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PMR, Actemra

Posted , 8 users are following.

kathy67492
kathy67492

I have had PMR for almost 3-1/2 years, now at 8m. Feel good on the 8m.Saw my rheumatoid today and he is ready to give me the Actemra, but, coincidentally, I have had a snafu in my insurance coverage (USA)!

However, as I figure out if I will be able to have this drug I would love to hear from anyone that has had success with it....and, how long before you are off the Actemra?...or do you keep taking it? I am always enthused in the doctor's office, then get home and read about the side effects, then I am not so sure.

Any comments welcome!

0 likes, 18 replies

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  • mark9992
    mark9992 kathy67492

    Posted

    Hi Kathy,  I just spoke to my Rheumy about Actemra.  He was decidedly negative about it.  In the US its not legal to use it for PMR, atlhough I thought I heard that it had been approved for GCA.  As others have pointed out its VERY pricey, and from my Rheumy's point of view I'd have to stay on it forever at a prohibitive cost.  That's not what I've read about results of those in PMR testing, limited though it has been.  Many have gone into remission between 4 and 6 months of the treatement.  However, when I say many, I mean a good per centage of the few its been studied on. Anyway, its a moot point.  For me, I'm finally down to 5mg a day which means my body can start producing Nitric Oxide again, so would I take my shot now if I could?  I'd have to seriously consider it, but now that I'm well down in my dose with a reasonable chance of getting off completely in a year or two...ugh...I'm leaning toward not.  That decision is entirely in my head though.  I can't get the stuff.

  • calimushka
    calimushka kathy67492

    Posted

    Hi Kathy - 

    I just joined this site so by this point in time you may have already been given Actemra.  

    I was able to get 6 cycles of Actemra approved by my insurance (USA - Stanford in California).  Prior to Actemra therapy I had one year of Prednisone 20mg then added 25mg MTX weekly to the mix.  While CRP and ESR levels normalized, I still had significant muscle pain and fatigue.  My rheumatologist offered Actemra and as soon as it was approved by my insurance I began getting the once/monthly infusions.

    Following the very first cycle, I felt like my former spunky healthy self prior to the PMR diagnosis.  It felt miraculous.  I did not have any side effects at all.  I should mention that prior to starting Actemra I had tapered off of Prednisone completely and discontinued the MTX.  So I received Actemra as my only med for the PMR.

    I completed the 6 cycles and was worried about the PMR relapsing.  I was sailing along back in the gym and loving life when three months later I started getting the fatigue and muscle pain again. Very disappointing.

    I'm not eligible to receive more Actemra therapy because it is not FDA approved for use in PMR.  I started taking MTX again and while it is managing my PMR symptoms, I still feel the PMR every time I move. Bummed.  But at least I'm working and socializing still. 

    I hope you get the chance to receive Actemra and achieve a lasting remission.

    Best of luck,

    C

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