One autoimmune deserves another?

[Jennyfoo]

Have you all heard that once one autoimmune disease is obtained, it's likely you'll develop others?

This is my concern, ever since being diagnosed with Ankylosing Spondylitis 2 yrs ago. I've been tested for Crohns because I was having bowel issues and severe nausea. Turned out I have gastroparesis. I am pretty sure I have psoriasis, but I've not been able to get into a dermatologist when it was flared up, and now am having neurological symptoms. I'm a little scared because I took my Humira shot for the arthritis last night, and an hour later, the dizzy/spacey feeling that had gotten a little better, was worse. I feel plain awful today. I'm worried because if I have MS, I shouldn't be taking an anti-tnf med like Humira. Apparently it will make MS worse or taking it can lead to MS symptoms. The only way to know which is going on is by an MRI. I'm waiting to get into my new dr now. I called the office and they won't see me until next week. I had to register with the practice online, then they'll schedule me in sometime next week. I can't see the actual dr. until the end of the month because she's so busy. I like that it's a busy practice. It means they won't waste my time making me come in, just to tell me all my labs were fine, like my old dr did. My hubby's dr office just calls him with results and suggestions.

I'm worried about the Humira though. I know it made me feel worse, but without it, I'm in miserable pain from arthritis. I hope it's not MS. I don't have any idea how I will manage in that kind of pain again.

[sooo_tired2]

I can sympathize!

Jennyfoo,
Sorry to hear about your situation, mine is very similar. I have had psoriasis and psoriatic arthritis for years, and was diagnosed with MS in January. I took Enbrel shots for the psoriasis stuff and also tried Humira for a short time. I will probably never know if the drugs caused the MS, but I have to wonder as there is absolutely no neurological stuff anywhere in my family history. As I understand it, most people taking the TNF drugs who end up with MS symptoms it clears up after the drugs are stopped. I wasn't that lucky - I'm over a year off all of the drugs and my MRI's are still lit up like a Christmas tree. Best of luck to you!

[Jennyfoo]

Thanks for the response! It's great to find someone who may be in a smiliar boat. I'm pretty sure I actually have psoriatic arthritis/spondylitis, and not actual ankylosing, but whatever. Treatment is the same.

So, after your MS dx, what treatments have you been able to do for the arthritis? I'm diabetic, so no steroids. I'm allergic to Sulfa, so no sulfasalazine. As far as I know, I can only continue on methotrexate if I do have MS. Methotrexate does very little for me. In fact, I still developed iritis while I was on bi-weekly Humira. It only went away and stayed away after I was upped to once/week shots. I'm really scared that if I have MS, or even if I don't, but have to stop the anti-tnfs, that I'm going to go blind. A 2 month battle with iritis cost me 10 pts of visual acruity in one eye and 5 in the other. I was dxed and being treated 2 days after symptoms came on. It just didn't want to go away.

I'm already on oxycontin for the pain too, and not a small dose. I'm undermedicated too, with severe pain on a daily basis that oxy doesn't touch. I'm so afraid of more pain, worse pain coming back if I have to stop Humira. My SED rate has climbed over the past few months and I don't think it's working very well any more though. We were talking about switching to Remicade.

Ok, sorry to ramble. I just hate feeling like things are so out of control, and the unknown just makes worse.

[cosake]

I have been told by my MS specialist that if you have one autoimmune issue, you are more prone to other autoimmune issues.

I have ITP, an autoimmune blood disorder, but I've been in remission since having my spleen removed in 1978. We are careful to do blood work and keep an eye on fevers, infections, etc.

Now, I'm diagnosed MS-CIS and going to have more tests in June to see if I can get full MS diagnosis. I don't want to take meds unless I have full MS diagnosis.

I am also suspected to have IC (interstitial cystitis, which has to do with inflammation of the bladder lining that causes pain, and urinary frequency and urgency). It is said to be a condition that occurs in conjunction with other autoimmune diseases.

I am also suspected to have adenomyosis (like endometriosis, but inside the uterus), which may also be associated with autoimmune diseases.

I've also got some skin issues going on that I haven't had checked out yet.

I think everything is linked together, and if you have one autoimmune issue, you are more likely to have other autoimmune related issues.

I hope things work out with the new doctor. Keep us posted.

[sooo_tired2]

So, after your MS dx, what treatments have you been able to do for the arthritis?

I am currently not doing anything specifically for the psoriatic arthritis other than prescription naproxen once or twice a day and I am currently taking prednisone for MS flares (don't know if has been one really long flare up or several small ones...). I believe that the MS was kicked off by Enbrel, so at this point I just can't bring myself to start any other new drugs for the arthritis. I know that one day soon I'll reach the point where I can't tolerate the pain any longer and I'll start something new (not sure what yet). I am taking daily shots of Copaxone as treatment for the MS, but so far it seems to be moving full speed ahead since I started taking the shots in February. My neurologist is talking about switching over to one of the interferon drugs soon if I can't slow it down with Copaxone and steroids.

I'm so sorry to hear about the struggles you are having with pain issues. I wish you all the best in getting some control over it very soon. Perhaps Remicade may be the answer for you at the point where you are. Just know that you are not alone - I'm struggling right next to you and somebody else is fighting it right next to me.

