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edsteve09

Starting Acterma and nervous

Hi everyone I seldom post but read your discussions often. I live in the US and have been approved to take Acterma injections. I have GCA and PMR diagnosed last July. I haven't been able to taper very much off steroids. I would love your feedback about the medication and especially if you are taking it. Pray for me  that Ive made the right decision. 

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  • edsteve09

    I've been taking Acterma for 6 months without side effects - I think.  I say this because it's difficult to sort out PMR, Prednisone and Acterma.  How can you tell which one is the source of the condition?  It did help me get off of steroids.  I've been off for a month, but I still have pain in my joints and muscles which comes and goes but does seem to be diminishing.  It is not as bad as the PMR pain, but it's uncomfortable at times.  My doctor thinks I tapered off of Prednisone too quickly - I went from 20 mg to 0 in 6 months - but I refuse to go back on it.  My body loves it, but I worked too hard to get off of it and I want to give to try living without it for a few more months.  

    Crazy thing about Acterma is that no one knows how you should get off of it, because it's too new, so my doctor tells me.  I tried tapering off of it, but my body rebelled.  So I've stopped tapering until I don't have any more pain.  I do have itchy skin from it, but I manage.

    I hope it works as well for you as it did for me.

  • edsteve09

    Hi. I am 56 been taking actermra for. 6 months down to 1 mg predsone.   I am still stiff in the am. When I wake up for about 1 hr.   But I do believe. It’s working for me . I work 8 to 10 hr on my feet running around . I did cut the gym down to 3 days a week.  Going to the Cleveland clinic. Tue. To see a new doctor.   Maybe something new.  I keep you posted.  I was very scared to give my self a injection in the tummy.  Now I am a pro   After vacation. I will go off the 1 mg predsone.    Will see.   Mj

  • edsteve09

    Edsteve, I guess I am one of the the lucky ones. When on 30 mg of Prednisone I was going out of my mind with the side effects. But it did allow me to function. But on lower does, currently 7 tapering to 6.5, I feel no appreciable side effects. My Rheumy has approached me about trying some additional drugs to help with the tapering, but I have refused as long as the tapering is working. I figure with all of my medical issues I don't need another drug in the mix.

    So I stay active, positive and smiling. ☺️

  • edsteve09

    Hi edsteve09,

    I have GCA and PMR and take Actemra every two weeks as well as Prednisone. I had a very difficult time dropping below 24mg of Prednisone and my Doctor put me on the Actemra, once every two weeks. I have been on Actemra for a year now since last June and have no side effects that I know of. I am now on 7mg of Prednisone, I was lower but had a minor Flare and did not want to take any chances.

    Like MJHOLLYWOOD I also was "scared" of giving myself the first shot but don't have a problem now. I hope this helps with your decision and my prayers go with you.

  • edsteve09

    Hi there

    i have been on Actemra for 7 weeks....One SC injection every week.   I too was apprehensive about this medication but the side effects of prednisone are unbearable for me.   As I’m weaning from the prednisone, I have not had any flare ups but still at 8 mg.    I have not had any colds, infections....I’m a nurse, so exposed to a lot.   My plan is to continue injections and decrease prednisone by .5 mg per week.so far so good

    if you can get this drug and have insurance pay ....I would say go for it.

    good luck 

    nancy

  • edsteve09

    Hi, I have had PMR for about 3-4 years.  I have extreme joint pain in am/pm.  Stiffness in am, after sitting, at night.  I find it difficult to maneuver up stairs, etc.  I also have muscle pain in arms, Used to be more in my legs, but has moved to arms.  I was on Pred.  It was wonderful at first, then side effects, It took me about 14 months to get off.  Med's I'm taking now do not help.  I did research and came up with actermra, am thinking about trying it.  How are you doing with it?   I'm still waiting for remission.  I have a good day or good hours, get my hopes up and then it's back sad

     

    • gail39927

      Hi Gail.  Doing great off predsone and back at work after vacation    Actermra seems to working. Going to see doctor and ask when I can stop actermra   I would like to be off all of it!!!   I was scared of the shots. But very easy !!! Not that bad 

    • mjhollywood

      Thanks for your response,  How long have you had PMR,  I still am not sure about Actermra, because of possible side effect, I plan on bringing it up on my next doctor visit.  I have summers off, so it gives me a good time to rest till I go back to work in September.  I think if I could move again it would make me feel better, to be able to keep up with husband and grandkids! 

    • gail39927

      I'm not sure but I think so far they only use Actemra in conjunction with pred.  If you can afford it, or have insurance coverage, it's probably worth investigating.  

    • Anhaga

      Anhaga - I am wondering if the PMRUSA Yahoo group for Canadians and US folks with PMR is still in existance?  I am newly diagnosed with PMR here in Canada and wanting to connect with others from (preferably Canada) with the same condition.  I found an older post (3 years ago) with info that it has been set up, but when I searched for the group in Yahoo, nothing came up??

      Thank you.

    • PMRCanada

      PMRCanada, I am in the US and I have found this forum to be the best hands down. I have learned more information and had more assistance. I am very happy to found this forum.

      Good luck on your journey. ☺️

    • Michdonn

      Thanks for the warm welcome Michdonn.  I am connected with two other forums as well (Inspire and PMRGCAuk).

      Where abouts in the U.S. are you located?  Are you aware of any "face-to-face" support groups in the US for people who have PMR?  The forums I've found have been very helpful, however I also suspect that organic meetings with others who understand and live with this condition would be beneficial.

      Thanks again for your response, and good luck on your journey as well.

    • PMRCanada

      We tried to get it going but there just didn't seem to be the critical mass to make it work - it really does matter. We were not entirely happy about using Yahoo because you have to register with Yahoo - and that put a lot of people in the UK off. You need a few people who have been there and got the t-shirt plus one or two who have some scientific/medical/PMRGCA background. Perhaps unfortunately those are in the UK where there were 3 forums two of which are extremely active and those of us involved with them simply don't have enough hours in the day to do more even to help getting something going.

    • PMRCanada

      Yes - f2f is better in some ways but north America in general is so big and spread out it is difficult. And someone has to do the base work, nothing comes from nothing. One person has to try to make contact with others - even it is just one or two you have a small "group". An ad in a local paper or a poster in appropriate doctor's offices looking for contacts and an informal coffee club can "happen". That is how the UK groups started - and some have grown to be 40-50 strong.

    • PMRCanada

      PMRCANADA, I am in the northern mountains of New Mexico. Enjoyed Canada, while working out of Kanata. My mother was a Canadian so Canada has a soft spot in my heart.

      My journey has been going quite well after finding this forum. Stay active, positive and try to smile. ☺️

    • PMRCanada

      I stopped checking in ages ago.  There was hardly any activity and only a few people signed up.  On the two occasions I found people through the UK forums who lived near enough to me to perhaps form a nucleus they both vanished never to be heard from again, so the interest was obviously not there.  When I first started out I was desperate to be part of a group.  That need has been satisfied through communicating here and on Healthunlocked, but if a Canadian group were to successfully ignite I'd be happy to offer support.

    • gail39927

      Hi Gail.   I had to write.  I off actemra started to have blood in urine.  And feeling it in my lungs.  Been off two weeks. On only 2 mil predsone.   And feel great back at gym 5 days.   It was scary.  Seeing the blood.  !!dont understand maybe it worked.  But done with the stuff !!!!  Getting back on the plane. (Working ) I keep you updated.    ( Pmr 1 year ) mj

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