Does anyone ever get over this PMR? if so, can you tell me how long it took? how did you taper steroids. Did you just live with the pain and not do steroids at all? I;m currently on 8 mg of prednisone. Every time i try to go lower, flare ups make me go back to a higher level.
I just would love to know others stories. I feel like I'm losing everything, my ability to do my job, intimacy's with my husband, I'm about to put my mom in a home because i cannot take care of her anymore. Depression, anger,guilt for not doing what i used to do. its just getting hard to hold on.
Please tell me this will end.
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ifeelold
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It DOES usually go away - but how long is a piece of string? I have a lot of friends who have had PMR and many are off pred in anything from 2 to maybe 5 years, Most who learn the lessons we try to convey do quite well and are able to lead fairly normal lives BUT there are things that really don't mix for a good life.
I was still 51 when mine started - I'm really unlucky, I have a long version and have had some interesting times, but I continued skiing for several years by going about it right. But we are very unusual and it hasn't stopped me having a fairly decent life by using pred in a rather uncompromising manner. I have been very lucky with my doctors - but I don't live in the UK or the USA.
I did live without pred for 5 years - my story is on the forum - but it really isn't something I;d recommend. It wasn't choice, I wasn't diagnosed and it may be why mine has been so difficult to manage. Using pred well to allow good pain relief is key - but that requires an empathetic doctor.
Oh my Dear, I hear your frustration and fear.Answer to your question...yes, PMR does go away....however ,...
Not on your choice of schedule.
That being said, I offer you a bit of longtimer advice .....
Read all you can about this disorder. Strive to recognize what is happening when some new symptoms arise, eg., depression, anxiety, pain in different location, etc.
I found this is the best site for the most current information out there. The "wise women" who are most present here, have decades of experience and are gracious and generous in sharing insight, knowledge and understanding of where you are in the progression of your illness.
So, be kind to yourself, when you feel bad, try to find some little thing that helps you feel better...Chocolates come to my mind, but just one or two, maybe buy yourself a flower, or some colored pens to use in a grown-up. Coloring book....or...fill in the blank.
PMR is not well known, chances are, none of the people close to you have ever heard of it. That being said...forge ahead, learning to take kind care of yourself, as you would do if a cherished friend was Ill .
Stay with this forum, we will be here for you, 24-7.
I appreciate your kind thoughts. This is a confusing, challenging disorder, and I have found that reaching out to the Wise women who run this group has given me a resource not to be had anywhere else. I have messaged privately with some when I have a particularly difficult challenge, and they give me strength and support to keep moving ahead.You are among a select group of friends, and your contributions are especially welcomed to those who come behind you. Thank you for feedback. j
I truly feel for you and completely understand your confusion, anger, bewilderment, frustration, uncertainty, fear...and all those other emotions that are brought about by the PMR diagnosis.
Like many here, I've experienced that same sense of loss and the feeling that I'm now a completely different person with diminishing physical ability, diminishing health and diminishing control of my life. I also was a teacher but I'm now medically retired....you can read my story in my profile (just click on my photo next to this post)
Over the 3yrs since my diagnosis, I've thankfully gone from feeling 'hopeless' to feeling 'hopeful', but I'd be lying if I told you life won't change, because it will, and it must!
As soon as I accepted this, my life improved, mainly because I no longer had unrealistic expectations and my focus was solely on learning as much as I could about my condition & medications. This then enabled me to make more sensible and realistic choices & decisions.
There are far worse conditions we could have been diagnosed with and thankfully for the majority of us, PMR will eventually burn itself out. Rushing tapers and lack of understanding how the steroids change our metabolic functions though will only result in a longer duration of the disease and further 'frustrations' emerging. It's therefore really important to educate yourself as much as possible about all aspects of PMR.
I'm now 6mths into my retirement and just beginning to adjust to this massive change. It's definitely been challenging both mentally & emotionally, but I can now see progress, and having the time needed to look after 'me', and focus on me, has reaped it's rewards. I've still got PMR and I'm still on 5½mg pred...tapering VERY slowly....but I rest when I need to, and I can pace myself. I actually still have many things I can do...and enjoy doing......they're just different things, but no less rewarding and no less enjoyable. I do of course still have bad days or unpredictable 'complications' that pop up from time to time, but almost everything is either resolvable or manageable.
Just try to be patient and accept that life is not over...it's just going to be a little different for a while. Don't be fearful of the steroids...they're your ally in the fight against the pain...not your enemy.
It all can take a bit of getting used to, but the knowledgeable people on this forum have been my teacher, my support network and my friend throughout this journey so far and they're all here for you too.
It will be okay and as time goes on you'll begin to feel more comfortable and more accepting of what's happened. I know it can feel like the end of the world at first, but it's really not. I promise you.
