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Successfully treated for Polymyalgia Rheumatica
Please allow me to introduce myself.......I am a retired 62 year old male, in Stage B heart failure and diagnosed with PMR in October 2015. Because of my occupation, I was required to have physicals every 6 months and EKG's every year after the age of 40. For 40 years I was active, jogged 15-20 miles per week, watched my diet, BP was mostly normal, cholesterol normal, weight normal....basically in very good shape. August 2012 I had a stent placed in my LAD and at that time they discovered I had had a heart attack sometime in the prior 10 months (the time since my last physical and EKG). I was shocked. BTW, I was jogging the day before they implanted the stent with NO symptoms. A story for the cardiac board.......
Fast forward to the fall of 2014......when waking in the morning, I was experiencing full body aches and pains. I told my wife it felt like somebody beat me with a baseball bat. The symptoms did get somewhat better during the day; however, I found it getting more difficult working out AND recovering from a workout. I could never recover....the aches, pains, fatigue and stiffness never went away. I thought it was cardiac related. Explained the symptoms to my cardiologist, he said it could be because of a weakened heart plus medications. I was taking Lisinopril and Bystolic. He thought changing the beta blocker would provide some relief.......it didn't. After heart echo's, MUGA tests and a cardiac MRI, it was determined my heart condition wasn't the cause of my aches, stiffness and pains. BTW, I did consult with my PCP throughout this whole process. All my blood work came back normal. No signs of trouble...period. He didn't have an answer other than "watch your diet and get more exercise"! I told him in the most polite manor I could "Doc, I've been doing that for 40 years!!". He said maybe I should see a rheumatologist.
October 2015 I saw a rheumatologist and although all my blood test came normal, based on my symptoms he diagnosed me with PMR. BTW, by this time I was in pretty bad shape. Couldn't do any type of exercise, even hated waking up at night or in the morning because the pain was so bad. He place me on 15mg of Prednisone and said I should start feeling better in 4-5 days. I filled the script and took the first dose in the car!
Upon waking the next morning, I laid there in total disbelief......there was NO pain. I actually had to pinch myself, thought I was dreaming. I couldn't believe how good I felt. Hadn't felt that good in a long time. Finally I had an answer.
Since the initial dose, my rheumatologist has tried to wean me off the Prednisone with little success. I did get down to 2.5mg's last month, but unfortunately had a relapse ironically while visiting the Rochester Mayo Clinic for a cardiac and PMR evaluation. Although I've never had any side effects, I did not like taking the Prednisone....don't ask me why, could be the fact that it does shut down the adrenal glands! The Mayo rheumatologist did put my mind at ease by explaining he's had patients on much higher doses for over 6 years and never NOT had adrenal glands recover. He recommended I increase my Prednisone to 10mg per day. I did and it did help somewhat, but I did not recover 100%. Three days ago, my rheumatologist increased it to 15mg and today I am finally feeling better. I'll stay on this dose for 3-4 weeks and slowly begin the weaning off process all over again.
Sorry for the long post, but hope this will help others who may be struggling with this disease and treatment plan. BTW, I have read many posts on this board regarding PMR and appreciate the input from so many on this disease and their personal experiences. I hope my experience has help as well.
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I have had the diagnosis of PMR for 10 months now and I’m dealing with SEVERE weakness/fatigue. I still have stiffness and some pain but the fatigue is debilitating. I’m on 5mg of prednisone and just started Methotrexate two weeks ago and don’t feel that it’s helping yet. ANY SUGGESTIONS?
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2 ReactionsHello @daenika87, Welcome to Connect. Sorry to hear you are struggling with fatigue along with stiffness and some pain with your PMR. 10 months is a relatively short time to get down to 5mg of prednisone compared to what others have shared. Do you mind sharing what your starting dose of prednisone was and if it got rid of all or most of your pain and stiffness?
This may sound old school but try increasing the green leafy veggies in your diet. For the last 6 months I have been doing pretty well but have found reducing prednisone a problem. I have been trying to reduce my three mg daily dose of prednisone and may just have found a way. Reducing by 1mg was too big a jump so tried 1/2 mg but that was too hard. Now I am reducing by a 1/4mg. i take 1 and 3/4 mg a day. After an initial period of upset (one week) I leveled out and I am keeping my fingers crossed as it seems to be working. Good luck to all and keep smiling.
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5 Reactionsfatigue and weakness for me too, I had to increase the prednisone dose from 5 to 7.5mg and it seems to have helped. I think I was tapering too quickly in an effort to get off the stuff. Switching now to .25mg taper per month. Control of the disease appears to be an extended process with plenty of side effects. For me the side effects of the disease and meds are increased upper body fat, thinning skin, muscle loss and weakness, fatigue, scintillating scotoma/migraine, and an increase of skin infections. Hopefully slow is the going to be the answer and I hope my adrenals start picking up the slack as the dose decreases.
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4 ReactionsMTX truly takes 2-3 months to really know how it will work. I’ve never been on a higher dose (15mg) of Prednisone. I’ve just started now on 9mg for 1 month and take MTX 15mg weekly as well. Hang in there!
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1 ReactionI believe they ordered 20mg to start and it definately helped the severe pain that I was in at that time. I've been in 40mg for a hearing loss in my left ear from PMR too. I'm pretty stiff on 5mg but they have added methotrexate so I'm hoping that will begin to help. If it doesn't help in three months they will begin injections.
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1 ReactionHave you found anything that helps the exhaustion? The exhaustion is as debilitating as the pain...😢😖🥴😵💫
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2 ReactionsNo, I think it is the price of too quick a taper for me. I do have more energy since upping the dose of Prednisone but still have muscle weakness and soreness.
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1 ReactionMy father has PMR and I have a different inflammatory arthritis along with other chronic pain conditions. He gets debilitating fatigue from PMR flares. We've both been taking low dose naltrexone (LDN) for fatigue.
It's a little off the beaten track and harder to obtain, but I thought I'd mention it. It's by prescription from a compounding pharmacy because it's a fraction of the regular doses of naltrexone. By micro-dosing it, research has found that it seems to increase the amount of endorphins and regulate glial cells (which when overactive contribute to chronic pain).
It's been used for years off-label for chronic pain and fatigue, fibromyalgia, as well as some autoimmune conditions. But it seems to me it's gaining more traction because people are looking at it for use in long COVID.
It can be difficult to get an RX for it because many providers aren't aware of it unless they're working a lot with chronic pain patients (in my experience), but it was worth it. I can't vouch for if it's improved my chronic pain, but I know it's helped my fatigue. It helps my dad as well; or at least he thinks it does.
Oh, another huge plus: Very low risk of side effects.
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1 ReactionSounds like a good idea, and I hope slowing the taper helps. When my dad got to 7.5 mg, we had to slow the roll because he also had a major flare trying to go to 5 mg. He went successfully to 6.25 mg (this had to do with the various denominations of tablets we had at home). It'll be a full month he's on 6.25 by the time he's tested again this weekend.
Now the plan is to start dropping by .25 mg. His rheumatologist normally has him get labs every 2 weeks.
He takes low dose naltrexone (LDN) for fatigue.
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