After 5 years, WHAMMO!
Posted , 15 users are following.
Hi all,
71 year-old male, 5th year into PMR, and have had a relatively easy time with it so far. Started at 50 MG, got down to 0.5, and had to up it to 1.5MG about a month ago. I've had a few minor flares, but nothing major until this AM.
Some background: I damaged my rotator cuff about 6 weeks ago while using a chainsaw to clear up some brush. Since then, everything has gone to pot. Shoulder pain and fatigue -- a lot of fatigue.
But it's been 6 weeks since the injury, and the pain of the rotator cuff injury is a bit better -- so yesterday I went outside and returned for a small bit of yard work. I used a chainsaw, loaded some pine branches onto my pickup truck, and hauled them away. Remember, I had been doing this for weeks prior to hurting my rotator cuff with no PMR side-effects other than the rotator cuff injury.
But last night was awful. I moaned turning in bed. This AM I felt like I did 5 years ago when the PMR rose its ugly head. Everything hurt. All my muscles, my joints -- everything. And the fatigue is debilitating.
After a lot of thinking, I decided to take 5 MG of prednisone. So far, only minimal improvement (after 4 hours).
So what do you think? Should I keep it a 5 MG, go higher, or go back to the doctor (who is trying to get me off the prednisone?)
Thanks all you marvelous people!
0 likes, 31 replies
BettyE bob73443
Posted
What does your GP say? Some, when a small increase doesn't control the pain, are advised to go to 20 for a short ( no more than two weeks ) and then try again to reduce.
Not meant as advice, of course... just for consideration. Worth an ask.
I've never used a chain saw but do use a strimmer that hangs on my shoulders via a belt. I know I could not have used it while on PMR with its muscle weakening side effects. It does seem unfair that those of us who have always been active don't seem able to transfer our muscle strength while on Pred.
To finish on an encouraging note.... I had PMR for five years was able to resume a lot of my physical work within 18 months of getting to zero Pred.
Hope you soon feel more comfortable.
lynda62707 bob73443
Posted
hi Bob, so sorry to hear of your setback.
I'm definitely not a doc., but based on what you've said, I have a "gut" feeling this won't be a long lived thing--(do lay off the chainsaw for awhile😁)!
If it were me, I'd go up on dosage (maybe 15mg) till I could confer w/doc.
good luck and SLOW DOWN!!
EileenH bob73443
Posted
Lynda has it in one: lay off the chainsaw for a while!
Pred doesn't work as a painkiller when you have seriously overdone it and are suffering from delayed onset muscle soreness which is what I suspect is your problem. You may be having a flare - in which case you may need some more pred but I doubt that is your main problem.
Both PMR and pred don't do your muscles any good - it is your responsibility to pace and rest appropriately and try to avoid this sort of situation.
bob73443
Posted
Six hours later, and I'm feeling much better after taking 5 mg (instead of my normal 1.5). I do know the difference between muscle soreness and PMR -- and this was definitely PMR -- all the classic symptoms I had when originally diagnosed. It included joints as well. I could hardly stand up.
I have to be careful about going to the doc, because he's one who promotes getting off prednisone ASAP. He'd scold me for going up to 5 mg, and he'd insist I go back down to 1.5 immediately.
So my plan is to go to 4 mg tomorrow, then 3.5 the next day, then 3.0, then 2.5, then 2.0, then 1.5 where I was when all this started.
I do think that my rotator cuff injury triggered all this. I have never had to fight fatigue until that injury and have always been able to do quite well with exercise and yard work -- again until that injury.
Isn't it possible that flares can be triggered by another injury?
Anhaga bob73443
Posted
Personally I wouldn't take pred for this. You know what caused your pain - overuse of weakened muscles - and what will make it better - time and care. Pred is pretty serious medicine and I don't think it should be taken unless really needed.Do what you would do if you didn't have PMR and had no access to pred. 😃
Flutterbie57 Anhaga
Posted
I'm in a similar situation to Bob at the moment. I injured a shoulder, no chain saw involved tho 😃. The pain in my head, neck, shoulders and butt area, just got worse for over a week. I felt worse than I did when I was first diagnosed, with the same TYPE of pain that came with PMR. I was on 5mg at the time. I was away and needed to fly home for a few hours next day. I was concerned more about the frontal head pain so I took 10mg the day before I flew. By mid morning next day I was feeling amazingly relieved, so I thought that would definitely indicate it was a flare. I went back to 5mg next day, but a week later I am back in the same painful situation. I am off to my Doctor tomorrow to get ADVICE this time. My Doctor is like your Doctor, Bob. I expect I will get scolded too. Doctors main aim is to get me off Prednisone. I have to toughen up and get more assertive , because I already feel like a naughty school child before I go. I will let you know what advice I get from the paid professional. 😃
nick67069 Flutterbie57
Posted
Dr job is not to get you off pred, but to help you. Don't feel" like a naughty school child " ( although it sounds cute), you are the one with pain, not your doctor.
It sounds to me that you may need just a tad above 5mg to manage your symptoms, but I am not a doctor, so cant tell you what to do; however, I would take higher dose for few days and then drop back to ~5.5 - 6mg and see how it feels. PMR is like tides in the ocean with ebb and flow - so we have to adopt with it.
EileenH Flutterbie57
Posted
Ditto what Nick says.
