RA & MS | Arthritis Information

I just joined the sight today, and am hoping there is someone out there who can give me some information in order for me to make some good decisions.

I have had RA for 20 years. About 1-1/2 years ago I started on Humira and it was very benefical. Six months ago I started having problems with my vision. My legs started to tingle and my feet started to burn, especially after exercise. After 6 months of going to numerous specialists, I was diagnosed with MS. One of the rare side effects of Humira is exascerbation of neurological problems. I was not aware I had any neurological problems until 6 months ago. I am now faced with decisions on drugs to treat MS.

Is there anyone out there who has both RA and MS?

That would be me! And I thought I was the only one. Let me help. First--you're right. Humira isn't good for MS. Let's talk. What do you want to know? (Not that I know everything...)

Amen! I just knew there had to be someone out there.

Once you stopped the Humira, did the MS symptoms subside?

It seems the most popular RX is to treat with meds that scare me. Have you gone on any MS meds. Do you continue on RA meds? My Dr took me off all my RA meds until about 3 weeks ago when I was put on a low dose of prednisone.

I only was diagnosed with RA about 6 months ago. Have been diagnosed with MS for 4 years.

I'm taking Copaxone for the MS. Chose that over other options because of fewer side effects. It's supposed to slow the progression of the MS. Don't know if I'll ever know if it's working because I don't know what sort of exacerbations I'd have gotten had I not been taking it. I'll tell you more about Copaxone if you'd like to know later.

From what my doc told me, and I've confirmed through research, there are 4 biologics. Enbrel, Remicade, Humira and Kineret. The first three exacerbate symptoms of MS. Kineret does not. Therefore, that was the only option my rheumy offered me. I've only been taking Kineret for 11 days, but so far so good. Yes, I take both. Absolutely nothing bad so far.

Something I'd like to know from you: What specific tests were given you in order to get to the MS diagnosis? MRI, lumbar puncture, evoked potentials? And which MS did they tell you you have?

Hon, the MS symptoms won't subside as a result of your stopping the meds, I don't think. They're both automimmune diseases, but MS affects the central nervous system. RA does not. MS is a weird disease--it just comes and goes--if yours is relapsing/remitting MS, and you don't know when it'll happen. You just don't want to make it worse by taking a med for the RA that will exacerbate it. So the idea is to make the MS symptoms less frewuent, or hopefully non existent. I'll tell you I haven't had but one flare of the MS since I started taking Copaxone, and that only lasted bout 6 weeks.

Oh, boy. That wasn't what I wanted to hear. I was so hoping there would be this cause and effect thing where if i stopped the cause, I would also stop the effect. Too simple I guess. But you can't blame me for trying.

My first diagnostic test was a brain MRI. There were 3 lesions. Then I was referred to a neurologist who sent me for an MRI of my spine. Another lesion. She then sent me for a spinal tap and also the VER test. My VER numbers in both eyes were significantly above the norm, however my lumbar puncture was within norm.

I haven't been told what kind of MS I have. I am assuming, from my research, that most people, upon diagnosis, have relapsing/remitting. I've been doing alot of research and I did find one study done by MAYO in 2002 (I think) that recommended the wait and see approach for those with relapsing remitting. I have to admit, I'm thinking I might go that route. I have to let my neuro know in a couple of weeks what I choose to do. She recommends meds, but will let me choose unless my next MRI shows an increase in lesions or other signs of progression.

What RA meds do you currently take?

"It seems the most popular RX is to treat with meds that scare me." Which meds? What exactly about these meds scare you? And tell me--how bad is the pain from the RA without meds?

Just so you know, a quick burst of prednisone will help with MS flares if you have them. Your neurologist, for example, will probably prescribe it if you have an exacerbation. So the pred for the RA could be preventing or minimizing some MS issues you don't even know are happening. Does that make sense?

To answer your questions, I'm taking Copaxone for the MS. Then for the RA I'm taking 15mg prednisone/day, 25mg MTX/wk, Kineret daily. Hoping the Kineret will aloow me to wean off of pred, then possibly off of MTX. Prednisone is a wonderful drug that works well but has dangerous side effects, so you can't stay on that forever.

Let me tell you--if I had to choose between MS and RA, So far, I'd choose MS. The pain from my RA is unbearable! And by the way, sounds like your neurologist gave you all the right tests. I just heard from another person whose neurologist was prescribing MS meds with nothing but an MRI. Not good.

Sara38487.7128009259

Thanks for the info Sara. It is good to know that there is someone else out there.

