Actemra experience

[beringer]

Actemra worked wonders on My GCA PMR, But did damage to My poor body. I was sick the entire winter with lung infections all brought on by the infusion , Then got a very bad case of Diverticulitis with a massive abscess on the bowel, so with that My Dr stopped all infusions. I’ve only had 2 flare ups in this past year tho. Hope this is if some help, I would NOT recommend it to anyone.. Betty Snell...

[PMRpro Ambassador]

Thank you for that Betty. I'm so sorry you have had such a bad experience but I suspect you are not alone, even on this forum. I know of at least 2 other ladies who have had bad experiences. Which given the size of the community is a fairish rate ...

[beringer]

I’d love to see others notes about Actemra.. Please forward if possible. Thank You.

[PMRpro Ambassador in reply to beringer]

If you use the search facility for Actemra and restrict it to PMRGCAuk you will get a lot of posts about its use. But I can't look through them for you!!! Maybe they will see your post.

[SheffieldJane]

So sorry Betty. Thank you for sharing. X

[Nitrobunny]

Actemra was amazing and helped me go from a large GCA dose down to a much smaller dose that I am still weaning from. I also had a very bad reaction to it after being on it for nine months but it was worth it to gain such a huge jump on weaning. I know of other people in my practice who had to stop it as well but the majority of the people I’ve met that take it, have mild to moderate side effects, mostly complaining of fatigue after infusion/injection and weight gain. Aside from needing a three day nap after a dose, I really had no complaints until my bad reaction. My rheumatologist was very diligent in looking for GI issues while I was taking it.

[Dream21]

I am so sorry it did not work for you. Actemra has been great for me. No infections for 2 years or bad blood work. For me, I went from 30 mg Prednisone to 2mg. I get the flu vaccine, pneumonia vaccine, and Zoster vaccine.

[Cally55]

How awful, a bowel abscess is nasty, I had one some years ago which led to a fistula and then a colectomy, also a result of diverticulitis. Lurking out on the internet is a small study that showed very poor outcomes for people treated with Actemra who had pre-existing diverticulitis. At one point my consultant suggested Actemra only to backtrack for no obvious reason, presumably she had gone away and done her homework!

I am now taking azathioprine as a steroid sparer which did indeed allow for a much quicker taper of prednisolone but like you hasn't done my body much good, 2 bad goes of flu last winter. During a coughing fit I fractured another vertebra.

I am still taking azathioprine as I have osteoporosis and prednisolone is not good for it, I haven't caught anything this summer, I have a flu jab booked for mid october.

It seems that the steroid sparer is a mixed blessing, undoubtedly it has speeded up my taper and made it smoother but at a cost.

[PMRpro Ambassador in reply to Cally55]

I would have to be convinced that azathioprine plus pred was any preferable to pred plus a bisphosphonate.

[Cally55 in reply to PMRpro]

I have found that the azathioprine smooths the way when reducing, if I get the rate of reduction right I don't get the knackered feeling from reducing pred!

However there may be something else at work, at a different hospital I had a gastrocopy because reflux was getting a bit much, it didn't show anything untoward but the consultant has arranged 2 CT scans of abdomen because he isn't convinced that my osteoporosis is entirely caused by pred. If only the first hospital has done a DEXA to start with it would have saved a lot of time and money! As you keep telling people insist on a DEXA before taking bisphonates !!

[PMRpro Ambassador in reply to Cally55]

Wouldn't it just! Are you on a PPI too then? They are probably even worse for osteoporosis than pred. Not innocents when it comes to g/i problems either!

[Jackoh]

So sorry to hear your experiences Betty. Thank you for taking the time to share.

[christine2715]

I Have been on Actemra for two years and 3 months with no ill effects and it has been wonderful for me. I did get shingles but then many people get shingles once over 60. I dont know what age people were when they got the problems they got but of course one often experiences illness as you get older. Their may be no correlation although I have heard diverticulosis can be a side effect.

[enan-illuc]

Beringer,

I have been on Actemra for over two years and no problems yet. It allowed me to drop my Prednisone faster and I am now on 1.5mg. I am watching out for side effects and my Rheumy does the blood tests for liver and such, but so far, so good!