How hard is it to get on Actemra (Tocilizumab) with PMR?

It is a huge problem with how our healthcare costs are paid for in the United States. Patients rightfully wish to receive the best possible treatment. The price tag for the best possible treatment doesn't guarantee the best possible outcome.

It is impossible to know what to do when you do a cost/benefit analysis.

From a patient's perspective, it is hard to comprehend the costs let alone if something will do any good or not before they try it. Doctors face the same dilemma.

That amount for Actemra sounds about right. I get an infusion every month and they charge an additional $1600 to administer it. I have been able to get totally off prednisone that I have been on for more than four years. I feel so much better. My doctor was able to get it totally paid for by Medicare and my supplement by saying I might also have seronegative RA. She is unsure about that though. However it got the insurances to pay. It is a wonder drug for me! I hope you can find a way to get it paid for.

I was wondering if seronegative RA would qualify someone to be treated with Actemra the same as a person who is seropositive for RA. Actemra is approved for RA and I don't think the FDA distinguishes between being seronegative or seropositive..

My rheumatologist says I have seronegative "inflammatory arthritis" so I wonder where that fits in. My type of inflammatory arthritis is called reactive arthritis (ReA).

I remember my staff rheumatologist was supervising a new resident doctor. The resident doctor reported to my staff rhematologist that I was a patient with RA. My staff rheumatologist jumped all over that and asked, "Who said it was RA?" in a rather emphatic way? It could have been me but I knew better. I tried to help the resident out and told my staff rheumatologist I had reactive arthritis or ReA!

Just lately, I noticed on my prescription for Actemra that it says to do one injection weekly for Reactive Arthritis when it has always said PMR in the past. I'm not too worried about what diagnosis Actemra is prescribed for so long as it works.

I was worried when I had to stop Actemra when supplies were low because of it being used for Covid patients. When supplies were improved I asked if Actemra needed to be re-approved. by the approval committee since it was stopped for about 6 months. I was told not to worry because the approval would never be undone. The only reason Actemra would be stopped was in the event of a side effect, infection, or if Actemra stopped working. My rheumatologist wasn't inclined to stop Actemra anytime soon.

P.S. How do you like doing monthly infusions. I have done both ways ... by injections first then I switched to a monthly infusion. Now I'm back using the injections again because they accidentally sent me a supply of injections when I was doing infusions. I offered to use up the injections so they would "not" be wasted. My rheumatologist said I could do either the injections or an infusion. I don't know what I will do when I run out of injections. I liked the infusions better.

I don’t think the FDA distinguishes between zero positive or negative RA. Either seems to be approved for Actemra. I don’t mind going once a month for the infusion. I am okay giving myself injections, but prefer one and done so I don’t have to think about it. I am just so grateful that after trying so many different drugs over more than four years that Actemra has put me into remission. I would hope it won’t be long before it is approved for PMR. Best wishes to you for better health!

How did you feel about PMR being treated with prednisone? I still struggle with that issue even though I was never against taking prednisone for PMR for about 10 of the 12 years I was being treated with it. I'm still not against prednisone but now I think Actemra should have been tried sooner. I can't change the past. My rheumatologist said Acterma wasn't an option until a few years ago.

My rheumatologist "encouraged" me to taper off prednisone and I tried many different medications too. I tried to taper off but there was no way I was going to let the pain get too severe. I think I "tolerated" more than enough pain most of the time.

Actemra wasn't offered until I told my rheumatologist in no uncertain terms that "I can't taper off and I wasn't going to try anymore." A few months later, Actemra was offered but it needed to be approved first. My rhematologist wanted to make sure I was willing to try it before he submitted the approval request.

A year later, I was off prednisone. It wasn't smooth sailing after Actemra was started. I was able to go from 10 mg to 3 mg in 4 months but I had to stay at 3 mg for about 6 months because of adrenal insufficiency. That was uncomfortable and I didn't feel well but the pain was controlled. My endocrinologist finally gave me the green light to go from 3 mg to zero in one step because my cortisol level was "adequate" I took 2 weeks to go from 3 mg to zero.

As soon as I got off prednisone the first time, I had a massive flare of uveitis and went right back on 60 mg of prednisone again. My ophthalmologist said Actemra wasn't going to work for uveitis and started me on Humira which needed more time to work. After about 2 months on Humira and 15 mg of prednisone, the pain crept back in. I couldn't reduce prednisone any lower than 15 mg.