Years back, I took metho for my RA. I was sick all the time. Gave myself an injection, and then just when I'd start to come out of the nausea, fog, malaise, it was time to give myself another shot. I did do that for a number of years. Sounds like the beta blockers are similar to metho with malaise, nausea, fatigue, etc. My brother in law is on Rebif and although it has helped him, it also has that depression factor. I don't want to go there.

Prednisone I've also had experience with. It is a "miracle" drug, but not without it's own side effects. Even the low dose I am on now is causing me some stomach problems. My arthritis pain level is much better when I'm on the prednisone. My pain I have learned to accept and live with. I drink tons of water, exercise, eat very healthy foods, and believe it or not, it does help me. I struggle pain and fatigue, but it is not a constant pain every day. I struggle most with fatigue. Tomorrow I go back to my RA doctor to talk about what route to take, so I joined this message board to glean any information I could from people like you. Thanks so much for taking the time to share with me. I hope you are able to find something soon to help with your pain.

My pleasure.

I'm a big proponent of agressive treatment for both. Sounds like your neurologist is, too. But you know how you feel, and how much you can take. I chose the Copaxone over Avonex, Rebif, BetaSeron for exactly the reason you described--didn't want the flu-like symptoms. Holler if anything else comes up. You know where to find me.

Case

I have read some articles that have suggested that a MS type symptom from a biologic may subside. Look up DR Mohan Georgetown Univercity. A case history on a 48 year old male on Enbrel. Somewhere in there it stated that most of the symptoms subcided after he stopped but did not say how long....geoff

Hi all. I posted about a week ago and asked if anyone had bothRA and MS so I am glad to see this topic.. I was diagnosed with RA approx.2 years ago. I saw a neurologist last week due to MS symptons and am waiting for an MRI. Will probably have to wait 6-7 months. Currently taking MTX,Arava and Plaquenil for the RA. I have felt sick now for 2 years (flu-like) and I hate it. Also lots of fatigue. Possible MS symptons include truncal dystonia, electric shock feeling in fingers and around mouth, pain in eye (no double vision) sensitivity to heat, many episodes of BPPV(diagnosed with Menieres many years ago), bathroom at night 3-6 times, muscle pain and sometime weakness. It is hard for me to tell what is RA, what is side effects of meds or if something else (like MS) is going on.I am finding it increasing hard to deal with the nausea and fatigue. I spend approximately 70%of my time in bed. (Also had 6 kidney stones..take meds for that as well as Serc for Meniere's.)

Thanks for listening. I would love to know what your MS symtoms are.

Take care

Transam... You may want to see an ENT doctor to check for Meniere's Disease. Symptoms include vertigo and tinnitus.

Take care

Years ago, before anyone figured out there was such a thing as BPPV, ENT's and neurologists diagnosed a good number of vertigo cases as Meniere's. Now they know differently: it may not be Meniere's after all. Best to check with ENT to confirm Meniere's. Could be that you have BPPV and not Meniere's. BPPV is easy to treat.

Yes, I've have had BPPV. Many years ago I was diagnosed with Meniere's, which turned out to not be the case.

Good luck.

Hey guys been to every specialist there is, ent, RA doc, reg doc. Neurologist etc. Cant seem to find the prob but its there and its hell, been like that for at least 12 years Now. Like I fell off a spinning circus ride and got the flu at the same time and it never left. Have had ct scan but not MRI and my RA is very active and also have OA. It almost mimics a thyroid prob or a thing called Myasthenia gravis or sjorens, but there are things on there that would suggest MS also. Very weird and hard to diag. All my bloodwork comes back really good, alll within normal range for thyroid, adrenal function and things like that, except for the RA factor, it is high and active. But what is normal range for one person isnt necessarily for the other. Meanwhile it has been driving me nuts, and has ruined my life. Thanks for all the replies. I appreciate it. If anyone can think of a specialist I didnt do, let me know.

Case

wantingtoknow--

Many of your symptoms do sound like MS (truncal dystonia, electric shock feeling in fingers and around mouth, pain in eye (no double vision) sensitivity to heat) and you've described my own symptoms. But I've been diagnosed for 4 years. Been taking Copaxone for the MS since then, and I've had zero exacerbations since then. Yay!

Was diagnosed with RA a little over a year ago. Taking Kineret for that. (MS patients should not take the other three biologics, as they can make MS worse.) Since starting Kineret about 9 months ago, I've been so much better. On a scale of 1-10, the pain is down from an 11 to about a 2. I also take MTX 25 mg. I've been completely off of prednisone for about 2 months. Yay again!

Why do you have to wait so long for the results of your MRI??? If it comes back positive, your neurologist should send you for an evoked potentials test and a lumbar puncture before making a definite diagnosis. There are other things I can tell you about my experience. Please feel free to PM me if you like.