A Year with Kineret (Anakinra): Some Reflections

As I near the one-year anniversary of starting my Kineret injections, I want to take a moment to bask in the glow of getting my inflammatory arthritis into remission. I was one of the lucky people who responds to anakinra almost immediately, with a significant reduction in symptoms (in my case a magical ACR70 level of improvement) within six weeks. My rapid response further cemented my rheumatologist’s hunch that my arthritis is autoinflammatory rather than autoimmine in nature, and closer to Adult Onset Still’s Disease (AOSD) or Tumor necrosis factor receptor-associated periodic syndrome (commonly known as TRAPS) than to seropositive Rheumatoid Arthritis. We also briefly hoped that my success with Kineret meant that all my symptoms had been from AOSD/TRAPS and would resolve with Kineret treatment, but a recent Lupus flare–likely triggered by reducing prednisone and plaquenil–unfortunately suggests otherwise. (That, however, is another story for another time.)

Kineret gave me my hands and feet back. It also helped to control my frequent low-grade fevers and GI symptoms. It has improved my skin rashes. I’ve had fewer secondary infections. I have more energy on a lower dose of prednisone. Compared to how I felt two or three years ago, the change is nothing short of miraculous, and you can see it in my hands:

My hands

Left: 2014, Right: 2011

But Kineret isn’t for the faint of heart. It requires a daily injection. Every single day.  And the solution is considered “preservative-free” but it contains sodium citrate– also known as citric acid. This means the injection feels about as good going in as pouring lemon juice in a paper cut. In additional to all the regular scary warnings that come with biologics (risk of infection, malignancies, anemia), there’s also a high chance (about 70%) that you will develop an injection site reaction (ISR) during the first four weeks of treatment. I made it through the first two weeks without incident, so I thought I had escaped the window of opportunity for an ISR. Wrong. Oh, how wrong I was.

When the rash first started to appear in small clusters of red bumps, I though I was having an allergic reaction to something environmental, like laundry detergent. Then, a few days later, the initial clusters became enormous plateaus of raised, angry welts. (Meanwhile the newer injection sites produced the small clusters.) In a few more days, the big welts would harden and darken, like bruises. At this point, they managed to be both painful and itchy simultaneously. It was during this time that I was trying to run a 300-person conference, so I dosed myself with antihistamines at night and periodically applied antihistamine gel during the day and tried so very hard not embarrass myself by scratching my upper thighs in public. As I swelled up and the injectable real estate on my thighs got more and more exclusive, I thanked whatever deities might be listening that I hadn’t tried injecting my stomach.

While all this was going on, I tried to search for pictures of anakinra ISRs online, but nothing useful came up. So for the sake of science, and other autoimmune and inflammatory arthritis patients, this is what Kineret (anakinra) injection site reactions look like. (ISR photos below the cut.)

Kineret Injection Site Reaction on Thighs Kineret Injection Site Reaction on Thigh

The good news is that the bruising faded, and now it is almost impossible to tell where I’ve done an injection by the next day. But ISRs or no ISRs, Kineret has changed my life. As a result, I am even more committed to fight on behalf of patients to keep biologic medications accessible and affordable. The ultimate aim of medicine must not be just to keep us alive, but to allow us to flourish.

33 comments

  • Adrienne

    Just stumbled upon this blog post…I’ve been on Anakinra for 11 months now. I find that I get bigger ISRs (basically a big ol’ nasty hive/welt) on my legs than if I do them in abdominal sites. While my autoinflammatory condition(s) aren’t in complete remission, I can say Anakinra has improved the quality of my life greatly.

    • Megan

      Thank you for commenting and I’m sorry I’m only seeing this now. Do you still get ISRs from anakinra? I have minor irritation sometimes, especially if I take a hot shower too soon, but none of the itchy, painful welts like in the photos.

  • AJDF

    Thank you for sharing. I have been on the injection for 2 weeks now and started having the injection site reaction after the first week. So hopefully, I will start feeling better soon.

  • LInda

    Thank you for posting pics of injection rash. Almost two weeks on Kineret now and my stomach i full of those “roses” – helps to see pics that tells me it is normal!

    • Megan

      Hi Linda,

      So glad to hear my photos are helpful! I hope the worst is past for you. Topical benadryl gel really helped for me.

      –Megan

  • Michael

    Thank you very much for the article. I was diagnosed with Still’s Disease two years ago and have been on cortisone since but recently a new dermatologist that I’ve been seeing since January suspects that it is TRAPS that I have all along. He said Anakinra will have to be prescribed if colchicine can’t do the job or suppresses the symptoms well enough. My question is once you’re on Anakinra is it forever?
    This particular biologics isn’t covered by my health care and I’ve been told that it’s prohibitively expensive.

