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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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@kjoed53 It is very “goofy” (my medical term not my doctor’s) condition. I will explain my journey as it was about 18/19 months. I began tapering about 1 month into diagnosis and attempted to go down 5 or so Milligrams every 3 to 4 weeks. Really bad decision. Lived with some reoccurring issues in shoulders and hips and by reading many posts on this site realized I was tapering too fast. Went back up to 20mg (original dosage) and then after 3/4 weeks started tapering about 2 mg. Only because I didn’t have any issues I continued until I got to 10mg. Tapering from there I did few weeks of 9mg one day .. 8mg the next for a month and so on until I got to around 5
And then I started going down by 1/2 mg. If you go down too quickly your
Body doesn’t produce the cortisol that the prednisone replaces during treatment. Didn’t want to be on prednisone and I tapered too soon and too quickly. It did put me behind in the long run
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3 Reactions@boo3
Everyone has a different story for their taper. I chose to taper half the amount over half the time that my rheumatologist suggested. He agreed to this process. It took 15 weeks to get from 10 to zero, but every drop was small. I wanted off prednisone, but not due to the side effects. I also have SMM so I can't stay on prednisone. I've been on kevzara for 11 weeks. I was relatively pain free until I reached zero, then I had extreme shoulder and neck pain every evening for 3 days before that started getting better.
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2 ReactionsYou were diagnosed young! Wow! I was told it was an old person's disease. I had wondered if grief had something to do with this disease. My mom died 4 months before this crap started. She had battled lupus most of her adult life. Was PMR my inheritance from her? I sometimes wonder. It also felt as if it was my 65the birthday gift as it started one month after my birthday and on my birthday I was still running. I had exercised(over-exercised too -helped me deal wth stress) for 30 years and was fit. Then the excruciating hip and shoulder pain started. It took months to get a partial diagnosis because I refused the prednisone at that time. I live in quebec and they assign you a doctor -if you can get one- whether you trust-like them or not and I don't trust this one and had never heard of PMR so I didn't understand what she was talking about. Months later, I finally saw a rheumatologist who was yelling at me in her office, telling me I'd get GCA if I refused the prednisone. I just left and tried everything and I mean everything natural that I could to get rid of the pain. Of course I spent a fortune. A chiropractor helped my shoulders, a " healer" helps with inflammation to a degree but nothing else worked and it got worse so I had to try the prednisone which worked great for 17 days and stopped working. I eventually saw another rheumatologist, very young and unexperienced but trying to help. I also have osteoporosis and broke my hip in April but I was knocked over by a 130lbs dog. That healed well despite the osteoporosis. Now he wants me off the pred quicky and I am at 5mgs with lower pain levels (but now have pain in the sternum area but not the shoulders?) and I can function. I garden, stack wood, rake, I'm still active but too much exercise causes flare-ups. I do go to exercise bone building classes. Of course the hours the pred is working is when I do all this. Am pretty good from 11am onwards) I have cleaned up my diet as much as I could and don't drink but would like to sometimes. I take care of my elderly and deaf father, so a lot of stress there. My question is: Are you off all medication and do you feel the PMR is completely gone? How did you feel during the lower end of the taper? Did you have to go back up at some point and then reduce? The rheumatologist wanted me on metrotraxate to get off it the pred faster but I refused after remembering my mother taking it and not doing well and all the research I did but he did write me a prescription for hydroxychoroquine but haven't started it yet. Sorry this is so long. Just wondering about your experience getting off pred. and how you feel now. Thank you.
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2 Reactions@chris67
I was diagnosed with PMR when I was 52. There was a bit of a delay diagnosing PMR because I already had a couple of other autoimmune conditions. In general, autoimmune conditions aren't age dependent because children can have them too.
I was taking prednisone before PMR was diagnosed. I decided that I wasn't going to take prednisone anymore and I threw all of my prednisone away. A month or so later, I had classic symptoms of PMR. I didn't know that I had PMR but I knew I needed some prednisone.
I think not taking prednisone caused me to develop PMR.
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There are some autoimmune conditions like RA that are usually diagnosed at a younger age. There is also what is known as "elderly-onset" RA which is abbreviated EORA. I guess it works both ways that conditions usually diagnosed at a younger age can occur at an older age and vice versa.
https://www.healthline.com/health/rheumatoid-arthritis/elderly-onset-rheumatoid-arthritis
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4 ReactionsGreetings
I am 79 years old fighting with PMR from April 2021
Went through 30 MG prednisone course with lowering to 20 10 5 2 - 0..
Not very successful, now pain is on level 5 to sometimes 10...
Eat organic food, mostly...
Disappointed in all methodologies, ... maybe my PMR is very special? It was triggered by Pfizer second shot of vaccination.
I was always in good shape being athletic and capable to do any job, by brain or muscles.
My father passed away at 95...
He was World War II veteran, wounded few times.
So my genetical basis is quite strong.
Any ideas what to do?
Ozempic, Kevzara??
Just to continue live with terrible pain in shoulers,elbows, wrists, hips, knees,...spine cord..
"Life is a pain, hence
Pain is a life"...???
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4 Reactions@chris67 I’m sorry to hear about your journey. I am completely off prednisone and starting to eat more normally. While I was on prednisone and trying to get rid of PMR I rarely ate anything that was potentially inflammatory .
I had several times during my taper that I questioned the rheumatologist should I go higher dosage. I never had a true flare up but would have pain in newer areas and it wasn’t bilateral. For example my right shoulder would hurt. A few days later another body part hurt. Since it wasn’t bilateral att the main sources (shoulders and hips) she encouraged me to continue. I’m not sure if I was magnifying things mentally.
I felt healing my gut mattered. That’s why I stayed so disciplined with my diet. I didn’t cheat with foods until much later in the process.
Medications help quell the pain, but make sure you also address what is driving it. For me I thought it was diet, toxins, and stress.
You will get there, keep your head up.
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4 Reactions@iska47 I asked about Kezvara, but was told I wasn’t a candidate if prednisone was working.
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2 Reactions@staydisciplined
Prednisone is used as the first resort and last resort for some people.
After you relapse once or twice, the second resort is usually methotrexate.
It varies how many resorts are used before Kevzara is tried. However, Kevzara is rapidly moving up on the list of resorts that are tried.
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3 ReactionsHello @iska47, I would like to add my welcome to Connect along with @staydisciplined, @dadcue, and others. Sorry to hear that you have been fighting this condition for so long but you are not alone. The good news is if there is any, is that a lot more treatments have been found helpful in recent years. I'm wondering if you might find the video and discussion started here by @dadcue helpful:
-- Biologic Medications-Video about how to decide what is right for you.
https://connect.mayoclinic.org/discussion/biologic-medications-video-about-how-to-decide-if-it-is-right-for-you/
Are you working with a rheumatologist on a better treatment?
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3 Reactions@staydisciplined
Was this a Rheumatologist who told you if Prednisone was working you're not a candidate for Kevzara?
Sounds unusual??
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