Is anybody on Actemra? And is it working without prednisone?

I don't know of many on this forum - but there have been quite a few on the HealthUnlocked forum who have done well. It doesn't start as an either/or though, you usually can reduce the pred quite quickly down to 10mg although you have to slow down from there as the limitation is then the adrenal function. They don't yet know how Actemra alone will work long term or how long remission will last.

And it does also depend on it being IL-6 that is causing the inflammation. If it is another substance that is involved it won't work as well - the biologics are very specific to a pathway.

This isn't direct response to Debbie, but I want to report on a recent experience that was surprisingly positive. I am ,with PMR for about six years (from age 72)- starting first with GCA- down to 2- 2 1/2 mg of pred per 24hours, taken usually about 03:00. That seems to keep matters under control. but most mornings I have quite a bit of pain- shoulders, hands, especially with occasional leg cramps. I was also suffering from a mild asthma - or allergy attack, and took an over the counter remedy before I went to bed. That managed my allergy, but I also didn't have my usual PMR pains the next morning. I note that the product has 500mg of acetaminophen (a pain killer) and an antihistamine-Chlorpheniramine Maleate 2mg, plus a nasal decongestant, per caplet- the standard adult dose is 1 or 2 caplets, max 8 per day. The pain didn't return that day, and even though I stopped taking the product, it hasn't returned completely since. I did have a wobbly period midday, which is more or less standard for me at almost any level of pred- I started at 60mg daily due to the GCA, but reduced that quickly a few months later and have followed the very slow reduction plan recommended on his forum ever since.

I don't know which of the ingredients helped me the most. Might it be the antihistamine? I might experiment with an even stronger dose in a different product- I keep it (also over the counter) handy in case of wasp stings. Not infrequent where we live. I wet the caplet with my tongue, rub it on the sting and swallow the rest- works well for that . Usually normal pain killers by themselves don't do much for my PMR related pains .I don't know anything about Actemra.

I have been on Actemra for 8 weeks and so far it is working very well for me. It stopped my GCA flare without using high dose Prednisone and I am not having any obvious side effects except an increase in LDL cholesterol at this point. I have tapered 1.5 mg of Pred so far and my symptoms are still under control. My Rheumatologist doesn't want my to taper faster than 1 mg a month so I don't know if I will be able to get off of Pred but that is my goal!

Hello, I have RA and The only thing I know about Actemra is that when my biologic I was on failed the doctor wanted to put me on Actemra and she had me do a cholestrol test. I was not to eat for 24 hrs. and then do the test. It turned out that my bad cholestrol was high and she would not put me on it. It seems that I had read something about cholestrol and Actemra.

I have been on actemra for 34 weeks, and am still taking it. I will be tappering off pred by the end of the year.

will see my dr then and see if she wants me to continue on the ACTEMRA. I have had GCA and PMR for 5 years. I have not had a flair for a year but was on on 5 mg pred daily before I started on ACTERMRA which I take weekly via self administered subcutaneous injection by actpen.

Read the literature on ACTERMA before you decide to take it.

Thank you all for your experiences.