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Medical Forum / Diseases and Disorders / Arthritis / October 2005Urgent: Information needed about enbrel side effect
Has anyone that has been on enbrel had a MS like reaction to it? Kelly E who has posted here has been in hospital for the past week with paralysis on the right side. The paralysis started from the foot to the knee area, and then continued to the midsection area. She has had complete loss of function on that side. MRI and other tests are all clear showing no organic cause for the paralysis and suggesting that it is the enbrel that has caused these symptoms. Kelly needs to find out if anyone has had experience with this- and if so how was it treated. She needs to know what this meant for longterm treatment of the RA. At the present time she is not on treatment for RA which in time will cause a huge flare and she will be doubly hooped- so to speak. Please post here with your experiences. Kelly is not able to get on the computer today, but she is hoping to do so tomorrow. I am hoping that we can have some information to take to her Rd where someone has had these symptoms and the treatment protocol that was used to get them out of it. I'm sure she could use your prayers as well. Kelly is very determined to kick this paralysis in the butt and regain complete function. With our thoughts and prayers we can help ensure that this is a reality. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Rose, the only information I could find about paralysis associated with Enbrel use was on a couple of legal websites.:( It seems to have something to do with the same type of injury to the nerve sheath that causes MS. I wish I had more info., but wanted to be sure and send my encouragement for Kelly and sympathy. Please pass on a huge hug as well. I will certainly be interested to see how she fares through this. I do, of course, have something of a vested interest, since I have also used Enbrel for several years now. I will be sure to be aware of any new symptoms of this type. Thanks for letting us know, Rose. Hugs to you, too. Kelly C. > Has anyone that has been on enbrel had a MS like reaction to > it? Kelly E who has posted here has been in hospital for the past [quoted text clipped - 25 lines] > > Please remove "Ima" to reply. >Thanks for letting us know, Rose. Hugs to you, too. > >Kelly C. Thanks Kelly. I have been researching and have basically found the same info as you have. The only information that I have found suggests that, in rare cases, a set of symptoms has occured similar to MS, and that these have disappeared once the etancercept was withdrawn. I am hopeful that that will be the case for Kelly E. I will keep looking though and something may turn up that talks about treatment. Kelly thought that there may have been something mentioned here about treatment with high dose solumedrol. I will look on google for that. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Rose. Since this is a known side effect of Enbrel, I would think that Amgen/Wyeth should be able to point you in the right direction to get info on previous caes of the MS like condition. If they know of previous cases, they must have been treated by physicians with whom they have contact. Peter >Rose. If they know of >previous cases, they must have been treated by physicians with whom >they have contact. > >Peter Hi Peter: I believe that Kelly contacted them, but did not really find out anything. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Kelly, I have had the same experience but maybe not as bad, mine started out like bursitis pain, gave me cortisone now it is numbness in my left side from my thigh to the bottom of my feet, both hands and fingers are numb and tingling, I went back to my doc he didn't think it was related to enbrel told me to get a nerve contact study, had be repeat my MRI and was told basically it is normal again, not sure what basically means. I called the company that makes enbrel and they told me to contact my doctor ASAP I said I did, so here I am still with the symptoms no better or worse and my doctor is on vacation in south America, I wish you well Becky > Rose, the only information I could find about paralysis associated with > Enbrel use was on a couple of legal websites.:( [quoted text clipped - 43 lines] >> >> Please remove "Ima" to reply. Prayers for Kelly. Gwen > Has anyone that has been on enbrel had a MS like reaction to > it? Kelly E who has posted here has been in hospital for the past [quoted text clipped - 26 lines] > > Please remove "Ima" to reply. > MRI and other tests >are all clear showing no organic cause for the paralysis and >suggesting that it is the enbrel that has caused these symptoms. Just one other thought Rose, my sister had similar paralysis and they think it was due to west Nile virus. She was in the Caribbean a couple weeks before and was in area with many mozzies. She had mild cold-flu like symptoms then the paralysis set in. They did find a spot on her spine however. I have read about this as a rare side affect, I will see if I can nose anything out. The new abstracts are up on the ACR website I will see if anything shows up there. HOpe she is better soon I know how scared my sister was. -- MZ Visit my website: http://www.mzuschlag.com I have read about this as a rare side affect, I will see if I can nose >anything out. The new abstracts are up on the ACR website I will see >if anything shows up there. HOpe she is better soon I know how scared >my sister was. -- MZ Thanks Mary: Kelly would appreciate any information that she can get. She was not treated by her own rheumy throughout this. She was seen by a neuro, who basically said it is a rheumatology issue, while the rheumy said, "NO, no it is a neuro