I'm not Therese but I currently do Actemra infusions. I actually started out doing Actemra injections every 2 weeks to "play it safe" according to my rheumatologist. Actemra injections every 2 weeks worked well. I was able to taper off prednisone but it took me a year. Unfortunately, I had a relapse and I needed to go back on 60 mg of prednisone and Actemra was stopped.
Relapses can occur on Actemra. I was disappointed about being on 60 mg of prednisone again. However, the fact that I was able to get off Prednisone temporarily was remarkable.
I wanted to give Actemra another try so my rheumatologist suggested I increase the frequency of Actemra injections to weekly. It took 3 months for me to taper off Prednisone the second time. I went from 30 mg to zero without any difficulty.
Weekly Actemra injections worked extremely well . No relapse occurred the second time I tapered off prednisone. I was able to stay off Prednisone for 2 years while doing weekly injections.
The reason I was switched to infusions was to facilitate surgery on my lumbar spine. An MRI showed a synovial cyst had formed. The surgeon said I couldn't do Actemra injections for a month before surgery and a month after surgery --- 2 months without an Actemra injection seemed impossible.
The idea was for me to switch to a monthly infusion where the dose could be adjusted by my rheumatologist. The injections are a "fixed dose" but the infusion dose could be adjusted upward to the maximum safe dose based on a person's weight. Perhaps with a bigger infusion dose, I could go 2 months between infusions. For me to go 2 months between Actemra infusions was the goal anyhow.
I wasn't able to go 2 months between Actemra infusions. Pain wasn't the reason and I didn't have a relapse. However, my inflammation markers crept up the longer I went between infusions. I was able to go 7 weeks between infusions but my rheumatologist didn't want to "press my luck." I went back to doing a monthly Actemra infusion. My rheumatologist asked me if I wanted to go back to weekly injections since surgery wasn't going to happen.
The interesting thing was that the synovial cyst that was causing a problem disappeared while I did Actemra infusions. The surgeon thought my surgery could be "postponed" since the synovial cyst disappeared.
Spinal synovial cysts are sometimes caused by ongoing inflammation and wear and tear to the joints of the spine due to degenerative diseases like osteoarthritis,. The speculation was that Actemra infusions might have helped this type of inflammation and possibly caused the synovial cyst to disappear. I stayed on monthly Actemra infusions. So far the synovial cyst hasn't recurred and I haven't needed spine surgery.
I don't have any side effects from Actemra so my rheumatologist said I could continue doing Actemra infusions.
Thank you Dad. Sorry it went to Therese.
This is all quite interesting. I've had a kidney cyst rupture, a cyst in my nose rupture and bleed plus bruising under an eye. This was NOT while Actemra but Methotrexate, then Kevzara. Perhaps the Actemra did calm the spinal cyst. I'm to start it this week as I'm quite sure I have GCA , terrible jaw pain, vision issues and headaches. Thank you so much for the explanation !!
This site is a godsend. It sounds like you have a keeper for a rheumatologist. That is half the battle. I assume you had GCA also? There is no way I can do 40-60 mg prednisone again, gain another 35 pounds, have sleepless nights, tachycardia and irritability. At least the election is over..haha. Think I mentioned having a second round of Covid in June too. Yours is a remarkable story indeed.
Thank you again for your time. We are in this together and knowledge is power. After 8 years of this, I'm hoping to learn more, protect my body and live the best I can.
Will know more this Wednesday.
Karo88135