... this condition to talk to about their experiences?
Hi Debbie, In 2011 at the age of 69 I came down with PMR. It came in four stages and responded to Prednisone within an hour. The first stage was both my leg muscles, knee to ankle. I woke up at 4:00 am with about 7 or 8 out of 10 pain which went away during the day and was gone by 9:00 pm. The cycle started the next morning at the same time. My doctor thought it was due to my statin and changed it which didn't help. After a month or so it went away. The next stage about a month later was whole body pain from my feet to my hands on both sides, same time cycle and same intensity. The doctor recognized it and put me on Prednisone which took the pain away in an hour. I needed to take the minimum dose to be free of pain and not cause cataracts, a possible side effect. Over the next months this stage went away and the 3rd stage came which was shoulders, arms, and hands. After that the 4th stage was the outer 1 inch strip and outer two fingers of both hands.
It hasn't come back but I eventually got cataracts, got artificial lenses and don't need glasses anymore. I hope this info helps. Best of luck, Dave Young
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
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!
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.
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?
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).
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.
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.
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!
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.
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?
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.
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.
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