Just thought to share a hopeful message that recovering from PMR can happen, even though it feels like you never will. I was on Prednisilone for 4 years and finally came off when on a very low dose didn’t seem to make much difference. Took Ibuprofen and sometimes Paracetamol to ease the withdrawal (which felt like a relapse).
Left me with costochondritis (sternum pain) but eventually resolved. Harder to lose the steroid weight however!
Check your Vitamin D levels at same time as ESR and CRP as there was a corelation in my case. Interesting that no doctors saw that!
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Sniggi
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That's what we like to hear!!! And long may it last.
We do say quite often that vit D should be checked and sorted if it is low - it isn't unknown for low vit D to cause very similar symtpoms to some of the PMR aches and pains.
Just scanning all these postings looking for comparable symptoms. Diagnosed with pmr a couple of weeks ago. Thing is I am not convinced. Yet anyway. How do you know its pmr over low vitamin D levels? Or fibromyalgia? Just hope the rheumatologist next week will enlighten me. In the meantime the gp has rung me up to ask if I have started on the Prednisolone and said if I don’t take it I can go blind which is making me panic... but my inflammation blood test proved normal ... but I am getting headaches and feel nauseas but frontal headaches which I think are sinus related and not radiating from the temporal lobes... hurry on next weeks appt with Rheumatologist. How do you know for sure its pmr. I have shoulder scapula pain but have no trouble lifting my arms.. Thankyou
Hi Nellew, I just found this message but it's on an old post so you may want to cut and paste it into a new post you compose. That way everyone will see it and you should get more responses.
The Dr can test your vit d level- I was deficient and had extra strong 6 week coutse. Fibro will usually response to some extent to pain killers and a low dose tricyclic antidepressant. I take both for fibro and they did not help the PMR pain and stiffness at all . In reference to the inflammation markers. Around 20 percent of people with PMR never have markers above normal range.
A short trial course will usually provide a degree of certainty if the response to pred is experienced in a week or two. I felt a difference in hours. It isn't a condition that has one specific test unfortunately so it's a matter of eliminating other things then taking pred to see what the response is.🌻
One of the things they will look for is a response to the pred. The headaches with GCA vary - and some people have frontal headaches which make them think it is sinuses causing them. Your response to pred will be a part of the picture for the rheumatologist so it is worth trying it If it isn't necessary you can just stop it after a week or two, it is only long term use that means you must taper.
That's very good news sniggi. It provides hope to me entering my year 4 at 6mg.
I had my vit d checked at diagnosis and it was low. I think it was was 25, 000 or 50,000 iu I had weekly for 6 weeks and it did seem to help enormously.
That’s great to hear. So pleased for you . I’m approaching my third year now and seem to be stuck between 7 and 8 , have good days and bad like we all do . This forum has been a god send to me , with some very knowledgeable people on .
That’s very encouraging to hear. Thank you for taking the time to post. I’m 4 and a half years with PMR and recently had to increase Pred to 12.5 after having got down to 7mg. Keep well!
We do tell people that PMR is self-limiting and for 95% of patients will burn out and go into remission. But once people have recovered they do tend to hi-tail it into the sunset, not wishing to be reminded of what was a rather dark period of their lives.
Some remain to help with the work the forum does but inevitably most comments are from people who haven't gone into remission yet and the vast majority of users are seeking ways of managing where they are at present! If you can think of a way of injecting more hope do suggest it!
I do believe my grandmother, who also had PMR/GCA did recover in 1-2 years; she was about 71 or 72 when diagnosed after taking the bus to her town's ER (even though there were family and friends who would gladly have driven her); fortunately, the ER doctor had seen what she was complaining of before, and immediately knew the diagnosis.
I don't think she took prednisone for much more than a year. I remember her up on a ladder, scrubbing walls with the prednisone boost. She complained of needing some new clothes because of weight gain. She was however a stoic lady. She went on to live to 92, remaining independent in her own apt. with my parents nearby for help if she needed it until the last few months of her life. She was very stoic and never complained. Passed away very peacefully.
I’m sorry to hear you feel that way. There are a few of here who have stayed to confirm there is life after GCA - and I mention GCA specifically because we all had that.
I think many who recover from PMR/GCA decide they no longer need any further help, and just want to get on with life maybe forgetting what went on before.
I hope you will still be here once you are in remission to prove to others there is hope.
Great news and good to hear others experiences. We all expect things to be perfect when we come off pred. My end experience was similar in terms of brufen etc. The steriod injects I had in my hip and shoulder to resolve the residual bursitis have truly been like a miracle!
That is really interesting as I also have just come off pred after four years. thought I was having a flare but when ibuprofen knocked the pain on the head then realised it wasn't pmr. How long did you need to take the ibuprofen for, am a bit worried that I find if I don't take one every night then the next morning is pretty tricky but obviously don't want to be on ibuprofen for a long period of time. Interesting about the vitamin d, will look at that.
Hi It was great to read your good news this morning and very encouraging. Thank you so much for sending in your post. Onwards and upwards ........... !!!
Hi,I too have recovered (at least until now!) from PMR.I had it for say about 2 years,tried every type of alternative before succumbing to steroids.I started on 15mg and was immediately 80% better and worked my way down in 10% intervals as quickly as I could without relapsing. After say a year and a half during the very hot summer of last year and consuming lots of yeast extract (both may have been coincidental) I was able to give up the last half a tab (1mg) and have been pretty much ok ever since.
