I'd like to communiate with someone who's had specific experience with it. In case anyone is reading and doesn't know what it is, it's one of the four [injected] biologics that are prescribed for RA.
I started to answer your post the first day; but didn't really have anything constructive to add so deleted my meaningless babble. (I tend to do that alot!!)
I don't know of anyone here on it. The ones I have heard that are on it usually did not respond well to the other more well know biologics.
Is this the first one you've tried?
R_Hurst2 (Bob) mentioned in a post about remission that he'd tried Kineret. You might want to send him a PM and ask him persoanlly what he thought of it.
Although he mentioned that it didn't do much for him.
Lovie--
Yes, this is the first biologic I've taken. Unfortunately, I can't take the others, as all three of them have been proven to cause multiple sclerosis and other central nervous system problems in some users. Since I already have MS, the doc and I agree that we'd be asking for trouble--exacerbation of the MS. That would suck.
The Kineret is not giving me any trouble. Don't know yet if it's working--weaning off prednisone right now, so we'll see soon. Just spoke to Tori (Waddles) and she said she thought some people might hae opted against it because it requires a daily injection rather than weekly. Probably true. But I figure once you're a pin cushion, what difference does it make how many pins you add to it...
Causes MS? WHAT?
Just another chance we're taking I suppose.
Yes, see this is what I was thinking too. The people I've heard talk about it were unable to take the other biologics for one reason or another.
Don't give up on it too quickly. Humira took months to work well for me, and I've heard others say the same thing.
What were your first symptoms with MS? Don't we have another member here as well with both RA & MS? I hope you're finding some information here useful for both conditions.
I've not run into anyone else with both. I've mentioned it before in posts, so maybe it was me you remember.
First, I'm going to send you a site I refer to a lot. Look specifically at the bottom matrix unter " Rare/Serious Toxicities." http://www.rheumatology.org/public/factsheets/biologics.asp? aud=pat It pretty clearly warns about MS, the CNS and the biologics. I brought this subject up both with my rheumy and the neurologist who cares for me on the MS. The neuro actually called the Humira, Enbrel and Remicade companies and they all confirmed the findings. As well-read and so good with references as you seem to be, I'm very suprised that you hadn't heard about the connection. But before I answer you regarding my first MS symptoms and scare you to death, I have to say you're right--it's just another chance we take. Really no different than all the other hard-core stuff we take. And I also need to say that if I had to chose RA or MS, I'd choose MS. RA is awful and the pain is excruciating. At least the MS doesn't hurt--at least it doesn't hurt me--it just irritates the living *&#% out of me.
So symtoms--and they'e different for each person--five years prior to diagnosis, my lower legs and lower arms went numb and stayed that way for about a year. Sort of pins and needles. None of the doctors even considered MS and "don't you know that starts when you're between 25 & 35" they said. They actually tried to blame it on smoking. No kidding. You don't want to know how angry that made me--and I'm not one who will defend smoking, but give me a break! Anyway, symptoms just stopped and didn't reappear for years. Then feet/hands were numb again. Also an occasional "MS hug" which is sort of a feeling like you have a wide piece of elastic around your waist or lower rib cage. Weird. This time it stayed that way, and hands are totally numb 24/7 now--perfectly strong, but totally numb. Again, weird. I was 52 by then, so even harder to get the docs to listen to me and take the right tests, which I had researched to the end of the internet world. I knew what I had by that time. To make a long story short, I fired the doctor, turned him in to the State Medical Board, found a neurologist who listens. He recognized the prior incident as a red flag, ignored my age, ordered the three tests necessary for definite MS diagnosis - cervical spine and brain MRI, evoked potentials, spinal tap. And there you have. It's not really that scary for me. Maybe because I've not had but one bad incident--I had foot-drop for six weeks, where my ankle wouldn't flex to pick up my foot, so I tripped on my own foot a lot. (Very embarrassing to go flying across the office and land on your belly.) But it went away in six weeks. Optic nerve involvement is a huge symptom of MS I've not had. It can cause sudden [usually temporary] blindness. Prednisone--the wonder drug--would be prescribed in that case, too, and hopefully being back sight. Pretty amazing, huh? I am so grateful that's not happened to me. So there you go. Any other questions? I'll bet you're sorry you asked.
P.S. I also take another daily biologic shot for the MS (called Copaxone) so you may hereby call me your resident pin cushion.
Ouch! Ms. Pin cushion!! I admire your strength in that department. My husband (Bless his heart) gives me my weekly injection. If I had to do it as much as you I'd certainly have to get over that fear.
You know I thought I was well read with this disease and certainly THOUGHT this medication but obviously I missed this one. You're right though...I'll still risk it. There's cancer warnings on there as well and I'd still be their spokes model if they asked. I can so relate to the folks on the commercials bragging about the way they've gotten their life's back.
I looked at MS early on while I was library researching about 12 years ago (before the internet for me). I eventually found RA and it described me to a T so I never thought anything else about it.
