I’ve just finished a course of antibiotics for a bladder infection so am going for a fresh set of bloods, urine and poo today to try to establish if PMR has returned.
It certainly feels like it! Since completing a 950km bike ride in France over 11 days I have been absolutely floored.
I started with PMR around the beginning of 2022 and had it diagnosed in September. I went onto Prednisolone at 15mg initially for about 4 weeks-the affect was instant -like a miracle cure- and then cut down to 10mg and them tapered over the next several months to come off it all together in May this year.
As I reached 2 or 3mg I felt it was coming back but it was manageable.
Since the bike ride PMR is in my shoulders and now appears to have spread to my lower back and groin area. My legs are also still very sore as though I have just got off the bike after a long ride. I’m not sure whether this is PMR or something else at play, e.g. Lyme. I am very stiff first thing in the morning-can bearly get out of bed and then hobbling about like an old man! I do gradually get going through the day but also have very low levels of energy.
Thoughts on this would be welcome.
Sorry, a bit long winded but wanted to unload my story. As a previously fit and strong mid-60s road cyclist who would regularly ride 50 miles fairly fast without batting an eyelid, I’m devastated.
Thanks
Martyn
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Mervetheswerve
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Sorry to tell you, but your PMR has never gone away…. It may have seemed like it, but once you finished the Pred the inflammation from the underlying illness has built up again, and the bike ride was probably the last straw.
Have a look at this which gives information about your illness -
Sounds as if you need to start your journey again [you may not need as much as 15mg, but doctor will decide] - taper much more slowly - and although you can still cycle - you need to be more aware of the effect that your illness has on your muscles. There are other keen cyclists on here who will be along with advice.
If you had contacted us when you started having issues at low doses, we could have advised you then how to stop it turning into a full blown flare - but too late now - water under the bridge. Pity.
Hello! The good news is that on paper the cause is blindingly obvious what your issue is. The bad news is that you probably need to start again and have this condition treated properly with appropriate physical restraint. There are avid cyclists on this forum and many of us were super fit before PMR/GCA struck so we feel your pain at the injustice of having to curtail one’s beloved activity. Curb it you must as not only does your autoimmune activity need you to but you risk later tendon and ligament damage. Plan for the long haul and retain as much function as possible, or if you want to go out in a blaze of glory, make it a conscious decision and don’t blindly keep thrashing yourself. We do have a member who is held up as the king of overcoming by going from wheel chair to climbing some preposterously large mountain. He did this by being on a proper level of Pred for a length of time his body needed and steady rehab. Perhaps someone will post the link to his story.
This condition lasts a few years not a few months but some, usually men, can have an easier time, but 8 months is a no go. Pred supports you by combating the inflammation put out daily by your autoimmune activity, it doesn’t stop the activity. Not being on enough Pred results in your current situation and an increased risk of GCA, whose Pred doses are significantly higher. Someone will post the link for those who are new to this site and either new to PMR or like you, have had a relapse. Do read it because being informed is half the battle to aid recovery and if you have a GP who is clueless about PMR/GCA (there are many) you can advocate for yourself to avoid long term issues. Sit tight for more replies!
Thank you so much for this, SnazzyD, I’m feeling rather stupid having not given this condition the respect it deserves. This is partly as a result of getting over-optimistic signals from my Dr. who at no time suggested that the long bike ride might not be a good idea. I genuinely thought I was over the worst and could live with it. What I am reading now is rather more sobering.
I’m seeing my Dr again next week when we get the test results and will raise the many good points raised here with her. Thank you again.
You really are not the first and that is mostly due to lack of information beyond, “take these, read the leaflet”. Some docs read the guidelines (stress guidelines) but not the small print that says that patients need to have the dose adapted to their symptoms. As PMRPro says, the old idea that it lasts 2 years persists in spite of research and anecdotal evidence that say otherwise. A general terror of steroids can also be behind many a too rapid reduction plan. Some of this comes from a belief that the patient is a sitting duck when it comes to side effects and weight gain and diabetes (cue low carb diet) is inevitable when it isn’t. If they try to put you on anti bone-thinning meds, do request a DEXA scan first as you may not need them. As for exercise, most will be lucky to get much more than, “try to exercise”. You have merely joined the many who find themselves washed up on the beach of forums feeling confused, alarmed and dispirited.
Thanks again, SnazzyD. I’ve given my samples this morning and managed to see my doctor too. We will meet again next week when we have the results. She is probably right when she pragmatically says, even if I’d read all the forums on PMR I would still have done the 950km ride as I was feeling just fine before I started it! The relapse is the wake up call so hopefully I’ve not already gone beyond the point of no return.
