... this condition to talk to about their experiences?
Polymyalgia Rheumatica - I have been recently diagnosed with PMR. I'm looking for others with...
Question posted by Debbie Lou on 13 March 2017
Last updated on 5 December 2023 by rogerjb6
16 Answers
rogerjb6
5 Dec 2023
I was diagnosed with PMR in October this year. Shoulder pain so intense could not sleep in bed, two months sleeping in a chair. Was given an injection of KEZVARA and within three days the pain level was down enough to sleep in bed. I am on a two week injection cycle, no side effects and am not taking any other meds for PMR.
Jamrock
25 July 2022
Hi - I’ve also been recently diagnosed with PMR after 9 months of GP visits, physios, scans and x rays. Pain and stiffness started with hips and down front of legs and then kicked off in my shoulders and into the neck. Transitioned from a fairly fit mid-60 year old who regularly walked 20k steps a day, swam and cycled to what felt like a 90 year old who struggled to do basic things like get into a car, put on a coat, get down stairs etc etc.
As inflammatory markers weren’t high, PMR was discounted but eventually they agreed to a trial of steroids and I was put on a week of 15mg Prednisolone. MAGIC - shoulder pain vanished within 24 hours and massive improvement in hips stiffness and pain too. I’m now on the slow taper down and very hopeful that it will have burnt itself out by the time I’ve come off completely.
Interestingly my mother had the same condition in her early 80s and, again the steroids made a huge difference, and her only difficult was coming off too quickly and having to increase again. But the second time she was completely clear when she phased down.
My big question is whether anyone else has experienced weight gain as an unwelcome side effect. I have noticed a great appetite but I seem to have put on weight (possibly some fluid gain?) and I’d welcome suggestions as to how to manage this as I have some way to go in respect to phasing out the steroid. I eat fairly healthily, lots of fruit and veg, little processed food etc but have wondered about some interval fasting diets eg 5:2 but am not sure if my appetite could manage that! All suggestions welcome and thanks.
daughterofPMRMom
13 Feb 2022
Just wanted to warn users of prednisone of a side effect no one seems to have mentioned. My mother is now 103. In her late 60s, she got PMR (She believed it was transmissible, that she got it at her golf club, because there were a number of other members who were diagnosed with it at the same time.) She was also prescribed prednisone and took it for over 10 years and, like some of you, had reduced it to the lowest amount but was unable to stop without the pain in her neck coming back. Finally, after about ten years of taking it, she was taken off it because her skin (and blood?) became too thin. The side effect that remained, however, was terribly itchy skin. No one had warned her of that and, eventually, she became convinced it was caused by bugs, what they call delusional parasitosis.
(We were shocked because my mother was a very happy, smart, active and strong-minded person, who had seven children, many grandchildren and great grandchildren, and drove her car and played golf into her early nineties, when her osteoporosis made it too difficult.) Delusional parasitosis is an awful disease that has never gone away despite trying many remedies including lyrica, hypnosis, yoga, and many others. Mom is one tough lady and is still going at 103, though now, with a certain amount of old age dementia, but she still scratches. Non-stop. Even in her sleep. She scratches her arms, legs, face, etc. until the sores bleed and she says she is "miserable" about the constant itch. This is NOT a way to live your old age, so please warn others about the itching side effect. A neighbour was warned of it by her doctor and was able to understand and cope with it differently than my mother. We wish Mom's doctor had warned her of this side effect because we believe she would never have attributed it to "bugs" had that been the case. As for the PMR pain, that seemed to begin to diminish and go away after they took her off the prednisone 10 to 12 years later. I wish you all luck with your pain issues; I remember how crippling it was for Mom.
