Newbie with Temporal Arteritis. New drug Tocilizumab (actrema)

Hi, I am new and have been reading a lot of good info an was so comforted when I read a post by another newbie who also has been in this battle alone. It has been 28 months and I just relapsed(Flared) I was down to 10mg now back to 35. I also relapsed Christmas Eve. My Rheumatologist wants me to go on Tocilizumab. I am very much afraid of a major side effect, tears in the stomach and bowel. Has anyone taken this drug?

[Hindags]

There are several people here who have taken Actemra. My impression is that there were few side effects. See what you get if you search for Actemra. I've never tried a search here. There was a recent discussion of Actemra.

[Tj2017]

Hi Lindanna,

I have taken 3 doses of the injection Actermra. So far I have had only a slight rash. I did a lot of research and found Actermra to have less side effects that methotrexate and more evidence to support the effectiveness of minimizing steroid use as well as accelerating remission. If you go to my posts, you will see an informational video I posted, which also contains some really good links from the folks who replied.

Good luck.

TJ

[Nitrobunny]

Hi!

I was able to tolerate tocilizumab for 9 months with amazing results before having a reaction. My previous posts go into the details but personally, if I had the choice to do it again I would.

Best ~

S

[PMRpro Ambassador]

If you look at the top of this page you will see a box with Search PMRGCAuk - click on that and write Actemra in it and a list of all the posts about it will come up and you can read to your heart's content.

[Buddyk]

Hi Lindanna, So excited to see another person with giant cell (temporal) arteritis ... Mine was diagnosed 15 months ago and I have only met one other person with it and I was the first person he had ever met and he had it 2 years. I started out on 60 mg of prednisone and every 2 weeks I dropped down 10 mg. And then towards end dropped down 5 mg every 2 weeks. Then I began actemra infusions once a month and rhumatologist thinks I will be on infusions the rest of my life. I have no headaches. The only thing I have is big time fatigue and lack of strength problem. I went to another rhumatologist for a 2nd opinion to be sure actemra was the route to go and she said " I would treat you the very same way you are being treated" .... so I am at peace about my treatment.

buddyk

[Hidden in reply to Buddyk]

I do not know anyone with TA .Now I do! I had a Flare on the weekend and did have to go to the Emergency only because I had new symptoms and did not want to guess the right dose.Well I was boosted to 35 from 10 but talked to my Rheumatologist this morning and he agreed with me that (new to me) the pain by my jaw/ear is not TA. So I am to go down to 15 for 4 weeks and I introduced the idea of a slower reduction. From reading here I can see how a half milligram makes a difference. I have been so tired and no motivation since my last relapse I gained 30 lbs! My personality has changed. I am afraid of actema and I do have reasons but I am trying to see the other side. Are you still on Prednisone or just infusions?

[Buddyk in reply to Hidden]

Im just on the infusions for a long time now. I cannot tell any difference when I do or do not have infusions. But dr says I would have a lot more symptoms if I was not having the actemra infusions." My neighbor is having the same infusion for rhomotoid arthritis. I am struggling with my weight also cause I have to rest sooo much. Been forcing myself to walk but barely make it back home. Stop many times to rest. And walk very slowly.. only other symptom I have for periods of times each day is a fuzziness in my head .

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Well here's another one who got through it and came out the other end, relatively unscathed - well not quite! Been off all meds for 11 months now, and feeling good!

[jeannette65]

Actema