I turned 50 in August and was diagnosed with PMR in October. Slightly distressed because it sounds as though it should be rare at this age and I have always been fit and healthy. It followed a bout of covid and then an ill advised flu jab - I’m interested in knowing how long recovery takes and if I now have this for life. Anyone out there first diagnosed at 50?
I’m on 15mg of pred coming down to 12.5 and then 10mg. I still have aches around the back of my legs and pelvis area but it is liveable with. I want to begin exercising again but feel nervous.
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Risotto2
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Hi - I was 60 but mine followed my first ever bout of Covid. Previously healthy and active.
Someone else more informed will comment on your tapering. However, you do need to rest much more than you think you do in terms of exercise. Someone told me that my muscles have been attacked and need time to repair. Unfortunately it does take a while - I think I rested completely from exercise for about 2-3 months and then started very slowly. I really felt exhausted the next day so had to plan it so I could take time to recover. It's very frustrating.
In terms of how long it takes - you will see all sorts of timelines on here. Mine is on my bio. All I can say is there is no quick fix and patience and acceptance are the key. My head took a while to get round things and then took a dip in September when things didn't quite go my way with tapering. I'm ok now - my Dr was really helpful. 2 years seems to be the magic number but it really seems to be different for everyone.
Two years is a magic number for a lot of doctors who seem to think it suddenly switches off then - I fear not, there are many members of this forum on more like 4 or 5 years!
Many people do get it in their 50s, and even in their 40s… so not that rare, despite what you may read in the web or many doctors still believe.
Perhaps have a look at this for starters, and then a browse through the FAQs, which are posts so others experiences included rather than just stark - ‘this is what to do’ that you might expect.
My link is a bit lengthy so do hold on to it, and refer back to it as you learn more about your PMR -
Exercise is good, but not too repetitive, PMR affected muscle don’t like that. Do keep on eye on those aches - don’t let them increase - and although the tapering regime you have does come from the guidelines, many too find it too quick. So if you have an issue, don’t plough on through - stop tapering and get things back on track.
I was 54 when I got GCA. Yes, one is told it is rare but when you hang around forums for a while you find that it isn’t that rare. Yes, it is always a shock especially when, like many, one is fit and active normally. Usually the first thing we do is think, “right, how do I get back to normal as fast as possible?”. The first thing to realise is that the Pred is a safety net for the inflammation that is being caused by the autoimmune activity that is attacking your musculoskeletal bits. It isn’t a cure but the activity will gradually wane. 3 golden rules 1) Don’t see no symptoms as an excuse to get back to usual exercise and activities. 2) If you do have discomfort see it as a warning not like a bit of a stiff bit after exercising that you tough out. 3) Don’t rush reductions, slower is better to avoid breakthrough and having to go back up in dose. Guidelines given are just that, not a blueprint guarantee for every individual to get back to normal.
Start hoovering up info offered here and feel free to ask questions. It does get better, just not at the speed we want.
Hi and welcome from another young PMR-er. Well, I was back then!!
Don't feel that flu jab was ill-advised - you will need it now you are on pred as it sometimes suppresses your immune system. And even if the PMR started soon after the jab it wasn't JUST the jab that did it, it is the result of an accumulation of what are called "insults" to the immune system that have built up over years and finally one is the one that breaks the camel's back and it goes haywire, is unable to recognise body as self and turns on it, turning into an autoimmune disorder. There is also a genetic component - you need to have a set of genes that makes you more susceptible. The fact you had Covid shortly before should also not be discounted - it is thought PMR is one version of Long Covid.
Many autoimmune disorders are for life but PMR and GCA are a bit of an exception - the propensity for it to relapse remains for life but for most people, about 95%, it burns out eventually and you get off pred but it isn't possible to say how long or when. The vast majority never get it again - but on the other hand, some never get rid of it.
I was diagnosed and got pred just before my 57th birthday - but the symptoms first started the spring after my 51st, so I wasn't much older than you when it started. You have been lucky being diagnosed and given pred quickly - one of the potential causes of a long version of PMR seems to be a long delay in diagnosis or poor management of symptoms and it is thought the immune system learns its bad behaviour and then is reluctant to change back which is what seems to be happening to me.