judy el
20 July 2021
HI Debbie Lou, polymyalgia rheumatica is a devastating condition, with far reaching consequences, it is a condition that causes a very high inflammatory reaction, prednisolone is the standard "treatment" this can be very effective in the short term, however , it does not cure the condition, PMR is said to be incurable , i developed PMR after a vaccine shot in 2013, i was hospitalised with migraines and double vision after suffering all the typical symptoms, after 9 months of muscle pain, inability to walk properly muscle cramping, severe weight loss, loss of appetite, which i cured myself by forcing myself to eat , every thing that was energy dense at breakfast as i could not eat an evening meal, and i was losing muscle markedly, i also noticed my balance was affected, and my gait was abnormal as my muscle pain was severe , difficulty in getting dressed, i strengthened myself by stretching and doing exercises,
under a hot shower and before getting out of bed while my muscles were warm, i started going to a local pool after i became more mobile, and i joined an aerobics class ,i remember actually crawling like a baby, from the large pool to the hotter childrens pool , i was beyond embarrassed , but gradually i started to recover, in desperation i consulted a naturopath, and i was prescribed an enzyme found in a common tropical fruit, this has anti inflammatory properties , and my inflammation began to normalise, at this point, i must stress that i am NOT giving any medical advice, any person reading this post MUST get their own medical advice , because every product can have contra indications with other foods or medications , or allergic reactions. gradually, working on diet, reducing sugars,taking a raft of minerals and vitamins, eating fresh nourishing natural foods, exercising, relaxing and reducing stress with music , exercises to music , i regained my balance and my strength, i still have eyesight problems ,but have largely recovered with no relapses, i am very conscious now about the importance of well being and taking personal responsibility for health and happiness , hope this helps best wishes Jude.
davepeerson
18 Dec 2021
Thanks Judy…..That is very encouraging!! Be well, Dave
emsunshn
23 May 2020
Hello Debbie Lou and everyone,
I am new to this thread but not new to PMR at all. I started symptoms 5+ years ago when I was 46. All the sudden, working as a nurse manager, I found that I couldn’t walk from the parking lot to the unit and during my day as a nurse. I felt like I had the flu such as extreme fatigue, body aches, pain but never a temp. I started taking Tylenol and ended up on 4,000mg per day which did almost nothing for my pain. My symptoms were/are extreme fatigue, body aches, ‘muscle aches’ (which I describe it). It felt like my ‘muscles’ (which it is muscles and connective tissue) were in constant contraction or dried and ripping / stretching apart whenever I move. I saw my PCP and did some basic blood work which came back fine. She just said we would keep an eye on it.
After several months and having to quit my nursing job due to terrible pain and very limited mobility and loss of strength, especially upper arms (specially biceps), lower back, pelvis, and thighs, I ended up not being able to walk and assistance with wheelchair/walker.
I researched and went to a Rheumatologist; he did tons of tests over several months and a few different Fibromyalgia meds with no change. I heard from a nurse friend to start on Prednisone, which he reluctantly gave me Prednisone 5mg daily and in 3 days I was an entirely different person, able to walk and decreased pain. He still had no diagnosis for me and sent me back to my PCP which she refused to allow me to remain on Prednisone. I went off Prednisone for the next 2.5 years and back to all my earlier symptoms with no treatment/no pain meds/no nothing. I went back to my PCP and she was willing to give Prednisone 5mg daily which at that point did little to help since I had not been treated for a few years and my blood work was terribly high. In the meantime, I started having many side effects from Prednisone. I continued to research and found a local Neurologist that was willing to see me. This was going on my 4th year of symptoms. After an hour with me, he diagnosed me with Polymyalgia Rheumatica (PMR). He also said that they most likely didn’t diagnose me at age 46 because ‘I was too young’ for this disease. That was very frustrating! Plus, I had been pretty much home-bound for past 4 years due to extreme symptoms but luckily, GOD allowed me to find a job to work from home. The Neuro referred me to another Rheumatologist. I have been seeing her for 1 year bouncing back and forth on Prednisone.
In the beginning, I talked her into starting me on Prednisone 25 mg daily and she decreased very slowly. Things got a little bit better regarding pain, stiffness, leg pain, etc. Keep in mind, the entire 5 years, NO M.D. would allow me to be on pain medication other than Tylenol, Ibuprofen or Aleve, which did nothing. I got down to 7.5mg of Prednisone about 6 months ago, which when I got to Prednisone 15 mg daily, all my symptoms returned. I kept asking to remain at 15mg daily but was not allowed. About 2 months ago, I also started on Methotrexate to help get off Prednisone, but it is not helping (which takes 3 months to work). Also, blood work is required every 2 weeks for months while on Methotrexate. So, what led me to research today, again, and got to this thread is that my main blood markers, CRP and ESR (sed rate), this week have been the highest ever in the past 5+ years and my pain and mobility has been absolutely terrible this past week. I am so done with this! I also read a thread on here about CBD oil and read many studies on this also. Like everything else, it works for some and not for others. I may try it. What do I have to lose? I do a video appointment with my Rheumatologist this coming week (5/2020). Not sure what will happen and don’t know where to go from here. I continue to look for an online support group but no luck with that. If anyone has any recommendations on PMR support group, that would be great. I have never talked with anyone with PMR that has had active symptoms for more than 5 years. I appreciate you allowing me to tell my story and thank you to everyone that has shared their stories. And, maybe my story could help someone struggling with this awful disease.