    • Megan

      Hi Michael,

      Unfortunately, the symptoms of periodic fever syndromes like TRAPS are caused by defects in the innate immune system, so it’s likely that one will have to be treated for life; however, there may be situations where the majority of symptoms can be controlled with something like colchicine and only flareups would require a strong drug like anakinra.

      Anakinra is quite expensive–about $3,000 per month in the US. There are programs through Amgen/SOBI and private foundations that can help cover all or part of the cost if your insurance won’t cover it and you meet certain income requirements. I’ve heard there there are also some oral and long-acting versions of IL-1 blockers (the class of drugs that anakinra is in) under development. I’m looking forward to the day I can take a pill or do a bi-weekly injection instead. Good luck!

      –Megan

  • Cynthia

    I cannot thank you enough for this post. I’ve been diagnosed with Adult Onset Still’s Disease and the last 15 months have been some of the most challenging of my life.
    I have tried: infusions, injections, steroids and FINALLY, as of two weeks ago, Kineret.
    The immediate effect has been somewhat miraculous, but I was startled by the itchy and painful welts on both upper thighs. (I look exactly the same as your earlier photographs)
    Just the knowledge that another woman went through exactly the same moment, but has gone on to a complete remission, makes all the difference.
    I celebrate you and your recovery!!

    • Megan

      Cynthia– I hope your ISRs have improved and you’re continuing to see your symptoms recede as well. 2 years later and Kineret is still keeping my TRAPS/Still’s symptoms at bay, though I’ve continued taking a low dose of prednisone to control my lupus symptoms. Thank you for reading and be well!

  • Lauren

    Thanks for posting this I am 17 years old and on day 11. I just found out last year that i have a genetic disease called familia mediterranean fever (FMF), but i have a second gene defect and makes my symptoms longer from 1 week up to 2 months. I haven’t witnessed and experienced any rashes and hope i don’t. I also was on prednisone for a 5 months. Did you experience change in appetite and weight gain? Just like Michael I was prescribed colchicine to prevent/reduce/block the amount of time and reducing the pain. I’m still on colchicine and kineret. I hope to see results soon. I hope you are doing well and thanks for posting this.

    • Megan

      Lauren– I hope you’ve managed to avoid the ISRs. If not, topical benadryl helps a lot! I definitely gained some weight when I was on a higher dose of prednisone, but the good news is that your metabolism will probably reset once you’re off the prednisone, or at a lower dose. I haven’t had any issues with appetite from the Kineret. Are you feeling any better now? I hope so!

  • Lauren

    Hey Megan,
    Thanks for replying! I’m feeling much better and finally off the prednisone. I was wondering if you ever had a elevated liver transaminases. When my blood test came back they said that I had a really high and elevated liver. They also have been changing up the dosage I started with 100ml, then because of the liver it changed to 50ml every other night and finally I am at 50ml every night. I also wanted to know what if the best place you like to inject yourself. Right now I’m injecting into my abdomen and stomach but the needle has been hurting my skin and I hard to penetrate through. Thanks again for replying.

  • Jordan Yaron

    I’m so glad that your treatment is working! It looks like you had a very impressive change in physical symptoms and I’m glad to hear quality of life has improved as well. I finished my PhD in mid-2015 with a dissertation focused on the inflammasome, which regulates IL-1 cytokine signaling. As you know, Kineret puts a stop to the whole pathway at the IL-1 receptor! Your post has reassured me that this was the right career choice, because even if I end up only making incremental contributions, the end result is a better life for you, me, everyone. Keep on keeping on!

    • Megan

      Thanks for this Jordan, and thank you for your commitment to this kind of work. I worry that we “rare disease” types lose out because we aren’t of interest to the Big Pharma machine. But I also know that it’s often the NSF and NIH funded research going on in universities and hospitals that really encourages imagination and exploration. I’d love to hear more about your particular area of research.

  • Jill

    Thank you for the photos! Incredibly helpful as I’ve just started getting my blasted itchy welts. They are huge and all over! I’m curious as to how long they lasted for you? I’m sure it’s different for everyone but it will give me a hopeful timeline 😉

  • Andrew

    Thanks so much for sharing your experience and photos! I’ve been on 7 biologics and 5 DMARDs for seropositive RA since 2009. Six joint surgeries later and I’m ready for some relief. Kineret is the last option before going off label experimentally or on a clinical trial. I’m on day two of injections and the ISRs already started.

