how about the rheumie's phone service line? as much as I like all the hotline nurses that I have spoken to over the years for four biologics, I feel like they are pharma extensions. I like the rheumie's office with the kabillion patients who have seen everything and have the best interest of you (well we can hope anyway) in mind. can you call today?

depot

I agree with depot - I would call my Rheumatlogists office.

Definitely call your rheumy. They need to know about the reaction even if they want you to continue taking the medication. They may even be able to prescribe a topical steroid ointment for the rash.

I had the exact same reaction with Enbrel shots and was told to do the Benedryl thing too. I only took Enbrel for 3 months but I had it each and every week for all 12 weeks I was on it. Finally stopped because it didn't help my Ra one bit.

Jen

When I was first on Kineret, I had masses of injection site reactions. Each one was itchy, and they were big 2 to 3 inch across welts. It got hard to find a place to inject, that didn't have a welt, esp. since it is a daily needle.

I don't know how many months after I started, but I decided not to inject in my belly, just do mthx there. Because the belly shots itched worse and seemed bigger. So I only did the thighs and hips and it totally stopped.

Now it may be that was random chance, and the injection site reactions would have stopped then anyway. All I know, is I was totally flare free and no pain, and lots of energy, along with the mthx, which had never worked well on its own.

I'm trying to get back on Kineret, because nothing else has worked for me. I wonder if being off of it for 6 years, if I will get the injection site reactions again?

I've done Rituxan and Actemra by infusions and never had an injection site reaction. I also injected Simoni and now Orencia and no injection site reactions. But lots and lots, just like yours, -raised, hot and so itchy with Kineret. I will take that, if it means the flares and pain stops.

Also the information from the company says that there is a high probability of injection site reactions. So I personally would not worry at all about it. And I do believe it will go away. I hope it works as well for you, as it did for me!

Thanks everybody, especially Marlene- good to hear from another Kineret user. I did send an email to my rheumy, and her nurse wasn't worried and advised Benadryl cream and calamine for the itch.

Marlene, I think I will try your strategy of not injecting into my belly. I am on Arava instead of MTX, so I don't have to preserve injection sites for that, but I do find that the welts on my belly are much more sensitive that the one on my arms and thighs. Like you, I feel like I can put up with these reactions for a while if it means Kineret will work for me. I have only been on it slightly longer than a month, so it's too soon to say one way or another. (So far I'm not doing so well, but I'm still hopeful.) I've run through most of the their biologics, and my rheumie is talking about cyclosporine if this doesn't work. That's a pretty scary drug in my mind. So, I would put Kineret in my eyeballs if it worked for me!
Caren

I sincerely hope it works for you. I heard that only 30% of people who tried it, it worked for. But since I was one of them it worked on, I am quite enthusiastic about it! It was the best biologic I was on. Mainly because it was a daily needle. According to my rheumatologist, my body seems to destroy drugs, but it couldn't get the Kineret out of my system fast enough for it to be destroyed, because I kept putting it back in daily.

And I won't tell you what it is made out of. You really don't want to know. But you should know that I am just dying to get back on it, hoping it will be a magic bullet once again!

I've been on Kinaret about 6 mos. i still get site reactions - welts about 2-3 inches around. Cortisone cream helps a lot. My rheumy suggested putting on cortisone cream right after the shot, rather than waiting for the welt. It does work much better.

I also have a trick to share. You are supposed to leave it out of the frig for 1/2 an hour, but when I am in hurry, I put the syringe under my arm for about 5 minutes. It also makes it sting a little less, because it's body temp rather than room temp. I hope this isn't too gross.

BTW, this is the most painful shot I've ever taken. It's worse even than Enbrel and Humira. Stomach really does hurt the least. Poor us! We go through so much.

LadyJane, I always found the Kineret needles to be much bigger than the diabetic/mthx needles, plus the solution is much thicker, meaning it does hurt more.

Still, I would do it in a minute, if it meant the pain and flares stopping!

I had the worst injection site reactions when using the auto-injectors for Humira. For me, what worked was taking 50 mg of Benadryl (bedtime only) and at the same time, taking the injector out 30 minutes before injection. This amount of Benadryl helped tremendously. If the site was still itchy the next night, I would take another dose of Benadryl. This was manageable for me.

Now that I am on pre-filled syringes of Enbrel, I have far fewer symptoms associated with the injection site. I barely notice it, but I do still take 25 mg of Benadryl and I do still take the syringe at the same time (30 minutes before injection).

Again, the 50 mg of Benadryl worked well for me when I had this problem. And in hindsight, it is annoying, but (to me) it is a small price to pay for a drug that helps with RA so much.

LadyJane, thanks for both of those tricks! I also find Kineret to be the most painful injection I've had, and I have self- injected MTX, Humira, Enbrel, Orencia, and Actemra. None of those caused me to have welts like I'm getting from the Kineret. But, like Marlene said, I'll definitely put up with this if it means an improvement in my rapidly progressive RA symptoms.