I'm new here and all I read is horror, long treatments with pred side effects, relapses and moreWhere are the the ones like me?
I got diagnosed in July this year, had a crp of 34, started with 30 mg prednisolon a day and tapered to zero TODAY with a crp of 2,2.
I've felt great the hole time, besides that I can't work up my stamina and strength I had before, being used to gym 4 times a week and 5-10k walks in my forrest on the trails made by me and the animals.
Am I going live in anxiety and fear for a long time that pmr will come back as it did with all of you and crush me again with full force?
Lucky you! I don't think the ones like you need our wonderful forum. My advice would be to stop reading the forum thus dealing with the anxiety and return when you really need help. Good luck on rest of journey.
Good news that all has gone well for you. I want to hear these examples. I was terrified when I first heard of people’s long term experiences on this site. A friend had PMR and has indeed recovered. She is aware of its possible return but it has not stopped her getting on with a full life. I hope I can be in your position, although I have GCA. I’ve had a couple of blips, mostly with my reaction to the steroids. It’s coping with the uncertainty that’s difficult and the inability to plan. I’m a planner, an active social person and a worrier - not a good combo with this illness. If you can enjoy your life and are confident your social plans can go head without fatigue scuppering them, congratulations.
I don’t often post on here but as you like to hear “happy” examples I’m happpy to share my experience with you. I was diagnosed with PMR September 2021 and went through the whole experience of tapering etc that you get with steroids. When I finally saw a rheumatologist he gave me a quicker taper which I wasn’t happy about but tried it anyway. I did change my diet and cut out all carbs and I came off Prednisolone last July. I still have a lot of stiffness and pain in my right shoulder which they say is bursitis. I did also lose a lot of hair towards the end which I assume is because my adrenal glands weren’t fully awake.
Will it come back? I don’t know, but for now I’m enjoying a near normal life. Good luck.
Thank you. Good to hear you’re living a near normal life. That is my hope for the future. When I reflect on my experiences of the last seven months I know I’m in a better place now and have to keep hold of those positive thoughts on the down days, as these are very ´up and downer’ illnesses. It’s the unpredictability that I struggle with on top of my difficulty with the effects of the steroids. Like you, I’ve changed my diet and also found meditation and music helpful to relax. I’m doing all I can with rest and pacing, including gentle exercise as well. I just hope for a future when I get more of ´me ´ back.
I suspect those who do well, on the whole don’t tend to bother with forums once they are recovered unless they stay/ come to help. Your journey through PMR has been exceptionally fast but only time will tell if your remission is full and stays that way. If your immune system is still confused about what it should attack it may take time for inflammation to build up again. I expect your fatigue won’t be helped by your adrenal function trying to recover. Anyone who has been on steroid doses of about 10mg or above for more than about three weeks will be at risk of this. This bit takes time and you would be well advised to go to the FAQ’s and read about adrenal function. It is essential knowledge for those who have been on steroids.
As to whether you have to live in anxiety, that is up to you on how you frame it and whether you are trying to force recovery by getting off the medication too fast and making the body get back to your old normal as a sign to yourself of recovery. If you have low adrenal function that can also increase anxiety until it is resolved. The effects of any major illness, even ones completely resolved send ripples through the body and mind. I have found it helpful to see illness, not as a thing that comes visiting randomly but an aspect of one’s body and life that caused an upset with some unavoidable influences. I didn’t relapse but it took 3.5 years to get off steroids and I’ve been in remission for 2.25 years. As a result I have made huge changes to my life to support my body and mind to try to avoid a rerun. There’s no guarantee but there isn’t with anything even our good health. With every major illness I’ve had, I have got counselling in some form as part of the healing process and to deal with after treatment has finished as learning to live differently and learn to trust again can be hard. . This is often the time when I’ve seen most cancer patients fall alert mentally, when there’s nothing more to do but get on and hope. The journey doesn’t stop with the Pred. Good luck.
Firstly, I'm so pleased that your experience of PMR has been a much easier journey for you than for the majority of us.
Your taper off pred has been incredibly (and unusually) fast and this very rarely happens. All of us here who are struggling a little more to achieve this would have relished that outcome too.
