I am on ACTEMRA for my giant Cell Arteritis but it seems like my PMR ?

I had a great response from Actemra. My first dose was on January 1st, 2019. It changed everything for me after 12 years on Prednisone. I have been completely off Prednisone for nearly 4 years.

The thing to remember is ---compared to Prednisone, Actemra doesn't relieve the pain instantly. It took 3 months for me to notice a difference. My pain didn't seem any less but I was able to taper from 10 mg of Prednisone to 7 mg in 3 months. That seemed odd to me because 7 mg was the dose where I usually had a flare. I got impatient and wanted to get the "inevitable flare" over with so I tapered by 1 mg per week for 4 weeks. I was in uncharted territory on 3 mg of prednisone so I called my rheumatologist for some guidance.

I was having familiar symptoms of extreme fatigue and generalized aches and pain but my symptoms weren't anything like my original PMR symptoms. When I described my symptoms to my rheumatologist, he said my symptoms sounded more like adrenal insufficiency. My cortisol level was checked and indeed my cortisol level was low. I was told in no uncertain terms that I should not taper any lower than 3 mg until I saw an endocrinologist.

Long story short --- I had to stay on 3 mg of Prednisone for another 6 months for my cortisol level to improved. I stayed on Actemra the entire time and never had a flare.

When an endocrinologist said my cortisol level was "adequate," I was told it would be safe to discontinue Prednisone. She said there was no need to taper from 3 mg to zero since my cortisol level was adequate. I did a fast taper anyway over a week or two. After a year on Actemra, I was confident it was working and "believed" that I wouldn't have a flare.

It took me the better part of one year to get off prednisone the first time after Actemra was started. You can't simply switch from Prednisone to Actemra and expect your symptoms to go away the same as when we take Prednisone.

Depending on how long you have been on Prednisone it can still be a long process to get off prednisone. The time it takes might be related to both adrenal insufficiency and PMR/GCA symptoms. Plus ... Actemra doesn't come with any guarantees it will work for everyone.

Thanks for your response. I have been on prednisone for 3 years. My last dose was 5mg but each time I reached that level I had a flare up and needed to go back to 10 mg. That’s the reason I wanted to give ACTEMRA a go.
I have been on ACTEMRA for 3 months and gradually tapered my prednisone to zero as of two days ago.
For the last 4 days I have had severe itching all over my body but especially my scalp and a flare up of my psoriasis on my scalp. My bones are hurting and I have a hard time walking. I am not sleeping well mainly because of the itching. I definitely feel worse than when I was on prednisone. I think that I may have an allergic reaction to ACTEMRA and at this point I feel that if I have to stay on ( mg prednisone I might be better off?

It is interesting that you had a flare of psoriasis after stopping Prednisone. Has anyone ever discussed the possibility of multiple autoimmune conditions?

One reason I said "long story short" was because I had a flare of uveitis as soon as I tapered off Prednisone the first time while I was on Actemra. Uveitis is another autoimmune condition I have. It is "associated" with Reactive Arthritis (ReA) but not with PMR.

Psoriatic arthritis (PsA) and reactive arthritis (ReA) are different types of inflammatory arthritis. PsA is a condition associated with the skin disease psoriasis while ReA occurs in response to an infection.

Has anyone discussed the possibility that you might have psoriatic arthritis? I'm not saying you don't have PMR/GCA because there is no reason why you can't have both PMR/GCA and Psoriatic Arthritis.

The long story that I didn't want to get into was that I needed 60 mg of prednisone to control the flare of uveitis I had as soon as I tapered off prednisone the first time. Uveitis can cause vision loss and is treated as a medical emergency just like GCA.
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/uveitis#:~:text=What%20is%20uveitis%3F,healthy%20tissue%20in%20your%20eyes.
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My rheumatologist stopped Actemra because my opthalmologist wanted me on a different biologic instead of Actemra. My ophthalmologist started me on Humira which was "optimal treatment" for uveitis.

After uveitis was in remission, I was stuck on 15 mg of Prednisone again along with Humira because PMR flared up again. When you have multiple autoimmune conditions my rheumatologist said it becomes extremely difficult to "optimally treat" everything.

My rheumatologist said Actemra works for PMR and Humira works to prevent uveitis flares but I couldn't take both Actemra and Humira. He gave me the option of Actemra or Humira. I chose Actemra and tapered off prednisone in 3 months the second time.

Last time I lowered my prednisone too fast I got severe itching I had to go back to a higher dose and do a slow taper. I am now tapering at 1/2 per month. It may not be the actemra just too fast going off the prednisone

Did anyone tell you it was a Prednisone withdrawal symptom. I don't know if it is or not so I'm just asking.

@jenbillig
As you suspect .... it could be an allergy to Actemra too. I get a dose of Benadryl and Tylenol before every infusion of Actemra. I have never had an allergic reaction to Actemra. The reason they give me these medications prior to my infulsion is to prevent an allergic reaction.

I have heard that calcium citrate lotion helps with itching.

You may have a point. This morning I decided to go back on 5mg of prednisone. We shall see.

I have both PMR and Giant Cell Arteritis. Have been on Prednisone for 3 years and switched 3 months ago to ACTEMRA while still taking low doses if prednisone and slowly weaning myself off the Prednisone. Last Monday was my first day without any prednisone and I started a severe scalp and body bitch and severe knees, legs and shoulders bone pains. Yesterday I once again took 5 mg of Prednisone and things seem to slowly improve?? Am truly puzzled and disappointed.

I meant ITCH 😂

Did the itching begin after prednisone was stopped? I’m beginning to think it is a prednisone withdrawal symptom unless the itching started soon after Actemra was started.

I suppose prednisone could mask an allergic reaction to Actemra … hard to know.