"I still have aches around the back of my legs and pelvis area but it is liveable with" - beware, don't ever think "I can manage this level of discomfort" - because if it is because the dose of pred is too low to clear out all the daily influx of inflammation and there is some left over, it will build up over time and you risk ending up back where you were which really isn't what you want.
Exercise - avoid repetitive actions like the plague so gym stuff isn't that good an idea. At present, walking is as good as anything but be careful not to overdo it - if you aren't sure how much you can do, start with a short walk, say 5 mins out, 5 mins back. Assess next day to see if you hurt as a result. If you don't, add a minute out and back, 2mins extra. Assess on the rest day. Always have a rest day in the building up phase, it is as important as the exercise. Continue until you have a good length walk. It sounds slow - but like everything with PMR - it isn't slow when it works. Don't be tempted by the thought "I feel good so I'll do a bit more" - I did that once while building up my skiing for the season and something over halfway down the very short run I used for the purpose, the fatigue hit me like a ton of bricks and I was reduced to sitting at the side of the piste to recover enough to get to the bottom and the chairlift!!!
I found, and still find, aquafit good - but you MUST start at a low level with that too. Your muscles are much more likely to develop DOMS (delayed onset muscle soreness) and if you do, will take a lot longer to recover. Overdo it too much and it can take weeks for the pain to go and if your muscles are sore - don't think you can exercise it away, you will just make it worse and it may never recover. Everything you do in water takes 7x more force by your muscles as doing it on land - so let them get used to it VERY gently. If you swim - shoulders may object so again, try it slowly at first until you know.
Thank you - so grateful for everyone’s replies and time taken over them. My dad had it 3 years ago which aided my speedy diagnosis - I described not being able to turn over in bed and he told me to go and tell the dr what I thought it was!
Blimey - bit off sharing your dad's diagnosis so soon after!!! Loads of doctors would try to tell you you have to be his age - the average age at diagnosis is 72 and they think that means you have to be 72 to have it. Not great mathematicians your average doctor!!!
Blowed if I can see why she needed bloods - one of the problems with young PMR cases is that they tend to be a bit atypical and blood markers are often NOT elevated. Mine were absolutely "within normal range" but very raised for me.
I'm 50 too and have probably has PMR for c.3.5 years now. It's the early diagnosis that is rare as sadly many others have suffered for far longer. It supposedly does fizzle out for most but some have to stay on low dose of steroids for life to avoid flare up. The 'liveable' pain could be early warning sign inflammation is not under control so wouldn't rush into taper and forget about exercising like normal
I was diagnosed at 46, started on 20mg and now down to 1.5mg nearly 3 years in. A few bumps along the way where I overdid things and / or reduced too quickly. I found that walking worked for me but do listen to your body as it is easy for things to get worse without you realising. I found a simple diary helped where each morning and evening I scored the pain from 1-10 in my hips, shoulders and neck so I could try and spot increases in symptoms.
I got PMR at 64. After Covid. I started at 15 mg of prednisolone and tapered at 1mg a month. I got down to 2mg and then had a nasty flare.
If you’ve always been very fit and active it is hard to accept the amount of rest required. I’ve learnt my lesson. I thought I was fine, went overseas, lots of walking, lifting bags and later nights than usual. No alcohol though. I also had a covid and flu shot just before I left. I don’t know if there is a link but a few people have reported flares after vaccinations.
I love working in my garden. But I don’t do 8 hours at a time like I used to. I live in a tropical climate. So it’s hard on the body. Now I do a couple of hours and rest for a couple. It seems to work. I don’t push myself anymore and I’ve retired.
You just have to be kind to yourself and accept that life is not the same.
