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Medical Forum / Diseases and Disorders / Arthritis / April 2006ms and enbrel
Does anyone know of often someone taking enbrel has developed ms? I am having some symptoms and was just wondering, have an appt in 2 weeks witht he ra doc, sorry if this looks like the same post again, I have posted 3 or 4 questions but they never seem to show in the group, I have searched and tried everything. My latest x-rays show that the feet are still progressing poorly and getting more erosions, so may have to rethink enbrel and try something else, plus don't like all the muscle pain I keep getting in upper back, legs and hips. Thanks Becky Becky - have you communicated with Kelly yet? She is having MS symptoms. I have MS and RA and there is some question as to exactly what is going on with me right now. However, I had MS for years before I started taking Enbrel. Kelly knows of several other people who have had MS type reactions to Enbrel as well. It seems to me that the people who get the reaction don't actually get the lesions to show up on the MRI or a definitive dx of MS. At least the ones I've talked to. In the first year there were something like 13 out of 88,000 which is far less than the natural occurance of 1 in 1000 for MS and was considered statistically insignificant. Amgen doesn't seem to say much about it like Immunex did. However, there seems to be some neurological reaction that does take place in some people. What kind of symptoms are you having and for how long? DianeW HI Diane, Mostly leg pain and muscle pain, and sometimes like neck spasm. I have a little dumbness in the left leg sometimes but mostly muscle aches everywhere, I didn't get them to often before. My brother has MS quite severe. I did have an MRI before had and it said that it was basically normal, they saw a little white spot but sent me to a specialist and said it was nothing. I have a lot of pain in the hip area, knee area and int he calf muscles and muscles in upper back and neck, didn't have much of this before enbrel,. My feet x-rays the other day showed more progression so I guess the enbrel isn't working either. I have a docs appt. ont he 20th of April. thanks Becky > Becky - have you communicated with Kelly yet? She is having MS > symptoms. I have MS and RA and there is some question as to exactly [quoted text clipped - 9 lines] > neurological reaction that does take place in some people. What kind > of symptoms are you having and for how long? DianeW While the old advice that "MS isn't painful" is now recognized to be false, it's not the kind of pain that your are describing. (Just my opinion) The pain with MS comes from a tightening of the muscles called spasicity. Your muscles become tight. It is different that spasms. Or they burn with neurological pain. Or you get a gripping tightness around your chest called the "MS Hug" or strange shooting pains or numbness and tingling. What your are describing sounds more like Fibromyalgia which a lot of folks have in combination with RA. Has your dr ever talked to you about that? I don't know if muscle aches and pains come as a side effect with Enbrel. Have you called Amgen and talked to them about it? How long have you been on Enbrel? I get that kind of pain when I take Zocor or Lipitor. Goes away when I quit taking it. DianeW HI Diane, I have been on enbrel for 8 months, I was told that I had fm a long time ago but never really believed it since I really didn't have any symptoms except once in a while. I was always exercising 5-6 days a week, which I know helps the fm. Since starting the mtx I was doing okay, but since I have started enbrel and the mtx, it may not be related but I have felt worse, at first with he enbrel it gave me energy. But now I have the shooting pains in the feet, wrists, hips and the fatigue all over plus the muscle pain in hips and the tingling and some numbness that only lasts a little while and if I massage the area it seems to go away. I know that Ms has pain my brother who has it really bad is in constant back pain from tight muscles. I did call the hot line for enbrel and they said that some have reported muscle aches and bursitis while on it. I will see in 2 weeks what the doctor has to say, Thanks for the response Becky > While the old advice that "MS isn't painful" is now recognized to be > false, it's not the kind of pain that your are describing. (Just my [quoted text clipped - 10 lines] > have you been on Enbrel? I get that kind of pain when I take Zocor or > Lipitor. Goes away when I quit taking it. DianeW > What your are describing sounds more like Fibromyalgia which a lot of > folks have in combination with RA. Becky, I also thought of fibromyalgia when I read your muscle symptoms. Another possibility is polymyalgia - I know my mom had incredible pain in her leg muscles along with weakness when her PMR was really active. Whether the muscle pain is disease related or medication related is a trickier question. I know my fibro always flares when my arthritis is flaring and if I have to go off my DMARDs, the fibro will flare. When I was off Enbrel for my liver biopsy, I was having to pop more pain meds and muscle relaxers to get through even a lazy day. Since your foot erosions indicate that your arthritis is not controlled, it's possible that getting the arthritis under better control will help the muscle pain. Sounds like you'll be having major discussions with your RD this month! oh, and some folks do seem to have more muscle/tendon involvement with their arthritis and PA tends to have more of that than RA does, if that helps any.  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare thanks Nann, You have given me a few more things to talk to the doctor about. I seem to be having quite a bit of burning and numbness feeling in my left leg today, not sure from what. Took the MTX last night and have taken it for almost a year and it did a number on my last night, every joint hurt so bad and I was so stiff in the neck muscles and got a sick stomach, never had that before at all, go figure, just when I start to think I have it figured out something else! The only thing I know for sure the doc will say is you haven't lost any weight!! he wants me to lose 20 more pounds, my question is HOW when you are so sore and in pain that all you want to do is sleep or lay!! Sorry for the vent!! thanks again, Becky >> What your are describing sounds more like Fibromyalgia which a lot of >> folks have in combination with RA. [quoted text clipped - 21 lines] > arthritis and PA tends to have more of that than RA does, if that helps > any. Oh, do I ever hear ya on losing weight when you don't feel like moving! I did my exercises with my dumbbells last night for the first time since I was down for my liver biopsy. Man, did I ever pay for it overnight! Fortunately, I still had some tylenol 3 left over from my