye (Ophthamologist)Appt. I have iritis
and conjunctivitis in both my eye-worse in my left eye. He gave me
some eye drops and is going to start me on steriods Friday. Please
if any of you have eye problems please make an appt. just putting
this off I can barely see out of my eyes and it flares just like the
rest of my body. It is so scarey that PA and related diseases can
attack our body like this!! I can barely read (which I love to do)
and haven't been able to work on any pastel or pencil drawings. I'm
hoping my eyes will clear up soon. It is like having one problem
after another.
God Bless, Sue.
Hi, I'm Barb. I am a 70 yr. old granny who was diagnoised a little over
3 years ago with Dermatomyositis. I have been through every test
(blood, x-rays, scans, MRI's, ect. Medications, prednisone, immuran,
pain killers, again, etc.) I think possible, however, I'm sure more
could be found. I have done the IVIG, Cytoxin (via intervenous), I
have been to the Marshfield Clinic (Marshfield, WI) and the Mayo Clinic
(Rochester, MN). I went off the cytoxin in September 2006. and I am
only on 10 mg. prednisone (daily). About 4 months off of cytoxin I
began to feel "free." I seemed to lose a heavy feeling through out my
body. I think it was finally the drugs leaving. I have had to use a
walker with wheels to walk. Two years ago I developed drop foot (right)
and one year ago I developed drop foot (left). I now walk with special
shoes and braces up to the knees. I have a balance problem. When I
started to feel "free" I noticed that I could let go of the walker for a
bit and walk with the support of a cane. I was so thrilled that getting
out of bed in the morning was a joy and I was like a kid with a new toy.
Today I still have the complications of the DM and the Nuropathy. My
feet are numb and the burning goes up to my knees. But God has heard my
prayers and I'm walking again (sometimes without the cain!) Maybe I'm in
the wrong spot for this testimony. I guess I'm wondering what others
think about their medications, etc. I'm very discouraged with
prednisone. On 80-100 mg.a day I put on 50 pounds and was so
discouraged that I had to go on anti-depressants. As I have come down
from Predniswone I have lost the 50 pounds and that in itself has made a
great improvement in my out look each day. Anyway, I'm out visiting
various groups and if I'm in the wrong place feel free to bump me out.
I'll go quietly [:-$]
Hello
could you please email me Dr. Marshal site (homepage).
is he living in USA or Aus.?
Thank you
soheila
Hi Deb,
I came off MTX cold turkey when my routine blood tests revealed highly elevated
liver panels. It took about 6 months and during that time I was only on Bextra
(useless as far as I was concerned). I wish I could say, Deb, that my PA stayed
in check during that period but in reality I became in increasing pain with each
passing month. What does your rheumatologist say?
Wishing you wellness,
Kathy F.
Hello Folks,
I recently went off of methotrexate temporarily to take an antibiotic for
strep. I have not had any adverse side effects, no spiraling into a
terrible flare or anything,.....at least so far.....I have continued to take
all of the other NSAID's I usually take.
I am wondering if I should try to stay off of the MTX to see if I am doing
this much better symptom-wise, or perhaps it takes a while to get the
existing MTX in my system? I do not want to end up on prednisone or
anything because I did not go back on the MTX and tressed my body into a
horrendous flare!
Has anyone out there tried staying off of the MTX with any success? Does
one have to taper off of this drug?
Any advice would be appreciated. You all are the best!
Deb
Has anyone heard of, or used, Essiac Tea?
It was reccommended to me by a gentleman who says it has controlled
his symptoms of Lupus and Fibro as well as his chiropractor's
leukemia. As with many such things, it sounds too good to be true.
What think you?
Patty in a cool Pineywoods of East Texas
I've banned this person from the group.
Chris.
Hi Everyone,
This morning I was watching T.V. and I saw a brand new commercial
about Enbrel-for the first time I saw writing at the bottom of the
commercial that Enbrel was good for five years. Does this mean that
after being on it for five years that it isn't as effective? Did
anyone else see this commercial? I wonder after the test study that
they came to this conclusion. I was so surprize when I saw this!
God Bless, Sue.
Hi everyone,
The other day I went to my Eye (Ophthamologist)Appt. I have iritis
and conjunctivitis in both my eye-worse in my left eye. He gave me
some eye drops and is going to start me on steriods Friday. Please
if any of you have eye problems please make an appt. just putting
this off I can barely see out of my eyes and it flares just like the
rest of my body. It is so scarey that PA and related diseases can