Sadly for the majority of people (with PMR/GCA) who are taking steroids, there will be challenging side effects......some of them that have been well documented as a strong possibility and some that will occur as a result of individual circumstances. You appear to have been one of the few lucky ones so I'd just be happy and embrace that.
It's true to say that PMR can reoccur but it's not by any means a given and no one can predict who that'll happen to. That's why I personally think it's important to live our lives one day at a time.
I have been on this forum for over 3yrs now and found it to be a site full of encouragement, information, knowledge, support, understanding & friendship.
It's a place to receive all those things but it also provides reassurance for those of us who are struggling with the more challenging aspects of this condition. That is why you probably felt all you were reading was "horror".
This is a lifeline for so many of us, giving hope to many scared people and answers to many confused people who are feeling completely overwhelmed.
The longer you engage with the site, the more you connect with various people and the more you feel a part of a community sharing both the lows and the highs experienced.
I always say that you'll read of many health concerns related to PMR/GCA but as individuals we're of course not going to experience all of them (if any) ourselves.
This condition can 'take' from our lives but it also 'gives' sometimes, as I have discovered. I now embrace all the things I can still do and have adapted my lifestyle around my condition. I live a new 'normal' but it's still enjoyable, purposeful and fulfilling.
I hope that in some small way I might have convinced you that this site is more than you have perceived it to be and I wish you a continued and long healthy future, free of PMR and full of joy and happiness.
Not necessarily…for all the reasons others have mentioned… but just to say there are some of us around who have come through the other end, albeit not as quickly as you…
SnazzyD and myself just being two of those, but we both had GCA not PMR, and I would like to think we both provide a positive scenario for others… and I can say I never felt crushed
There are many more on here who have got through PMR, but probably the vast majority who had an easy journey either saw no need for us, nor wish to remain…..
Good luck to you, and [in the nicest possible way] hope you have no reason to come back.
Hello, MonaMark. The answer to your question, “Where are the ones like me?” is probably best answered by saying it could well be that they don’t feel a need or have a reason to be present. The forum exists to support and give trusted advice and suggestions to people who are struggling to manage their disease. There are very often positive posts from people who have had successes and these give hope and encouragement to others who, for many reasons, may be struggling: it is heartwarming to hear from them.
In my own case, I started with a CRP of 115 and after 5years am on low doses of pred (1/1.5mg) but during those years developed GCA/LVV. Everyone is different. Some people on the forum have lost sight and others have developed more life-changing illnesses that require on-going care and medication. I have benefitted enormously from this forum and its ‘experts’.
Congratulations on your successful and rapid remission from PMR and thank you for telling us your story. As to whether you now live under a cloud of “anxiety and fear” of PMR returning could be said to be down to conscious choice. If I were you, I’d be celebrating (in a restrained way 😉), and at the same time know that I would recognise a return of symptoms and seek advice to avoid what could well be a flare. To be forewarned is to be forearmed.
I will stick my neck out and say - wait and see. I hope it is gone but you can't know until you have been off pred for over 6 months. If the disease activity is very low it can take that long for the inflammation to build up enough to be noticeable. Even 1/2mg can be enough to manage it, zero doesn't work though. One factor is that you haven't had to cope with the adrenal insufficiency aspect of long term pred - getting adrenal function back to where it was pre-PMR can be a long and tortuous experience when you feel so ill and fatigued you cannot function.
PMR is a very heterogenous condition and ranges from someone like you to someone like Skinnyjonny or me. Skinnyjonny was a firefighter and training for 10km runs and climbing in the Himalayas when PMR hit - and he was in a wheelchair. I was at the gym most days, I wouldn't say I was superfit but I was better than average for my age and skied all winter. I developed the symptoms of PMR but it wasn't diagnosed and treated in any way for 5 years during which time I modified my gym activities and skiing but didn't give up altogether. It hadn't burnt out in that time. I have now been on pred for 13 1/2 years - and am now using Actemra (a biologic) to try to reduce a very high dose of pred (for PMR at least).
