Sorry this is a long one....
Hi everyone, I'm hoping someone else has experienced what I have. I started on Enbrel in February and since then I have skipped a period, had a 3 week period, and then starting again after only 1 1/2 weeks with some of the worst cramps of my life (sorry guys). I have also felt like I am regressing as my pain & stiffness have increased instead of gotten better. My husband has even noticed that it's gotten worse and since he is pretty used to me being in pain it has to be pretty bad for him to say something! Ever since I stopped taking prednisone in Oct I've gotten worse and we were hoping the Enbrel would help. Has this happened to anyone else? My story of RA is a little different as it started when I was pregnant and I have always noticed that my hormones really affect my pain & stiffness. And yes I have used the 50 mg dose and it stings every time really bad, even with all the info I've gotten off of here. If I was feeling better than I wouldn't care abou the pain, but since I'm not I really resent having to add more pain to my life. Also I have never quite got the concept of why I have so much pain and the x-rays show no damage...thanks to everyone for reading my long post!
Gimpymama,
When I started on Enbrel I felt the same way. I kept telling my rheumy I felt like I was regressing instead of improving. It did improve for me after about 5 months on the med. I still needed pain meds though. The sixth month I was on Enbrel I broke out in a rash that kept spreading on my body. This went on for went on for 7 months until my dermatologist finally determined Enbrel gave me bacterial and fungal skin rashes. I was put on antibiotics several times because of the rashes and finally was taken off the med. I felt lousy but my skin cleared up.
Thank you midnitestich, for sharing your experience on Enbrel. I was starting to think I was the only one this happened too! Really sorry about the rashes, that sounds awful. Especially on top of the pain we already have to deal with. This helps as I had pretty much made up my mind that at my next Rheumy visit next week I'm going to ask to switch to Humira or Arava and try those. At my last visit when I mentioned regressing he said he hadn't heard any of his other patients have that reaction. I sure hope they found you a medicine that helps you without all the rashes. Thanks again, hugsSorry can't tell you how it would affect my periods, i had to have a full hysterectomy due to endometrosis.
Gimpymama; I take Humira and although I don't think I regressed...it did take quite sometime for it to start working. I'd say atleast 4 months; and even now I'm thinking I need to start taking it every week verses every two weeks. I do think it's working, mainly because about 10 days after my injection I start feeling bad again. I think it wears off. I plan to talk to my RD about it on the 10th.
Thanks for the info Meme & Lovie - I am still taking the 50 mg and I've been on it since the beginning of Feb. so maybe I have to wait a little while longer, I'll check at my Rheumy appt this week. For some reason I can give myself the injections in the thighs, but I get sketchy about doing it in my stomach. But since so many of you have said it really helps I'll try to get my nerve up to inject it in my stomach this next week (Whether Enbrel or Humira). I've let the Enbrel sit out for 30 mins before injecting and I tried to ice the area on my thigh I was going to inject in, but for some reason the two times I tried that it hurt more afterwards. And thanks for the info on the Humira only lasting about 10 days, I'll keep that in mind if/when I switch. thanks!I haven't been able to get the nerve up to do it in the stomach either...everyone says it's the best though...maybe we should try it.
Thanks Lovie - it helps to know someone else felt the same way! Maybe we'll have to try holding virtual hands when we try the stomach
Lovie I still do inject my MTX so I'll see if I have the nerve to do that one in the stomach and let you know
Also he gave me a new anti-inflamatory to try called Mobic - sure hope this one doesn't get yanked off the market! and hope that it works, so far not doing what Bextra did, but I'll give it some more time to work. I think I was spoiled with Bextra as it pretty much started helping w/in a hour or two.
I too experienced more pain when I started Enbrel. I was even thinking about going off it since I was spending 0 a week and obtaining virtually no effects. I'm glad I waited it out because I've seen a significant difference. The weird thing was though that my blood work was showing that CRP was decreasing even though I was in pain. Now my CRP has reduced significant and i'm also seeing the good effects now. Does anyone know why that happens? Also, how long after being on Enbrel did you start to see the effects of it?GimpyMama,
I'm anxious to hear how the injection in the stomach goes....I'm not sure what day you do it but send me a PM if you don't see me post a response...sometimes I miss part of the conversations this way.
I can be a Dingy Blonde at times I'm sorry to say
Good Luck Girl!! Be brave. (I won't think you're a chicken if you chicken out...we'll be chickens together. My husband has to give me mine now
[QUOTE=Lovie]
My husband has to give me mine now
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LOL! I can't give myself injections either! My RA doc calls me a wimp :-p. I get it done at my family doc's office which is great because they take me whenever I arrive. I don't even need an appointment...I'm so glad my doctor agreed to do it. I'm so squimish that I can't watch the doc load up the syringe or put it into my skin..as well!...I can't watch the needle and syringe when I go for my blood tests. I've always been uncomfortable with needles and now that I get it like 3 times a week...i'm still uncomfortable with the idea!lol. Maybe someday I'll be able to brave enough to give it to myself until then I'll still rely on the doctor.
I don't know what I'd do without him. I'd be at the doctors office having it done myself.
Thanks for sharing Jalebi...Everyone here is so brave. I've always felt so silly!!
[QUOTE=Lovie]If it wasn't for my precious husband I'd be the exact same way!! In fact he's finally the one that talked me into it by telling me he'd do it...I wouldn't even have to watch.
I don't know what I'd do without him. I'd be at the doctors office having it done myself.
Thanks for sharing Jalebi...Everyone here is so brave. I've always felt so silly!!
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No prob Lovie. I'm glad I found someone who's also still uncomfortable with needles (dispite the fact that we get shots once or more in a week
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