mmrc111
28 Dec 2019
I have had symptoms for about 6 weeks. Have had every lab test known to mankind! No diagnosis from primary care doctor. Put symptoms online,and could check off every one for PMR! Hate the thought of prednisone. Has anyone had any success with CBD oil?
Joy Nicholls
9 Aug 2019
I was diagnosed two years ago and was advised to reduce prednisone too quickly and had a relapse at 5mg. It has taken me the best part of those two years to reduce back to the 5mg. My lovely husband knew how I was struggling and devised a reduction that works for me and I thought I would share it in case it helps someone else. Once I got below 10mg I was frightened it would all come back again so I followed this plan and so far so good.
I do a six day plan as follows.
8 3/4. 7 1/2. 8 3/4. 8 3/4 . 7 1/2. 8 3/4 if this works and I feel good I then do
7 1/2. 8 3/4. 7 1/2. 7 1/2. 8. 3/4. 7 1/2 if this works I then do
7 1/2 every day until I feel okay (usually 1/2 weeks) then I reduce to
7 1/2 . 6 1/4. 7 1/2. 7 1/2. 6 1/4. 7 1/2 if this works then I do
6 1/4. 7 1/2. 6 1/4. 6 1/4. 7 1/2. 6 1/4 if this works then I do
6 1/4 every day
The drop each time is less than 1/2mg and the drop is constant so no sudden changes. I can only make this work over a six day programme but it is working and hopefully I will be off this horrible drug in the near future.
Mark Ferraro
27 July 2019
I had PMR for 18 months. Now off prednisone for 6 months with no reoccurrence. I do take turmeric/circumin... 3 tablets a day. No side effects like prednisone. Yeah! Good luck!
Jimmcb
27 July 2019
I also recently contracted PMR. I went from thinking I over stressed my body doing chores to realizing I had something seriously wrong with me. I googled my symptoms and landed squarely on polymyalgia rheumatica (PMR). My Doctor agreed. I had shoulder, wrists, and other joint pain that made getting up or bending down painful.
My Doctor put me on Prednisone (20 mg/ day for 30 days) and Methotrexate (2.5 mg/week for 3 months at least). Note: I weight 260 lbs and dose is related to weight. The Prednisone worked in about an hour or two.
When I ran out of Prednisone, the pain came back and my neck became a new symptom that was so bad I could hardly move. My doctor doubled my Methotrexate prescription (5mg/week) and gave me 2 more weeks of Prednisone (20 mg/day). I’m cutting the Prednisone in half to see if I can function on 10 mg/ day. Hopefully the Methotrexate will work at the 5mg/week dose, this may take sometime to kick in. So far, I do not know.
Going from being very healthy to this has been a shock. There are a number of YouTube videos regarding Prednisone, I suggest you look them up.
Danger girl
14 March 2019
I am 59 and was diagnosed in the fall of 2018 with PMR. At first I went on prednisone 60 mg a day tapering down every three days and I had immediate relief within 36 hours. However as I was winding down from the prednisones migraine started. Having never had one before and they were extremely painful and I ended up in the ER. I tried seeing a chiropractor, acupuncture, and a Chiologist — all gave minor relief but no solution. Now I’m seeing a homeopathic doctor trying to reduce inflammation . All along the way I’ve been taking lots of vitamins still haven’t found the combination that works. I’ve also tried changing my diet and that hasn’t quite worked. Trying to stay away from the prednisones and the migraines that seem to follow . This was helpful to read all of your experiences as well however I have no solid solutions for you at this time.
rosebud78
6 Feb 2019
Hi Debbie, I am 58 years old and was diagnosed with PMR in June of 2017 and was diagnosed immediately with the typical pain in neck, shoulders, tops of arms and hips and upper legs. I started out at 15mg of prednisone and I'm happy to say that I am down to a half mg of prednisone. Don't give up hope! Just when I thought I'd never get down to 4 mg, here I am at only .5 mg and I can dance and exercise when I want to. Occasionally I just take ibuprofen on the weekend to give my system a break from the prednisone. Make sure to take vitamin supplements to keep bones and immune system healthy. The prednisone can play havoc on your body and eyesight (my eyesight hasn't changed).