You have been very lucky, it is possible you didn't actually have the PMR we talk about - as I say, it is very heterogeneous. PMR isn't the disease per se, it is the name given to a set of symptoms which are due to an underlying disorder which includes several alternatives. In most cases it is an autoimmune disorder - how long it takes for the immune system to return to normal varies. But it can be other illnesses, forms of inflammatory arthritis which initially present looking like PMR and even forms of cancer. There is no definitive test for PMR - it is a diagnosis of exclusion of other causes. Many of the members have this fight with their doctors!
I have been on this forum for many years, 10 at least I think, I have read every post and every reply to every post. Yes, there are horror stories amongst them but even the post that starts with horror always has a lot of encouragement and even joy and laughter in the support. And it speaks for itself I think that people DO come back, repeatedly, so it can't be that bad.
It may not be for you - but as you say, you have had a simple journey and one that didn't have Covid and no access to doctors to negotiate. Others haven't been so lucky, I hope, in the nicest possible way, we never meet you again - not because we don't want you, we do, but because you don't need us.
I've now been on this forum for aprox 2 yrs, having being diagnosed with PMR 6 months prior) & it's been very useful but I haven't really joined emotionally. That is changing because I now feel more debilitated than when I first contracted the disease - I am in tears first thing in the morning when I can hardly move around & become fearful of actually getting out of bed. The symptoms are mainly in my thighs so walking becomes very difficult & sometimes a leg will partially give way so I have to be very careful. I have reasonable days & bad days & avoid sitting down for any length time as on rising the pain will return, there doesn't seem to be a pattern. The PMR was diagnosed during Covid so I have a new pair of ski boots I've never worn (& wonder whether I ever will) & bought a rowing machine (because the gym closed) which I've hardly used. I'm now 73 yrs old & have a 13yr old daughter & it saddens me greatly that I'm now hobbling around like an old man, when before I was reasonably fit. It has also effected me mentally so sometimes I become quite depressed. Treatment started with 25mg of Pred & in 5 days I was feeling almost back to normal. Then over 18 months I got to 10mg feeling OK but not as good as when I was on 25mg. I was then advised to decrease slowly but when I got to 7/8mg symptoms returned with a vengeance so of my own accord when up to 10mg, but this made little difference so contacted my rheumy who said go to 15mg - but symptoms persisted & then increased & that is where I am now.
Recently spoke with rheumy again who told me how very bad steroids were for me & said to carry on as is & try to get down to 10mg, hence my post here as I'm confused & upset. I'm thinking that what I should do is go back to the 25mg I started on when I felt fine & then slowly reduce again, but am now a little scared having been warned how very bad steroids are, which was also confirmed by my GP.
A number of questions:
Do you think I should go back to 25mg & then start reducing again, this time being much more aware that when I do so that if symptoms re-appear I should quickly up the dose?
When reducing at what rate/pace?
If having to up the dose if symptoms reappear by how much?
If I'm feeling good can I start to exercise & try to regain the fitness I had before or will this just acerbate the situation & make things worse?
I've been prescribed amitriptyline 10mg to help with pain. Has anyone else been prescribed this & has it helped in anyway, or have the side effects been a negative?
I want to make 2023 better than 2022 & remain optimistic, but now feel I need to be more personally proactive in my treatment.
Any advice, comments or past experiences would all be more than gratefully received.
I previously mentioned a company Phoenix Labs that supply gastro resistant 1mg Predisolone. Sent this info to my chemist copying in my GP surgery & low & behold they appeared!
A Very Happy New Year to Everyone - Peace & Prosperity to All.
I think you should repost this as a thread in its own right - that way you will be heard by a lot more than just DorsetLady and me (we see everything because we follow everything)
"who told me how very bad steroids were for me"
Well I'm sure he believes they are, I wonder if he has any idea how bad PMR is for us. Or what he'd say to me if I told him that without 13+ years of pred he wouldn't have to worry about whether it was good or bad for me because I would have topped myself a LONG time ago? I doubt he has a clue what living with badly managed PMR is like.