thumb surgery. I don't know if I ever would have gotten to sleep without it. It would be good for me to lose 20 lbs also. I've noticed in the past that the more active my arthritis is, the worse I feel in the first 24 hours after taking it. That is usually the most painful part of the week for me and the fatigue I feel from the mtx is much more pronounced when the PA is kicking up. I always viewed it as a greater battle between my immune system and the mtx when that happened. I don't know if that's what was going on with you, but it's a possibility. Oh, and about enbrel and its effectiveness. It hass helped me a lot as a med, but it has not been the magic bullet it has been for some. Definitely has helped enough to be worth it - esp. fatigue-wise and with good insurance coverage, but not my miracle. So you aren't alone there. Heck, mtx alone clears many folks with psoriasis, but didn't do so for me, despite my Ps being mild. I fear some of us have more creative immune systems! LOL SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare > thanks Nann, > You have given me a few more things to talk to the doctor about. I seem to [quoted text clipped - 9 lines] > thanks again, > Becky Nann, Thanks for the email. I forced myself out of bed today and went tot he gym and did the elliptical trainer for 25 minutes and then sat in the hot sauna for 20 minutes, I finally sweated but not sure it was the best thing, I am so sore now the joints seem to get a lot stiffer in the sauna, I thought that would be good for me, not sure. Saw my foot doc today also, he has given me new orthodics, not sure if they will work, he totally disagreed with eh ones that I was wearing, very frustrating when each doctor gives you some different story and solution. I just finished reading a book by Dr. Weil, I am almost ready to try the natural approach since being on all this meds has made me feel worse, but them my husband keeps saying maybe without all those meds you would be even worse than you are now> Something to think about. Well thank you for you response and take it easy on the exercise. Thanks Becky > Oh, do I ever hear ya on losing weight when you don't feel like moving! I > did my exercises with my dumbbells last night for the first time since I [quoted text clipped - 43 lines] >> thanks again, >> Becky One thing comes to mind Becky - If you had MS and spent 20 minutes in a hot sauna, they would have had to carry you out. When you have MS usually you cannot tolorate heat and hot tubs, saunas, steam rooms etc are strongy ill advised because the heat causes the nerves that are damaged to act up and your symptoms become worse. And with the orthotics.....don't wear them all at once all day as you really do need to break them in. You will have more pain in your leg muscles as you start to wear new orthotics. Been there. Done it wrong. DiW Diane, Thanks that is what my brother told me also, he can't be in any amount of heat, he has MS really bad. As for the orthoidcs, I have worn them for 5 years this was just a new pair which they still can't get right, they called me this morning to let me know that my dress pair was in so I could wear my high heels, I just about yelled, I don't wear high heels, never have and this is not a second pair it is supposed to be a pair to wear in tennis shoes so I can walk!! They will never get it and now my benefit is all used up till next Jan. It is always something!!!! thanks for the reply Becky > One thing comes to mind Becky - If you had MS and spent 20 minutes in a > hot sauna, they would have had to carry you out. When you have MS [quoted text clipped - 4 lines] > to break them in. You will have more pain in your leg muscles as you > start to wear new orthotics. Been there. Done it wrong. DiW >Nann, >Thanks for the email. I forced myself out of bed today and went tot he gym >and did the elliptical trainer for 25 minutes and then sat in the hot sauna >for 20 minutes, I finally sweated but not sure it was the best thing, I am >so sore now the joints seem to get a lot stiffer in the sauna, I thought >that would be good for me, not sure. Ice is what helps me. When my hands start to act up I ice the crap out of them. Thumper >Saw my foot doc today also, he has given me new orthodics, not sure if they >will work, he totally disagreed with eh ones that I was wearing, very [quoted text clipped - 53 lines] >>> thanks again, >>> Becky >Oh, do I ever hear ya on losing weight when you don't feel like moving! I >did my exercises with my dumbbells last night for the first time since I was [quoted text clipped - 16 lines] >clears many folks with psoriasis, but didn't do so for me, despite my Ps >being mild. I fear some of us have more creative immune systems! LOL I know an 80 year old women who has had RA since she was 12 and had it under control with just viox (or at least Viox was her Main med) until they took it away. Others of us have progressed rather rapidly. Each time a med fails for me it seems that the RA has been progressing in the background. Perhaps I have such periods of feeling well that it just seems worse when it hits. Also every time a med fails I panic thinking that I'll never find another one that works. One thing none of them has helped much however is the fatigue.Since having RA I get such bouts of fatigue I literally can't keep my eyes open at times. It's almost like narcolepsy. Thumper Ya know what? Now that you mention it my RA took a major turn for the worse when they took my Vioxx away! I knew I was in more pain but until you mentioned it, I didn't realize how the RA activity had gotten so much worse as well.I take Celebrex which helps with the pain but the actual red, swollen, puffy joints is way more than I ever had before. Very interesting.......DiW For me it was the bextra, that was like night and day for me, sure wish it would come back on, I just take naproxen over the counter now, 2 of them. Hopefully something new will come along soon for all of us. Becky > Ya know what? Now that you mention it my RA took a major turn for the > worse when they took my Vioxx away! I knew I was in more pain but > until you mentioned it, I didn't realize how the RA activity had gotten > so much worse as well.I take Celebrex which helps with the pain but the > actual red, swollen, puffy joints is way more than I ever had before. > Very interesting.......DiW I know what you mean, Becky. Bextra was good for me too - it and Feldene are the only 24-hour meds that actually lasted me 24 hours. Ah, well. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare > For me it was the bextra, that was like night and day for me, sure wish it > would come back on, I just take naproxen over the counter now, 2 of them. [quoted text clipped - 6 lines] >> actual red, swollen, puffy joints is way more than I ever had before. >> Very interesting.......DiW |
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