[Tawanda]

injectables for RA, psoriasis, etc.

I am currently not doing anything specifically for the psoriatic arthritis other than prescription naproxen once or twice a day and I am currently taking prednisone for MS flares (don't know if has been one really long flare up or several small ones...). I believe that the MS was kicked off by Enbrel, so at this point I just can't bring myself to start any other new drugs for the arthritis. I know that one day soon I'll reach the point where I can't tolerate the pain any longer and I'll start something new (not sure what yet). I am taking daily shots of Copaxone as treatment for the MS, but so far it seems to be moving full speed ahead since I started taking the shots in February. My neurologist is talking about switching over to one of the interferon drugs soon if I can't slow it down with Copaxone and steroids.

I'm so sorry to hear about the struggles you are having with pain issues. I wish you all the best in getting some control over it very soon. Perhaps Remicade may be the answer for you at the point where you are. Just know that you are not alone - I'm struggling right next to you and somebody else is fighting it right next to me.

I find this interesting because my doctor told me that my brother should not be using injectables like Enbrel for his RA because one of the side-effects is multiple sclerosis. I was also told I could not use any of the injectables for my psoriasis, either, but then I wondered...I ALREADY have M.S., so in my case, what could be the harm?!

I didn't think about it until I was in the car, but my M.S. Specialist has warned me of the same thing. I am just wondering if it is really the injectables, or the fact that you are already biologically susceptible to M.S. and other autoimmune issues.

[Jennyfoo]

I've been digging online, doing a little research. It seems that they don't know if the anti-tnfs cause MS, or if they may speed up progress of MS, or trigger it in a susceptible individual. There have been cases where once injections were stopped, the MS symptoms, including lesions, have gone away. The problem is that these meds are relatively new and there's no long-term follow-up available on these people. Who knows if they remained MS free or if they eventually developed it. There's just not enough info. It does seem that MS has been linked to inflammatory bowel disease and psoriatic arthritis and spondyloarthopathy arthritis diseases are also linked to IBD, so I would assume that individuals with those certain kinds of autoimmune arthritis would be more prone to developing MS. It makes sense. I am HLA-B27 positive, which is a gene that is seen in spondy diseases, psoriasis, and IBD. It would make sense that MS would also be more of a risk.

TNF is a protein that triggers inflammation. The anti-TNF drugs like Enbrel or Humira attempt to block TNF. Something about blocking TNF makes MS worse or can trigger it in a susceptible person.

That's the basics of what I've found. It doesn't really matter what triggered what, or if it was there to begin with IMO. It is what it is.

[Tawanda]

THANK YOU!

I've been digging online, doing a little research. It seems that they don't know if the anti-tnfs cause MS, or if they may speed up progress of MS, or trigger it in a susceptible individual. There have been cases where once injections were stopped, the MS symptoms, including lesions, have gone away. The problem is that these meds are relatively new and there's no long-term follow-up available on these people. Who knows if they remained MS free or if they eventually developed it. There's just not enough info. It does seem that MS has been linked to inflammatory bowel disease and psoriatic arthritis and spondyloarthopathy arthritis diseases are also linked to IBD, so I would assume that individuals with those certain kinds of autoimmune arthritis would be more prone to developing MS. It makes sense. I am HLA-B27 positive, which is a gene that is seen in spondy diseases, psoriasis, and IBD. It would make sense that MS would also be more of a risk.

TNF is a protein that triggers inflammation. The anti-TNF drugs like Enbrel or Humira attempt to block TNF. Something about blocking TNF makes MS worse or can trigger it in a susceptible person.

That's the basics of what I've found. It doesn't really matter what triggered what, or if it was there to begin with IMO. It is what it is.

Thanks for the research and the information. The last thing I need is for my M.S. to get WORSE!

Just curious, how did you find out you were "HLA-B27" positive? I've had my genes examined (along with M.S. and non-M.S. family members since we are a "cluster family") for a study conducted by the the USFC. The study results did not give individuals specific information about their own DNA profiles, just generalized findings of the genes involved in the M.S. process.

[Jennyfoo]

I was specifically tested for the HLA-B27 gene as part of my initial arthritis workup by my first rheumatologist. It's routinely tested because something like 90% of people with the arthritis disease I have test positive. It didn't mean I had the disease, just that i was at a higher risk. So that, symptoms, other labs, and history, led to diagnosis.

[Tawanda]

I was specifically tested for the HLA-B27 gene as part of my initial arthritis workup by my first rheumatologist. It's routinely tested because something like 90% of people with the arthritis disease I have test positive. It didn't mean I had the disease, just that i was at a higher risk. So that, symptoms, other labs, and history, led to diagnosis.

Yes, I assume that is what my genes are revealing, that I was "at a higher risk" for M.S. Now my family is partaking in a general autoimmune study. This will include the MSers in my family, my bro with RA, my aunt with some type of arthritus as well as some of the healthy ones (the healthy ones are important as they serve as a control of sorts).

I no longer work, but I'll do anything for the cause. Makes me feel useful.

Thanks for answering my question.