Now he is showing his lack of understanding of PMR - if you have relapsed, then decreasing the pred is only going to make things worse. When the symptoms started to reappear he should have slowed - even stopped - right there. Not permanently but to allow some space and a regroup.
The problem you have now is that a flare has got hold and they are often harder to get under control than at the start. I think you WILL have to go back to a higher dose and take it very gently but will he agree? How is your relationship with your GP? Has the rheumy made noises about "steroid sparers"? They really might be worth the trial - can't be much worse than you are now and might keep him on-side.
I can't offer anything on amitriptyline as I've never taken it. I know quite a few DO take it - some for sleep disturbance. Others may be for pain - but I don't understand its role in PMR since the pain it deals with is nerve pain and PMR isn't nerve pain. Ask the question in a new thread.
And gentle hugs - there are a few of us who have been where you are now. We have your back.
Thank you for that & have now posted on a new thread. I have good relationship with my GP & as for asking to up my quantity of steroids they are so overworked at the moment I don't think they will hardly notice. I won't tell my rheumy! Steroid sparing drugs - I tried methotrexate early on which made me feel 'ill' & my hair starting falling out much more quickly than usual so stopped it. Are there any others worth trying?
Given all I've now read on this sight I feel I should almost decide my own treatment because it's mainly all about reducing.
Did I read on one of your replies that you were taking Actemera, but I'm presuming you also had GCA.
I have an old friend who I haven't actually seen for a long time who sympathised with me as he had had PMR. Living quietly in the depths of Cornwall he just saw his GP who diagnosed & then advised on his pred routine & after 3 & half yrs or so 'it quietly slunk away' & he prays it won't return. As he describes it he appears to have been advised well on how to reduce.
I am taking Actemra - and I have only ever been diagnosed with PMR, very brief signs of GCA but they disappeared on their own. But I don't live in the UK - different healthcare system.
MTX made me feel so awful I couldn't function. The other option is leflunomide - lot of discussion about that recently. But my rheumy said not to bother - straight to what we knew would work.
That sounds excellent news. Of course only having PMR for six months is virtually unheard of. They reckon up to 40% of people diagnosed with PMR are misdiagnosed so you can never tell.
Not really - it happens all too often when the poster doesn’t like the replies received -but I find it very rude to just disappear without any acknowledgment.
You may be right. Perhaps in this case they realised they did not have PMR but something else!! It sounded a bit unbelievable less than 6 months to get over PMR.
I think there are others with similar stories whose PMR symptoms started in response to a Covid jab. They definitely seem to have a more straight=forward journey. But the lady gave us no context did she?
I think some may misinterpret your post as in some way belittling their own battles with PMR symptoms, hence the barrage of negative posts that followed, but please know that your words do help many of us!
I don't think any of the posts were particularly negative - presenting the different realities of PMR maybe. However, the poster has left the forum, without engaging in any further discussion.
There is a great deal of positivity on the forum - but the questions people ask and the stories they tell reflect their experiences too and that cannot be argued with.
I do find it very interesting that these sort of comments come from people who have apparently not engaged fully on the forum previously when they could have presented positive posts themselves.
It looks as though something caused the OP to withdraw from the discussion, and it felt to me as though some responses were along the lines of "that's all very well for you, but....", and there's no need to burst someone's bubble like that! There's also a suggestion that maybe she didn't have "proper" PMR, and I wonder how that made her feel?
BTW I did post previously, and was shot down in a similar fashion for continuing to do triathlons, so backed away like the OP here.
I do understand that in a way the OP sounded critical, but to me she has a point - unless you encourage positive stories, the site will continue to be biased towards the gloomier perspectives. While this is inevitable and is where the site has its greatest value, please leave room for the good news stories, as giving people hope and allaying anxiety can be very beneficial in managing conditions like PMR.
I think you are misunderstanding the purpose of the forum. It isn't going to be an all sunlit uplands site when we are here to pick up the fallen. Most people find their way here when they are in the pits, after they have been failed by the system and dismissed as depressed, too young (at under 70, that has been heard), it can't be as bad as you say (oh yes it can) and, above all, it can't be PMR because you aren't over it in 2 years (or less).
