Connect
Willing to help
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
Why were you told that it was harder to taper since you started on a moderate dosage, and what is a moderate dosage? When the rheumatologist told you she would have started you on a higher dosage and started a quicker taper, did she explain the difference between this and starting at a moderate dosage? I thought the idea was to find the minimum dosage that works, but this seems to go against that. Can you please expand on your comment?
Thank you for sharing your journey. I am in remission now from GCA/PMR I do think the key is to definitely try to get off the prednisone slowly. Polymyalgia pain returned at 3 mg of prednisone. I endured for a while and never increased and then made a determination to go to zero. I also believe following an anti-inflammatory diet has helped with my recovery..
-
Like -
Helpful -
Hug
2 Reactions@kjoed53 I went to several physicians along the way. Rheumatologist number 1 didn't believe it was PMR and prescribed nothing. I had a pain doctor put me originally on 15mg of Meloxicam, but I was still experiencing pain.
Rheumatologist number 2 prescribed me 15 mg of Prednisone. She didn't believe it was PMR, but I convinced her with my data from Chat GPT to start treating it. Eventually, that didn't sit well with me, working with a doctor who was just listening to what I want and clearly didn't understand PMR.
Rheumatologist number 3 wanted to get a true diagnosis and wanted to have me completely and somewhat aggressively taper off Prednisone while he prescribed 75mg Diclofenac Sodium. Once I was tapered off the Prednisone for 2 weeks he tested my blood and since my blood values showed limited inflammation he assumed I didn't have an autoimmune disease. This phase was one of the most painful. I couldn't take Diclofenac to eliminate the pain so I had to start taking 15mg of Prednisone. He basically said it's not autoimmune and I should find another doctor, maybe it was orthopedic related. I got another MRI on the spine, and shoulders, but a spine surgeon said it was normal wear and tear and nothing structurally wrong, and the orthopedic surgeon said I did have a torn labrum (but I've had that for 6 years).
I was back to square 1 with no answers. I spent time on ChatGPT finding the best physicians in the nearby area who handle this. I kept refining the list and ultimately found someone who posted a video that she talked about treating PMR patients.
She told me since I had been on 15mg for awhile and somewhat still having levels of pain- that she needed a more careful taper journey. I describe it as being able to function, but not pain free.
She said if I came to her originally, she would've hit it with a high dosage. I dont know is she this specific number or it is what it is my mind but I'm thinking 40mg or even 60mg. I got the impression she treats it aggressively with prednisone and quickly tapers. Perhaps how it's used in other settings like when people are sick and get a 5 pack (50mg day 1, 40mg day 2, 30 day 3, 20 day 4, 10 day 5, 0 day 6)?
Since I was on 15mg for a prolonged period, my first reduction was to 12.5, then to 10. From there I went down by 1mg every 2 weeks.
She was as committed to get me off the Prednisone as I was, but she said the taper had to be more careful. I hope this helps.
-
Like -
Helpful -
Hug
1 Reaction@dlb3 I'm happy to hear you are doing better.
There were points along my way where I had areas of inflammation shortly after a taper: for example one hip would bother me. Or new areas emerged: my fingers on my hand. I told the doctor out of concern, as I was wondering if I should hold the dosage where I was. Since I documented everything I could let her know where things bothered me. She encouraged me to continue the taper. Sure enough those inflammation areas eventually dissipated. Perhaps some of it was mental.
Determination is a key word that you mention. I know some eventually get better on their own, but for me I noticed my progress due to the lifestyle changes I made.
-
Like -
Helpful -
Hug
2 ReactionsHello @staydisciplined, I would like to add my welcome to Connect along with @kjoed53, @dlb3 and others. Thank you for sharing your PMR journey. It's great to hear that you learned to be your own advocate so quick. My first time with PMR in my was in my 60s and took me 3-1/2 years to taper off of prednisone but it came back 6 years later and similar to your journey I learned quickly that eating better along with more exercise helped me get through my second PMR flare in a year and half. I'm close to 7 years in remission and hoping PMR stays gone. I think one of the reasons PMR is so hard do diagnose is there's no definitive test to diagnose it and there are several other conditions that can mimic PMR - https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica.
