Guest guest Posted January 28, 2007 Report Share Posted January 28, 2007 , is still experiencing problems. Don't worry about duplicates. Sorry to hear about your disturbing symptoms. A few people in the group have reported such side effects which seem to have been linked to the use of one of the anti-TNF biologics. In the literature, similar case reports have described the symptoms as " MS-like " or a demyelination syndrome. It's very important that you do not take any more Enbrel until you see the neurologist. Ask if he thinks it could be demyelination. How long have you been taking Enbrel? What part of your body did they image? Was it an MRI of your brain? If it turns out that you can't take it anymore, you should ask your rheumatologist about what to do with the leftover Enbrel. It is not legal for you to give it directly to someone else. Even if it were, there are liability issues. I know that you would hate to see such expensive medication wasted though (so would I!). I'll post a few related items separately. Not an MD [ ] Enbrel and numbness >I sent this email a couple of days ago. I never say it, so I am hoping >this > is one that got messed up by instead of a duplicate. > > I have been having numbness for at least 5 weeks. It started in my hands > and arms, but since Thursday I have it in my arms, hands, legs, feet, and > face. At first the dr thought it was caused by swelling. I found out > that > the swelling was mostly due to Nexium, go figure. The swelling was mostly > gone, and I saw my rheumy for a regular appointment. He thought I was > having a disk problem due to a car accident several years ago. So he > referred me to a neurologist. That appointment is in 2 weeks. I saw my > internist, to get rid of the swelling, and he sent me for an MRI. Well, > the > MRI was fine. Absolutely nothing wrong. I found out my MRI was okay on > Thursday, when I take my enbrel shot. I take it at night, and I usually > go > right to sleep afterwards. I have been having a hard time sleeping this > last week. I noticed within about 1/2 hour that my face started going > numb. > Within 2 hours my face was numb and my arms and legs painfully prickly. > So > now my rheumy and internist think it is the Enbrel. So I am to stop > taking > that until I see the neurologist. My arms also feel very heavy and weak. > > I also take Plaquenil, restatis, priolosec and synthroid. I have RA and > Sjogren's. I had RA symptoms for years, but I was just diagnosed last > summer. My RA got very very bad quickly so that is how I went from just > Sjogren's to RA also. I would like to have another baby so we are > avoiding > mtx. I have been feeling really good the last month or so. Everything > was > finally under control. I have been off of all prednisone for like two > months. I have even been able to exercise some. > > My rheumy thinks the numbness and all should clear. Just how long? > Anyone > else have this with enbrel? What were you able to take that worked. Oh, > I > have great insurance so I have been getting my enbrel 90 days at a time. > I > have 6 shots left. What could I do with them? Is it legal to give them > to > someone else who already takes enbrel? > > Thanks, > G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2007 Report Share Posted January 28, 2007 , This is fascinating to me. When I was taking Enbrel I was having problems with neuropathy in my hands and feet. They ran all kinds of tests including MRI for MS because my mother has it, but all showed negative. I was also taking Neurontin because of nerve damage due to back surgery, and they assumed it was related to that, so they added an anti-seizure medication (Lamictal) to help with it. I then developed some other neurological side effects that were MS like, but again all tests were negative. I stopped taking the Lamictal and the other symptoms disappeared. I have not had problems with the neuropathy in a long time, but was still taking the neurontin up until last spring. Noone ever considered the Enbrel as a possible cause, but looking back at the time line (hind sight and all that good stuff) it looks like it could have been suspect. I never had the symptoms while on Humira, although my doctor did put me on a regimen of regular neurologist reviews to watch for symptoms and get MRI's done every couple of years. I don't know what they will do now that I am the Orencia. It works differently, so I don't know how the risks will come out. That is the price we pay for being on the cutting edge of medicine, right? :-) Jeanine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2007 Report Share Posted January 28, 2007 This may not be a problem with you but i had neuropathy, numbness in feet, legs, hands.. it was found I had a B12 deficiency ( i had gastric bypass but RA meds can also deplete the B12.) The decficiency was found by a methalmelonic acid test not a B12 serum test. It is easiy treated but can cause permanent nerve and brain injury if not treated in a timely manner. Good luck to you. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2007 Report Share Posted January 28, 2007 This may not be a problem with you but i had neuropathy, numbness in feet, legs, hands.. it was found I had a B12 deficiency ( i had gastric bypass but RA meds can also deplete the B12.) The decficiency was found by a methalmelonic acid test not a B12 serum test. It is easiy treated but can cause permanent nerve and brain injury if not treated in a timely manner. Good luck to you. .. Quote Link to comment Share on other sites More sharing options...
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