I don't go looking for people to tell us dire stories - I don't need to, they come on their own. How can we get people to post positive stories when they don't have one? And we certainly can't tell people what to post. There are hundreds of members here and I promise you. having read every single post and reply for the last 10 years. by far the majority got here through a vale of tears. They have had the experience of being told by family, friends and even doctors that they aren't trying hard enough, that all they have to do is take this supplement, change this about their diet, whatever.
I don't think we shoot people down in flames for insisting, often quite aggressively, that they are going to carry on as they always have done. What we do try to do is warn them it might not be that simple. cycli was sure he could - he has had a pretty rubbish year. What I can't say is that he might have had a less awful time if he'd gone about it more gently - but the question always is there.
For balance, let's leave it here with my upbeat n=1.
I've been continuing to do swim, bike and run training, and find running stirs up more discomfort than cycling. Front crawl stirs up the shoulders. I still have the odd "flare" but am down to 3.5mg Pred after 20 months. In September I won the British Middle Distance Triathlon championship in my age group.
I'm sure we all grasp the basic pathophysiology of PMR, which affects the bursae and fascia around the musculotendinous junctions, not the muscles themselves, and understand that the demographic affected by PMR is already at risk of losing muscle to a debilitating level. It's therefore crucial to find ways to maintain muscle strength, or at least slow its decline. There are many ways to do this, and certainly intensive triathlon training isn't necessary or a good idea for most! However, I would like to encourage people with PMR to remain active, and as strong as they can.
I know of no studies which show that sustained rest and avoidance of activity are beneficial in PMR.
“I would like to encourage people with PMR to remain active, and as strong as they can.”
We do encourage that, and it’s often discussed, but you need to remember some patients have other health issues which make that more difficult for them.
Pre PMR fitness and age makes a big difference-not every has the same starting point.
"I know of no studies which show that sustained rest and avoidance of activity are beneficial in PMR."
Nor do I and nor would I ever say I did. But I DO know of studies that show that forcing exercise is bad for it. They have finally understood that the "graded exercise" management approach that was advocated for certain chronic fatigue conditions causes more harm than good - just as many patients tried to tell them. And it applies to some extent with PMR. Maybe you have never found yourself stranded in the middle of a ski piste unable to find the energy to ski safely to the nearest lift. Or on a walk where you had no idea how to get home. I experienced the former and was only grateful it was only a blue run and a short distance!
Ah, I think I have now realised - we have been talking at cross-purposes! I'm referring to folk with PMR whose symptoms are pretty well-controlled most of the time. Though this group is fortunately the majority, it is those with ongoing problems who find their way to this forum, rightly so, and it is this section of the PMR community that concerns you.
(I also do not advocate doing exercise, or anything else, without applying common sense or considering the possible consequences, which might exclude launching oneself down a ski slope or even going for an unaccustomed walk!😉)
I came here looking for somewhere to share "PMR training tips" etc, and it's clear I am in the wrong place. Unfortunately, I don't know of any other good PMR fora, and do not wish to start up a new one where such discussions are welcomed. So I guess that's it, really.
There aren't any others, not of this size and activity at least and I think the Mayo clinic is possibly the only other.
But don't get us wrong - many of us ARE well managed in terms of symptoms BUT you have also to remember that the underlying autoimmune condition is still on-going and that leaves the vast majority of patients vulnerable to over-doing anything. I continued skiing until other factors led me to consider if I wanted to carry on at all and on that day I had done my usual 3 short runs that I did at the beginning of the season, I felt good and thought I would be fine with another run. I wasn't. A few weeks later though I was doing up to 10 similar runs OK. Later still in the season I was managing long runs rather than multiple short ones with nice rests on the lift in between, The majority of us manage walks, some cycle, some do other sports. But the one thing that is poison to PMR damaged muscles is repetitive actions so "training" for anyone who wasn't an athlete at a high level before is likely to struggle to some extent and some will struggle at all. cycli is maybe someone to get into a discussion about the potential effects on a highly trained athlete - I'm sure you would find his story informative.
