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Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA
I was diagnosed with PMR in 2007 which was in addition to reactive arthritis with recurring uveitis which was diagnosed in the early 1990's. I have taken prednisone daily since PMR was diagnosed. My average prednisone dose over the years was probably 25 mg daily and never less than 10 mg without having a severe flare. I have tried several DMARDs as steroid sparing agents but none of them worked well. I had given up hope that I would ever taper off prednisone.
Twelve years of prednisone has taken a toll and my rheumatologist would say my medical history is "complicated". With that in mind, my rheumatologist asked if I would be willing to try Actemra (Tocilizumab) which I started January 1st, 2019. The past two years have been even more complicated but I was prednisone free for most of 2020.
I would say PMR is in remission however I do have arthritic pain which I guess is due to reactive arthritis and aging. I also experienced a flare of uveitis which had been dormant during my PMR years when I was taking prednisone daily. My ophthalmologist prescribed Humira because she thought it would be a better biologic for uveitis. Actemra worked better for for the chronic pain I associate with PMR so I opted to go back on Actemra.
Has anyone else tried Actemra for PMR? It is only FDA approved for GCA.
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"The most common adverse reactions (incidence of at least 5%): upper respiratory tract infections, nasopharyngitis, headache, hypertension, increased ALT, injection site reactions. "
My ALT is elevated but it isn't clear what is causing that. I was evaluated in the liver clinic to see if Actemra should be stopped. The liver clinic doctor wasn't concerned at all. She said a fatty liver from long term prednisone use has likely caused some liver impairment but not enough to worry about.
Serious infections are possible while taking Actemra. I haven't had any serious infections ... not even Covid.
I can't identify any side effects that I would attribute to Actemra only. I have been on injections and infusions for more than 4 years. Actemra allowed me to taper off prednisone. My side effects from long term prednisone use were numerous.
My rheumatologist thinks I'm better off being on Actemra. There are monitoring labs that should be done routinely. I was also screened for diverticulitis and latent TB before starting Actemra.
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3 ReactionsI was diagnosed with PMR in May. Started on 12 mgs of Medrol. Started Actemra in July. Have my second infusion next week. Still taking Medrol. The pain is significantly better but I don't know if it is from the Medrol or the Actemra. I had no side effects from the infusion. Dr. said it starts to work around month 3 and they would start tapering me off of the Medrol.
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2 ReactionsMy Drs. office got the approval for me. I have no copay. I am on medicare.
Do you have any idea how long you will be on the actemra?
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1 ReactionThe Dr. said at least a year. I was in pain for so long. My PCP kept saying it was just a part of aging so I took things into my own hands and made an appointment with a very reputable rheumatologist in my area and that was the first thing out of his mouth. Oh you have PMR. Never heard of it. Of course they did all the blood tests and xrays. I am definitly feeling much better. Blood test are getting better and better as far a inflamation goes. My Dr. says it is safer to be on Actemra than Medro.
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2 ReactionsRequesting the name of the best rheumatologist in Florida to provide legal affidavit on GCA. Thank you.
Just started again Actemra. Not sure it’s my PMR or GCA that’s flaring. Have had them since 2013. Got down to .6 then had surgery and back up to 20. We will see how much the Actemra helps.
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2 ReactionsKeep us posted!
<p>I’m a 5year veteran. Tapered myself off Prednisone x 2. I’ve never had complete relief but could do some normal activities like shop, go out to dinner. I’ve gone significantly downhill since I won’t go back on prednisone. The list is too long, why. I walk with a cane and need a W/C for appts. Take ibuprofen every 6 hours in order to just walk around the house. I tried Kevzara, 4 months, with no result. Began Actrema after that. I’ve had 2<br />doses. Nothing yet. I miss my life, once very active. This continues to take away. I’m interested in the cortisol level that’s mentioned frequently. I understand the physiology behind it… I’ve never had a level taken. My rheumatologist said I can’t get one while on this med, results would be affected. I find most answers unsatisfactory re: cortisol, adrenal insufficiency, and blood levels as diagnostic tools for this disease. My levels are all within normal limits.(5 years!) leads me to believe that one story about this disease is put forth and when you don’t fit in those parameters no one has answers. Yes I believe I have PMR. I never had the miraculous relief others have experienced from prednisone<br />And now these biologics are not performing either. Thanks for reading. Just when I feel I’ve accepted my lot, out pops my desire for just half of my normal life back.</p>
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2 ReactionsIf Kevzara didn't work then I doubt Actemra will work but it might be worth a try. My rheumatologist said if Actemra didn't work, he would try a different biologic like Humira (TNF inhibitor).
If you are off prednisone, you can have a cortisol level done. The simplest test is a basal a.m cortisol level usually done between 8 a.m and 9 a.m.
https://pubmed.ncbi.nlm.nih.gov/23906493/
This lab test is a relatively good screen for adrenal insufficiency. If you are on prednisone then the test isn't useful until you can maintain a very low dose of less 3 mg.
As a 5 year veteran of PMR and long term prednisone use, your likelihood of adrenal insufficiency is rather high.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
An endocrinologist can be helpful. If your cortisol level is low, the treatment is either hydrocortisone (the drug form of cortisol) or prednisone (a synthetic corticosteroid).
Whether you have PMR or adrenal insufficiency or a combination of both --- you will probably need some prednisone.
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