Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 Dorothy, welcome to the group! Sorry to hear about your diagnosis and problem with your leg. Did your physicians rule out Plaquenil as the cause? How much are you and had you been taking? Any other drugs that you didn't mention? Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] RA & Neuropathy >I am a new member and wondering about experiences with RA and neuropathy > issues. I was diagnosed about a year ago with RA and had it under control > with Plaquenil. > > Right before Xmas, I ended up in the ER with severe pain and numbness in > my > right leg. This has been diagnosed as lumbar plexitis after about a > zillion > MRIs and other tests. > > I've been taking pain killers plus the Plaquenil and Celebrex for the RA. > Now I started Neurotin last night after seeing another specialist - The > Neurological Institute of New York at Columbia University. I slept > straight > through the night waking only once. I took only 1 pain killer last night > instead of 2. > > I've discussed IVIG treatments, but the doctors feel there would be no > great > benefit for me at this stage. It seems they just want me to sit and > wait - > they predict 500 days - for nerve regeneration if it occurs at all. > > Although they say that RA did not cause this neuropathy, they do say that > people with auto immune diseases such as RA are more prone to this type of > disorder. > > I'd love to hear from anyone who's experienced a similar problem and what > Neurotin may have done to help. > > Thanks, Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2006 Report Share Posted April 1, 2006 Actually, yes, I was taken off Plaquenil to see if it could have been causing the neuropathy problem. Evidently, it's a very rare side effect. I was off of it for 2 months and recently went back on. I had achieved good results with it and was glad to go back on. My dose is 200 mg twice per day. A few weeks after the Plaquenil was discontinued, I started having pain in my hands, wrists, elbows again. It was causing me a huge problem as I need the use of my arms more now with my bad leg. I can't even get on or off the toilet without using my hands and need a good grip as I use a cane now to walk. When the RA problems started again, I started taking Celebrex again. I had discontinued that several months before. I didn't want to go back on the Plaquenil until they knew if it was a problem. The Celebrex immediately helped the arthritic problems. My rheumatologist didn't think the Plaquenil was causing my neuropathy, but one of my neurologists had the theory and the rheumatologist thought it was worth discontinuing to see. I am currently taking the Plaquenil, 400 mg of Celebrex (hope to cut that out soon), Vicoprofen for pain, a low dose aspirin, the Neurotin, and Zantac to prevent stomach problems from all the other stuff!! At the time the neuropathy hit me like a ton of bricks, I was only taking the Plaquenil as I had discontinued the Celebrex about 2 months prior. I'm told that based on the normal rate of nerve regeneration and the length of my leg, it would take approx. 500 days for my nerves to regenerate. That's a damn long time! And they tell me that's only IF they do regenerate. Thanks for the welcome, , and your reply. I look forward to learning more about RA and hope to contribute a bit along the way. Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 That's a bit puzzling, Dorothy. If they told you it might take as long as 500 days for the nerves to regenerate but only took you off the Plaquenil for 60 days, how would they know if the damage were drug-induced? Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org RE: [ ] RA & Neuropathy > Actually, yes, I was taken off Plaquenil to see if it could have been > causing the neuropathy problem. Evidently, it's a very rare side effect. > I > was off of it for 2 months and recently went back on. I had achieved good > results with it and was glad to go back on. My dose is 200 mg twice per > day. > > A few weeks after the Plaquenil was discontinued, I started having pain in > my hands, wrists, elbows again. It was causing me a huge problem as I > need > the use of my arms more now with my bad leg. I can't even get on or off > the > toilet without using my hands and need a good grip as I use a cane now to > walk. > > When the RA problems started again, I started taking Celebrex again. I > had > discontinued that several months before. I didn't want to go back on the > Plaquenil until they knew if it was a problem. The Celebrex immediately > helped the arthritic problems. > > My rheumatologist didn't think the Plaquenil was causing my neuropathy, > but > one of my neurologists had the theory and the rheumatologist thought it > was > worth discontinuing to see. > > I am currently taking the Plaquenil, 400 mg of Celebrex (hope to cut that > out soon), Vicoprofen for pain, a low dose aspirin, the Neurotin, and > Zantac > to prevent stomach problems from all the other stuff!! > > At the time the neuropathy hit me like a ton of bricks, I was only taking > the Plaquenil as I had discontinued the Celebrex about 2 months prior. > > I'm told that based on the normal rate of nerve regeneration and the > length > of my leg, it would take approx. 500 days for my nerves to regenerate. > That's a damn long time! And they tell me that's only IF they do > regenerate. > > Thanks for the welcome, , and your reply. I look forward to learning > more about RA and hope to contribute a bit along the way. > > Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 , I understand your point. My understanding was that once the Plaquenil was out of my system, an improvement would be evident. Unfortunately, based on EMG tests, I was getting worse. The Plaquenil theory was a long shot to begin with. I don't think I would need to be off the RX for 500 days in order to determine if it played a part in the neuropathy. The only thing that happened once I was off the Plaquenil a few weeks was that my arthritic problems returned causing me to hit the Celebrex immediately for relief. Additionally, since I was taking Plaquenil for 9 months, I think they said the problem would have turned up earlier in the treatment if at all. Are you familiar with specific Plaquenil-related neuropathy issues? I would certainly discuss it again with all my doctors. