Saturday, January 17, 2009

Multiple Sclerosis and Rheumatoid Arthritis

Last Friday evening, I participated in a bi-weekly chat hosted by fellow MS blogger, Joan of A Short in the Cord, who was profiled previously on Health Central.

Of the ten people who participated in the chat, three of us are diagnosed with both multiple sclerosis AND rheumatoid arthritis. One of those three is more recently diagnosed with lupus as well. Her name is Nancy and she asked me about my diagnosis and treatment choices.

It was interesting that 30% of the participants in that one chat session were diagnosed with at least two autoimmune disorders, including MS and RA. I am aware of a few more MS bloggers who have the same diagnoses. If the National MS Disease Registry Act ever becomes a law, then we will have more information about these “double-dipper autoimmunies.” (Don’t worry about researching that phrase, I just made it up.)

So here is the abridged historical version of my diagnosis with MS and RA.

Background: In college I was a music major, piano performance and instrumental music education, and had planned to be a band director. Turns out I have trouble thinking straight with too much sound and stimulus coming at me at once. So I proceeded to get a graduate degree in horn performance and from there a doctorate in music literature and brass pedagogy with minors in music theory and natural horn performance. (Side note: Musicians often practice and perform under situations of physical pain and discomfort.)

In 1993, I experienced some vision problems and eye care on campus was provided within the School of Optometry. Eventually I underwent MRI scans looking for a possible brain tumor, but nothing was found out of the ordinary.

Read this post in its entirety:

"autoimmunies r'us" - A Diagnosis of Multiple Sclerosis and Rheumatoid Arthritis


I selected this post to be featured on my blog’s page at Multiple Sclerosis Blogs.

21 comments:

  1. I'm sorry that you've had such a rough time with this double whammy! I have MS and my mom just found out last year that she has RA. If it wasn't for Remicade she would be, well, she wouldn't want to be alive. We all wondered where the autoimmune came from when I was diagnosed with MS. Then when she was diagnosed with RA, we at least felt less blindsided I suppose. I still have hopes that my MS can be attributed to aspartame and that I won't have increasing problems since I avoid aspartame now. Mom says that she will avoid aspartame as well, but I have a feeling that it is hidden in a lot of foods.

    Anyway, I got off topic! MS and RA ... oh my I hope I don't end up with RA as well. Mom's is under control but she can really feel it when it gets near to her next Remicade treatment time.

    Best wishes to you!!!

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  2. Wish I had made it to Joan's chat. Seems I am double dipping too. I got sent to the Rheumatologist last week after a positive speckled ANA. This came after complaining of deep nauseating pain that was new to me, not the run of the mill MS nerve pain in my extremities. More lab work is in progress...we shall see.

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  3. I think that multiple auto-immune issues are common. I have had rheumatoid-like symptoms over the years and my RA factor is slightly elevated. My hope is that I never develop rheumatoid arthritis but I guess only time will tell...

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  4. well, I don't have a *serious* other AID...but, if you count alopecia areata (sp?!? losing it here), which is a hair loss autoimmunie, then I've got a twofer going also.

    Linda D. in Seattle

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  5. I have had RA for 21 years now (I just turned 43). I also have had FM for 16 years and have now been diagnosed with MS too. I was wondering if anyone has had successful treatment with 2 separate drugs treating both diseases separately or have people been getting treatment for both with one drug? I am in a dilemma right now as to what I should do. Can anyone help?

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  6. @Oct - Being dx with RA was actually a good thing for me, because otherwise I would have had Carpal Tunnel Surgery which would not have "fixed" the problem. My hands were so painful that I couldn't stand to touch anything. I wasn't playing piano; fingers were curled up; and I even have a couple of "crooked" fingers now due to the damage. But I'm doing SO MUCH BETTER than before.

    @Bubbie - I hope that you will let us know what it turns out to be. Nauseating pain sounds horrible.

