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Medical Forum / Diseases and Disorders / Arthritis / January 2006would like your opinion
I have been on enbrel now for since the first of August, almost 5 months. The first 2 shots I could tell that I wasn't quite as tired, but then it changed. I seem to feel much worse now then I ever have. I Have constant muscle aches in my legs, hips and elbows, knees. At first I thought the RA was getting worse and it would just take awhile. I saw my Ra doc last week, he said you look like a person that doesn't have any signs of RA. Gee I have never had any signs, never any red or swollen joints, hips always are a l ittle tight but that is about it. When I wake up in the morning I am stiff, I feel terrible can barely get myself out of bed from the exhaustion, my knees in the back ache all day long, so does the inside of the elbows, I never had this before. I asked him if the enbrel could be causing this, I called the enbrel site and they said that some people experience muscle aches and to talk to the doctor. He told me to have and MRI of my pelvic and si joints, I had that but he also wanted one with contrast where they put an injection in your vein, I have never had trouble before but when the nurse tried to put something in the view and started the solution it blew the vein and after 3 attempts I said no more, it was really hurting. So hear I am 5 months into the enbrel, I guess I might have a little more energy, not much, my legs are constantly aching, my hips feel like they are on fire my wrist and elbows hurt and he said that I should try the enbrel for 3 more months. Has anyone out there had any reaction like this to the enbrel? I also take plaquniel 4oo mg and methortexate 17.5 mg weekly. I was taking naproxen 4 pills a day but he has now switched it to difulane or something like that 3 pills a day, I have it at the drug store to pick up. I hate going to bed mornings are terrible, the way you feel is like you are constantly drugged and it is so hard to get up. I am kinda at my wits end, I don't want to go to a different doctor he has been my 3rd and I want to stay with him he is a nice guy I just know that I am not the normal patient, things effect me different. My blood work is always good, no high sed rate, no anything except a high anti-CCp and a rheumatoid factor and i think a positive ana titer or something like that. Thanks for listening I was really hoping that after 5 months on enbrel and the higher dose I would be feeling better not worse. Thanks and Happy new year to you all Becky > Thanks for listening I was really hoping that after 5 months on enbrel and > the higher dose I would be feeling better not worse. > Thanks and Happy new year to you all > Becky I think you are correct and your RD is not really listening to you. Of coarse,,, it is good that he/she is not seeing any change in your joints. Just my opinion but I think you need a different DMARD or DMARDs. Harv Thanks Harv, I have to wait until next week there office is closed till Jan 6th and will call again, but something is not right. Becky >> Thanks for listening I was really hoping that after 5 months on enbrel >> and the higher dose I would be feeling better not worse. [quoted text clipped - 5 lines] > Just my opinion but I think you need a different DMARD or DMARDs. > Harv Becky, I think your gut instict is right. If you were on plaq. and mtx and doing well why did he put you on enbrel? You have the right not to take it if it is making you sick. Just tell him you would like to try going w/o it for a couple of months to see if your pain gets better. Good luck. debbie m. I understand right where you are Becky. Have you been evaluated for fibro? Not that there is much that they can do about it, but about a year after my arthritis started (but still a year and a half away from a correct diagnosis) I started having muscle pains mainly in my neck, calves and forearms/elbows. My forearms sometimes get so hard and swollen that I call them Popeye arms. When I got the fibro dx I was floored, then even more bummed out when they said that there wasn't much they could do about it. How are you sleeping? My sleep was not at all restful, and I would wake up exhausted all of the time. The one thing that my Rd did do was prescribe Soma before bed time. It is a muscle relaxer and it really helps my muscles and it helps me to get to sleep. I feel for you, because I am on some of the same meds (Enbrel, mtx, prednisone, sulfasalazine) and still am not feeling good at all. It sucks because you don't know if by switching to something else, if the situation will get even worse. Maybe this is as good as it gets? It's hard to tell if something is working, because you have been on it, and therefore don't know where your body would be without it. I do think that the SI joint MRI with contrast would be a good idea, because after 2.5 years that is how they FINALLY found my condition: Ankylosing Spondylitis. I do wish you luck and please us know how you make out, Char Thanks Char, Yes they told me at first what I had was fm, I think not exercising has made it worse, but he pain in my hips joints and now the muscle aches makes it very hard to exercise. I am going to call the office again and ask about he part of the mri that they couldn't do the contrast part and see if they should try again, my arm is still so black and blue I look like a smurf. I think part of my problem is the ads I kept seeing on TV I really thought that the enbrel would be like a life saver, heck maybe it is maybe I would even be a lot worse without it I don't know. I know that my sinuses seem to be acting up a lot more and there is a lot more pain in my knees and elbows then before. I will call his office again early next week. Thanks for the response. Becky >I understand right where you are Becky. Have you been evaluated for > fibro? Not that there is much that they can do about it, but about a [quoted text clipped - 19 lines] > I do wish you luck and please us know how you make out, > Char Debbie, He felt that the pain I was still complaining about in my writs and the fact that I tried to up the MTX but I couldn't get any higher dose without extreme fatigue he would try the enbrel. Like I said the first month was great, down hill since. I have read on the enbrel site that muscle pain is one of the side effects some have had from it. Will talk to his office in a week. Thanks for the response. Becky > Becky, > [quoted text clipped - 6 lines] > > debbie m. > Debbie, > He felt that the pain I was still complaining about in my writs and the fact [quoted text clipped - 5 lines] > Thanks for the response. > Becky You know, I didn't have that with Enbrel, but it sounds like Humira's effect on me (except for the improvement, never had that with H). As Harv said, your RD isn't listening. Who cares if he's nice if he isn't helping you? I'll take a mean doc that hears me over a nice one who doesn't. It's a good idea to write down the things that are going on (like keeping a journal each day). Write how your joints feel, which joints hurt worse, how long it takes to "loosen up" each day. Then take that in to him, explaining that this wasn't a problem before Enbrel, but seems to be one now. I could have sworn I'd read literature somewhere about Enbrel would reach maximum efficacy at 6 months, but that could have been Humira (meaning, you may not notice improvement until 6 months of use). As "cranky" as I get, I would not put up with an RD that treats me as yours does (but then I'm kind of a wench like that). My RD would immediately have stopped the Enbrel had I begun to have muscle pain like you describe. Took me 6 1/2 years to find this one, but I'm happy I held out for a good doctor. Do we argue? You bet, and he generally wins. Is he super nice? Nah, but he cares, and he cares enough to fight with me over things that are important. Smokie Darling (Annie) - keeping you in my thoughts and prayers that things improve dramatically, and soon. > > Becky, > > [quoted text clipped - 6 lines] > > > > debbie m. |
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