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RA and MS, Anyone Else Diagnosed With Both?
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An_245423 posted:
Other than "Sarah," is anyone else facing or aware of dual diagnoses for RA and MS? Treating MS is particularly challenging due to immune compromising drugs used for RA. Any information is appreciated.
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Caprice_WebMD_Staff responded:
Hi,

I'm responding to bump up this discussion so others, who may have missed it, can respond too, and to welcome you here.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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xperky responded:
I'm in the "possible" category for both. I have Fibromyalgia and I understand it can accompany RA or MS.

I've run across some info that states RA and MS are both auto-immune diseases. I gather there is some disagreement with that and MS though. If they share that commonality, then that is interesting.

I have read the anti-TNF drugs should not be used by patients with MS until further study. I'm thinking I would personally refuse them due to my prior nerve demyelination symptoms.

My thoughts are that these diseases are both "over-active immune systems" and inflammatory, so the treatments would work well together, but I guess I'm mistaken.

So, which awful disease takes precedence in treatment? Would it depend on the patient and how severe each disease is presenting itself?

Would some of the treatments, like prednisone, be helpful for both diseases?

I think it would take a good team of doctors for a patient to deal with the symptoms.

I feel for you, and anyone else with this double diagnosis.
 
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An_245423 replied to xperky's response:
xperky,
At 19, it was "fiborsitis" w/ likelihood of RA down the road. At 30, sero-neg RA Dx'd. Earlier the same year, developed ON w/ demyelination on MRI. 10 years later, full-bown MS after taking Enbrel for 6 mos. If I could go back, I would have turned down the Enbrel. RA hurts; MS disables.
 
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xperky replied to An_245423's response:
So, what about the Enbrel do you think enabled the MS? Did it reduce your immunity too much and give the MS an opportunity somehow? That's so discouraging for you. I sure hope you can balance treating the two diseases somehow.

Another question about the ON (optic neuritis) too. Have you had any oral prednisone issues? I have read about studies that say oral prednisone could possibly increase the chance of repeat ON. So here I am, looking at a possibility of being prescribed oral prednisone, for what seems like new IA symptoms, and not sure if that's OK for me having had ON back in 2003. (In case you haven't noticed, I am a worry wart!)

The trouble is, my foot pain is pretty bad from the "possible IA" and I can envision permanent trouble walking in the future. I know MS can cause loss of function very badly, but it seems some people become disabled from RA too. Especially if it is untreated. So, what a dilemna!

I'm so sorry you had such a negative result from your medicine. It doesn't seem fair to have to cope with so much.
 
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An_245423 replied to xperky's response:
Sorry, I don't know enough about the mechanism to speculate why Enbrel (re?)-triggered MS. I suspect the biologics that affect how our bodies function at the cellular/molecular level are bound to cause unanticipated side effects. I don't know what IA is. You got that right, life sure ain't fair. Re. the steroids, I've been on as little as I can handle for decades. Without 5 mgs. at night, I am the Tin Man in the rain without an oil can. When I had a round of IV steroids after official MS Dx, the only result I noticed was a rusty nail taste. I receommend you take a look at MSWorld.org's forums too. Although I have yet to meet anyone with dual Dx, it's a useful site. I think the hope for future is w/ stem cell therapy. I only hope it comes quickly enough for me!
 
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Chemie_1 responded:
I have both too! I was diagnosed with RA at age 9 and with MS ~20 years later. My neurologist has 6 other patients with both and one with RA, MS and Crohn's. I hear it's not too uncommon to have more than one autoimmune disease.

The most important thing I learned from him, that my Rheumatologist wasn't aware of, is that TNF inhibitors aggravate MS. So, that means no Enbrel, Remicade, Humira, etc. I am currently taking Orencia, Copaxone, and Naproxen (and methotrexate when my RA gets out of control every few years.) Copaxone is working very well for me now, but it does take about 6 months to 1 year to start seeing the full effects. And the Copaxone bee/wasp sting feeling hasn't gone away for me, but it's better than being blind every few months from ON. Concerning ON and oral prednisone, I have read the same thing, however I've taken oral prednisone for all of my MS flares and I haven't had an incident of ON since I was diagnosed.

There is a great website called "Brass and Ivory: Life with MS and RA".
www.brassandivory.org/

Good Luck!
 
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xperky replied to Chemie_1's response:
Thanks Chemie_1, for sharing. I hope you are feeling relatively good with your current treatments. I'm glad the Copaxone is working. It almost sounds like a miracle drug for many with MS.

You point out how important it is to develop a team of doctors, and also educate ourselves as much as possible. I'm glad your neurologist was well informed about RA medicines.

I'm glad you haven't had another episode of ON. It's so scary when that happens!

Good luck to you too!
 
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62lesley responded:
hi yes i to have ra and ms to and been on two lots of madication hope you are feelling ok the only thing is they tell me they don't know where one starts and the other stops i am in a wheelchair with ms befor i got ra what medication are you on
 
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4myk9z responded:
Hi all,

Have had RA symptoms along w/ severe dry mouth/dry eyes for over 7 years and in 9/11 finally dx'd w/ Sjogren's DISEASE w/ autoimmune component of RA which has been a huge challenge to get under control. Failed for one reason or other all of the oral DMARDs... did great on ARAVA except side effects became lifethreatening when I went into heart rate over 200 and HAD to come off of it. Had episode of ON in '09 caused by SHINGLES which landed me at the Cleveland Clinic (what agony!) and still have probs w/ vision/colors. Ended up readmitted when returned to Dayton OH and spinal tap inconclusive for MS but it's definitely on the radar as it has been now for several years. Guess the worse thing for me, aside from the pain, is the unholy FATIGUE which as you know, is debilitating in and of itself. Fall asleep standing up, sitting on toilet, etc. Significant injuries as a result PLUS started sleep walking as a result of the stress! Had to have a kneww replacemen as a result of THAT little freak show and had 14 fractures in knee when it had to be replaced... also severe osteoporosis w/ bone age of greater than 70 at bio age of 48. Having to be careful w/ RA meds being given because of prior "girl part cancer" that was excised in '10. On the Orencia injections now and hoping that Rheum will bump me up to the full dose of 750/month next visit as the 500/month (125 mg/week injection) isn't cutting it, especially as I had been trying to get off of the Pred. Completely cushingoid now and hating it. (sigh)... Seems like I just can't catch a darned break in my health since about 2001 and I'm desparate for one, regardless of how brief, just a reprieve from not feeling so bad EVERY day....


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