Rport
3 March 2019
Hello, wondering how long you took Prednisone and how it was tapered before you were able to get down to 5 MG? I am 55 years old and have been on Prednisone for a month and a half, my doc had me go down to 15 mg. From 20 but I could not walk after a couple of days so I am back to 20 mg. Waiting to see a rheumatologist! Most days aren’t too bad but I don’t want to be taking the Prednisone if I can help it! Looking for any alternatives! Thank you!
rosebud78
14 March 2019
Not sure if the question was aimed at me but I started taking 15mg of prednisone on 6/15/17 for 10 days then dropped to 10mg,then9mg on 7/13/17,then kept tapering down to 6mg on 8/25/17,then 5mg on 9/8/17,then 4mg on 9/22/17, then3mg on 10/6/17,then back up to 4mg on10/17/17, then 3mg on 10/23/17, then 2mg on 11/6/17, back up to 5mg on 11/21/17, then 4mg on 11/25/17, then 3mg on 1/1/18, then 2mg on1/26/18, then 1mg on 10/24/18, then 1/2 mg on 12/26/18, now taking 1/2 mg every other day. I am thrilled that I am at this low dosage now. Still hoping to totally get off of it but not until my body is ready. Quality of life is important!
DaupineRose
6 Feb 2019
Hi, Debbie Lou! I was just diagnosed with PMR a few weeks ago. But I knew something was wrong at least 6 months ago. What amazes me is how we all seem to have the majority of symptoms in common. I was diagnosed with Fibromyalgia over 30 years ago and I was able to adapt, for the most part, to it. However, PMR is something more of a challenge. I went from being an active person to quite the opposite. No choice, for now. There's a lot of symptoms to deal with everyday. But, I think the worst part for me is bedtime. I spend the night awake and wandering from room to room, furniture to furniture, try on to find a comfortable, painless place to sleep. Maybe you already know this, but I have many sleepless nights. Do you or anyone else struggle with this?
adoptmeow
14 March 2019
An adequate amount of Prednisone usually provides significant pain relief. It is typically prescribed to be taken once a day upon waking up because it can cause difficulty in falling sleep. But PMR pain can make sleeping impossible. When I took full dose in the morning it wore off by bedtime. So I had better results dividing my dose, e.g. 20 mg at breakfast and 10 mg late afternoon or 10 mg am and 5 mg pm.
mcbrash
24 May 2019
I was also diagnosed with PMR 3 months ago and like you, the nighttime was an absolute nightmare for me. I wondered from room to room trying different ways to get comfortable. Laying down was out of the question as my shoulders were so painful so I slept many nights for a couple of hours at a time just sitting up with pillows propped behind my shoulders. I didn't go to the doctors for some time as I thought it was all due to stress and thought it would go away once problems were resolved. I was getting concerned about all of the pain killers I was taking and decided to go to the doctors to get some advice. The first things she did was ordered blood work and lo and behold PMR was diagnosed. I was put on 15 mg of prednisone which gave me back my life within 12 hours, I couldn't believe it. I stayed on 15 mg for a couple of weeks and started to taper down by 1 mg per month as this has to be done very slowly and am now on 8 mg.
The only side affect that I have right now is the weight gain and I am very unhappy about that but what's the alternative... ….I couldn't function at all before the prednisone. I do have a little pain in my wrist and knees some days but no where near as bad as before prednisone. I'm praying that I'll be able to keep on reducing them until I'm off of them completely without any problems.
tbcblues
2 Aug 2018
I'm 66 yrs. old and I just got diagnosed with PMR - started out with what I thought was an aggravation to an old knee injury (from working out 3 times a week) - went to knee doctor and he gave me a kenalog shot in the knee which was supposed to last 3 months, but only gave me relief for 4 days. At the same time one shoulder was starting to bother me but I didn't think too much of it at the time. I was getting ready to go on a week's vacation and the knee was very painful, so the knee doctor gave me a prednisone pack to get me thru my vacation - it worked great! But after I ran out of pills, the pain came back more aggressively, affecting the one shoulder first, then moved on to the other shoulder, then neck stiffness, then hands, then hips. I thought it was some form of arthritis. But when I finally got in to see my primary doctor, he made the diagnosis of PMR almost immediately.