Thanks, yes - of course the steroids helped incredibly but there is always the worry of side effects so it is good to be without them.Of course it could always re emerge this mystery disease.
how nice to hear this! I have taken Vit D for low levels for years, but then I've had anemia for years also. The one thing I have NOT had is stress fractures, and now 3 just since beginning 20 mg. a day in Oct last year. Using fosamax, but the dr. is going to suggest the once a year infusion, I think. The cost of forteo in the US is terrible, and I am just inches from the dreaded "donut hole" in our health insurance system. It's just money, right? Thankfully I can afford it. But this is another entirely different conversation! for now, I am pain free, loaded to the gills with medications and today is a good day. I wish everyone on this site a "good day today."
Hi all: I thought I would add another positive story to Sniggi's -- I do check in regularly and post now and then, but not as frequently as when I was dealing directly with PMR. I did prednisalone for two years and by then, was able to come off, though it took another year or more to get reasonable flexibility back and relearn how to walk normally and so on -- and I have a permanently dislocated collarbone which was almost certainly related to the joint issues that come with PMR. I've been off preds around 7 years now. I always have found the forum to be invaluable especially as I was around 20 years younger than what was then considered the 'average age of onset' and it was so helpful to find people of a wider range of ages and experiences dealing with PMR (and GCA). I know not all people are able to get off preds and other meds within that timeframe. I remember too how knowing of people here, who came off preds eventually, gave hope! So I am another of those stories.
I found Ragnar's Reductions and other advice and insight from the forum to be far more valuable than anything from my rheumatologist who really thought the condition ' should' fit a cookie-cutter diagnosis and treatment. I reduced far more gradually than prescribed, even then, had difficulties at times, but came out the other end eventually.
Ragnar is a Swedish gentleman who was the first patient to spread a reduction step over a longer time - he had got stuck at either 3 or 5mg (can't remember which) and flared every time he tried to drop by the standard 1mg. By taking the 1mg lower new dose on one day of 3 or 4 and repeating that a few times and then taking it on 2 days and so on he was able to drop the dose and did get off pred altogether. My Dead Slow and Nearly Stop taper was based on that when I started it - and over the years it was refined and extended. It has been used a lot - as have the 2 or 3 other variations that are in circulation on the forums.
Vitamin D is always low when you take prednisone and my doctors never mentioned it. PMR is a terrible onset. I still think the shingles shot gave PMR to me.
Your story is just what I needed to read....thanks so much for sharing! I wish you a life that is PMR/GCA free from here on in.
I don’t often think of “the end” of my PMR story as I’ve only “served” a year and a half of time with PMR, and am currently feeling stuck at 9.5/9, but your words are a hopeful reminder that eventually my life won’t be focused around medication, tapering, and the other medical conditions that have emerged (knee replacement, shoulder issues). I will say I’ve enjoyed the last few weeks which have been particularly good affording me opportunity to enjoy golf once per week and a short time on the tennis courts once per week (slow and steady incorporation of these activities).
I am so glad you are able to golf once weekly. I sometimes feel if we get our mind off the PMR we tend to feel somewhat better. I am hurting today but plan on going to exercise class where I will be distracted and try to forget about it. Enjoy the golfing and tennis!
Thank you so much for the encouragement. I have definitely worried about the weight gain and I’m hoping to control it with low carb and intermittent fasting. I will definitely ask about the vitamin D, thank you!
Well done Sniggi. I too have come off pred for 6 months now The only bad bit I still can’t move my legs but my rheumi assures me he is convinced pmr has gone and the painful legs is due to osteoarthritis. He now has me going to physio to get the legs moving but it is a long job I think. However I suppose I am lucky to have shaken off pmr took 3 years. I just long to go walking but am restricted to about 100 yards !! I also bought a pedal thing so I sit in the chair and cycle away so am not giving up even though I won’t see 80 again. Love and good wishes to all of you.🛴🌸
Hi Thats good for you Sniggs and encouraging for me., I'm hoping i am now near the end, I got down to 2mgs steroids a day a few months ago,only to go back to 6 mgs as my hands and wrist swelled up every night and I had to wear a brace on my right hand to enable me to garden etc. that lasted until the steroids kicked in so it must have been pmr. well now down to 1 1/2 a day doing it slower this time. only symptons are I have been tired through the day must be withdrawal.
I"m looking forward to being free of it in another couple of months.
As to vitamin d I take adcal and alendronic acid as i broke my hip 2 years ago due to osteoporosis caused the GP. thinks from the steroids. i also had diabetes for a while also caused I am told from Steroids. I am on holiday in the sun for 4 weeks in the winter and in the garden a lot of time so hope I am getting Vit. D that way. any way optimistic to it dissapearing for good soon, as I have heard it can come back.
Hello. When i was diagnosed with diabetes i was sent on a course at the hospital. the diabetes nurse told me it would probably go when I was off steroids, as they affect the pancreas. Same as my GP. had told me. So I cut out sugars, luckily lost some weight. A few months later the steroids were down can"t remember how many I was on, but my blood sugar went back to normal,as my pancreas must have too.
So I resumed my normal diet, I am now a few pounds heavier, but hope the weight will go, when I am completely free of the steroids. My GP. tells me they still call me diabetic, until 2 years have passed with normal blood sugers.
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