I've been diagnosed with RA for 6 months. Once diagnosed, the doc put me on MTX and prednisone. Don't know if the methotrexate is doing anything for me, but the prednisone definitely does. Of course I can't take it forever, and every time I try to wean from it, the pain returns. So the doc wants me to start Kinaret. I can't take Enbrel, Humira or Remicade, since all three have been shown to exacerbate symptoms of MS, which I also have. (I like to call myself the queen of autoimmune diseases.) Anyway, the idea of Kinaret scares me, since 71% of those taking it stop quickly because of the injection site reaction. Even the doctor tells me it's awful. Someone please tell me--how bad is it really? Please don't sugar coat your reply...
Thanks.
Hi Sara;
I took Kineret for 2 weeks.........At first, I did have some injection site soreness, but it didn't bother me too much. About 4 or 5 days into it, I began to have slight waves of nausea. Not long after that, the frequent bowel movements began.......and I do mean frequent....even to the point of waking me up in the middle of the night. That continued for another 4 or 5 days, until I finally stopped taking it. That was 5 days ago, and the frequent BM's have stopped, but my stomach is still a mess. I see my rheumy on Tuesday, and I'll tell her what happened. I don't think I want to take Kineret again. But, it may not be that way for you, we're all different. By the way, I am also on MTX, 10 pills a week.....
KiKi
Thanks, Kiki. Didn't know about the frequent BMs--I guess my rheumy hasn't warned me of everything yet. If I decide to do this thing, I'd better give my boss a heads up that I may be out of work occasionally...thanks for your straightforwardness. Will you please let me know how it goes with your doc, and whether you decided to start again? Sounds like our meds are the same. Are you taking prednisone as well? Hey--I just thought of something--maybe I'll lose a few pounds in the process. (the glass is always half full, isn't it?)
Sara
Sara,
I had injection site reactions from Kineret. I had been on the drug for about a month and a half before it started. I always injected myself in my thighs. Got up one morning and it looked like I had about 20 mosquito bites on each thigh. Yes they itched bad. Had to use hydrocortisone cream and benadryl on them. From what I remember I only had them for about 4 days and they disappeared as fast as they came. Hasn't happened since.
Thanks. I was beginning to think I was the only one who had even heard of it. Your report calms me a bit. I've been pretty terrified of the injection site reaction my rheumy has described. The meds are supposed to be here next week, and I guess I'm going to start. I thought maybe I should wait until after a big trip I have planned for the end of May, since the site reaction is supposed to stop within 30 days. Are you still taking it? I'm wondering if you're getting any positive response from it. Are you also taking MTX and/or prednisone? I hope I'm like you--one of the lucky ones--who does not get daily, nasty reactions. Anything else you can tell me, negative or positive, would really help.
Sara
I got put on Kineret originally because Enbrel had a waiting list and my rheumy wanted me on a biologic ASAP. This is my second go round with Kineret. I did very well on it when I was on it previously. I was taking it along with 17mg of MTX and 10 mg of prednisone. It got me to the point I no longer needed pain meds and I really started feeling like I did before RA. I got switched to Enbrel because I have mild psorasis. Enbrel cleared my skin of the psorasis and gave me some really nasty bacterial and fungal skin rashes in it's place. Kept going back and forth to dermatologist getting one cream, lotion or antibiotic after another until rheumy took me off Enbrel. Everything cleared up and I was miserable and in pain. Had to put me back on Kineret. I did okay for about 2 months. Off pain meds again and starting to feel good. Starting having major problems with my hands mostly but also other joints bothering me. Hand specialist said the Kineret is not helping. Rheumy just told me the same thing and now is putting me on Humira. Maybe it didn't help like before because I'm not on MTX this time around. It made me too sick. Just got the Kineret refilled and now he's switching me again. Now I've got 2 and 1/2 months worth of Kineret sitting in my refrigerator. I hate the thought of throwing it out especially if someone else needs or can use it. These drugs are expensive. If it wasn't for my prescription plan I'd go broke. Luckily I only paid .00 for the 3 month supply.
Wow. What a strange disease we have! Sounds like you've been on quite a roller coaster ride. And it seems to me there's got to be a legal way to get that medicine to someone who needs it and can't afford it. Maybe the Kineret company (they have an 800 number) can point you in the right direction. Or maybe your insurance company can offer guidance. Let me know if you figure something out--I may very well have the same amount of medicine sitting in my refrigerator if the Kinaret doesn't work. Sad that so many people don't have the great insurance coverage that we do.
For me, the choices are much more limited. If the Kinaret doesn't work, the doctor is talking about some sort of blood filtering thing--much like dialisis. Doesn't sound fun. Again, you've made me feel better, in that it did work for you. And I think you're right--it could be the lack of MTX that made it wrong for you. I can't take Enbrel, Humira or Remicade because I also have MS, and all three have been shown to make MS symptoms worse. Kineret is the only biologic available to me. So it has to work. The rheumy has me on 25mg of MTX and 20 mg prednisone. Luckily, the MTX hasn't been bad for me, other than the metalic-tasting mouth and a few mouth sores. His goal is that he weans me from the prednisone entirely and possibly cuts down on the MTX. Prednisone has such nasty long term side effects (bone loss, diabetes, etc.) that he says they can end up being worse than the RA. My Gynecologist went balistic about my prednisone intake when he found out during my yearly checkup last week. He's always been all over me about osteoporosis...
So anyway, let me know how you're doing on your new meds. It really helps to find someone who's "been there."