I actually started thinking about it not too long ago when I was having this off and on fogging thing going on with my eyes. Often at the exact same time I'd get this strange feeling in my leg on the same side. I can't describe it as a numbing feeling; but it felt almost as if I had cold chills going down just that one leg. Very strange; although not painful. Often my feet and lower legs will fall asleep (for lack of a better way to describe it) especially when I've been sitting. I don't even realize it's happening until I go to stand up and realize what's happened.
I've had one spot between my ankle and knee on one side of my body that has some sort of nerve damage. Possible caused by nerve damge from an old surgery to correct a growth problem when I was younger. Now that is painful and it more painful this week since I've been off of my MTX & Humira. I don't know if that stuff helps it as well, but this week without it has been worse than usual. I use a lidocane patch for it off and on. Have for probable 6 months.
Thanks for the website and the MS info. I'm not looking to add another diagnosis to my thankfully short list of illments but I've learned from this disease you just need to be aware.
Are you a member at any websites for MS? Not that we want to lose you but this forum has been so helpful to me with this disease. I'm sure speaking with others that share your illness would make it easier for you to handle as well.
Thanks again;
Lovie
I doubt you have any MS going on. Just doesn't sound like it. Close, but not quite, you know?
And no, I'm not involved with MS boards. As I said, RA knocked me on my tail, and I knew nothing about it. I didn't have a clue what RA was, or how it would affect me. I needed this place. MS is what it is. I know it's there, but I sort of ignore it. (Nothing wrong with a little denial now and then...) RA doesn't let me ignore it. It's in my face every second. I need the support and education all the time.
Take care.
no; I don't think I have MS either. I was more curious than anything.
I'm going to post the above link on the "Useful Links" section. That's great imformation on biologics, and I know so many here are considering them.
I printed the information and read it last night, and although most of it I've seem a thousand times I swear this was the first time I've seen those three could cause MS. How strange is that?
Thanks for the info.
Lovie
Sara
I'm new here and just saw your post about Kineret. I have been on it for about 2 1/2 years now. It seemed to be working well for me until about 6 months ago. I'm still hanging in there with it, but am awfully tired of it!!!
Let me know if you have any questions about it, maybe I can answer them for you.
Great Tassie. (WELCOME) I am glad Sara found someone on Kineret. I have read about the MS side effect. Another one that scares the hell out of me. I had a boyfriend with MS and it was really hard on him. It effects people to different degrees just like RA. All of the folks on here with multiple dx, makes me feel like a big whiner sometimes. Hang tough Sara.What do you mean, you're getting tired of it? Has it stopped working do you think? Did you get the injection site reaction they warn about? I got none, but I notice the shot itself is far more painful than the one I give myself for the MS. The stupid simpleject they give you is so abrupt and makes such a noise it startles me every time. But I prefer to inject myself in my plentiful rear end, so I need it. The injector they gave me for the other stuff is so much more gentle. Do you feel as though the medicine is sort of thick, and maybe that's why it hurts more? I've just started my 13th week on it, and I'm hoping it's finally kicking in. I'm down from 20mg to 3mg of prednisone, and so far, so good. I'm also curious as to why you chose Kineret over the other biologics. Enough questions for now. I feel like I pounced on you...
Roxy (Sadie, Sadie, married lady)--don't worry about me. I'm a tough old chicky. I've gotten sort of used to the MS symptoms, so they're just sort of...there, you know? And when all else fails, I just click into my denial mode for awhile. Works every time.
I've been on Kineret twice. Kineret was the first biologic I was put on. There was a waiting list at that time for Enbrel and my rheumy wanted me on a biologic ASAP. I was took it for about 8 months along with mtx and prednisone and did very well. It enabled me to get off pain meds. I eventually was switched to Enbrel which was a big mistake. It gave me all kinds of bacterial and fungal rashes. I was put back on Kineret but this time without mtx. I did not do as well and adding mtx was not an option. Mtx made me too ill. I am now taking Humira. I noticed you said the shot is painful. Are you talking about the med burning or the needle hurting. If it is the med are you taking it right from the fridge and injecting? The med can be left out for 60-90 minutes before injecting. I never had a problem with the med hurting. I would like to find someone who needs Kineret as I have 9 weeks of unopened boxes of it sitting in my fridge. I would rather see someone use it than have to throw it out.
No, not burning. I always let it get "warm" first. Just as you push it in, it just hurts. Almost as if you're pushing it in too fast. I suspect it's the injecor. It goes much faster than the other injector I use.
I don't need the Kineret you have--I have great insurance. I wonder if the company can help you find someone--probably not. Hopefully, someone will see it in your post here.
Hmmm. I was hoping to get off the MTX and keep Kineret. May not be a great idea. How much MTX were you taking with it?
Thanks for this post . My rheumy and I were discussing Kineret at my last visit. I tried Humira and Enbrel for a year each. Worked great in the begining but about the six month mark started having a lot of break throughs..