    @Nadja - Turns out that my RA factor never really tested more than just slightly elevated. I am so thankful to have started treatment for the RA cause I began to feel better in less than 2 months.

    @Linda - Autoimmune is autoimmune. Sounds like you are a member of the "double-dipper" club. Do we need an even more special bus?

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  7. @yeshuakid -

    Welcome. I'm sorry to hear that know you've been diagnosed with RA, FM, and MS. That's just not fair, is it?

    How has your RA been? Under control?

    What medications have you used to treat the RA and/or the FM?

    I ask because it is known that a side-effect of the biological drugs for RA (ie. Enbrel, Humira, Remicade) is an increased risk of demyelinating diseases. Actually, if a patient already has MS, then she cannot use one of the "tumor necrosis factor inhibitors" which I listed above.

    For RA, I use methotrexate which is sometimes used for MS as well (but not as common as it used to be). I also use Sulfasalazine which doesn't interfere with the MS meds at all.

    Other drugs which are sometimes used for RA, and have been used for MS, include Cytoxan and Imuran. Also, Rituxan has been studied for the treatment of MS.

    Please know that I'm not a medical professional and can only pass on information I have learned or rely my personal experiences.

    I have found that my neurologist and rheumatologist have been very helpful in communicating with each other. And I thank them each for being so knowledgeable about different treatment options.

    I'm here to talk more anytime.

    Lisa

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  8. Here's the deal. I have been on multiple types of RA drugs but none have really "helped" in a sense of stopping the progression of the disease. Now the RA doc is wanting to put me on Rituxin which she claims will treat both RA and MS and is now consulting with the Neurologist over this. However, I have a very lengthy history of upper respiratory infections and I have some moral issues with using biological agents in my body. Has anyone out there been treated with say a combo of interferon and methotrexate or maybe another combo that is not biological? I have refused all biological drugs because of my past history with infections and the increased risk for more serious diseases to appear as a side effect (TB, PML and all kinds of things). Any help would be appreciated here. Thank you all for your info and help. It has been GREATLY appreciated. I just don't want to end up on 20 different meds to treat both diseases....plus this whole mess really STINKS!

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  9. I have had JRA since I was 4 years old. I am now 36. I have recently experienced numbness, weakness and tingling in my legs and arms. My rheumatoligist belives it is MS. I am scared beyond belief. Everything that I have read online about MS has been quite scary. I will be seeing a neurologist within the next few weeks. In the meantime, I will be literally waiting on pins and needles! I have been on Enbrel injections for the last 6 years. I have stopped them and I know I will be in a lot of pain soon enough. I have been researching drugs that work to help treat both diseases. Are they truly effective? I have never met anyone with RA or MS. I feel so alone and very scared. Mostly scared. My world is spinning! I am a teacher and I'm scared that I will no longer be able to teach. Teaching truly is my life! It would be nice to hear any encouraging words or advice from people who suffer from the same diseases that I have. It may make things less frightening... Thank you.

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    1. Hi Angel,
      I just read your post which was written 4 years ago. I hope your RA is under control. I went on Enbrel for 12 years and it worked great then it stopped working and I had to switch. My doctor put me on Orencia infusion once a month, I am very comfortable on it and I have no side effects except a little sore throat for a day or two and some weight gain. I do have the same fear of developing MS. Is there a test to do every once in a while to rule it out?

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  10. @yeshuakid

    I've tried to find more information for you regarding possible treatment choices. Please keep in mind that I'm just a patient as are you.

    For my MS, I use Copaxone which is the brand name for glatiramer acetate (formerly known as copolymer-1). "Glatiramer acetate,
    the active ingredient of COPAXONE®, consists of the acetate salts of synthetic polypeptides, containing four
    naturally occurring amino acids: L-glutamic acid, L-alanine, L-tyrosine, and L-lysine."

    A combination of amino acids sounds good to me and it does not have an immunity-lowering effect.