I looked it up online and wow, these were my exact symptoms. So I got a 10 day supply (1 tablet per day) of 20mg prednisone and I am on day 3 - the pain has subsided substantially to where I can at least sleep, but hasn't gone away completely. Doctor also told me to stop taking my statin drug which I have been on for 25 years during this 10-day experiment, so that was weird. Anyway, the prednisone does help, but I'm skeptical that it's going to knock this out completely, so I'm probably headed to a rheumatologist in the future. This is nasty stuff. Glad I found this support group.
alib123
11 Jan 2018
I got PMR symptoms three days after getting a flu shot at end of Nov. this year. (I think the flu shot triggered the PMR, though doctor doesn't think it caused it.) Wasn't diagnosed until Dec. 19th. and was put on 20 mgs Prednisone and Meloxicam (NSAID). I'd never taken steroids before and innocently got on it, just glad to be out of pain. For me, worst part is in the a.m. when am super stiff in my legs and upper arms. Here's how I'm dealing with it so far: still taking the prednisone, but 6 days ago I quit the pain medication. Instead, I try to handle the inflammation to reduce the pain. (I watched a fascinating 2016 documentary about fasting and the results gotten in "re-setting" the body's systems, especially in those with arthritis or joint/muscle pain. Seemed encouraging, so am steering in that direction.
Note: fast should be medically supervised) Here's what I've been doing the last 5 o 6 days: I wake and immediately drink H2O, ginger water, matcha tea, detox tea, etc. I then drink a cup or two of organic chicken broth, and eat a few cubes of homemade "jello" (made from gelatin with a package of powdered daily vitamins gotten from Costco - they have a berry or mango taste, and few/no calories and contain no sugar.) With something in my stomach, I then take the Prednisone along with Vites A&D, C, B12, E, Garlic, Zyflamend (a "natural" anti-inflammatory), Turmeric/Curcumin, adrenal supplements. I then relax for a little bit, then move around until I'm loose enough to do light exercise. I bounce or jump on a mini-tramp for an hour, to get circulation going and reduce inflammation. I then soak in an Epsom Salt/Baking Soda hot bath for at least a half hour, and scrub legs, arms and belly with a massage-type brush (again to promote circulation and encourage reduction of inflammation. I drink 2 or more quarts of H2O or ginger water while in bath. I then have a few bites of organic sauerkraut for lunch on a 1/4 head of lettuce, with sprouts, Apple Cider Vinegar and a little flax oil. I take a probiotic capsule, maybe have another cup of matcha tea.
At night, I have a little broth or same as lunch, and have more gelatin cubes when needed or when snacky. At night, before bed, I have Zyflamend and Turmeric/Curcumin, and more adrenal supplements. I'm trying to do intermittent fasting, and/or be on a super anti-inflammatory, reduced diet (no: gluten, grains, sugar, dairy, nightshade plants, fruit, caffeine) So far, I seem to have a slight but noticeable improvement daily except when vary the above. I'm going to keep trying this and see how it affects my lab tests in two days... I'll go over it with my doctor next week. I just really want to get off the prednisone... wish me luck!
Rport
3 March 2019
alib123, curious how the fasting etc... worked for you? I was diagnosed with PMR about a month and a half ago and am now on 20 MG. Of Prednisone! Would like to get off before I have the bad side effects! I am trying the low inflammatory diet, no caffeine, no sugar, wheat etc. lots of vitamins, exercise, but I am still in pain, better some days! Could you send a link on the fasting information? Thank you! Hope you are feeling better!