His job is to help you manage your symptoms in the best way - and if that needs a mg or more pred that is what it means. Better 1mg more than getting into a flare and having to go to much higher dose. PMR lasts a long time - only about 40% of patients are totally off pred after 10 years (yes, TEN) but are at a low dose usually.
bob73443 Flutterbie57
Posted
I certainly wish you the best. as a follow up on my own status, I treated my flare with 5 mg for 1 day then 4 mg for 2 days then 3 mg for another day. I'll take 2 mg today and then return to 1.5 tomorrow.
I started feeling normal after the 2nd day at 4 mg.
so far my response to the flare had worked.
to be honest I was very depressed at the onset of the flare. it was bad. I was wondering if I'd have to go back to 20 mg or worse.
but thank God I seem better.
I hope the same for you anyone else that experiences these flares.
as for the docs, mine argues until I show him some of the information I obtain on this forum. then he reluctantly yields.
best to you
Flutterbie57 bob73443
Posted
I wasn't expecting a good response from Doctor today, but I wasn't expecting the response I did get. My Doctor had a melt down. Doctor is very anti steroids !!!! She is worried she will be taken to task for not getting me off them. She could not believe that I would 'choose' to still be on them for 4 years. They are poison she said, poison. She gives them to patients to help with the pain when they are dying. She stated that steroids cure many types of pain, so it probably wasn't a flare up I was even having. She thinks I never did have PMR because I am still getting pain after 4 years. Reality is, I have to change Doctors. I came out of that office today feeling like I had been treated like a drug addict !
Flutterbie57 EileenH
Posted
Is it correct Eileen that British health now recognise that PMR can last for 5 years ? Do you have any statistics about what dose patients may still be on at 5 years ? Would they be on very low doses too, like at 10 years.
Flutterbie57 nick67069
Posted
Thanks Nick. Reality is, I get treated like one (naughty school child). I did stand my ground. I quoted some information from this site, which did not go down well. I came out of the Doctor feeling a little traumatised. I will change Doctor !
BettyE Flutterbie57
Posted
Looks as though you have an arrogant, limited doctor who thinks that medicine is just a collection of statistics set in stone. Good doctors have imagination and intuition and inspiration as well as book knowledge.
In the UK we are suffering from "targets" which means professionals get Brownie points for conforming to accountants views of efficiency.
Hope you find a proper doctor.
EileenH Flutterbie57
Posted
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
http://rheumnow.com/video/dr-kathryn-dao-steroid-duration-requirements?utm_content=buffercb736&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
The first 2 links are to articles about the research, at the bottom of the first is a link in blue that then shows the original publications if your ignorant and scaremongering GP doesn't like medical media reports. The third link is to a video of an interview with a renowned rheumatologist about the presentation of the work at the US meeting of rheumatologists. It speaks for itself.
There is a paragraph in the first link:
"... Only 19% of patients discontinued glucocorticoids by 1 year after the onset of PMR, 37% discontinued by 2 years, and 50% discontinued by 5 years. Only 58% discontinued glucocorticoid use by 10 years after disease onset. At 10 years, however, at least 97% of patients reached a glucocorticoid dose of <5 mg for 6 months."
The main message here? 42% of patients still required pred after 10 years. Your GP is so out-of-date it is scary. And if she is so terrified of her patients being on the only available medication to manage PMR pain and stiffness for as long as THEY need it, not how long SHE thinks they need it, would she please explain why she bothers prescribing it in the first place?
Does she tell her RA patients that they must stop taking methotrexate because it can lead to developing cancer in the long run, can damage the liver and the lungs? She doesn't and she wouldn't. Does she tell patients not to use ibuprofen because it increases cardiovascular disease risk? Or is associated with gastric bleeding? I doubt that as well.
But pred, used properly, is the only financially viable option for managing PMR, works well and doesn't lead to excessive adverse events and most can be managed when you know how. Leaving a patient with unmanaged PMR inflammation increases the risk it may progress to GCA - no choice there, pred or risk going blind - and allows ongoing damage to the cardiovascular system due to the inflammation.
Those links are for work from a team led by a doctor (now retired I believe) at the Mayo in Rochester who has forgotten more about PMR and GCA than she has ever learned. Once you have found a better doctor, which shouldn't be difficult, I would print out the references and tell her to get educated before she upsets more patients by mistreating them on the basis of her ignorance of up-to-date medical literature.
Flutterbie57 EileenH
Posted
Thank you, thank you, thank you Eileen. I will be printing out information and taking it along to my first session with a new Doctor. I have never experienced anything like I did today. I had to go get some Homeopathic rescue remedy to calm my nerves. Then I came home and had a Pina Colada and a chocolate bar !
EileenH Flutterbie57
Posted
Think I'd have been looking for the Pina Colada first - or even something stronger!!!
She may have been having a bad day - it is a difficult job, but unreasonable prejudices belong at home. Not in the office. Do you have a complaints procedure? In the UK you can do it via the practice manager, the senior partner or the health board. With a bit of luck they get their ear clipped for being unprofessional.
Silver49 Flutterbie57
Posted
That's appalling and very unprofessional. I would agree with Eileen and think about putting in a complaint. At least you can sound off here and get the appropriate support, advice and information. It must be awful for someone else who has no one and nowhere to turn. I hope you manage to find another more sympathetic doctor quickly. The last bit of stress you need at present is a doctor who is basically giving no care and piling on the stress.
Anhaga Flutterbie57
Posted
What a horrible experience. I hope you find someone better very soon. Sending a private message.