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Comment from: 45-54 on Treatment for 1-6 months (Patient) Published: October 05

I had a very severe reaction to this medicine. My whole body hurt. Afterwards I developed 3 blood clots in my lungs. I reported this to the makers of Kineret, but they told me I was the only person to experience this problem. My Doctor took me off from it immediately and the physical pain went away, but I still have trouble with my blood now.

Related Reading: blood clots | kineret

Comment from: 25-34 on Treatment for 1-2 years (Patient) Published: April 09

I was diagnosed w [email protected] 7 w Stills Disease tendencies.I started this medication and it has been a blessing.I've been on multiple regimens including Enbrel, Remicade,and Orencia.None of them has worked as well for me than Kineret.I just hate the daily shot, not only bcs of the inconvenience, but also bcs the medication is thick, therefore painful when its injected.I cant do it for myself,I have to get someone else to give it to me bcs its painful.If you've ever had Gold injections, than that would be about the same level of pain, but not as bad as a cortisone shot.

Related Reading: enbrel | remicade | orencia

Comment from: RA in AK, 25-34 Female on Treatment for 2-5 years (Patient) Published: May 28

I was DX about 6 years ago with adult onset Stills disease ( a form of RA). Was on Enbrel for the first few years. Enbrel keep me functional and able to preform at my job but there was still significant pain & I was very limited in my abilities. I've been on Keneret for almost the last 3 years & could not be happier. I have very little limitations an more. I've gone mountaineering, backpacking, and many other demanding activities. The daily injections can be a pain but it is well worth the freedom it gives me.

Comment from: JRA Girl, 19-24 on Treatment for 5-10 years (Patient) Published: September 03

I've had Juvenile Rheumatoid arthritis since I was 15, i've been on Enbrel and I was sore all the time so my doctor put me on Kineret and the results are amazing. I've been using it for about 6 years and I never have flare ups or sore joints. The only problem that I have is it does not help my fatigue, I have very little energy. But My joints are almost back to normal. Doing an injection everyday is an inconvenience but nothing else has controlled my pain as well, I don't even have to take any other medication with it.

Related Reading: rheumatoid arthritis | fatigue

Comment from: David J, 75 or over Female on Treatment for 10+ years (Patient) Published: April 07

I was part of an efficacy study 9 yrs ago. This drug has taken me from approaching disability to being virtually asymptomatic. After 5 yr. of daily injections (100mg)I was able to go to M-W-F for 6 mo. then T-TH for 6 mo. Then 3 yrs. ago I stopped taking it altogether. I am still asymptomatic except for very slight joint pain in middle two fingers or right hand.

Comment from: Grammak62, 55-64 on Treatment for 2-5 years (Patient) Published: November 12

Was diagnosed with adult onset stills disease using kineret have had very little side effects with kineret symptoms I do have are mild easy to inject

Related Reading: kineret

Comment from: 55-64 on Treatment for 1-6 months (Patient) Published: May 31

I was diagnosed with Stills disease a year ago. I was prescribed Remicade every 4 weeks with no results. I was then taken off Remicade and started Kineret. It is a miracle drug for me. I have a little stiffness in my fingers and lower back which is much better than being in pain from head to toe 24/7.

Comment from: KA, 35-44 on Treatment for 6 months - 1 year (Patient) Published: October 20

After numerous failed treatments, I was put on Kineret since it is one of the safer drugs without cardiovascular disease risks. With a strong family history of cardiovascular disease I am unable to take several of the DMARD's that up the risk of heart disease. Kineret has not been as good for me as Enbrel, but Enbrel has heart disease risks, but it does help me to keep going. I still struggle a lot with fatigue, but the pain is more manageable then with the other drugs I've tried. Problem I have with Kineret and all of the immunosuppressant drugs is the ability to keep taking them on a continuous basis because I have very small children who tend to bring a lot of colds home from school. As with all the RA drugs, if you are around someone who is ill you really need to stop the medications to prevent becoming deadly sick. Kineret is effective at relieving the inflammation & pain when I'm able to take it on a continuous basis along with methotrexate & hydroxychloroquine.

