1. Community
  2. Bones, joints and muscles
  3. Ankylosing Spondylitis

Wanting to try Anakinra (Kineret) but not sure

Posted , 4 users are following.

debra820
debra820

Has anyone ever taken Anakinra (Kineret) for ankylosing spondylitis if so did it help and did you have any side effects . I am thinking about taking it but not sure

0 likes, 4 replies

4 Replies

  • tMendez88
    tMendez88 debra820

    Posted

    Hey.

    I've been taking Anakinra (kineret) for over a year for a different decease; IRP. So don't know if my answer will help you a lot, but I'll share anyway.

    I've had some really mild side effects such as dry skin in my face/hairline, as well as an untreatable footwart (dermathologist says it's probybly due to Kineret). Totally worth it as it has worked better than any other medication I've tried (been sick for 10 years+). Also, I've had some pain/irritation/itches at some injection points (my right leg), but it gets better if preparing with a cream (ask your doctor), and by avoiding such places. Like, my left leg is totally fine.

    If you have just a tad of body fat, injecting yourself every day should be no problem. You can inject in your stomach if you have a little bit of stomach fat. However, I am a relatively thin person, and finding a surface which is muscle-free is difficult. Both my legs and my stomach expose basically only muscle. So at times, injecting is very painful. Especially as your'e not supposed to reuse a spot: if you find a good one, can't reuse it for a couple of days. I never inject in the stomach anymore, it's almost impossible for me. Pain will go away about 30 seconds after injecting though, if any pain at all. Injection pain varies from just a tad from the needle, to strong pain during the entire injection. But never unbearable.

    Most of the time, my significant other does the injections in the back of any of my arms. This is totally the best place, impossible to do on your own though.

    However, the packaging states some possible not-to-mild side-effects like serious skin rash or violent diharriea. Just sharing my experience. It's a very expensive medication, you have to be well insured.

    • debra820
      debra820 tMendez88

      Posted

      Thank you this was very helpful I just pray insurance covers it .I really dont want to go on enbrel or humira their side effects scare me.
  • gillian17884
    gillian17884 debra820

    Posted

    Hi debra, I ve never heard of this drug, is it an anti-tnf. Im so sick now of asking my rheumatologist for some hepl with the pain, filled in numerous pain score charts to no avail, think maybe its my hospital that wont pay for expensive drugs. I have had AS now since I was 26, Im now 55 and the pains in my neck and arms is really getting me down, along with the lack of sleep and feeling useless. The only time I feel good is on holiday with some sun on my bones, when I win the lottery Im off to Spain. haha
    • debra820
      debra820 gillian17884

      Posted

      Its not tnf drug but it is a bologic . Unfortunately my doctor called and informed me that it would not help my kind of bone disease. The doctor said I would have to choose humeria or enbrel. Not to happy because of all the side effects. I have decided to go with enbrel. Really nervous about taking it.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.