There is a link with vaccines - but not that one or other causes PMR, anything that stresses the immune system can trigger it if the immune system is "nearly there" after years of what are termed insults to the immune system. Eventually something is the final straw that breaks the camel's back and the immune system goes haywire, is unable to recognise body as self and turns on the body tissues, attacking them in error. It can be a vaccine, could be the illness the vaccine is to protect against, or it might be stress of all sorts, injury, environmental or chemical effects. And there is also a genetic background - a set of genes that makes it more likely that your immune system will go wrong in a particular way.
I got PMR at 48, I am 57 now and down to 2mg of steroids and doing well. I have had many ups and downs and it has taken longer because I was determined to get off steroids too quickly... and became a yoyoer... Take your time, learn how your body feels and be honest with yourself... 'living with the pain' really is not an option as this means you have gone too low and the only way forward in the end is increased steroids which is what you don't want. Find your comfortable spot and stay there for a while... then start the long road to very slow reduction, listening to your body at each stage... Good luck on your journey... we are all here with you.
I was 57 and very fit. Ran every day, , healthy food and suddenly it came on. It took 4 months of pain to finally be diagnosed last September. I was on 40mg initially and now on 2mg. I still have aching oj hands and wrists but managing. I have no idea how long this will last as it differs from one to another. All I do know is don't rush too much when tapering and listen to your body. I wish you all the very best
My symptoms started October 2023 when I was 47. I had a diagnosis ofPMR in June of this year just a week before my 48th birthday. The pain I had was like nothing I’d ever had before. But once I started on Pred things have improved somewhat.
My GP had said that I should be fine within 2 years. I know now after finding this site that that is not necessarily true.
I was once a very fit person, ( fencer, kickboxer, yoga every day, ) I have tried to bring some very light exercise back into my life. I did try to get back into my yoga first but after doing it, the next day I was in agony.
I’m not much help to be honest, sorry . But this is such a great forum with so many wonderful knowledgeable people, I’m sure you’ll get some answers.
There is a lady I came across on instagram who does yoga for pain which you might find interesting to look at . There is an app - y4p. I believe she has fibromyalgia. yogaforpainapp.com. Best wishes
You can probably continue with yoga if you treat it as if you are a total beginner and don't try to force anything to start with. I did Iyehgha yoga with PMR and no pred and as an absolute beginner - but only ever after either doing an aquafit class in a warm pool or spending time in the sauna/steam room to warm up my muscles. It was highly adapted and I used every block they had at times but it did help and I didn't hurt any more than I did anyway!
I was 53 and was getting very ill but diagnosed at 54 with biopsy. Even though had really high CRP and ESR and every other symptom. They didn’t diagnose until the biopsy was done.
I was diagnosed with PMR a year ago when I was 51.
I have had a few attempts at very slow tapering, got down to 17.5mg a month ago but my lifestyle is demanding and stressful, so found myself back at 20mg for most of past month, and even that is not enough last few days.
I hear the stressful life bit but even so, if you are needing 20mg and more, the diagnosis of PMR has to be doubtful. PMR is not the illness, it is the name given to a set of symptoms and they can have several underlying causes. Such difficulty in tapering is one of the red flags that must be taken note of.
Were you diagnosed by a GP? Have you been referred urgently to a specialist rheumatologist? If not, you should be. And a lot more tests undertaken.
But above all - you perhaps need to step back a bit from the lifestyle and reassess or you may find it all goes VERY pearshaped.
It is fair to say that the polymyalgic presentation of some forms of inflammatory arthritis is identical to "just" PMR and no-one can tell the difference at the start, however good they are. And if it is LVV/non-cranial GCA, unless they did a PET-CT they wouldn't know. The warning signs are when reducing the pred dose just doesn't work although, if you are trying to ignore the fact you are not healthy and continuing as before, that also clouds the picture.
The taper to 17,5mg was fairly straight forward, now that I’m on vit D3 and HRT, but November was demanding in multiple ways, and I was carrying on regardless, so it probably makes sense to stick with the PMR diagnosis. Thank you PMR pro for the insights.
Mmmm - but after a YEAR, you really should be getting somewhere tapering if it is uncomplicated PMR, You aren't which makes me concerned something is being missed.
