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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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@boomermeg yes in essence the rheumatologist told me it is given when you don’t respond adequately to prednisone.
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2 Reactions@dadcue while I certainly agree with this in principle, without access to the biologics such as Actemera and Kevzara, I can't see there is another option. Taking prednisolone and waiting for PMR to burn-out appears to be the only solution. Regular exercise and a strict healthy diet can really help to combat pred side-effects, but do nothing at all to combat PMR itself. There really is the need for an easily accessible medication that is safer than pred over the long term.
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3 Reactions@iska47 I don't think it's necessarily special in your case but the basic issue that the PMR can hang around for a long time, and requires treatment to alleviate the daily inflammation that causes the pain. A course of pred can't cure anything - it can only wash out the daily inflammation causing the pain. As soon as you stop taking the pred or reduce the dose too far, the pain comes thundering back. There are other drugs that may help like methotrexate, leflunomide and hydroxchloroquine. But they don't help alleviate PMR in most cases. Each one seems to work for some people and mostly not work for others.
The real hope seems to be with the biologics like Kevzara and Actemers both of which are looking like helping the majority of people who have PMR. And over the long term are likely safer than pred. But even these better targeted medications still don't actually cure the illness and may need to be taken for a long time.
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4 Reactions@staydisciplined I'm not sure how it works in the US - and it may differ from doctor to doctor - but a common principle in many places is not to escalate from the cheapest most effective medication that is doing the job. Research is starting to show that 5 years is around the median for how long PMR lasts. It's a bit different to the hoped for 2 years or less for many of us. But basically I think doctors took the approach that if a reasonably quick taper is working without flares than there's a good chance you fall in the 2 year group for PMR and won't need any additional medications.
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4 Reactions@gmdb
I think treatment for PMR is evolving in the U.S.
Other autoimmune conditions, especially RA, are light-years ahead of PMR/GCA. I don't think PMR/GCA are unique in the realm of rheumatology so strict reliance on long term Prednisone is no longer mandatory and may not even be the norm anymore.
Prednisone is still the primary treatment for PMR initially. Needing Prednisone for 1-2 years isn't a complete myth in my opinion. Approximately half of newly diagnosed PMR patients are off Prednisone in less than 2 years. A good UK study says "40% of PMR patients are still treated after a median of 5.16 years."
https://pmc.ncbi.nlm.nih.gov/articles/PMC9113421/
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It is the "other half" of patients that are the concern. Universally, the vast majority of doctors don't want their patients on Prednisone for more than 2 years. At some point, methotrexate, leflunomide and other DMARDs are tried. These medications aren't intended to be a primary treatment for PMR but to reduce the amount of Prednisone that a patient needs.
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What is evolving in the U.S. is how long a doctor wants to leave a patient on Prednisone. I was left on Prednisone for 12 years. I tried all the DMARDs but I wasn't able to decrease my Prednisone dose significantly. When the request for authorization for me to receive Actemra was written, my rheumatologist included language that said, "Actemra represented my best hope of ever getting off Prednisone and all other treatment options had failed."
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I think patient driven requests to try a biologic sooner is driving some of it. Generally favorable research based response rates of biologics for treating PMR/GCA are allowing more and more doctors in the U.S. to switch to biologics a lot sooner than they used to.
The cost of a biologic is prohibited in many cases but it depends on a person's insurance rather than the government. The government (FDA) along with other insurance regulatory agencies have a big say in what the insurance companies are required to cover.
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9 ReactionsMaybe not being a candidate for kevzara is from an insurance perspective. Prednisone is much less expensive for insurance purposes.
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4 Reactions@gmdb
In the conclusions of this UK study it says: "PMR is not always a time-limited condition."
https://pmc.ncbi.nlm.nih.gov/articles/PMC9113421/
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When PMR is not time limited ... we need access to other options besides continuing with Prednisone for the rest of our lives. Although, if someone wants to take Prednisone forever and it is working for them ... that is their choice. I didn't want to do that but that was my choice. I had a problem with adrenal insufficiency when I reached 3 mg and then I didn't have any choice about staying on corticosteroids for a year or two longer.
I was willing to try anything else besides prednisone. I did reach a stage when I wasn't going to taper my dose any lower. Actemra allowed me to stay on 3 mg of Prednisone which my endocrinologist said was a low enough dose to start the recovery of my adrenals.
https://jamanetwork.com/journals/jama/article-abstract/2835391
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4 Reactions@kjoed53 it’s very possible
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1 Reaction@dadcue A very nice summary of where we are up to on treating PMR. And, yes, the treatment of RA is well ahead of that for PMR, In Australia only pred is actually approved for RA. But it is legal to try the RA treatments and see if they may work, possibly based on the idea that you may actually have elderly / late-onset RA. It isn't actually legal to prescribed the biologics unless you can prove the patient doesn't have PMR but sero-negative RA, or GCA.
So far over a 3 year period I've tried methotrexate from the start with pred. That lasted 18 months with ultimately very bad side effects and now the last 12 months on HCQ, Neither have been effective and I still flare badly and can't get below 12 mgs of pred. Next one on the list is leflunomide, but feeling pretty doubtful that will do any good.
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2 Reactions@gmdb sorry to hear you are still battling. Have your tried to alter your diet and heal “leaky gut”? I think it had a big factor in my recovery.