    As stated above, I use both methotrexate (once weekly) and sulfasalazine daily. A third drug which is often used in combination with those is Plaquenil, however it did not work well with me.

    Omega 3, glucosamine-chondroitin, and vitamins B12 and D also help. It is important to know that when someone uses methotrexate, they also must take Folic Acid daily. I take 3pills of 400mcg Folic Acid daily.

    Beyond this, I'm not sure. I understand the possible fears of using a monoclonal antibody treatment, but Rituxan could (potentially) be used to treat both. If my RA had not come under control, that would have been my next (only) choice.

    Good luck and if there's anything else, please don't hesitate.

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  11. Angel,

    Wow, JRA since the age of 4. You have 32 years experience, many more years than I in the realm autoimmune diseases. But I do know how scary it is to thinking about having a new disease, especially one like MS which can be rather daunting.

    Please know that many, many people who have MS live a normal, active lives, even those of us who are teachers. There can be many scary MS stories online, but there are also many voices who are simply expressing fears.

    Please do not think that every symptom or difficulty would become your symptom or difficulty. It doesn't work that way.

    As far as medications go, you can see that I take drugs to treat MS and RA separately but in combination. While you have stopped the injections, have you started anything like methotrexate to treat your RA while you wait?

    It really is wonderful that you are already under the care of a rheumatologist who evidently is keeping on top of changes in your disease. That's great.

    What will happen at the neurologist office will be a full neurological exam and maybe some more bloodwork looking for any other reason for your symptoms. You will be sent to have an MRI with and without contrast agent (which is injected into a vein) of the brain and likely the cervical spine (neck). The radiologist and neurologist will be looking for lesions which can show inflammation and demyelination.

    (Enbrel is known to contribute to the development or aggravation of demyelinating diseases.)

    In the process of being diagnosed with MS, I also had to have a lumbar puncture to test proteins in the spinal fluid and a series of Evoked Potentials testing to measure delays in nerve speed.

    You are most definitely not alone here and understandably scared. Please know that you are very welcome to ask as many questions as you'd like. I'd be glad to help you any way I can.

    Thank you for reaching out here.

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  12. I have multiple sclerosis as well as Hashimoto's thyroid disease. I am also showing symptoms of RA my mother has this. i will have my doctor do all the labs the next time i see him. i hope it is just simple arthritis. my middle finger middle joint is enlarged and very sore at the moment i know this was posted last year but i googled this lisa.
    take care,
    camille

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  13. Hi Camille,

    I hope that you don't have RA as well, but I'm afraid it wouldn't be surprising. Before I started meds for RA, my middle finger on the left hand was double it's normal size. The swelling is down but it's still larger than any other finger joint.

    There are quite a few of us I've met online who do have both MS and RA, and there are others who have thyroid disease with those as well. I'm hypothyroid but controlled with synthroid.

    I hope that your MS and Hashimoto's are doing well otherwise. And it's very nice to meet you!!

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  14. I was diagnosed with ms 12 years ago and was hit hard the the first few flair-ups, not being able to walk right after being diagnosed. I walked about 20 feet and would have to stop and so on for about 8 months. Every since then I do not have many physical limitations except not being able to drive more then 30 minutes before my right legs on fire. Before being diagnosed with ms I did also have hoshinotos (hope I spelt it right) thyroiditis and told that I would have to take synthroid forever. After 10 years I was taken off the meds for my thyroid because they said it was fine. I will get to my point in one minute, sorry I tend to ramble. I suffer from severe depression from my ms and can't seem to get it under control, if someone can help me with that I would appreciate it. I feel like I don't want anything to do with family, friends, etc. Now I was to see my neurologist back in October and my legs were really bad, I can't straighten them out all the way sometimes, forget it if I'm sitting on the floor I can't get up because the pain in my legs mostly behind the knee is so bad. He told me he thinks its arthrits...ok now I'm thinking months later, this is not going away and he never referred me to another dr. Are these leg symptoms consistant with RA. He said it wasn't part of my MS. I was having problems with my shoulder and mri done, xrays and so on they did say I had some arthritis. I'm really confused about RA and how am I diagnosed and how do I stop crying!!! Help