Don’t feel you are stupid, Mervetheswerve. PMR is a learning curve and we learn from our mistakes. I dare to say that there are probably very few PMRers that have never made even a tiny one along the way (I will be corrected if wrong 🙂. When you feel up to it, there is an excellent debate here:
I wonder if your diagnosis was accurate? At no stage could I have performed those athletic feats. I actually felt ill with severely limited mobility. I don’t think that it is about a reaction to over-doing things alone. People do get different degrees of PMR and the very lucky ones have the short duration that some doctors continue to perpetuate as a realistic end goal, for all sufferers. This can cause unnecessary suffering as the muscles cannot take normal activity let alone athletic endeavours. The average duration for PMR is 5.9 years. People who finish treatment early often find the disease returning. I am sorry that you are feeling devastated. If it is indeed PMR then acceptance and adaptation will be necessary. Hopefully in your case it won’t be too long and you can regain your former levels of fitness. In the meantime, if you rail against your limitations and try to force your body to behave in its normal way you simply prolong your suffering and complicate your recovery. You need to find a programme of exercise that suits your present level of ability. You need a correct diagnosis and then the right level of exercise. Wishing you all the luck. We do understand your feelings completely and hope you can find the lowest level of Pred that allows you to lead a normal life within the limitations of the disease.
"Since completing a 950km bike ride in France over 11 days I have been absolutely floored."
You have had PMR for less than 18 months, were diagnosed in September and off pred by May and then went on a bike ride like that? No wonder your PMR is resurging.
The pred didn't CURE the PMR - even at the best hopes, PMR lasts a year and anyone getting off pred in a year or so is at a high risk of relapse - even the experts admit that. Only about a third get off pred in 2 years - I do know quite a few but the majority need pred for 4 years or so and more.
What often happens is that people get off pred fairly quickly, thinking that they got to zero and that is it - but the underlying autoimmune dsease activity was at a very low level, still creating inflammation in drips. Once off pred, there is nothing to mop up those drips and, like a dripping tap eventually fills a bucket, after a few months there is enough to cause symptoms. And at any stage of PMR, a bike ride like that would cause problems, Your muscles are not healthy, they are under attack by the autoimmune condition and they don't behave as healthy muscle would.
The fact you had signs at 2-3mg confirms my suspicions, PMR that isn't fully managed is never "manageable" and if you take away the management strategy (pred) altogether, it will reappear in all its glory.
All you can do is go back to the start, get things under control again and hope the overexertion hasn't caused real damage - it has finally been realised that the exercise "solution" to ME/CFS is not a solution but can cause real and long lasting damage that is difficult to reverse.
You must listen to your body - the taper isn't a means of getting off the only option in the UK to manage PMR inflammation. It is a titration of the dose to find the right dose for YOU and YOUR PMR - the lowest dose that provides the same symptom relief as the starting dose did to allow a decent quality of life in the meantime until the underlying autoimmune disorder burns out which it does for most in a few years.
As a cyclist, maybe cycli who has also had to give up his bike for the moment, may be able to help you come to terms with this hiatus. He has GCA and has had a lot of struggles.
PMRpro has summed it up well Martyn. I did Paris Nice in 6 days and Lucca to Lake Garda through the Dolomites in 6 days at 68. i can't ride now or balance properly due to Pred. Going down to 11mg tomorrow but it is slow. I have been working at this since 2021 diagnosis, but had been struggling with the symptoms for years previously without knowing I had PMR or GCA. Many have had similar. Your muscles are not getting proper oxygen that's the PMR. They have wasted, that's the pred. They can't get sufficient nutrient from diet, that's the pred. You can't use them the way you did before this condition took over, and that's how you must understand it. You are no longer in control and you must adapt to what the condition will allow. We are hoping to offer targeted training to maximise recovery and minimise risk of flare together with better targeting of the dose, but that is still some way off. The reason medics want us off the pred quickly is to reduce the damage due to pred. induced myopathy. Some get it more severely than others and I unfortunately am a bad case. can't be helped, hence the research into a recovery programme. Feel free to chat/message me.
Thanks for this cycli. So what would you suggest is a seansible exercise regime for someone, like me, who has gone back into all the symptoms-shoulders, arms, wrists, hips, groin? I get up at 7ish as lying down is worse than standing or sitting up-at the kitchen table where I write this. I am unbelievably lacking in mobility first thing. I’ve tried simple exercises to get me moving squats, steps, etc. Not too many, 5 or 10 only. Should I walk the dog or not?
I played golf on Friday, riding on a buggy. I took a couple of ibuprofen before the start and actually felt great to the extent that I thought I could walk but am glad I didn’t. I think I felt a bit worse yesterday but hardly left the house and still feel no better this morning so I’m not sure I can put it down to the golf.
We had friends for lunch yesterday and I had a couple of glasses of fizz and white wine. Not excessive at all. Is alcohol a good idea or not?
I don't know if alcohol is good or not but in the days of untreated PMR the best I felt was after a glass of wine with dinner!!!
But I really do think at the moment you need to rest - and a round of golf just isn't rest. Just gentle walking - not squats, And it depends on the dog - is it an amble while the dog investigates the world and relatively short rather than a few miles hike? Have you access to a pool? If so, walking in water is a good start - nothing too extreme though.
