Connect
PMR: Are there treatment alternatives to Prednisone?
Hi, all. I'm wondering if anyone is finding any alternatives to Prednisone in treatment of PMR?
I've been on the PMR/Prednisone train for about 6 months now (was in pain and stiffness for a year or two before but just thought I was "getting old"), being treated through Rheumatology at Shands Hospital (Great people, like Mayo, I'm sure.) in Gainesville, FL. I started at the high dose of 60 mg, it was amazing--within days I felt like I was invincible, having delusions of grandeur due to "Prednisone Psychosis" (It's a thing. And I ride it for all it's worth. 🙂 )
--and launched into crazy lucid dreams and auditory hallucinations--honest to God, one night I heard Wolf Blitzer from CNN standing at the foot of my bed and in a clearly audible voice say: "Right." -and I was up for the night and most nights after. In fairness to my brain, I watch The Situation Room sometimes, so I should've seen that coming.
I was only sleeping, like 1-2 hours a night, but had incredible energy. My nocturnal meanderings included a voracious appetite--for which I tried to stave off weight gain by eating large quantities of vegetables. My wife refers to me as "The Were-rabbit", with appropriate emojis. And with my morning evacuations I could fertilize half of England. I've retained fluids to the point that I look kind of like a squirrel with a mouthful of acorns? Only without the benefit of said nutritional content. I look like--if Alfred Hitchcock and Winston Churchill had a love child? I would be that child.
These days, I've tapered down to 15 mg/day, and the pain and stiffness are returning. Now I look like Winston Churchill/Alfred Hitchcock (Where did my chin go? I distinctly remember having a neck.), only I'm dragging out my cane again (Okay, that's a little Churchillian, at least) to get up and move around.
If I sleep 5 hours at a stretch, I call that:
"Boy, I'm sleeping the whole day away!"
Fortunately for me, I'm teaching remotely via Zoom, and my students are all so kind as to not ask what happened to my chin. Some days, I can't even remember if I was wearing pants. They love me for the madman that I am.
As I consider increasing dosage and heading back into Prednisone Psychosis land, I wondered if there's an alternative to allow me to hop off the train?
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
I am new to this chat room I was diagnosed w PMR one year ago underwent temporal artery biopsy and negative for GCA was on 60 mg prednisone for One month then tapered down to 20 mg. Tried methotrexate and had a bad reaction. Presently on lefleudomide sulfanomide and 5mg prednisone. I’m hoping to get on Kevzara but open to any suggestions for treatment to get away from present regime due to side effects
-
Like -
Helpful -
Hug
1 ReactionHi @jds2123, Welcome to Connect. While I'm sorry to hear you have joined the PMR club, I'm hoping you can learn from what others have shared so that your journey with PMR will be much easier. I've had PMR flare up twice before but it's been in remission now for almost six years and I'm hoping it stays there. I've only had prednisone to treat PMR so I won't be much help. You are not alone seeking alternative treatments so I'm hoping others like @chris1466, @nyxygirl, @mikeshell, @tillysam and others can share what has helped them.
Keeping a daily log helped me through my PMR flare ups. Do you keep a daily log with your the amount of pain you have when you wake up and the dosage you are taking for the day?
-
Like -
Helpful -
Hug
1 ReactionMy Rheumatologist prescribed Famotidine aka Pepcid or Zantic 20mg and that has solved the problem plus I am consciously drinking more water.
Hi, jds; I am on Kevzara since October and will have my 6th shot on Tuesday. I was diagnosed in January 23. I am down to 2.5 of prednisone daily. I have had no reaction or side effects from the Kevzara and hope to be off prednisone entirely in the next couple of weeks. Sanofi and Regeneron developed Kevzara and you should see if you are eligible for help paying for Kevzara. I am retired military and so I have a reasonable co pay for a 2 month dosage. My experience has been very positive but us PMRers are all different.
Good luck and Happy New Year
-
Like -
Helpful -
Hug
3 Reactionsjds2123 Are you planning on tapering down off the prednisone soon? This is something that I hope would be a goal since prednisone has such a long list of side effects. I was diagnosed with PMR as a direct result of an adverse reaction to a drug so I am now overly cautious about wanting to go on any drug - including prednisone.
I am just now titrating down - and it is a very slow process but to date I have not had to reverse direction. I use Tylenol to help with pain as needed. At one time I was taking 3000mg of Tylenol, now it is about half that. Prednisone is playing with my immune system, fluid retention, weight gain, calcium, thyroid, sleep and many, many more side effects - I personally want off it ASAP. My PCP identifies prednisone as a high-risk drug - sometimes necessary but still high risk. I would agree.
I wish you success on your journey - it will need patience - which I often times fall short on. I always want to fast forward to the ending.
-
Like -
Helpful -
Hug
1 ReactionI too feel that the Covid vaccine triggered this immune response. I haven’t tried Tylenol but I will. Thank you and good luck. I too am shunning any new vaccine.
-
Like -
Helpful -
Hug
1 ReactionYes I keep track of meds symptoms and foods alcohol medication any other factors I might change to lessen symptoms. On anti inflammatory diet now.
-
Like -
Helpful -
Hug
4 ReactionsI am about to start Kevzara too. I am so hopeful that it will work for me and that the side effects will be minimal. You say you have had a positive experience with the drug. Does that mean your PMR symptoms have resolved? What dosage of prednisone were you on when you started Kevzara?
Wilmington Delaware? If so I live so close.
Hi @harelover, You might also want to take a look at the following discussions to learn what others have shared on Kevzara.
--- Kevzara (sarilumab) to treat PMR: https://connect.mayoclinic.org/discussion/kevzara-sarilumab-to-treat-pmr/
--- Starting treatment with Kevzara: My journey: https://connect.mayoclinic.org/discussion/first-dose-of-kevzara/
--- Leflunomide, Kevzara for PMR, who knows about them?: https://connect.mayoclinic.org/discussion/leflunomide-kevzara-for-pmr-who-knows-about-them/
I don't eat or drink anything without Googling it first. Amazing how much of our seemingly innocuous food are highly inflammatory!
My sweet tooth appreciates the fact that dates are not!