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Trying To get Answers About GCA
Autoimmune Diseases | Last Active: 1 day ago | Replies (8)Comment receiving replies
@jeff97 I want to thank you from the bottom of my heart for your response. Your message has given me more useable and valuable information in the short time that it took you to write it than I have gotten in the entire ten months that I have been dealing with this. Thank you, Thank you, THANK YOU!!!!!
As to your question as to why my Doctor is not advocating for Actemra I can only speculate but I suspect that perhaps he does not have as strong of or the type of "relationship" that he may have with the manufacturer of Actemra as he has with the manufacturer of Methotrexate. I worked for Baxter Healthcare 30 years ago and we gave huge perks to providers that we had strong "relationships with ands in this instance "relationship is spelled "profits". I'm not meaning to be snarky, it's the way of the world.
I also believe that I am his first patient who is dealing with GCA induced vision loss. He has been very cautious in his approaches to treatment for me. I believe this is one reason and maybe the main one why his Prednisone tablet dosages for me have been so low. From all i am seeing for GCA and vison loss 20Mg a day is a very low dose. At one point me had me down to 10Mg a day. We found out in very short order that that was just not working and doing more harm than good so he upped it to 20Mg per day and I have been there for a while.
Another possible factor is that I believe my Doctor is trying to reduce or manage possible side effects. My research is indicating that Actemra has in some cases greater, more, and worse side effects than Methotrexate does. I will be talking with him tomorrow about Actemra. Again, thank you. I will keep you and this group advised.
Replies to "@jeff97 I want to thank you from the bottom of my heart for your response. Your..."
@alandy233
& re: Jeff.
I also have PMR/GCA.
My rheumatologist put me on 60 mg of prednisone immediately over the course of a year. I was taper down to 8 mg very slowly.
During that year I was also placed on Actemra once a month Infusion. Fortunately, the Actemra worked very well for me. My vision is good. I’ve had to have it checked by ophthalmologist as well as optometrist every three months until I was deemed in remission and now it’s every six months.
For just over 2 years this was a good solution. Unfortunately I had an unrelated situation where I ended up with a large wound on my leg. I also have a bleeding disorder, we couldn’t get the wound to close or heal so I had to come off my meds ( Actemra and some others) for awhile. After about 3 months they started me on methotrexate. At that point I was in such pain I didn’t care about side effects or GCA possibly coming back - it did not.
I’d been on the methotrexate for just over 6 months now. I’ve had some difficulty with side effects. If it was my only option, it’s better than the pain and not having vision. However I’m still not convinced it is the correct answer for GCA. & PMR. Certainly not for me. And my SED rate and inflammation bears that out.
So my rheumatologist and I have agreed that I am going back on Actemra next week! I’m very happy about it. I really look forward to a better quality of life.
Thank you Jeff for all your input and I wish you well. But alandy233 I really really would feel so much better if you could see a rheumatologist much sooner than March. If you can call around to a couple of them or if your PCP can, whoever does, it must tell them that you have a diagnosis of GCA somebody should get you in immediately that is an overnight diagnosis must be seen kind of thing. It’s terribly important. I wish you great success, and all good things.
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@alandy233
I think that you're correct about your previous doses of prednisone being too low to control the GCA. I was started at 60 mg, and stayed there for 6 weeks. After that I tapered 5 mg every 2 weeks until I got down to 20. I have read that some people even start at 80.
In regard to the side effects of Actemra, I have been taking weekly injections for a year and a half, and I haven't had any side effects. I had a little extra fatigue after the first few shots, but that was all.
If you do start taking Actemra, you will still need to slowly taper off of prednisone. It can take Actemra up to 3 months to reach full effect, so you need a relatively high dose of prednisone during that time to control the GCA. It took me a year to taper off of prednisone once I started taking Actemra. With your vision problems, you might need to taper more slowly than that.
Also, Actemra doesn't work completely for some people. Actemra works by blocking IL-6, one of the main inflammatory substances in the body. If your GCA is mainly caused by IL-6, then Actemra is very effective. It has worked very well for me. I haven't had any symptoms or flares since I first started treatment. But if your GCA is caused by IL-6 plus other inflammation, then you will need to keep taking a small dose of prednisone (approximately 7 mg or less) along with the Actemra after you taper. You won't know how effective Actemra will be until you try it.
One more thing - you can take Actemra by weekly or biweekly injections, or through monthly infusions. Both methods are effective, so the choice of which one to use would depend on your circumstances, such as type of insurance and finances.
Good luck with your treatment! And do keep us advised.