Kawill321
3 May 2017
Hi Debbie Lou:
After 9 months of mystery pain and visits with multiple specialist drs., tests, etc. My GP mentioned PMR. Upon researching it fits me to a T. I'm not sure having a name to the condition helps any, but in some ways it does. I have been referred to consult with a pain management specialist but don't know how I feel about long term steroid use. However, I have gone from being an active healthy preschool and yoga teacher to barely being able to move through my day, completely spent by the end of the day and ready for bed by 8! If you'd like to share your experiences, I'm interested in how others are managing and dealing with this transformative condition. Peace. KW
Debbie Lou
4 May 2017
Hi. I have been on prednisone now for over 2 months. It helps s lot. But there are side effects that are worrisome. But for now thsts what is helping. Rheumatologist hopes to get me in remission and eventually get off meds. I gobtonwater therapy too. I get blood work biweekly and EMG on my muscles. I'm hopeful. That I'll be okay eventually. At least I know what it is and I'm receiving treatment. Hang in there.
Kawill321
4 May 2017
Thanks Debbie! I just joined a pmr support without steroids on face book. Since I have not taken steroids except for a local injection in basal thumb joint, I'd rather not. But this truly is a challenging condition! I am always looking for the gift in my struggles. As a student of Ayurveda and soon to be practitioner I'm trying to delve into imbalances and correct on a deep level. To be pain free would be a gift indeed! Blessings and wellness!
frosty gray
17 July 2017
Debbie Lou
This condition needs to be supervised by a rheumatologist. No one likes to be on medrol or prednisone but there are some things we have to do inorder to be able to move and function.
When people ask me what PMR feels like I tell them its like wearing a concrete jumpsuit with a 100,000 fireants inside the suit, while having your muscles shredded and someone putting a blow torch to the suit to heat it up! They get the picture real quick. I think that medrol saved my sanity, and am able to reduce the dose to 4 mg a day. I was diagnosed in June 2015 and through 5 doctors visit was able to find the answer. It is not an easy condition to diagnosis as it is not seen or studied in medical schools.
This condition can be caused by injury, (fall, car accident or other trauma), stress, virus or medication.
I am better than I was a year ago but still have a few months to go. By the way I woke up one morning and could not move any of my muscles and laid in bed planning my funeral. Strangest day of my life.
Onward and Upward I say!
Good luck finding a good rheumatologist
Frosty
Monica Gale
22 Aug 2017
Hi Debbie I am 73 and just been diagnosed with PMR, they have put me on 15mg of prednisolone. Just wondered if this was a low dose and what I should expect. I am worried about the Grand cell arteritis does anyone know how long this takes to develop. I was a very fit 73yr old woman I excercise daily but this certainly knocked me for six, but I am not giving up. Been told I will have to take prednisolone for 2yrs.
Monica Gale
22 Aug 2017
Hi Debbie I am 73 and just been diagnosed with PMR, they have put me on 15mg of prednisolone. Just wondered if this was a low dose and what I should expect. I am worried about the Grand cell arteritis does anyone know how long this takes to develop. I was a very fit 73yr old woman I excercise daily but this certainly knocked me for six, but I am not giving up. Been told I will have to take prednisolone for 2yrs.
Debbie Lou
22 Aug 2017
I've now been on prednisone for 8 months reduced down to 10 milligrams daily plus 2 other non steroid anti inflammatory drugs. I still have stiffness and pain. Mostly in my legs. Some in arms. Trouble going up stairs etc. I go back to rheumatologist next month. I went from being a very active 68 yr old to just existing.
Monica Gale
23 Aug 2017
Debbie I have only been on the medication for 3weeks. did you get the symptoms back at all whilst taking the higher dose of Prednisone. I have read were people get there symptons back even though they are taking the medication. At the moment I am only under my doctor's care but he has been in touch with the hospital.
frosty gray
23 Aug 2017
Hi
If you have PMR the only treatment is prednisone or medrol. It will not benefit you to go to a pain managemen doctor as they will suggest exercise and pain meds. A person that focuses on immune conditions is the one to monitor your condition. If any relative has arthritis or psoriasis it would be a good indication that you have an immune condition. With Fibromyalgia exercise makes the condition worse. They don't want you to know. Prednisone does not help Fibromyalgia.
Good wishes in your recovery
Frosty
Debbie Lou
23 Aug 2017
Yes my pain is still there as my rheumatologist tried to reduce the prednisone. I'm on 10mg and I do have pain but can function. I am constantly having bloodwork etc.
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polymyalgia rheumatica, diagnosis
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