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Dorothy, there is no indication that Plaquenil-induced neuropathy is at all common, but it does happen. I'm not saying that I think that is what happened to you. I'm just curious about the details of your case. Check this out on the " coasting " phenomenon: ********************** Changing Drugs As noted previously, neuropathy that occurs as a drug side effect may be relieved by discontinuing or adjusting doses of drugs known to cause nerve damage. Usually PN symptoms improve when the offending drug is stopped, although this may take 4-8 weeks or longer (a phenomenon known as " coasting " ). In an estimated 25% of people, PN symptoms worsen immediately after stopping a drug, before they improve. In rare cases, nerve damage may be permanent and symptoms may persist long after a drug is stopped. Always consult a physician before stopping, changing, or adjusting doses of any drug. Drugs from the same drug class (i.e., exchanging a nondideoxynucleoside NRTI for a " d-drug " ) or a different class (i.e., exchanging an NNRTI for a " d-drug " ) can often be substituted in a regimen. http://www.thebody.com/sfaf/winter02/pn.html ********************** Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org RE: [ ] RA & Neuropathy > , I understand your point. My understanding was that once the > Plaquenil > was out of my system, an improvement would be evident. Unfortunately, > based > on EMG tests, I was getting worse. The Plaquenil theory was a long shot > to > begin with. I don't think I would need to be off the RX for 500 days in > order to determine if it played a part in the neuropathy. > > The only thing that happened once I was off the Plaquenil a few weeks was > that my arthritic problems returned causing me to hit the Celebrex > immediately for relief. > > Additionally, since I was taking Plaquenil for 9 months, I think they said > the problem would have turned up earlier in the treatment if at all. > > Are you familiar with specific Plaquenil-related neuropathy issues? I > would > certainly discuss it again with all my doctors. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Interesting and I guess since I was off for 2 months, I should probably have seen an improvement........unless I fall into that unfortunate 25% group where symptoms worsen. Considering all the tests I've had and doctors I've seen, I'm pretty confused and pretty fed up with it all. I had a life one day and the next day, that life was changed so dramatically. I had just accepted a new job and was to start working right after New Years. I wasn't able to start and lost the job. I was on unemployment at the time and have now filed for disability - I'm just furious that this happened to me after I was laid off from my last job. I had paid for long term disability for 8 years in case something like this ever happened. Since I wasn't working at the time, I'm not entitled to any more than the state disability of $170 a week for 26 weeks. I filed for that a few weeks ago and I'm still waiting to hear on that. Thanks for taking an interest, . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Dorothy, Welcome to the group. I don't post much, but receive so much support when I need it from all the people here! I am glad you found us, but really sorry that you are part of us. It sure isn't fair and it seems like you are having your share of the unexpected from RA. I have a lot of Neuropathy and was started on Neurontin 2 years ago. It was the med that made me have to quit work because in the beginning I could not even function. I would sit down after breakfast and get up at lunchtime (maybe), I too was taking Lortabs for pain, too. But the Dr. told me to keep taking in and I would get better and not be in such a daze all day. And he was correct. I had nerve function testing and do have damage in both legs and hands, but nothing can be done now. I have a real bad problem with healing, and surgery is not an option. BUT I truly wish I had stock in Neurontin because it helps me so much. I take 400 mg 4 times per day. I started having burning pain again, so the Dr. put me on Cymbalta, too. I thought they were the same drug and that I would have problems, but I went to the drug interaction website and they are not a problem. I hope this helps, please feel free to ask ANY question, either direct or to the group. We are all here to help each other. Gentle Hugs & Prayers, Carol M. in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2006 Report Share Posted April 4, 2006 Carol, thanks for the positive feedback on Neurontin. I increase my dose tomorrow to 2 per day (300 mg each) and am a little concerned about the sleepiness I've heard about. I already told my physical therapist that I might nod out during therapy tomorrow!! I'm sure that won't happen, but I'll try to schedule my dose around that appointment. I move to 3 per day another 5 days after that. You said that you quit work due to Neurontin, but eventually, those problems stopped. Were you able to return to work? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 No I did not return to work, I am 58 and got my social security disability on the first try! Due to injuries and mutliple connective tissue disorders it is very difficult for me to stand or walk for longer than 1 hour. I get to stay home, play with my cats and pick up my grandson from school. I miss work, emotionally and financially but it is ok. Believe me the sleepiness will go away. When I started Neurontin I had trouble driving and staying awake, now it doesn't even affect me that way. It just takes time for each adjustment. Please take care. Gentle Hugs, Carol M. in CA(floating away) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 I just increased my Neurontin from one per day to two per day and will go to 3 per day on Tuesday. I haven't had any problem with sleepiness, dizziness, etc. I guess I'm lucky. And taking one right before bed has allowed me to sleep through the night without getting up to take a Vicoprofen. Another good thing! Quote Link to comment Share on other sites More sharing options...
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