Recovered from PMR: Hi , I’m new here. Just thought... - PMRGCAuk

PMRGCAuk
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Recovered from PMR

Hi ,

I’m new here.

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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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.

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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.

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Thanks for taking the time to post. So glad for you 🥀

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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 .

Good luck

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Nice to hear a success story. Thank you.

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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!

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So awesome to hear you recovered. I will say this site is informative but does not seem to give a lot of hope. I now know one can recover

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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!

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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.

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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.

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Forgot to ask. Are you still on pred?

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No -been off since September 2016!

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...and just to prove my comments in previous reply ...

healthunlocked.com/pmrgcauk...

...

healthunlocked.com/pmrgcauk...

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Such a lovely smiley photo of you. X

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That's good to hear from a newly diagnosed member of the forum, may your good health continue!

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Well done. I appreciate it was hard going but you got therein the end❤️

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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!

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Thanks sniggi!

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Always nice to hear a success story and how kind of you to send your positive message and advice to the rest of us now that you are PMR Free.

Hope you stick around and keep getting messages from the forum so you can give some advice for words of wisdom to us in the future too.

It's always good to hear from people who have won the race and have the tips for that final wobbly sprint over the finish line.

Well done you xx

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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.

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Cheers! You should be feeling fabulous. Thank you for sharing your news. We are all on the long road, so it is great to hear that there is an end.

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Great news and thanks for posting this uplifting message Sniggi. 🌷

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Great to read a positive post - thank you

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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 ........... !!!

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Oh wow! What a wonderful message. Thank you for sharing.

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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.

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Wonderful! So happy to hear these stories. Gives me hope!

Wishing you continued healing.

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Thanks,feel its good that everyone tells their story to get the complete picture and show there is some hope!

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That is awesome in two years. Enjoy life

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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.

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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."

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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. :)

Karlin

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..what is Ragnar’s reduction?

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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.

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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.

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I also feel the shingles shot gave me my PMR. Approx. four weeks after receiving the vaccine I came down with PMR. I am sure there is more of us.

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I’m sure a nasty upper respiratory infection while moving, retiring and getting married, all added up to the onset of PMR.

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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).

Congrats again!

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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!

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Congrats! Me too, there is hope! I take vit. D every day.

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I get pain under my breast like a tight band...is that costochondritis?Do you know if it is linked to pmr?

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It's one of the lovely add on's. I had it for 3 mths in year 2. It's inflammation of the cartilage.

It's not pleasant but fades and otc painkillers usual.treatmemt.

nhs.uk/conditions/costochon...

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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!

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So good news Sniggi- gives us hope!!

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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.🛴🌸

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Hopeful! Thank you.

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Thanks Sniggi. I too had PMR for 4 1/2 years. Took about 12 months to taper the pred, with a few blips on the way.

I take Vit D daily. All the best to everyone.

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Thanks for sharing. Always good to hear this!

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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.

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Hi 43. Rooting for you! Have you escaped the diabetes? I hope so. If yes, how please?

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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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