issue." In the meantime she is not getting the answers she needs. She believed that someone was treated with high dose steroids and was hoping that she could access that info and have it to take to her doc this week. I spent several hours looking, and the really good studies that address this issue are at members onlt medical websites. Even then I am not sure they deal with how to treat this. But they also describe sypmtoms that include weakness, neuropathy, visual impairment, and not the full blown paralysis that she is experiencing. Last night when I could not sleep I kept thinking that there is something else going on here, something that is being overlooked. My mind was taking me a particular way, but now by the light of day, I have forgotten it. Maybe it will come back to me. At any rate, I am hopeful that this will be just like me and the vasculitis (?) or whatever it was that I had as a result of remicade. My last bout was in March, and since I stopped the remicade it has not re-occured. That was treated with prednisone. Perhaps the high dose steroids will prove to be the way that Kelly can overcome this. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Hi - I am online again. My son has rigged up my internet in a corner of the room and I am able to get into a wheelchair for a bit to get to it. Symptoms - tingling sensation very very painful, numb, and swollen feeling - like freezing after a tooth out but more intense. I can with great concentration move my toes a bit and my foot but it is painful and the range is very little. The feeling is basically from the centre of the body front and back from right toe to right below the ribs. Demerol is keeping the pain at bay but bearly. If this isn't very clear - well that is where it is coming from. I don't have control or bowel or bladder as it is very numb in the nether regions - cathetor is taking care of one constitpation from the demerol the other. As Rose says I am now off enbrel but looking in the med books it is possible Kineret could be tried after this dies down a bit. Should have information from my rd tomorrow. By the time the results got back from the second MRI (clean) and the many many blood tests for infectious control etc (clean, clean and clean) and the ct scan (clean) and the neurologist said she felt it was rheumatology's call not hers it was Friday noon. Of course the Rd's office and my GP's office was closed and not on call. The hospital discharged me telling me to get in touch with doctor's tomorrow morning for answers. Great! Anyhow the quick response physio was in - got me settled with wheelchair and cleared space in my house, taught me transfers from walker to wheelchair to bed and said she would arrange permanent home care to drop in at the end of next week, and permanent physio at the end of next week. I didn't have enough demerol to last until tomorrow morning (discovered that this morning) and had to jump a million hoops to get that solved (kids have gone to pick that up now). Anyhow - thanks Rose for the information you dug up. I am hoping that like one of the articles the garbage will just go away with time. In the meantime thank goodness for the pain skills I have from RA and thank goodness I do my exercises every morning and can handle what I am handling. Keep the prayers going everyone - I don't mind telling you I am scared. Both short term and long. At least I should be able to go on Kineret when this is over I think. The new med some are on the trial for (KJ??) is that a tnf receptor and does it have the ms symptom warning?? Off to go back to bed. Will try to get enough energy to get up again tonight. This is taking a big toll. Kelly > I have read about this as a rare side affect, I will see if I can nose >>anything out. The new abstracts are up on the ACR website I will see [quoted text clipped - 31 lines] > > Please remove "Ima" to reply. Kelly, oh I am so sorry this is happening to you. I hope you find out what is causing it and soon and that they can reverse it. You have been in my prayers and thoughts since Rose posted this. Just didn't get a chance to say so. I can only imagine how scared you are. I wish I were there to help you and hug and hold you to help you get thru this all.  SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo > Hi - I am online again. My son has rigged up my internet in a corner of > the room and I am able to get into a wheelchair for a bit to get to it. [quoted text clipped - 73 lines] >> >> Please remove "Ima" to reply. >Hi - I am online again. My son has rigged up my internet in a corner of the >room and I am able to get into a wheelchair for a bit to get to it. I am glad you can at least communicate with us here. Don;t be afraid to unload on us your worries and concerns. I am sure we would all like to hold your hand through this. I have emailed drdoc outlining your symptoms and so on. Hopefully he will have some insight from the rheumatology perspective. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Thanks Rose, didn't think of that. I must admit I am scared. Both about the effects, how long they will last and what I will do for RA meds. Funny how that is still a major issue. Can't run this walker and do transfers etc if my RA is bad. Anyhow trying not to let my imagination run wild until I talk to the doctor's tomorrow. And my mom comes home tomorrow which will be nice. The world is always a bit better with my mom around. Thanks everyone - especially you Rose. This gave me a head start before the computer got up. Back to the demerol and bed for the night. Ken (my son) is staying with me again tonight - thank goodness for incredible kids. For 22 he is an incredible together kid and has helped me all weekend solving problems. Kelly >>Hi - I am online again. My son has rigged up my internet in a corner of >>the [quoted text clipped - 12 lines] > > Please remove "Ima" to reply. ((((KELLY and FAMILY)))))))))))))) I will keep trying to find out what I can. Now that I am going back to school in the morning (after being on strike for more than two weeks) maybe I won't feel as stressed and be able to accomplish a bit more. