I'm wondering about the side effects of Actemra in this group

Posted , 8 users are following.

I have GCA, diagnosed August, 2017.  I began at 60 mg. Prednisone and have been able to taper down to 20 without any problems.   However, in Dec. I developed a compression fracture in my spine (I had previously been diagnosed with osteoporosis five years ago), so my rheumy wants me to be able to get off the prednisone as soon as possible with the addition of Actemra.

    I know that a few people here have used this drug but it scares me to death if one reads the side effects.    Can someone who has used Actemra relate their experiences with it and if you had any serious side effects,  And did it actually help you get off Prednisone sooner.

    She thinks I am really at risk for another fracture if I don't take it.   The problem is that I have to begin taking Forteo soon for the osteoporosis and I don't know if I want to combine these two drugs.   

    I appreciate any help or advice.  

1 like, 13 replies

13 Replies

  • Posted

    I turned down Actemra the first time after reading about the side effects. Finally decided to take it after being unable to get below about 12.5 mg despite doing the dead slow method. Also, it appeared that prednisone was adversely affecting my muscles, including my heart. I'm going for my fifth infusion tomorrow and so far, so good. My inflammation markers, including cardiac, are now on the low end of normal after being very high for almost two years. I still have shoulder pain, but have other shoulder issues - OA, rotator cuff etc. I've been able to get down to 7 mg and will be trying for 6 tomorrow. This is important to me because I need some surgery and the surgeon wouldn't even talk to me until I was under 7. I've gained weight, as reported here by other Actemra people. So far (knock on wood) I haven't gotten sick. I do cheat and take vitamin C when I think I've been exposed (my rheumatologist told me that's counter-productive). Hope all goes well with you. Don't know anything about combining with Forteo though.

    • Posted

      Thanks Susan and Eileen,

      Susan,   

         When you say "I do cheat and take Vit. C when I think I've been exposed", do you mean exposed to viruses or infections?    I wouldn't think taking Vit. C would be counterproductive to taking Actemra.  Vitamin C has only been helpful to me.  

         Also, I notice you do the infusion, but my rheumy said I need to do the self-injections at home.   I am 66 and don't know if the difference is because of my age.   

       

      thanks,

      Pam

    • Posted

      Apparently some insurances will only reimburse the infusions done in a hospital. For GCA the recommendation is for the self-administered weekly injections.
    • Posted

      Yes, when I feel vulnerable to contagious diseases. My rheumatologist says we're trying to tear down my immune system, not support it, so taking C is counter-productive. To me, that's counter-intuitive, and I notice my primary md seemed puzzled when I mentioned it. I live in the U.S., and we're having a major flu epidemic, and I don't want to get that (also don't want the flu shot).

      I do infusions, probably because my insurance covers them. I notice Medicare gets billed about $5k a month plus another $700 or so for inserting the needle.Don't know what they actually pay out. Shameful. I don't think it's an age thing - I'm 71.

    • Posted

      I feel the expression "to tear down the immune system" is very misleading and has all sorts of unfortunate connotations.  What we are trying to do is control our immune system so it doesn't attack our own tissues, not disable it altogether.  Whether Vitamin C is going to help or not is another question but I can't imagine it can harm you.

    • Posted

      Vit C can have negative effects on cancer patients.  My late husband was instructed not to take C during chemo/radiation.
    • Posted

      Fair enough, but I was talking about autoimmune disease, not cancer.  
    • Posted

      Sorry, I cannot remember the reason, but it could also apply to autoimmune diseases.
    • Posted

      Well, the articles which seem to indicate that Vitamin C is actually helpful for autoimmune disease are only available as abstracts and I don't understand the medical language.  But I didn't find anything (admittedly not a very intensive search) which indicated that Vitamin C was harmful.  

      Supplemental Vitamin C during chemotherapy is not recommended because it blunts the effect of the chemo by mopping up the free radicals which are supposed to be targeting cancer cells.  According to article in WebMD.

    • Posted

      Thanks Anhaga.  I too looked it up.  I just wanted to make sure that C was ok.
    • Posted

      There is a considerable amount of work that suggests that too much of any of the substances that have been said to reduce oxidative stress - vit C and vit E amongst them - can be harmful. The body NEEDS some oxidative stress as a protective measure so that cell breakdown still exists where required. However, studies have shown that very high doses do potentially have beneficial effects in vascular disorders. BUT, this is from a report about work done in Cardiff:

      "There's a catch, of course. If you're thinking of dosing up on vitamin C in a bid to protect your arteries, you should be aware that large clinical trials have found vitamin C supplements to be completely ineffective at preventing cardiovascular disease.

      "Taking vitamin C orally probably can't achieve the high blood concentrations necessary to have these beneficial effects on arteries because it quickly gets filtered out by the kidneys," Prof Griffith said."

      Vit C is water-soluble - when you take large doses orally, you pee it straight out down the loo. 

  • Posted

    There are some people on this forum on Actemra - but there are a lot on the HealthUnlocked PMRGCAUK forum who have written a lot of threads about their experiences with it.

    Actemra may not get you totally off pred but it certainly seems to allow people to get to much lower doses quite quickly as was found in the clinical trials. If you have been on high dose pred for long an extra limiting factor getting entirely off pred is the return of adrenal function which has to happen once you get down to about 7mg.

    It has potential side effects like any drug, even the ones you can buy OTC like tylenol/paracetamol. You wouldn't take them either if you read the small print!

    Actemra has been used in RA for several years at similar doses - so you might get more info on the RA forum here.

     

  • Posted

    Hi Pam,

    I have GCA/PMR and take Actemra/Tocilizumab since June of 2016. I have been giving myself the injections once every two weeks and have not had a problem or side effects yet. It has helped me reduce my Prednisone and am now on 10mg. I would get a flare whenever I dropped down from about 20mg, I started at 60mg. So far I have not had any problems. I hope this helps.

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