Certainly true PMRpro. Good response to Pugchick and sorry to lose the new poster. I wish I could continue as I started but can barely walk at present let alone exercise. The degradation has been shattering but believe it or not I am still hopeful. I just know that come what may my body will at some stage recover if not all at least a large part of its function. It can not be all about muscle loss as I have seen much worse cases walking properly and functioning properly if somewhat weakened. It is the quest to understand and overcome that holds my interest. Had a doozy of an argument with wife yesterday as she keeps advising me to do more to exercise and steadfastly refuses to learn anything about it and doesn't believe that I can't do what she suggests. I understand it as 44 years of ploughing my own furrow the way I determine and never anything but straight ahead has been suddenly terminated by these 2 conditions. That's life and we'll manage to sort it in time. Meanwhile I salute the dedication of you and DL who temper sound advice with firmness and sympathy. I think I am going to be around for a little while yet.
That's a lovely comment DL. Thank you. Even a skewed smile is welcome.. Shows how desperate I am for attention 😀 Seriously though. to read ALL the posts as you two do is dedication and altruistic service to those of us needing advice and help. Can't be bought so thank you.
“….hence the barrage of negative posts that followed,”
???
If you are referring to me, the only negative comment I made was after original poster had already disappeared..and they were in regard to her exit not original comments .
I wasn't referring to you, no, though I'm afraid you might be right in saying you are old-fashioned re responses (me too!), as communication via social media these days does seem to be somewhat stochastic.
Hi, to whom ever you are and others which it is applicable to. To describe this Forum as being full of negative comments and posts is a load of total "piffle". I can't use a more appropriate comment as it is a public forum. The forum gives an opportunity for those who have real problems and or worries about a disease/medical problem, which most have never heard of, let alone understand to gain some practical understanding of the disease they have been diagnosed with. That applies to a few medics as well!! Not mine, I've been very fortunate and have had excellent service from my GP practice from day one and had no need or desire for a Rheumy . This Forum provides the knowledge and understanding from members with extensive medical backgrounds as well as those with the practical knowledge of this disease for many years. Yes, I can do research, but I have learned pretty much everything I know about PMR from this NHS recommended site. Knowing you are not alone with your disease and that others have the same problems as you is very important and helps you realise you are not alone and problems can be/are shared. I'm also extremely lucky in that Pred gave me my life back but also gave me very few, if any, side effects. Even given all of that, I'm 2.5years in with, probably, another year to go if I have no more hiccups! (2.5mg at the moment). I'm very to happy to comment on posts, make posts and share my relevant experiences and knowledge where relevant, but like all here, will never ever disparage the very genuine problems that many others suffer.
If you are still there just reading I urge you to respond as these replies go to the heart of this forum and express a diverse range of genuine responses. read my profile and you'll see both optimism, anger, frustration but never hopelessness. As PMRpro says my last year has been bad with just a few patches of good. We all react differently and maybe you are just one of those lucky ones who has a really positive outcome. I hope so. For some of us we never knew what was happening, only that our bodies wouldn't behave properly to the normal procedures we had tried to correct symptoms. Unfortunately years of non diagnosis allowed these conditions to embed themselves and remission appears to be harder as a result. Doesn't mean we aren't still hopeful and positive. It just means the struggle is harder and longer. It's the battle with loved ones who can't and won't understand that hurts and this forum helps us when we are low. When you are up against this it helps enormously to know some one really understands. This condition is truly humbling because it totally strips one of any humbug . It drags you to your knees so that you understand when you can finally stand again you are a new person with a deeper understanding of yourself and more importantly other people whose unseen conditions you can empathise with from a lived perspective. I fervently wish for that opportunity to rebuild some of what I had but with less of ME and more of that OTHER.
I’m a bit like you. I managed to stop Prednisolone after 10 months and feel much better now although I’m still stiff and still have a painful shoulder. I try not to dwell on the thought of it coming back and just enjoy my life again.
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Positive A&E visit
CRP moving up
"Mechanical"/PMR pain difference
PMR since July 2018 and down to 1mg. Enter GCA
Monotherapy with Actemra for GCA
