Question for others with vasculitis | Arthritis Information

 

Hi,

I'm new here. I was diagnosed with sero-negative RA and vasculitis about 2 months ago. I had vasculitis symptoms about 10 months before I had RA symptoms. My docs think they are connected problems but are not sure how. Did anyone else develop RA after vasculitis? Thanks for any info.

Laker

Hi Laker and welcome

I can't help much except I have heard vasculitus is related to RA. Hmmm, google?

I developed vasculitis after the onset of RA.  Mine was not too bad, spots around my fingertips.  At my worst, I was taking 200 mgs. of Imuran for it.  My fingertips were very painful from the "clots" and felt likes sores. Since I've been back on the Remicade, I am down now to 50 mgs.  I don't know how or why but the Remicade helps as my RD told me it would.Laker, they diagnosed the Vasculitis in me before the RA. I had these big, black ulcers that they saw when I was in the hospital with pericarditis. I also had inflammation of my eyes and the blood vessels in my head before that. So, it has always been scary for me. That's part of the reason for the neuropathy.

The reason that vasculitis is helped with the same meds as RA is that you are turning down that overactive immune system. Prednisone is necessary to reduce the inflammation. In the beginning they had me at 60 mg prednisone and that probably saved my eye sight as they thought I had temporal artertimis (sp?) which is inflammation of the blood vessels in the head. I couldn't see for a week and had monster headaches from the high level of prednisone. I also had headaches that were incredibly strange where it felt like the top part of my head was sliced off and was ice cold and the bottom part was normal. It was incredibly weird. You should have seen the doctor's face when I described that. He got me to ER right away for a CT scan.

Fortunately, that calmed down as I was treated for RA. But I still get the ulcers and now the nerve damage. I don't understand though. The nerve conduction tests and EMG were normal but the neurologist wrote me off as having no hope for getting any better and no options for treatment. I am hoping he is just a lazy doctor and that someone will tell me different.

As long as your nerves are still in the injury stage, it seems like there is hope for them healing. But once they are dead, then no. That's why early treatment is so very critical. If they treat the underlying causes like RA, Vasculitis, Sjogren's and Diabetes and also add the physical therapy, there is a lot more hope. A good pain specialist and a better neurologist than the one I have is essential.

Vasculitis is a rare disorder and even most Rheumys are not familiar with it. It can vary from a mild problem to a life threatening condition. Learning about it is your best defense and if you are diagnosed with it, then you need to inform them at the ER and with each new doctor.

I'm sorry that you have to deal with this too. I was really happy to see what you wrote about neuropathy under that thread as that is new for me and causing me terrible problems.

Hi Deanna,

It has made me feel better to find some other people have gone through the same thing, although I'm sorry you are sick too! I have learned a fair amount about the nerve problems through the doctors I have been to but don't know much about RA and it seems like it will take a huge effort to figure it all out and what I should do. But I know I have to since I am losing the feeling in my fingers and that will be somewhat debilitating if it continues.

I also don't seem to sweat anymore, I just get hot and very red. I am a little worried about that with summer coming. Vasculitis is crazy isn't it? Sometimes my hearing changes so everything sounds like I am underwater.

Do you have twitching muscles? I am having a lot of trouble with that too but I have never gotten a straight answer on it from my doctors.

Laker

The sweating could be part of the neuropathy. It is a different kind that affects your autonomic systems and can be quite troublesome but it also can affect your heart, kidneys, etc. I don't know how they treat it.

I do have spasms and tremors. They haven't said what causes it. The neurologist seems to imply it's part of the neuropathy or it could possibly be MS. He just says he would treat it the same way which is with Neurontin or Bacoflen.

The other problem is that RA can cause inflammation in your spine as well, causing it's own problems. The part that is caused by vasculitis or RA is helped by treating the RA. You may also want to be checked for diabetes. If you have that, treating it can help too.

Deanna,

I didn't know about the autonomic neuropathy. I guess if that is what it is that may add a whole new level of concerns. I am definitely going to ask about it at my next appt with the neurologist. My kidneys were checked and I had a glucose test for diabetes and those were okay, but it seems like every time I go to the dr. something new is wrong. I am eager to get this under control because it just keeps damaging more in the meantime, I was on 20 mg of prednisone for several months but still had symptoms spread and worsen so I am wondering if that was enough? Especially with what I have read on this board. Now I am on 100mg of immuran and 5 mg of prednisone and 75 mg of pamelor. In the past few days I have felt better overall so perhaps the immuran is starting to help. I've been on it 8-9 weeks now.