Hi PMRhealth, I was diagnosed with PMR at 67, v fit and healthy. I was familiar with it as relatives had had it. Felt like typical symptoms. I spent 18 months on Pred after seeing a Rheumie but could never understand why Pred helped but never gave me much relief. I appreciated this page and have learnt so much about PMR. HOWEVER when my wrists started hurting and the rheumie said he didn’t know why, I sacked him and got a new one, about the time I finished Pred. Rhumie2 believes I didn’t have PMR but have inflammatory arthritis! So on Methotrexate. I now also have osteopenia, precursor to osteoporosis due to Pred I didn’t need and osteoarthritis in my hips. Rheumatology is a very grey area, so I am on the equivalent RA forum but still interested in this one. It also seems easier to see specialists in Australia and having private health insurance helps. Best wishes
Don't put all the blame for osteopenia on pred - the term just means that on average your bone density is less than it was at age 30! Virtually all of us here are osteopeneic and most were even before pred - that comes with age. Osteopenia is a very broad church - ranging from almost normal to almost osteoporosis and the t-score figure is the important number that shows where in the scale you are.
If you had found us at the start of your journey and mentioned the pred helped but not properly, we would have told you you needed further investigation. LORA (late onset RA) and other inflammatory arthritides can present identically to PMR, called a polymyalgic presentation, and it is impossible to identify a difference at that stage, But a bit red flag is when the pred helps a bit but not as much as looked for and tapering the dose is very difficult.
Hi PMRpro, I guess in the beginning after a gp and a rheumie told me I had PMR and it matched the symptoms, I felt maybe Pred just didn't work for everyone. DL did say she thought my rheumie should get out more when he had never heard about taking Pred at 4am! My pharmacist suggested backing up with meloxicam which my GP agreed to. Some things I learnt here my GP shared with her PMR patients. Next time I see my new GP, I will check what scale my ostopenia is on. Thanks!!
If pred doesn't work well - it is the first thing that casts doubt on a pure PMR diagnosis and anyone with a PMR diagnosis who doesn't respond to up to 25mg pred with a 70% improvement in symptoms within a few weeks at most needs more investigation. It might still be PMR but other things need to be ruled out and then an open mind kept as times goes on. There is no definitive diagnostic tool - the nearest is PET-CT before any pred and it isn't easily available, long waiting lists if you haven't got cancer and expensive. So rarely used - they try pred and once that is started the PET-CT becomes unreliable.
Can you tell me more about your wrist pain and general experience? I've had issues with wrists and knees though not necessarily bilateral.
I was in terrible shape when I was diagnosed with PMR in Oct 2022, and the pred got my markers down (CRP from 27 to 3) and made life livable, but these new pains are quite bad and totally new for me.
So while I suspect PMR wasn't wrong (a flare protocol just solved what I'd consider a flare) the idea that the pred may be exacerbating, or triggering, a co-morbid case of inflammatory arthritis (or worse, RA) is disturbing to say the least.
Pred doesn't make inflammatory arthritis worse. nor trigger it. It is also used in inflammatory arthritis for flares - but needs higher doses and other drugs manage them better with fewer long term adverse effects. So instead of a moderate dose managing PMR rapidly and well, the response is slower and incomplete and then it is difficult to reduce the dose as you should be able to in PMR.
Hi, You've had a lot of advice but I thought I'd add mine anyway. I was diagnosed PMR at a fit and healthy 72, swimming & cycling daily. I too was given the 2 year prognosis and the same 15 -> 12.5 -> 10 mg Pred reduction. I got to 10 three times and it all went wrong. So 6 months after starting on 15mg I was back again to 15 mg. At this time I luckily found this forum and found about more about tapering. Since then I've used the Dorset Lady slow taper 1 mg per 5 week cycle and no set backs. At 11mg I'm started going down 0.5mg per 5 week cycle and I will start on 9mg next week. It's the tortoise & hare tale. Slow and steady wins ! As for muscle ache or fatigue I coping again by taking it slowly. I'm down to maybe 30% of what I used to do in walking and swimming and I'm using low level Aqua Steps 3 times per week. Hoping this progress will continue. Reading this forum has helped me immensely to learn about PMR and prepare for set backs. Good luck and have patience the 0.5mg step down seems too cautious but I'm going to stick to it.