  • Robert

    I’ve been battling with AOSD for most a year.My Rhem.tells my there is such a fine line between stills and RA,Tried the Embryl for 10 wks, nothing .Just started infusion treatments (actemra) 5 weeks ago.Started on low dose and just had it stepped up this past Monday still no affect.I know it takes time but frustration and pain makes patience hard.was also on prednisone and methotrexate before , no affect.No longer on prednisone , still taking methotrexate with the infusion treatments.Not sure what future health holds but not thrilled with the thought of doing daily injections of kineret if needed.life without pain is a motivator. Thanks for sharing as well. God bless you all! Robert

  • Ashley Nicole

    I know this is an old post, but thank you for sharing your experience. It’s definitely calmed me down a bit.

    I was diagnosed with Still’s Disease three years ago, but I’m seeing a new Rheumatologist at the Cleveland Clinic and they’re suspecting that I have TRAPS. I’ll be getting the genetic testing done on my next visit.

    I’m starting my third week of injections and last week the welts started… and I’m not enjoying that one bit. However, I can really tell how well the kineret is working (even though I’m still tapering off some high doses of steroids). I know you said they took about two weeks to go away, but did you ever stop getting injection site reactions? Or did they ever lessen in severity as you continued your treatment?

    Thanks again!

  • Jess

    So refreshing to see some pics to know its normal and happens, thank you. I’m in a study at the NIH using 200mg of anakinra for a rare pustular disease. At first, they told me to expect site reactions for the first few weeks but that they would go away… I made it exactly one month without any issues thinking I’m in the clear and then BAM each one has welted up for the last 5 days… Even a few previous ones decided to join in! For you, was it 2 weeks until they resolved or 2 weeks until they stopped starting to show up? It’s one thing to be told it will be okay, but to be able to see a similar reaction is reassuring, thanks again!

  • Nancy Sawaya

    Hi Megan. Thanks for your posts on this blog. I found it while looking for information on side effects of kinaret. My first injection was yesterday. I have TRAPS and the only other people I know with it are my family members. The injection site pictures are very useful.

    How are you doing now? Is there a way I can see your blog regularly?

    Nancy Sawaya

  • Jessica Taylor

    The ISRs are brutal. I’m on day 17 of kindred and I’ve had ISRs for the last week. The emotional and physical toll they are taking makes me want to refuse this medication but I know this is my last chance to get off of prednisone. I have a steroid cream and am on 20mg of reactine to try to combat the reaction but honestly nothing is really helping. Any more advice anyone can give would be much appreciated. Maybe people came share how long it was before they stopped having reactions so I can see some light at the end of this tunnel? Thanks in advance.

  • Alexis Osorio

    Hi, not sure if anyone still post on this , but I currently have still diease RA and just started my first injection today , what time do you guys find it is best to take the injection in the morning , afternoon or night ?

  • Shira Dyse

    Hi. Thank you so much for that information. I’m 36, and I was diagnosed with Stills Disease about two months ago. I have been taking 60mg a day of prednisone for 2 months also. Increased appetite with the chipmunk swollen look. Recently, my knees has retained fluid. I just started the Kineret injections (on my 5th injection) and my sore throat went away. Now, I’m hoping that the fluid in my knees goes away. Praying for better days!!!!

  • Darcy B Dunn

    Thank you so much for writing this. Ive been on Kinaret for about 10 wks now for acute pericarditis that ive been on prednisone for the past 8 yrs. Ive tried everything but this is the only thing that has worked as i started noticing relief after 6 wks of taking it. My arms have calmed down but my stomach and legs itch SOOOOO BAD and are STILL totally discolored after weeks of not injecting there. BUT i have been able to taper lower than ever off the pred so HOORAY for that!

  • dana greenwood

    I’ve recently started on kineret injection due to an anti inflammatory disease which caused me a severe rash on my face and also sickness and muscle pain. I’ve been on the injection 13 days now and it is defo working. But the injection site are so painful the lumps I have on my legs are so bad I started injection in my stomach and now the lumps there are so sore as well. There quite painful and raised and hard also itchy.
    I wondered will I always get these lumps everytime I inject or will they stop eventually. My worry is soon as the area clears I have to inject back there because everywhere else is full of big lumps.
    Any information would be great.

  • Ashley

    I was diagnosed with stills disease almost 1yr ago. Kineret has literally given me my life back too. I’ve been on the injections for 5 months and still have the horrible injection reaction. They have not gotten any better for me, and the shot still hurts like heck!! Even though it has some drawbacks, I thank God for this shot everyday 🙂

    • Tiffany A Gordon

      Hi Ashley! I just got diagnosed with Stills Disease this Jan and I was oddly excited to see that you also have been diagnosed. Stills is such a weird phenomenon to me and I am trying to find a support group or anyone with more information. I don’t know if you would be interested in becoming friends lol I’m just looking for someone who shares my struggle.
      Tiffany

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