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mary ann42677 mary ann42677

PMR and ACTERMA injections

I was diagnosed with PMR 2 years ago and have been on Prednisone since.  My inflammation numbers keep elevating and when they lower the Steriods to 10 mg I get severe flare ups and have to raise the Steriods to 15 mg.   Very frustrated because the drugs are affecting my organs.  Reheumologist wants to add injections of ACTERMA , I am very scared to agree because I react to medicine so much,   I also am concerned that it will increase risk for heart attack.   Has anyone had any luck with other treatment or is anyone on the ACTERMA injections.  Any insight will be greatly appreciated.   Thanks 

15 Replies

  • EileenH EileenH mary ann42677

    There is no other medication approved for PMR/GCA other than corticosteroids and Actemra and even the Actemra is not used on its own, only in conjunction with pred to allow a speedier reduction of the dose. There are a few people here on Actemra, but there are quite a few on the Healthunlocked PMRGCAUK forum. All are in the USA - it is only approved for GCA under very specific circumstances in the UK.

  • mjhollywood mjhollywood mary ann42677

    Hi. Yes.  Been on a acterma 7 months done to 1 mg predsone.    It’s woking for me. One shot a week.  Try it. I am 56 work on my feet all day in high heels.  And spinn 3 days a week.   Maryjean 

  • Bethune Bethune mary ann42677

     Actemra did not work for me, but it seems to work for many. I can’t quite remember the side effects I had. I believe it was itching and fatigue, and just generally not feeling any better. I stopped the Actemra and I’m presently on 15 MG prednisone. Once you hit 15 you really need to go down very slowly. Perhaps your doc is rushing you?Perhaps if you only go down 1 mg a month following the DSNS schedule you might be more successful lowering your prednisone without a flare . That being said, I have successfully gotten down to five mg of prednisone and stayed symptom-free for several months, but eventually had a flare and had to go back up, most recently to 30 mg prednisone. I got back down to 15 in two weeks and I am now going very slowly. Good luck!

  • EileenH EileenH mary ann42677

    Yes - I agree with Bethune's comment that your rheumy probably isn't going about your reduction very sensibly if you are yoyoing between 10 and 15mg. You must reduce 1mg at a time and then you are more likely to reduce without flares. Many of us have done so - but rheumies tend to have one view: get the patient off/to a low dose as quickly as possible. More haste, less speed...

  • susan29426 susan29426 mary ann42677

    My pattern was a lot like yours - on prednisone for 2 years, coudn't get under 10-12 mg. and inflammation was high despite radical dietary changes, tumeric, etc. etc.  I have been getting monthly Actemra infusions for about 7 months, inflammation markers are around zero, and I've been able to lower prednisone to 5.5-6 mg. The prednisone may have been affecting my heart, which is what finally made me decide to try the Actemra. Also, I needed colon surgery and the surgeon wouldn't talk to me until I had the prednisone under 7. So far, so good. No side effects that I've noticed, and I haven't even gotten a cold/flu (I take 1000 mg of C every day, against doctor's orders). btw, the surgery was unsuccessful because my colon didn't heal back up - due to prednisone, they say. So now I'm waiting another three months or so for them to try again. Best wishes. I hope that if you try the Actemra you also get good results. I turned it down the first time, because the side effects were so scary. But prednisone can be scary, too.

  • charles92035 charles92035 mary ann42677

    Hi maryann42677,

    I have GCA and PMR and take Prednisone and Actemra/Tocilizumab. I had a very difficult time dropping below 24 or 25 mg of Prednisone and the Doctor suggested Actemra and it helped. I am now below 10mg. If I get a Flare it is much less intense than before the Actemra. I have had no side effects yet and have been on it one year. I hope this helps.

  • cindy828 cindy828 mary ann42677

    My rheumy put me on Actermra and took me off of Methotrexate six months ago.  After 2 years of Prednisone, my CRP and Sed rate are normal.  I've been off of Prednisone for one month and currently weening myself off of Acterma and I'm miserable.  I have joint pain in most of my joints and muscle pain practically everywhere along with fatigue and itchiness.  One of the rheumies in my doctor's office, said I was experiencing Prednisone withdrawal and it would only last a few days, so I needed to tough it out.  My rheumy said I could go back on Prednisone if I wanted.  With conflicting doctor advice and my own hope that if I tough it out, it will pass, I'm staying off of Prednisone.

     I've put so much pain and suffering into this process that I'm reluctant to abandon it.  I'm taking Acterma every two weeks now instead of every week.  I took a shot yesterday and my joints and muscles feel much better today.  Now I'm afraid that the withdrawal from Acterma may be just as bad as Prednisone withdrawal.

    • Anhaga Anhaga cindy828

      Don't "tough it out" if a) the pain continues to get worse, not better, and/or b) you begin to get symptoms of adrenal insufficiency.  You need the cortisol pred has been giving you and until the adrenal glands are working again it doesn't matter what the doctor says - this pred withdrawal effect is potentially life threatening.  It also doesn't seem to be known yet if Actemra actually "cures" the cause of PMR or if it is simply a particularly effective steroid sparing drug, in which case you'll need some pred until remission.  Frankly I don't think you should be experiencing pain at all, not if the drugs have been doing their job, and if you have been tapering slowly enough.

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