Hello, I was a bit older at 61 but I know from reading here that there are many people diagnosed at younger ages. Like you, I felt I was fit and healthy and had no other health issues so it came as a bit of a shock! I didn’t find this forum until I was about 18 months down the line and would have very much appreciated it sooner - as you will discover, it’s a mine of useful information and experience.
One thing I have picked up is that it’s very individual - what works for one person may not for others. I was diagnosed in December 2020 and took my final prednisolone tablet (of 0.25mg - very slow tapering) in November 2022. I had another year on methotrexate but that’s a bit controversial in terms of its effectiveness for PMR - it seemed to help me get below 5mg prednisolone. I was diagnosed and completed most of my treatment in Australia, returning home to UK just as I got to zero pred but I don’t think there was a significant difference in approach.
As for exercise, I didn’t have the energy for months after diagnosis but started with gentle walks, increasing distance and listening to my body. I’m now one year drug free and walk a bit further, more hills!, started weekly Pilates about 8 months ago and hoping to add to that next year. A far cry from my previous exercise regime, but I’m just happy to feel well.
Hi.I was 51 and a half at diagnosis but likely had the starts of it at least a year beforehand given all the " niggles" prior. By diagnosis I was in absolute agony withcany movement and couldn't even lift my legs or turn over in bed.
I had been very active before and when I emailed my GP I commented that I felt like I was now a 90 year old.I am now coming up to exactly 10 years since diagnosis.
The lowest steroids I have ever got to is 2, and only recently and now back on 7 due to a flare of symptoms, severe pain and stiffness.
I was told in the beginning it would last 2 years!!!! Again maybe my GP was trying to be optimistic.
Everyone is different though and you may be fortunate and the illness will burn out quicker.
From my experience I have had to very much be controlled by PMR as even if the steroids control the pain the fatigue is overwhelming.
It's four years now since I last worked , have difficult asthma and other conditions too which combined made life too difficult to cope with work, the stress of work and the inability to be able to rest when needed so reluctantly initially I had to stop but then managed to retire on ill health grounds so got my NHS and LA pensions ( not as huge as many assume ) so then I was able to rest as needed.
Of course on pred it masks the inflammation and the pain caused by the inflammation so it lulls you into feeling better and then you want to go and be your previous normal self but rest is SO important. It's boring but needed.
This group is where I have learnt everything PMR.
Reduce too fast at your peril.
By no more than 10 per cent at a time. It seemed a race in the beginning but I have realised now I will never win and slowly accepting ( only taken 10 years!!) I am likely to have to stay on lower doses of steroids for always.
Reading this back it doesn't sound very positive but it's the truth.
If you recover quickly I will be so pleased for you. If you don't you will know you are not alone.
You can ask any questions here. There are loads of links too, and both PMR Pro and Dorset Lady have done tons of research too so very knowledgeable. It all helps to make informed choices.
I was 54 when diagnosed and was a Triathlete competing at a high standard. 6 days after minor knee surgery my body ceased up and it took 4 months to be diagnosed with PMR, at which point I could barely walk 100 meters - I was in agony. After a 14 month period of steroid treatment I tapered off and was symptom free for about 2 years, during which time I threw myself back into triathlon and got back to a high level of fitness. I then had my first COVID jab and a week later I had a flare of symptoms and blood tests confirmed my inflammatory markers were up and I was put back on Pred. I've been on them ever since.
Just recently I was referred back to a rheumatologist who has said she wants to start from scratch as I am an 'atypical' PMR patient. So I have CT scans, XRays and nerve tests organized once I've tapered to 5mg (currently on 6mg).
I'm no longer competing in triathlons but I am cycling competitively and train and race hard. Cycling 150kms+ per week. I also swim but this is patchy, this is time rather than symptoms that stop me. Yes I do have a few aches and pains but I can live with them, just as I did pre PMR.
