should I go for the strong meds? | Arthritis Information

 

I don't know if many of you have vasculitis or nerve damage but I'm pretty sure most of you have had to decide whether to treat agressively or "work up" on meds so I need some advice.

I have RA and vasculitis and started immuran about 2+ months ago. I've seen good improvement in my energy level and the skin issues have calmed down. Most importantly my cognitive problems have disappeared. But my joints and nerves keep getting worse. I am noticing increasing sensory numbness in my fingers even day to day and I'm worried about it. Some things are already getting hard to do.

 I go to the neuro on Monday. I know my next step after immuran is cellcept or more likely cytoxan. Toxic stuff. Do I switch before the nerve damage is worse or wait longer on the immuran? The nerve damage is permanent once it is done, but overall I am not feeling nearly as sick now. Any advice?

Laker

That's a really tough question, Laker. You do have to treat the vasculitis aggressively. But you are talking about medicines that most of us probably haven't been on. I honestly think this is a question to ask both doctors, the Rheumy and the Neurologist. Probably what will happen is that the Neurologist will do the exam. It should be more than just talking to you. They need to look at how you walk, how your eyes move, test where you have feeling, etc. Be sure to mention the cognitive problems. That's very important.

Ask about Nerve Conduction Tests and EMG (muscle test). Then, they will probably prescribe something for the nerve pain in addition to what you are already taking. These might be: Neurotin, Lyrica, Gabitril, Bacoflen or Cymbalta. And the first one may or may not work for you. I had to go through several myself. Others do well on the first thing they try. Also, ask about B-12 as it's supposed to help heal nerves. And my neurologist sent me to physical therapy which has helped immensely. Moving your limbs helps keep those nerves functioning.

If you are having a lot of pain, do get a good Pain Specialist but not one that is only going to dope you up. You want to find one that believes in alternative treatments including injections, PT, supplements, massage therapy, etc.

You're right that once the damage is done, it's irreparable. But nerves can heal before that but they do so slowly. First you want to get the nerves and the pain calmed down, second you need to know what is the true source of the neuropathic problems and treat that (for instance, treating the RA and the vasculitis is the best treatment for the neuropathy), and then third you want to get those nerves healing.

Good luck with your appointment and be ready with a good history and questions. Don't let them brush you through too quickly. I've had neurologist do that and it isn't fair because they are getting a lot of money to see you. This is serious and they need to respect that. Let us know how the appointment goes.

Thanks Deanna. It is so hard to know what to do. I am very relieved to have my brain functioning normally again, but the nerve stuff seems to be even worse. The drs. know about the cognitive problems, I was having trouble even at some of my appts. I think that's why they put me on immuran instead of starting with methotrexate.

My GI system also just seems sooooooo sloooooooow! And my hands and face turn bright red (seriously) when I eat. Now I have bad pain in my rib cage if I have been in outside where its cold for a while and come in where its warm and vice versa. I know I have inflammation there but it has never reacted to temperature before. It sounds nuts I know. And then there are my hands. They turn color all the time-purple, red, white, oh and on one I have a big orangeish pink spot. And I can't feel my fingertips. Thursday I dropped and broke a bottle of vingear in the grocery store. Friday I dropped and broke a mug. I can't pick up pills or separate pieces of paper.

Sorry to go on so, so much has changed recently I am a bit (well, a lot) nervous. You gave me some really good advice. I see an intern who does check me out but it is a different one almost every time and this time I am scheduled with one I had before and she was not thorough at all. Then the intern leaves and talks to the neuro (he is the director of the clinic) and he comes in to talk to me. I do like him very much he always spends a lot of time and puts things in a very straightforward way and then asks my opinion on the treatment. The rheum and neuro are at the same university hospital so they are supposed to be working together but I don't know that they are yet- another good thing to discuss.

I guess I need to make sure the intern checks everything and I am going to ask the doctor about the b-12 and something else for the nerve pain, and about physical therapy. Besides making sure he know there has been a lot of change recently and that I'm worried about it. Thanks again for the good advice. Sorry for the very very long post- I'm feeling a bit freaked out, tommorrow will be better right?!

Laker

You have every reason to be freaked out. You are having very serious symptoms and you have got to make sure that they are paying attention to them. You are going to have to be pushy. Don't leave that office Monday without some answers to your questions, all the problems addressed and if they are out of the Neuro's expertise then insist he help you get to the right specialist. Remember that a lot of doctors, including Rheumys, may never see a case of vasculitis. It is a rare disorder. But the problems you are having to lead to serious problems like gangrene or permanent nerve damage. You obviously know this. So do let me push you into getting these answers so that you don't end up in the hospital. You'd better post about your appointment on Monday. I'm going to be looking for what you find out. I'll worry with you and say a little prayer. 

Thank you Deanna-you are just what I need right now. Someone who understands and will push me a bit. I think deep down I do not really want to know what is happening to me. I talked with my husband about this too and he is very concerned and said he will push for them to give us some answers and a way to stop this thing. Making a list of symptoms and questions on Sunday so I am prepared. I am thinking that I am not very good at following my own advice sometimes. Glad you and this board are here to encourage. I'll post after my appt.

Laker

dear Laker, I was blaming everything on something else until I got my RA meds to work.  I had bad shoulders, hands ,arms and thought the doctors had 'done something' to my bracial nerves. I went to a pain specialist and he xrayed my neck and gave me tons of gabapentin for the pain. By then my RA doc was able to start in on the methotrexate, remicade and gave me prednisone (he couldn't before because of a healing heart valve!) So once all that started to work the pain left, I still ahve stiffness in my hands and feet, but NO PAIN. This was the beginning of March. good luck, sarah
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