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  15. Hugs to all who suffer with multiple diseases, (I have MS,RA, FMS, Hypothyroid)as if one wasn't bad enough! I am too brain challenged today to write much. I feel like I have been on a roller coaster of emotions as taught by Elisabeth Kubler-Ross in her book Death & Dying (also applies to chronic illness, etc). I've got through denial, anger, bargaining, depression, having trouble with acceptance and revisiting the anger and depression. I am on Imuran, solu-medrol injections, prednisone for both MS and RA. The only pain pill I could tolerate (Darvocet) has been recalled. Starting Gilenya soon, the rheumatologist and neurolgist are hoping the Gilenya helps for both, fingers crossed. My husband is on Gilenya for his PPMS and his brain fog has been better and some of the cramping. Thank you for this blog sight, when I have half a brain, I'll read on:) Take care all! Vicki - Florida

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  16. One more thing... steroids can cause glaucoma. I have been on them since 2004. In the fall, I had to have surgery on my eyes for closed angle glaucoma. The only reason I found out I had it was a required pre-screening Opthamologist appointment to qualify for Gilenya. Hugs to you all!

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  17. My mom was diagnosed with MS when I was in 2nd grade. Relapsing/remitting.

    I was diagnosed age 27 with autoimmune pernicious anemia, after I saw a neurologist for my MS sypmptoms....then a year later I was diagnosed with RA.

    So far though...my MS symptoms have never completely resolved, they've gotten better but have come back over the last few years since I was dx'd with the 2 other autoimmune diseases.

    Do you think it's worth it to pursue another neurologist visit? The worst symptoms for me is the cognitve/memory problems, muscle weakness, and fatgue. They have been affecting my work.

    What's your advice?

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  18. I have been diagnosed with RA, Lupus, and Sjorgrens and last weekend had new symptoms - electric shock like pain along with numbness and tingling in my hands, parts of my face, my upper back (which has stayed) and my arms feeling like lead weights. At the follow up with the doctor MS was mentioned, but he's waiting for another episode or further symptoms before ordering an MRI. I already have very limited energy and my hands and muscle problems - tons of swelling. I'm allergic to the methotrexate so that didn't work and the plaquinil didn't seem to help after a year on that. I do get short term steroids last time was a couple weeks ago when my jaw locked up. The long term steroids stopped working after 2 weeks. I seem to not respond well to the drugs. Its very frustrating. I am unable to work anymore and spend a lot of time in bed. Very different life from what I was used to before getting sick.

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  19. I have relapsing remitting MS. I have also been recently diagnosed with Gall bladder problems (on waiting list to have gallbladder removed) - with the very cold and snowy last few weeks I've noticed far more joint pains than I've ever had..... In places I've never had them before (left shoulder, right knee, right thumb and fore finger and VERY MUCH in my spine). I'm used to pain with the MS, but I'm very much afraid that these unusual pains may be the onset of RA.
    I have a sinking feeling when I think I might be right about this - so much so that I don't want to actively pursue this line of enquiry with my GP. I think I'd rather bury my head in the sand - don't know if I want to face another damned disease head on! Question is, is ignorance bliss?

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    1. Welcome. I can understand what you mean about wanting to bury your head in the sand. Facing multiple diseases takes a special perseverance. If you have been experiencing a new pains in your joints, it would be a good thing to mention it to your doctor. For some people RA can come on slowly, but for others it may develop rather quickly. The important thing to know about RA is that it effects more than just joints. Early aggressive treatment is commonly recommended to prevent damage. I know that it doesn't sound like something you want to do, but I do encourage you to talk to your doctor. Get a referral to a rheumatologist even. At the least, you may be able to treat the pains and feel better.

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