The guidance and support on here is brilliant. We are all different and we will have different approaches to recovering and coping. Listen to your body, ask questions and try things out. Take your time and you will find your 'new normal'. Don't rush to get off steroids, whilst you are on this journey they are your crutch. You will be able to exercise just take it easy. Build your strength back up just like you would after an injury.
Good morning, I thought I would message as I was diagnosed at 51, took ages to get a diagnosis as the docs said most cases of PMR start typically around 70 years old. I started on 25mg and now almost 9 years later I am on 2.5mg. I thought it was something to do with the menopause or physical trauma following a very challenging ski holiday! Got home at 7 days later couldn't move. Over the last 9 years I have had methotrexate and leflunomide to support my reduction in steroids use. And whilst not happy that after some activities I wake the next day feeling like a rhino has been sleeping on me, I do manage and can't really complain.Wishing you all the best. Anne
it’s obvious from this thread that plenty of us were fit & healthy before being hit with PMR. I’m 64 but was active & have a small farm that kept me fit.
I’ve had to face facts & have sold my flock of sheep.
4 months after diagnosis & I can function ok most of the time but I’m really not capable of any kind of manual work.
I’ve lost a lot of strength & muscle definition, but I’m hoping to try & get some level of fitness back.
I’ve discovered the hard way, that overdoing it is rather easy though. 😩
Hi I was diagnosed about the same age after many months of pain and worry. This forum is the best place for support, information and help. Yes it is frightening in the beginning, especially if your GP isn’t clued up on PMR. You will find your new normal eventually after trial and error! Exercise for me is slow and steady, gentle pilates, swimming, tai chi etc. Diet also important, low carb, low sugar and low fat, lots of fruit and veg but find what works for you. Lots of advice in the faqs and I’m sure Dorsetlady and pmrpro will give you lits if help. Don’t over think it and listen to your body.
I was diagnosed at 55 but think I probably had it for a while before that. I gradually tapered off pred, probably more slowly than I needed to, and was symptom and steroid free 3 1/2 years later and have been fine since (15 months). I feel very fortunate that of all the autoimmune diseases I think it is the only one that does burn out. The whole time I was on pred I used to walk every day, but did find other exercise or walking on sand or up hill more difficult.
hi there I was 52 when I started getting symptoms also as it seems now following Covid and co inciding with going on statins I didn’t realise at the time after waiting fir referral to rheumatology 14 month I was 53 when diagnosed - one of the gps told me I was too young to be diagnosed with pmr I told her to take it up with rheumatology my conclusion is it’s not as rare as they think in lower age groups !
"my conclusion is it’s not as rare as they think in lower age groups !"
Certainly isn't - Prof Sarah Mackie says she has several patients in their 40s, And of course - because the non-believers aren't looking for it, they twist what they see to be anything else except PMR. I'd love to know how many fibromyalgia patients would be practically pain-free on pred ...
I started to experience what I now recognise as the symptoms of PMR in my early 40s, in a flaring and remitting pattern. It was always there, but I did go through periods where it didn't impact on my life too much for months and others where I was crippled by it for quite long periods. I suspect dismissed as peri menopausal symptoms and didn't get any kind of diagnosis until November 2022, aged 64, with thanks to a very young newly qualified doctor who recognised what was going on.
I finally started taking prednisolone Feb 2022 after it all kicked off big time following a viral infection. So far, my hips, buttocks, legs, neck and the big muscles on my back have been the main area affected and I have been spared shoulder and arm involvement until recently. my arms have been hurting lately and I am scared that it might prevent me from swimming, which has been a life line for me, both mentally and physically.
How long will it last? Well, how long is a piece of string? Your guess is as good as mine. In my case, I suspect that I am one of those unfortunates who got PMR early and it will be a lifelong thing. After almost 2 years on pred, I am no better than I ever was, but the pred gives me some semblance of a normal life. I would be crippled without it. You will see a lot of people in this group who have had PMR for a very long time, but try not to take that as too much of a negative. It seems that the people who get better in a much shorter time drift away, as you would expect, and us old timers are still here hanging on because it didn't get better yet. As far as I can see, there is no way of predicting which group you will fall into.
