Just Started Actemra

I have been on it Actemra for4 months. It has helped. No side effects. Theresa

I have been on Actemra for about 6 months IV. No problem. It helps. Theresa

I started with Actemra injections 5 years ago and was later switched to infusions. I prefer the monthly infusion but the injections probably worked equally as well. I have done Actemra infusions for the last 2 years. My rheumatologist controls my infusion dose but it is a lower dose than when I first started. I have gone longer than 4 weeks between infusions but my inflammation markers "gradually increase" and I have "subtle increases" in my pain level. I haven't experienced any complete relapse or a sudden flare of PMR since being on Actemra. PMR and some other autoimmune disorders are all well controlled.

I don't seem to have any side effects that I can attribute to Actemra. Relative to my 13 years on Prednisone, my overall health has dramatically improved. I have discontinued Prednisone and many additional medications that were treating Prednisone side effects.

I still see an endocrinologist who originally treated me for prednisone induced adrenal insufficiency. He says my hormone imbalances and metabolic syndrome are improving. Diet and exercise and staying off Prednisone is the treatment. My endocrinologist mostly encourages me to keep doing what I'm doing with diet and exercise.

Thank. Very helpful.

Thank you. My first infusion is 1/13. I’m a bit nervous. Do u feel nauseous after it or anything else?

After the IV is inserted, I don't feel anything during the infusion. The infusion itself is only an hour. When all goes well .. it usually takes less than 2 hours to check in, get the IV placed, do labs if needed, and receive the medication from the pharmacy and then it is infused over 1 hour.

They give me 2 Tylenol tablets and 25 mg of Benadryl as a pre-medication for possible allergic reactions. Benedryl makes me sleepy so I usually take a nap until the infusion is done. I don't have any reactions from the infusion. I'm a bit tired after the infusion but that is because of the benadryl.

Thank you so very much for sharing that. It honestly made me feel better about something I know nothing about. Thank you again and Happy Holidays.

Nothing. All is well. But I have someone drive me just in case. Thetess

Don't expect immediate pain relief like when prednisone takes effect. You might not have any decrease in pain after the first or second infusion or at least I didn't feel any different. I didn't think Actemra was working until I was able to taper my prednisone dose lower without having a flare.

My rheumatologist would have been pleased if Actemra only allowed me to reduce my Prednisone dose down to 3 mg. It took me nearly a year but I exceeded expectations and tapered off Prednisone completely.

I had prednisone induced adrenal insufficiency so an endocrinologist was consulted. It took a long time but eventually my cortisol level improved. The endocrinologist wasn't very optimistic that I would be able to get completely off Prednisone so she was also pleased.
https://www.endocrine.org/clinical-practice-guidelines/glucocorticoid-induced-adrenal-insufficiency
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I took Prednisone to treat PMR for nearly 13 years so adrenal insufficiency was expected. What was unexpected was that my cortisol level improved and I didn't need Prednisone for the rest of my life.

I have now been completely off prednisone for more than 3 years. My symptoms of adrenal insufficiency were similar to PMR symptoms with overwhelming fatigue tossed in. I also had dizziness and "black out spells" but I didn't actually pass out or faint. Prednisone caused me to have high blood pressure and I was on 3 blood pressure medications. After I got off Prednisone, all my blood pressure medications were stopped one by one because of a low blood pressure. Now I'm off all 3 of my blood pressure medications in addition to being off prednisone.

Taking Prednisone for as long as I did caused problems for me. I sincerely hope Actemra works for you! Actemra doesn't work for everyone but it certainly has changed my life for the better.

People say prednisone is a miracle. For me, being able to taper off Prednisone after such a long time was my miracle.

Thank you.