There are quite a few other discussions in the PMR Support group if you want to see what others have posted. Here's a link to the list of discussions - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.
Just curious - Did you maintain a journal for your symptoms and daily dose of prednisone when your PMR was active?
-
Like -
Helpful -
Hug
3 Reactions@johnbishop I’m happy to hear you are in remission. Yes I kept track of everything: pain levels and location, medication levels and taper schedule, diet changes, gym workouts, etc
-
Like -
Helpful -
Hug
4 Reactions@staydisciplined - Keeping a daily journal with pain levels and dosage was suggested by my Mayo rheumatologist early in my first round with PMR and really helpful for me also.
-
Like -
Helpful -
Hug
4 Reactions@staydisciplined
My journey started with my PCP thinking that I had a pinched nerve. I have a history of cervical spine arthritis, spondylosis and stenosis so that's where everyone was originally looking. I made it all the way to a neurosurgeon and it was there that he determined that my symptoms sounded like autoimmune. He ordered blood work and referred me to a rheumatologist. The rheumatologist put me on 15mg prednisone because the initial blood work came back with elevated inflammation markers. He did extensive blood work to rule out everything else and then diagnosed PMR. Since 15mg prednisone wasn't doing anything, he bumped me up to 25mg. That worked for my hip girdle pain and most of my shoulder and neck pain. After a month he wanted me to taper to 20mg. I started feeling the pain again so I went back to 25mg and agreed to taper 2.5mg at a time. That worked for me. The extensive blood work ordered by my rheumatologist also pointed to a blood disorder and after being referred to a hematologist-oncologist, I was diagnosed with SMM.
Getting back to rheumatologists, it seems there's some doctors who aren't capable of diagnosing something unless they can point to explicit test results. PMR doesn't allow that. There's also a lack of consensus on what dosage of prednisone is best for PMR. Some start with the high dosage you mentioned, while others look for the lowest dose that works. My rheumatologist falls in that category. My journey has been further complicated by my SMM diagnosis though.
-
Like -
Helpful -
Hug
3 ReactionsI want to mention that with tapering of prednisone, the percent change from the previous dose is higher when you get down to the lower numbers, like 5 mg and below. I seem to have to taper very slowly at this point, like .5 or .25 mg every 30-60 days. Sometime I alternate for example 5.5mg one day and 5.25mg the next.
Also I wanted to mention that untreated sleep apnea could play a role in PMR and or other autoimmune conditions. Low nighttime oxygen levels can cause increased inflammation. I will try to locate the studies that have been done and post them. I think an older study was done where they found higher inflammatory markers in people with RA and untreated apnea vs treated. I recall another more recent study of people with PMR but I will double check this and post the sources.
-
Like -
Helpful -
Hug
3 ReactionsSo bad that you got it, And, you’re only 49.
I’m 20 years older than you but our journey has been almost identical. PMR attacked you and you attacked it. And, that exactly what I said to my rheumatologist last week. Same diet, sleep, no alcohol, lots of cardio and resistance combined with stretching and TaiChi that I picked up free from YouTube clips and hours upon hours of research. I commonly workout 2.5-3 hours as day x 5 days a week. (Fortunately for me, I’m retired.) And, I drink 3-4 liters of water every day. I believe (and my rheumatologist had heard this) that the more times and the faster that I can get freshly oxygenated blood, loaded with fresh nutrients, medication and supplements to each and every cell in my body while at the same time removing CO2, and liquid and solid wastes from every cell, every day, the faster I’m going to come out the other side. Sleep is crucial. We heal in our sleep.
After 10 months, I took my last Prednisone about 3 weeks ago. I took Kevzara for 8 months and stopped it over a month ago.
PMR attacks healthy people. It made me feel like a beached whale being crushed by my own weight. It crippled me. I tolerated the pain way longer than I should have before going to my PCP for help. He knew what it was. I was hospitalized on January 3 because of Prednisone side-effects for 4 days.
I have some theories about PMR that I have shared with my rheumatologist. Time will tell.
I am glad you are doing so well and you sharing your journey is extreemly helpful. Success stories are inspirational and encouraging. Thanks. Love your attitude. There are several people on here who’ve stuck around to help. I think you’ll get a lot of questions Welcome.
-
Like -
Helpful -
Hug
4 Reactions