Related Reading: heart disease | methotrexate

Comment from: Piedmont, 45-54 on Treatment for 2-5 years (Patient) Published: October 01

After diagnosis of adult onset Still's disease, I tried Placquenil, Methotrexate and Enbrel and had no relief. Another specialist insisted I tried Kineret, as he defined Still's disease as an IL-1 condition. Upon starting Kineret, I had relief from fevers and joint pain within 24 hours. I have taken it for several years and resumed normal life. If I am late with a dose or miss a day, I am rapidly in extreme pain and have a high fever.

Related Reading: still's disease | methotrexate | enbrel

Comment from: medicinetalk, 35-44 on Treatment for 1-2 years (Patient) Published: February 04

I was diagnosed with JRA around age 7 with Stills Disease and lupus (SLE) tendencies. So, I am very similar to another poster here. I've had rash and fevers since I was born, so I currently consider myself a CAPS (Cryopyrin Associated Periodic Syndromes) Kineret works extrememly well for me and gave me normal labs. I've tried a number of drugs including Imuran, Cellcept, Enbrel, Methotrexate, etc. The Kineret injections can be painful and gives me large bumps at the point of injection. I use Triamcinolone 0.1% ointment to take away all the discomfort. I also make sure to wait a full hour for the injection to fully reach room temperature. I would be interested in emailing with similar folks. [email protected]

Related Reading: lupus | rash | kineret

Comment from: Cupster, 55-64 on Treatment for less than 1 month (Patient) Published: May 15

I have Adult Onset Still's Disease and have been on Kineret for 3 weeks.After 2 injections it was like a miraculous healing. All my symptoms of the disease went away,joint pain, sore throat, rash, and fever.However, I had to stop the injections because it caused severe itching, brain fog, and injection site rash. I was told by the makers that no one had ever reported brain fog.I am back to having pain and only wish I could still use it.

Related Reading: still's disease | sore throat | fever

Comment from: 55-64 on Treatment for 5-10 years (Patient) Published: January 03

I take Kineret every other day for Schnitzler's Syndrome. It has changed my hives, fevers, or joint pain!

Related Reading: hives

Comment from: LuLu, 55-64 on Treatment for 2-5 years (Patient) Published: December 29

Since I am allergic to Enbrel , I have had to take Kineret. I believe Kineret does not work as well as Enbrel - PLUS you have to inject EVERY day. I will soon have surgery. The doc. tells me to stop Kineret 3 days before surgery and stay off until the wound has healed completely.

Comment from: PAS, 55-64 on Treatment for 1-6 months (Patient) Published: June 10

I have Adult Stills disease and was diagnosed 6 years ago. I have been through remicade and embrel which actually made me worse. I have been on methotrexate and prednisone also. About a month and a half ago I started kineret. It has been a miracle drug for me. it has actually made me almost pain free except for some slight pain in my fingers. I was basically non functioning prior to that when I get a flare. My only major problem is the injection site reaction. My skin swells and it becomes extremely itchy. This reaction lasts for days with no apparent relief. I would welcome any input from anyone out there who may have the same reaction and a possible solution. I do take kineret out of the refrig for an hour before, ice my skin before and after the injection. I do use a .05 cortisone cream, but it does not help much. I would appreciate any input. Please put the words kineret in your subject so I know it is from this site. Thank you [email protected]

Related Reading: remicade | methotrexate | prednisone

Comment from: princesssherryrn, 35-44 on Treatment for 1-2 years (Patient) Published: June 19

I have used this medicine a little over a year and it has changed my life completely. I suffer from FCAS which is very painful and debilitating. My insurance company reports that it will probably not pay for this drug after December. I do not know what I will do. I can not live without it.


What Is Rheumatoid Arthritis (RA)? Symptoms, Treatment, Diagnosis See Slideshow

Medical Editor: John P. Cunha, DO, FACOEP

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