I am also another of those who was fit and active. When the PMR kicked off, I was still cycling at weekends, swimming, walking the hills and doing high altitude treks in the Himalaya. I've had to adapt my expectations since then. You will have to become an expert at listening to your body if you want to exercise and you will need to change your expectations of yourself. You will likely discover that your stamina isn't want it was, you will tire more easily and your muscles will respond to exercise differently. Expect to take more time to recover between exercise sessions and that you will need more rest than you used to need. You need to strike a balance between moving enough to prevent loss of muscle bulk and to retain mobility, but without over doing it. I still find walking very far too painful, but I try to do some walking every day. I can use the resistance machines in the gym, so long as I keep the load low and I don't try to do too many reps, and I make sure that I don't work weights when I am still stiff from a previous session. I also find gentle stretching exercises very beneficial, and I would recommend those, even if you do nothing else. It's my belief that it is important to keep the circulation going, in order to get oxygen to those sore muscles and to carry away waste products. I used to be really good at yoga, but I find that too painful now. I have been able to swim all the way through, although people with more shoulder involvement than I have seem to find that more difficult. I am absolutely normal in the water, especially if the water is cold, I have no stiffness and can move freely and my fatigue levels are normal while I am in the pool. Although I usually have to take a nap after swimming.
Our PMR journey is as individual as we all are, so you will need to figure what works for you. I know that I have had to be a bit creative in finding different ways to do things. And most important, don't be afraid to ask other people for help. This is a good group and people here are kind and supportive. Don't be afraid to ask for advice and support. Having a community of people who understand is invaluable.
I think the most important takeaway is that you are definitely NOT too young for PMR and to remember this is a Marathon not a race and go slowly. I was in the older age group but still got the instructions to reduce pred too fast. I was reasonably fit and couldn't imagine having to take steroids but I did have to. Thanks to this forum I ditched medical advice and have reduced slowly. I have had a recent experience with "Sick Day Rules" and increased from 2mg to 4 just while the mega cold subsided. Watch this forum - so many members have been there and done that! Good luck.
Hi - I was diagnosed with PMR at 56 in November 2023. I'd been feeling not right for a few months and I ended up unable to move properly which had a debilitating effect on my body - loose skin and muscles and i'd aged overnight. the Pred worked wonders and allowed me to resume exercise like walking/daily gym/golf etc at about 50% instantly which i've built up again to 100% since then.I started on 25Mg of pred and i'm not on 4.5 tapering down slowly. Withouth pred i aged 10 years now i look normam again. My experience is that not being able to move due to inflammation is the real killer - pred is the solution
Hello - I was diagnosed just after turning 50yrs old. It was as we were going into the first lockdown and so I was lucky to have a good GP who recognised the signs and got me onto pred - and suggested PMRGCAuk. Mine came on very suddenly after I had been dealing with a huge amount of stress and then a tetanus jab - as others have commented, it seems that was the straw that broke the camel's back. Initially other doctors and rheumatologists said it was very rare for someone "so young" to have PMR but after doing my own research it was clear that many people my age, and even younger, can develop the disease. Yes, we are (or I WAS as I'm now 55!!) at the younger end of the age average but that's how averages work - there has to be extremes at either end! I was very fit and active prior to diagnosis and have had to make some changes, but I still go to the gym, do spinning classes, Pilates, use the running machine, walk the dog twice a day, fell walk... it just has to be at a slower pace and for less time. If I do too much I get prone to pulls, tears and aches so I have had to learn where my limits are. I thought I would zoom down through tapering and be off steroids within 18 months. Huge mistake! I have been up and down for over 4.5 years. My mental health has really suffered in the process but I have been slowly tapering (once again!!) and trying not to be impatient. This forum and the charity have been wonderful. Please listen to their advice and you'll feel supported and listened to. There's so much experience on here. And genuine understanding and care.