If I find out any more about the twitching at my appt. I will post it. Has your neuro tried you on anything like nortriptyline (Pamelor)? I think there are several drugs like it that you could try to relieve the nerve pain. I tried Lyrica and neurontin and those didn't work but Pamelor helps. I take it before bed because it causes drowsiness. My second neuro (the one I stuck with) noticed I had quit taking neurontin and asked why. I said because it doesn't work and he just smiled and said -no that won't work for you but Pamelor will. I do not have complete relief but it helps.

I was reading your post on the other thread and noticed your emg and ncv are normal. You can have small fiber (sensory) neuropathy and have a normal emg and ncv. Besides that, if you are within normal ranges but your left leg or arm is much different than you right that indicates neuropathy from an autoimmune problem even though you are in normal range.

Thanks for the info. I thought I must be nuts when I kept noticing my "sweating abnormality"!

Take care,

Laker

 

Thanks all of you for the info! I do not feel so alone now that I have met others with the same ailments. It was getting pretty lonely for a while there. My symptoms are so weird and no one has heard of vasculitis so when people ask I just say "I'm fine." My husband gets mad at me for that but what is the point in going on about it to people who don't understand anyway?

It is so good to meet you all.

Laker

Laker, I've been on nortripline for years because I also have restless leg syndrome. They have me on Clonanazepam as well and are upping that one too for the same thing. I couldn't handle Lyrica, Neurontin or Gabitril. Gabatril might be one you could ask about. It helps the GABA in your nerve endings. Right now, they are using Cymbalta which is giving me a lot of relief from the nerve pain. It also helps with FM pain and depression. However, I'm having trouble at 30 mg and hoping they can get me a dosage of 20 mg. Others need dosages of 60 mg. My pain specialist said that everyone reacts differently to these nerve medicines and that they just have to keep trying them until you get something that works. My neurologist only tried the Bacoflen which helped a lot with the tremors. He was not willing to try anything else. All of the doctors are looking for the Rheumy to step in and address this problem. I start with a new Rheumy on Wed. I am hoping and praying he will really do something to help me as the last one was just plain crazy.

The guy that did my test seemed only trained on the test itself. He wasn't able to answer any of my questions and said that I had enough other things going on to cause that kind of pain any way.

I don't know that things will get worse for you. I think that there is just an art in getting it under control. That's the hard part. The other thing that the pain specialist is having me do is add MetaRX, a prescription B-12 vitamin which I have yet to be able to afford as it isn't covered by my insurance. It's without insurance. She also had me add the fish oil for my RA and OA pain.

Physical therapy has been the best thing for the neuro pain though. When I started, I couldn't walk across the water therapy pool. I had spasms really bad and each time the spasms would tighten my muscles to where I could barely move or walk. After several weeks of PT, I also had arthoscopic surgery on both knees from the OA/RA. More PT and I am starting to actually walk again. It was the neurologist that got me started on the PT. The PT also helps the FM. The surgeon also believes the surgery would help all of the problems and I think he was right. So see if they will try PT to help you manage these problems.

No, you are not alone. But is rare and I've only found a couple of people with the vasculitis. The thing is to stay sharp on all the information. Thanks for the explanation on the nerve studies.

Deanna,

I'm sorry this has been such a struggle for you. It seems like nothing works for some people. My father in law has been in terrible straits for years with rheumatoid arthritis with little relief. I suspect my case of both vasculitis and RA are mild even though most of my joints are involved and I have alot of symptoms. Things went steadily downhill for 18 months and I was very discouraged because of the continuing and spreading nerve damage but I have felt better overall in the last week so perhaps the immuran is going to work for me. I was interested to hear about the pt.  I think I will feel good enough soon to try a water exercise class. I need to decide if it should be the arthritis one in the therapy pool or the regular one.

Wishing you well,

Laker

Decide on the basis of how much strength that you have. If movement is hard for you at all, then start with the water therapy. But if you can get around and just want to improve that, then the arthritis one is probably going to be cheaper and a lot more fun. I had severe migraines at least once a week which stopped totally after starting treatment for RA.  I also have splinter hemorrhages in my fingernails.  Could this be vasculitis?That is a typical sign of one form of vasculitis. I don't have that, but you definitely need to have it checked.

Also, how old are you? The temporal artertmis (sp?) is normally associated in much older patients. But the treatment is high doses of prednisone in order to prevent blindness. During that time, I did have severe migraines which are very uncommon for me and I don't know if it was from the inflammation or the high dosages of pred.

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