Long story but my rheumatologist thought 4 months of Humira was enough time for it to work if it was going to work. I told my rheumatologist that I didn't think Humira was working like Actemra did. That was when Actemra was restarted except with weekly injections instead of every 2 weeks. I tapered prednisone from 15 mg to zero in 2 months the second time.

I hated being on prednisone! But, it was the only way to stop the pain and make myself somewhat functional. I gained 50 pounds, suffered gastritis, severe sweating episodes and other side effects. That went on for more than four years. I finally am off of it after a very slow taper. Only on Actemra now.

Same thing with me. My side effects from prednisone were awful but I got used to them. I had all of the things you mentioned.

I was reading stuff on another forum that said, "prednisone side effects can be managed if you know how." I was never sure how to manage my side effects but my doctors prescribed many additional medications for my blood pressure, cholesterol level, and intraocular eye pressures. Those things were asymptomatic so I wasn't even aware of those problems. I needed cataract surgery at an early age. As a tall, well built male, those bone scans were embarrassing because I didn't look like I would have osteoporosis.

I took prednisone for more than 12 years for PMR. The advice on the other forum was that I should taper slower and increase my dose whenever I had some pain. After Actemra was started, the other forum criticized my doctors for prescribing Actemra for PMR. I had no idea, Actemra would be controversial.

I have been completely off prednisone for a couple of years and only take Actemra to control my pain. I'm happy that my rheumatologist wanted to target my case of PMR with Actemra. I was able to taper off prednisone rather quickly.

I don't seem to have any side effects from Actemra. My prednisone side effects are improving now. Adrenal insufficiency isn't much of a concern anymore.

My rheumatologist said the way the body responds to prednisone is far more complicated than simply managing the symptoms of PMR. My having other autoimmune problems in addition to PMR, made it more complicated.

No medical professional has suggested I be tested for adrenal insufficiency. I am going to a new primary care provider next week and I will ask to be tested for it.
I feel pretty good on Actemra. My only complaint now is overwhelming fatigue. I have read it can be caused by adrenal insufficiency. However I have to wonder if it isn’t a consequence of long Covid. The Covid virus can reactivate the Epstein Barr virus 90% of us carry in a latent form. That deactivation can lead to Chronic Fatigue Syndrome.
Interesting you said you also suffered severe sweating episodes from prednisone? That was a horrible side effect for me. I was made to feel like I was crazy by most medical personnel to think it was the steroid causing that. Not that I am off prednisone that has drastically improved. Hmmmm…..

I have just returned from a Rheumatology visit with my doctor. He is recommending Kevzara because I have been unable to reduce my Prednisone dosage and seem to tamper and need to increase my dosage again due to pain. This has been occurring for the past 8.5 months. My daily pain is static at about 6.5 after my morning Prednisone and I am having to take pain relievers to get enough relief to move around more freely. I also have Degenerative Disc Disease and Fibromyalgia in addition to PMR so I am definitely looking for better control of my daily pain. I’m not sure if Kevzara will be approved because of the costs but I am praying that if it will help me they will approve it. My doctor indicates that he has several patients who are taking it for rheumatoid and they have been able to successfully get off of prednisone. That is my prayer! Thanks for the discussion thread and I will let you know if I make it through the approval process. I completed all the blood work and chest x-ray this morning so fingers crossed. Blessings!

The profuse sweating was a huge problem for me. I used to do some vigorous exercise so I could sweat when it was appropriate.

I was once on a walking tour and the weather was a perfect 70 degrees. I was drenched in sweat and I couldn't stop perspiring. I was so embarrassed by it that I stayed in the back of the group so nobody else would get wet.

I refrained from drinking any water hoping to purposely get dehydrated and I would stop sweating. I must have lost gallons of fluid but still the sweating wouldn't stop. It wasn't like it was hot weather or anything. I was just strolling along on a walking tour. I didn't understand why nobody else was sweating.

These kinds of episodes would only happen occasionally but often enough to cause me some distress. I never knew when these episodes might happen. I never told my doctors thinking they would laugh about it.

Yes, those episodes have stopped happening since I have been off prednisone.

The overwhelming fatigue is a symptom of adrenal insufficiency. I would get so exhausted by a simple shower. Being that exhausted isn't such a good thing when one is sweating profusely.