Hi Risotto2, I got what I thought was covid in 2020, then definitely got covid in 2021, same kind of symptoms as in 2020 so I'm now sure it was covid the first time! I was recently diagnosed after 3 years of the gps not knowing what I had, was it long covid, was it ME? Or a. Connective tissue disorder? 🤷♀️ But diagnosed now with pmr at 40. I was told I'm pretty young to have it but as others have said it's not that rare being under 60s with pmr now.
I have been told by my gp that we will aim to be off the steroids in 18 months.. I like his optimism!! 🤣The way I see it is as long as the steroids are helping I'm happy to stay on them! Whether that's 2 years, 3,4,5,10?
I don't know if it'll be long-term, if long covid turns out to be it's own autoimmune condition and steroids are the answer for it then I suspect I'll be on a low dose of steroids for life, that's what I'm hoping if it is long covid, because without the prednisolone is a miserable existence! if it's pmr and not long covid it's difficult to tell whether it'll be a couple of years or longer. I guess we'll get to the 2 year mark and check in with ourselves and GP to see how we are?
Personally I'm hoping it'll go soon but if it doesn't I'm prepared with the long covid rehabilitation programme info (from Nuffield Health, which if you haven't done is really helpful!! ), which is "plan, pace, prioritise", which is the guidance for a lot of chronic illnesses. It's certainly a learning curve!! I still mess up and overdo it but I'm learning to take time off when I need to for rest.
I would suggest to exercise gently.. don't do what I did and cycle 16-20 minutes to work two days in a row.. that's asking for trouble 🤣🤦♀️, maybe try a stationary bike, it's good for the joints, great cardio and helps keep your core strong, which I guess you would probably want as someone who was fit and active before this diagnosis. you can get off the bike if you're feeling a bit breathless or achy and you can start slow and build up. I've heard weight training is good for pmr but again don't do what I did and exercise every day hardcore, your muscles are going to tire more easily and tomorrow will suck. I've found walking is helpful, I bought a bicycle stand from Amazon so I can mount my bicycle so it's stationary, but I haven't set it up yet at the new house. I can watch netflix and cycle, so that's just great!
" I'm prepared with the long covid rehabilitation programme info (from Nuffield Health, which if you haven't done is really helpful!! ), which is "plan, pace, prioritise", which is the guidance for a lot of chronic illnesses"
And guidance that very few PMR patients are ever offered. It really upsets me that Covid patients get something that the vast majority of autoimmune disorder patients never even hear of. I'm not dissing Long Covid at all, there are many young patients suffering badly with it, but I said as soon as the Long Covid song started - why are they special? Long Covid is a descriptor for a bunch of autimmune disorders, some are labelled as having a particular one, like PMR or lupus or whatever- but there are millions of us out here who have had to fight for years to be taken seriously and who are hounded off the only medication that makes a difference.
But do be careful - expecting your body to tell you it has had enough and to stop in PMR is wishful thinking. Often it is only after the event that your body collapses and it is sudden, like hitting a brick wall. Repetitive movements, as tends to be the case with any exercise on a device, is poison for PMR - walking outside is far better than on a treadmill, for example - and DOMS (delayed onset muscle soreness) won't be felt until the next day, by which time it is too late to wish you had done less. Do too much and it can take weeks to recover during which time you can do nothing,
My view is all autoimmune disease is linked - and each of us has our own individual syndrome. They are getting there with the concept of UCTD and MCTD but they aren't wide enough in scope and for other things, once some rheumies have decided what you have, shifting their ideas is like moving a mountain. And if you have someone saying it is fibro - you are a totally lost cause, nothing will be heard above that!! Find another doctor.
I was 46 when PMRnsyarted, diagnosed formally at 47. I'm 51 now and very almost off pred. I was pretty fit when diagnosed, a runner and it floored me.
I would say not to put a time limit on it. It will hang around as long as it wants to. It's much more important to taper well at a good pace for you.
For me, walking wasn't that easy (I'm talking the 5k fast walking group at the running club) but I find lifting heavy at the gym much more manageable, even now. Try different stuff out but go slow and leave more rest days in between.
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