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I'm a 49 year old male and just completed my 1st week off prednisone after a battle with PMR that lasted 1 year. I vowed if I can make it through I will help anyone I can.
I have always been in very good shape, athletic, and ate very well. PMR came out of nowhere and the inflammation wasn't showing up in my blood testing. I was in excruciating pain in my shoulders and hips (and it actually progressed into my knee and other areas). I did lose my mother a short time before the pain started, and this may have been the trigger.
I went to 9 different doctors, 4 of which were rheumatologists. I had many xrays, mris, and an ultrasound. I was put on 3 different medications and this may have led to suppressed inflammation values in blood testing. I said to one rheumatologist "I'm 48 and have a high threshold of pain, how can people in their 70's deal with this?". I told another rheumatologist after they told me they didn't think I had an autoimmune disease "do I need to see an oncologist?". It was a scary journey not knowing what I had.
I was relentless finding information. I tracked everything and used AI (ChatGPT) to plug in information. It helped direct me what questions to ask and who to seek. I searched social media for all types of answers.
Some doctors would've left me on prednisone indefinitely since that quelled my symptoms. However, I knew long term use can have adverse effects, so I was committed to getting off it. Since I was started on a moderate dosage, it took me longer to taper off. In other words, a more experienced rheumatologist told me she would've started me on a much higher dosage and then started a quicker taper program.
Finding a good doctor who is experienced matters. Many physician websites say they treat PMR, but it seemed as though I was counseling them on it. I finally tracked down a good one who had PMR patients. I did have to drive 40 minutes to meet her, but it was well worth it.
I was very aggressive in cutting out any potential foods that caused inflammation. I used to eat things I once thought was healthy like wheat bread, skim milk, peanut butter, chick pea pasta and sauce. I cut it all out- no gluten, no dairy, no beans/legumes, no nightshade vegetables (tomatoes, peppers, eggplant). Even the chicken I routinely ate, I eliminated due to higher Omega 6s than organic chicken. I always eat organic foods now.
I stopped drinking alcohol for the first several months and then went to a small amount (1 drink a week). I eliminated beer. If I drink, I drink vodka.
My workout includes 5-7 days in the gym. I lift weights almost every gym session and now do moderate cardio: walk and then jog at 6 mph. I do about 10-15 minutes of each daily. This is enough to get my heart rate up and start me to sweat. Then I go into the sauna for 15 minutes. I do also perform breathwork.
Other miscellaneous things: I run an air filter in my bedroom. I threw out old pans that were nicked up for ceramic. I minimize drinking water out of plastic bottles. I used a nasal dilator to improve breathing at night. I go to bed early and wake up earlier than I have in years and yet somehow get better sleep.
The factors I think that helped most were changing the diet/stop drinking alcohol to heal the gut, and get a sweat doing cardio and then go into sauna to sweat out toxins.
I now eat a more normal diet, but still try and remain healthy with the occasional misstep.
This is a very hard disease to battle. Most people can't comprehend what you go through. It can be lonely along the way. However, if you are disciplined and relentless you can overcome. Best of luck to all of you battling out there. I am not a doctor. I am someone who has gone through the struggle. If I can help anyone I will do whatever I can. God bless.
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"Some doctors would've left me on prednisone indefinitely since that quelled my symptoms. However, I knew long term use can have adverse effects, so I was committed to getting off it."
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Sadly ... some PMR patient forums advocate for this approach too. I have never believed the notion that we should take Prednisone and wait for PMR to "burn itself out" without any time limit for how long we can safely take Prednisone. There has to be a better way than that approach for treating PMR.
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1 Reaction@stonewheel I’m happy to hear you’re off prednisone and Kezvara. You sound very disciplined and motivated and I know that was a factor in your recovery.
I’d love to hear about your theories.
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1 Reaction@staydisciplined My first reaction to your age was, that’s young, 49.
Literature, as you know, says PMR happens at age 70 plus or minus 10 years, rarely younger and never over 90. I think that “never over 90” group is because that age group is so small, comparatively. and at that age one’s autoimmune system is on auto-pilot (doing only the minimum and not out to cause trouble.)
Perhaps those rheumatologists had that preconceived mindset and couldn’t wrap their heads around it.
PMR is a strange disease. It affects everybody differently, and yet similiarly at the same time.
Autoimmune misconduct tends to “color out of the lines” PMR, GCA, RA, PsA, ReA, MS, Gillian-Barre, Lupus, etc., or the lines get blurred.
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2 Reactions@staydisciplined Thank you. Yes sir.
I’ll share theories with you. Let’s put that on hold, it is late and I need to go sleep.
I wish you a good evening.
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2 Reactions@kjoed53 it was explained to me that when you taper from a higher dose, say 20mg and go down 1mg it only reduces the milligrams by 5% if math is correct .. so say you start at 10 mg and go to 9mg it is 10%… and when you get lower dropping by a full mg or more reduces the % of prednisone too quickly.
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4 Reactions@stonewheel . Yes since I was 48 at the time symptoms presented, I believe that was a factor in them not appropriately diagnosing me.
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1 Reaction@boo3
Totally understand that. I've just finished a taper from 25mg starting in May. What I don't understand is why it's less difficult to taper from 60mg or 40mg than it is from 20mg. There's more steps to get down to 20mg, and then you still need to taper from there with the same caution.
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1 Reaction@kjoed53 . It sounded to me as though there was a consistent baseline established with someone taking 15mg for a prolonged period of time and that’s why it had to be more careful. In other words the body created a dependence on that level.
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1 Reaction@staydisciplined
It is my understanding that after 3 weeks or more of steroids, your adrenal glands may be suppressed, so the taper needs to be gradual regardless of the starting dose. Starting at 40 mg just means you have more steps to get through first. Going from 40 mg down to about 15-20 mg can often move faster. Below roughly 10-15 mg, tapers typically slow down (small steps, like 1 mg at a time at the lower end) because your body has to restart its own cortisol production. The difficult part at the bottom is the same. Am I wrong?
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1 ReactionI didn't think you could do that but I thought it was worth a shot. If you
can think of any other options, please let me know.
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