You MUST learn to accept that you have a very different, NEW NORMAL. Exercises to "get you moving" are not necessaraily helpful - you have created DOMS, which is caused by tearing the links in the muscle fibres. The training effect is created by those tears healing. In PMR the tears are unable to heal as normal so the DOMS pain is not only out of proportion to what you expect from your previous normal but also lasts very much longer before resolving. Repeating exercise while the pain is still there just re-tears healing links and sets the healing process back. If you continue it is sometimes possible to create a state that the body doesn't recover from and that was seen in many patients put on the graded exercise programme in ME/CFS.
I'm sure you think I am exaggerating - I promise you, I'm not.
Thank you PMRPro and Cycli. “New normal” is something I am slowly coming to terms with. I did 5mins low resistance on the turbo this morning just to get my legs moving. I figure, so long as such things are not causing pain, there is no danger in doing them as I’m not causing further damage. Is that a safe assumption? So squats which do cause pain, stop, turning the crank slowly on the turbo, no pain=ok.
I should get the results of my latest bloods tomorrow or Tuesday and will see Dr after that. I expect to be back on the pred at that stage. I have also booked a private session with a rheumatologist for later in the month.
I'm not sure you CAN say that no pain equals no damage at all. I do see what you are saying - maybe cycli knows. Turning the pedals with NO resistance might be OK. Remember, your body can't tell you you are asking too much of it, you have to learn your limits which is why we say start with what feels like a silly little amount and rest on alternate days to asses of what you did yesterday is OK. As soon as you feel it on the rest day you have done too much, go back to the lower level, And the rest day is as important as the movement day.
Hi Martyn. Welcome to our daily guessing game on what's going on. Firstly, your old mantra no pain no gain all cyclists used is no longer applicable. PMRpro sums it up well. Breaking the muscle through exercise doesn't work while you have PMR. You can't rebuild muscle while on steroids or with this condition still active. If you can manage easy walks or swimming then great. I can't due to myopathy. It sounds like you need a little increase in pred. to get over the current crop of aches and pains. Sorry to say but you have to accept you are no longer the old you but a new altered self. You have to adjust and adapt to what is now possible. Hopefully there is a recovery when this goes into remission. I can't now even manage one squat. Try my mobility exercises. Use the turbo or rollers. That should help to keep some of your muscles and fitness but do it at 60% of your normal. I still enjoy the odd glass of wine but nothing regular or too much. Golf not much good for you at present given current symptoms. It will only exacerbate muscle tears potential. Keep the dog happy.
If you have variable resistance on turbo then set at lowest. Resistance is the only way to test and build fitness. You unfortunately are not in the situation yet to rebuild as your condition is still active.I'mover 2 years into this and still on 11mg pred. That's the lowest I have managed so I consider that a success. The damage it has done is quite severe but preferable to being crippled with pain as I was. Noone wants to have this but there's no option. I managed 20 minutes on turbo but only at 50-60 rpm. normal would be 80-90rpm. Once the muscle goes then effort is much greater. We are trying to devise an exercise regimen for recovery during and after the condition being active or in remission, but it isn't there yet.
checked your original post. as a comparison I did 670 miles in 6 days in 2015 and 550 miles over the Dolomites in 2019 at 68. having lost 60% of muscle due to pred. I can't even ride the bike now. I hope you don't get to that state but we have little choice in how this condition dictates where we are on the sliding scale of what we can do. I overdid everything at the start and had to adjust when I didn't do well. I thought I could do my usual and set targets. That isn't possible and we have to go with the flow and then see what is possible. Good luck.
We all need an uplift at times. Was chatting to a cycling buddy up north and said..."now look at me and what I can't do any more. probably serves me right ." and he replied by text" Your current state doesn't define you mate. You've done epic stuff on the bike, run businesses and now are farming. I really miss our days out on the bike talking rubbish and having fun." A good friend and I needed to hear that because I too miss the rides and that cameraderie. Hang in there Martyn. We'll all pull through sometime or other.
Thanks cycli. He’s right-there is no better feeling than turning yourself inside out on a hard climb or 100k Saturday am club ride! Have you thought about an E-bike? I’ve been reading up on them and some are now a little over 12kg all up which is remarkable. My thought is a gravel e-bike so I can do on and off road.
I’ve done more bloods today as my dr says the CRP and ERP markers are trending down. I know she is being ultra-cautious before putting me back on pred. At this time of the day I agree with her but first thing in the morning when I can bearly move, I’m begging for it!
Martyn..he's not encouraging me to pump the pedals . Don't make that mistake. He's just reminding me that I won't always be this way.. With the number of bikes I have I'm not wasting money on another. I'll be old school and ride without electronic assistance once I am rebuilding muscle, but not for the present.
I think we need an update from you. I'm concerned that the longer you try to tough it out the more likely you are to embed it into your system. Read the bios of a few of us like PMRpro and myself. You risk getting the ugly sister GCA if you don't knock the inflammatory part on the head now. Whatever the side effects suffered you still need pred for that.18hrs curled up like a foetus in pain for days on end is not something I ever wish to experience again. Understanding what you have and adjusting to it are your prime considerations for now. Worry about getting fit again later.
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