Hope it helps!!
Susan
Hi, Susan--
I give myself the shot in the late afternoon, not that it seems to matter, as long as you get yourself onto a somewhat regular schedule. Whatever works for your life. It does not cause me to feel crummy or tired or anything, so I don't have to worry about that. The only thing I worried about was the injection site reaction that a lot of people get at first--usually in the first 4 weeks. (Remember--I had no other choice, as I cannot take the other three because of the MS thing.) My doc warned me that it can be bad--huge welts like a giant mosquito bite, hot, itchy, painful. He was honest with me and told me most of his patients give up and quit because of it. But if you can tough it out for those weeks, it stops, and you're good to go. Well, warned like that, I made sure I had lots of benedryl cream and tablets, and ice packs and the like ready. Well, I got no reaction. Zero. The only negative I can talk about is what I said before. It's sort of painful. But no more painful than, say, getting a flu shot once a day. And the pain only lasts maybe five minutes. I figure that's a lot better than RA pain, for sure.
Please let me know when you start and how it's going. It's so good to know I'm not the only one. Maybe we can figure it out together, since I'm only a couple of months-worth of Kineret ahead of you.
I also took Kineret for awhile. It was the first biologic that I tried. It worked a treat!
However, I did find Kineret to be the most painful injection of any of the biologics. I had to stop taking K, because it stopped working.
I am really brain dead lately, so I'm not sure what your question is. I'll try to answer any questions if I can.
Sara....
I tried Remicade first and starting reacting to it after about 5 months. There was a wait list for Embrel, so I choose Kineret. I'm just tired of having to give myself a shot everyday, it's a little depressing for me. It does hurt some days, and some days I don't feel it at all. I think it's the medicine going in that hurts, more like a sting. You are right, the self injector does make a lot of noise and still startles me after all this time. I use my thighs and did get the injection site reaction....large welts, red and WOW did it itch!!! They lasted about 2 weeks and I haven't had a problem since. I did have to resort to giving the shot in my stomach for a short time, did not like that. I have erosions in the bones of my feet and have gotten worse over the past year, that's why my rheumy is worried that the Kineret isn't doing it's job as well as it was. We will xray again in about 6 months. I'm on 17.5 mg of mtx and feldene is a NSAID.
It's good to talk with others that are on it, everyone I know is on Embrel!
Tassie
Sara,
Thanks for the info. I currently get the site reaction with the Enbrel. I take it at night that way the worst of the itching is over by the time I get up. The welt ususally lasts at least two days. I go to my rhuemy next week and will bring up the kineret. They think that may be the next logical choice. From what I understand it targets a different part of the immune system than Enbrel and Humira. My husband has had great success with the Enbrel. I let you know what the doctor's think. ONe other question- is the Kineret as expensive as the enbrel and humira?
Thanks again,
Susan
For sure--expensive! About ,000 per year if you had to pay for it. (I only pay ever three months.) What's sort of sad is that the stuff I inject for the MS is another ,000 retail. My insurance company is definitely giving me some good coverage. Sometimes I worry they'll cancel me because I cost so much!
I didn't realize that Enbrel could give you an injection site reaction. They say the Kineret rection is the worst of them, but hopefully you'll be lucky like me and get none. And you're right about it targeting a different part of the immune system. I wish I understood that part of it better. Have you ever found any straightforward explanation of that issue?
" I wish I understood that part of it better. Have you ever found any straightforward explanation of that issue?"
LOL! There really isn't a straightforward explanation of immune systems and the Rx's that (try to) control it.
There is apparently something called a cascade of imflammation that is part of what imflammatory arthritis(es) create. The biologics act on a different components of the imflammatory cascade.
There are TNF's (Tumor Necrotising Factor) like Remicade, as well as a staggering array of ILA protein molecules. There are I believe 2 FDA approved drugs that act on the ILA's and at least two more in varying stages of drug testing. Kineret is one ILA drug and I can never remember if it's Enbrel or Humira that acts on ILA's...
Sara when I took MTX with the Kineret it was 17.5 mg. I paid even less than you did for my 3 month supply. My copay was .00. I still would like to find someone who needs it.You know what, Midnite? I was thinking about that. How about talking to your rheumy or his nurse? Surely they might know someone who could use it. Or at the least, they could give it as samples or something. Like they could give some person two or three weeks' worth, until they get their own supply. Hi Sara,
Turtle--
I'm so sorry I'm just now answering you. I'm terrible about remembering to check this site. No, no weight gain from the Kineret. Only from stuffing my face. Are you also on prednisone? If so, I suspect that's what's doing it to you. It makes you hungry.
You probably already answered this, but why are you taking it twice a day? That's very strange. How many mg are you plugging into yourself? If you're doing 100mg a day, how do you do that, since it only comes in 100mg prefilled syringes? Now you've got me wondering!