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Kelly, I am glad your son was there to help out and glad your mom will be there too. I hope you find out what is going on today and get a quick fix. I am really concerned for you. Wishing you the best outcome. I am glad Rose has been there to help with info and such for you too. She is a really special person as are you to Kelly. SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo > Thanks Rose, > didn't think of that. I must admit I am scared. Both about the effects, [quoted text clipped - 11 lines] > > Kelly Kids are such great people when they grow up. We all got a virus one year from my grandson, Josh, and my middle son, Ed, ended up having to take the oldest son, George's spare car keys (he locked his in his car!) over to the hospital where he had taken the youngest son, Jon, and his wife for dehydration (it was their son, Josh, that brought the bug down) and then come back here to babysit the little one and me (who had gotten sick also)! They are such a big help. Of course, by then, Josh was full of vim and vigor! I told Jon the next time he comes to visit and one of his kids gets sick in the car, for him to turn right around and go back home!!! LOL Hope you are better, soon, and stay better. Loujean >Thanks Rose, >didn't think of that. I must admit I am scared. Both about the effects, [quoted text clipped - 28 lines] >> >> Please remove "Ima" to reply. Loujean God didn't promise us that life would be fair. If it were, who would try for the stars? I have already forwarded drdoc's response to my email to Kelly, but in the chance that it may help someone else, I will also post it here. Since so many of us are on enbrel. it is worth being as informed as we can be: Drdoc wrote: I would definitely be concerned about the enbrel and would definitely have suspended it if she were my own patient pending clarification. The demyelination side effect is rare and early change might be possible. It sounds like a spinal cord lesion. Most likely a demyelinating condition of the spinal cord. Chances are its from the enbrel. She should see a neurologist. A lumbar puncture sounds like it Is needed and a thoracic spine MRI. If there is no evidence of infection and a spinal cord demyelinating disease is suspected a medrol infusion at high dose is probably the way to go. But time is urgent Regards drdoc Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. >I have already forwarded drdoc's response to my email to Kelly, but in >the chance that it may help someone else, I will also post it here. When I saw my RD two weeks ago I asked him about the biologics and he said he wouldn't give them to me because I already have MS and they might exacerbate it. --- Joan Joan - I've been on Enbrel with MS since it came out. The only time my MS flares is when I am OFF the Enbrel. Amgen has been following my MRI results very carefully. In fact, they call me each December for followup. Enbrel helps my energy level as well. This year I've been off Enbrel more than I've been on it due to problems with infections and my MS symptoms are worse than ever. Knock on wood - no flare but lots of spascity. DianeW Oh, Kelly prayers coming. Keep improving. Loujean >Hi - I am online again. My son has rigged up my internet in a corner of the >room and I am able to get into a wheelchair for a bit to get to it. [quoted text clipped - 73 lines] >> >> Please remove "Ima" to reply. Loujean God didn't promise us that life would be fair. If it were, who would try for the stars? mri of what? Brain or spinal cord? Did they MRI your thoracic spinal cord This MUST be attended to urgently and you should not be made to wait for the neurological opinion. Regards drdoc www.arthritis.co.za > Oh, Kelly prayers coming. Keep improving. > [quoted text clipped - 99 lines] > If it were, who would try > for the stars? {{{{{{{Kelly}}}}}}} DeeTee > Oh, Kelly prayers coming. Keep improving. > [quoted text clipped - 99 lines] > If it were, who would try > for the stars? Mary, I am praying for your sister that it is not West Nile and if it is that they can treat it so she can get better. You and your sister are in my thoughts. SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo >> MRI and other tests >>are all clear showing no organic cause for the paralysis and [quoted text clipped - 13 lines] > Visit my website: > http://www.mzuschlag.com {{{{{{{{{{{{{{{{{{{{{{{{{{{{{Kelly}}}}}}}}}}}}}}}}}}}}}}}}}}} m kelly, my thoughts and prayers are with you. rose, you were so smart to email dr. doc. i hope his info is helpful to kelly's docs. please, please get better, kelly! diane Prayers are coming your way. This is so scary, (((Kelly))) Char > kelly, my thoughts and prayers are with you. rose, you were so smart to > email dr. doc. i hope his info is helpful to kelly's docs. please, > please get better, kelly! > > diane She did good didn't she...... Who remembers the good old days when we had drdoc all the time? So it goes. Harv hi harv drdoc >> kelly, my thoughts and prayers are with you. rose, you were so smart to >> email dr. doc. i hope his info is helpful to kelly's docs. please, [quoted text clipped - 5 lines] > drdoc all the time? So it goes. > Harv > hi harv > > drdoc Hi Drdoc,,,, Got a question for you.... We have not heard from ladyandy in a long, long time. Do you know if she is doing well??? Harv
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