Very wise words - especially the importance of acceptance that life will and must be different, if this disease is to finally go. Good luck to all at the start of this involuntary journey - take heart and follow the wise words on this forum - they will help. And there is nothing, but nothing, that will come up for u that hasn't come up for someone!
You’ve got some great replies here. PMR/GCA are life changing to be sure but there a few issues with it in that a) nobody’s heard of it, b) you can’t see it and c) your body goes into this distress with no dramatic event to mark it. To refer to the last one, if you had had a car accident say, you’d have something to pin the life changing result on to. It’s almost acceptable (not desirable!) compared to the decline one feels with this for no obvious reason. Your body decides to attack itself for no apparent reason and suddenly you can’t do stuff. You’re given steroids and usually the expectation is that you take them and soon you’ll get back to your life. It is a recurring theme amongst us from this pick and mix - Being doers for everybody, keeping life’s plates spinning in their 100’s, rarely doing for ourselves, relentless stress, loss, illness, trauma, being carers, over doing it, etc. many of us lose what gives us our identity and sometimes our solace too. This condition is a back to the drawing board condition, how long is a piece of string condition and a lesson in patience. I found the most distress came from trying to get back to ‘normal’ as fast as possible, or holding it up as the only acceptable goal. Once one stops thinking the only way to a good life is for it to be the same as before, it really helps. You start to learn about what makes you tick and you have to take self care seriously. When I was diagnosed I was 54, had two part time professional jobs, wife, mum to two older teenagers, cared to live in elderly in-law, sports person and house wife. It really wasn’t sustainable. I’m none of those now, I’m something different and would never have known it was possible had this not happened to me. Be kind to yourself and give yourself what you need not what you think you should need and prioritise your healing as much as you can. This is a long term project. Do read the bit on the FAQ’s about adrenal function, it’ll help with reducing under 10mg.
Hi Snazzy, You really summed up well that initial panicky feeling after diagnosis, when you said;
"I found the most distress came from trying to get back to ‘normal’ as fast as possible, or holding it up as the only acceptable goal."
I know that I personally had felt such a pressing desire at the beginning to carry on as 'normal', and had naively assumed the meds would of course facilitate that! Any kind of diversion from my 'norm' was not an option and the more I resisted the adjustments that increasingly were becoming necessary, the worse the situation became.....on all different levels.
I'm not living the life I could before PMR, but I most certainly am living a life....and it's a good one for most of the time.
I'm still the same person inside but now with different priorities, different expectations and different aspirations and if I'm completely honest, although I'd obviously much rather be rid of the PMR......I'm quite getting to like this new version of me!
Oh Kendrew! I wish I could say “I’m quite getting to like this new version of me”. I’m in a different category to you though. Firstly, I’m much older than you, have had PMR for 10 years, and now, with added unforseeable ailments, life is unpredictable - and excessively painful.Don’t get me wrong - I still enjoy as much as possible but at a much lower level.
Hi Constance,It's good to hear from you and I'm really sorry things are still so challenging for you.
I know I've been more fortunate than many (at the moment anyway!) and appreciate every day that I can get out of bed and live the life that's my new normal.
I understand completely that for many like yourself, this won't necessarily be the case and the hope would be that there are at least some periods of respite amongst the pain and other accompanying ailments, that allow you to find enjoyment and peace from time to time.
We all follow our own individual 'paths' on our PMR journeys but hopefully each and everyone of us can find ways of adapting, adjusting and 'achieving' in ways that will enhance our lives.
Morning Constance, how is the tablet problem going and have you manage to get some sort of sensible resolution. I was going to reply to your last post but Kendrew has put it in far better words than I could, but big hugs
The forum or PMR/GCA? We live it - they get occasional glimpses and a lot of patients dress in their best and have their hair done to go to an appointment. Me - I prefer them to see me how I am, even if I am feeling rubbish - actually, ESPECIALLY if I am feeling rubbish!
As well as the excellent advice already given, I can recommend the book Polymyalgia Rheumatica and Giant Cell Arteritis - a survival guide by Kate Gilbert.
Yes this book is brilliant but my daily morning fix of reading the new posts and sage advice and support from our wise regulars above have been instrumental in coping with my PMR diagnosis a year ago. I am now down to 8.5mg and tapering very slowly. Keep connected to this wonderful forum 😄😄😄👍👍☀️☀️☀️
Yes, I agree, this forum has been invaluable to me for just on four years. I read the book at the start of my PMR journey and it certainly was a great help, but as PMRpro points out it is now a little outdated. Presently on 2.25mg after 2 unsuccessful attempts to go from 2.5 to 2mg. All the best with your tapering - you have done very well in a year. 🌻
I think it is fair to point out that some of the opinions and info in Kate's book are a bit out of date now - it is still good for living with PMR but it is the story of one person and one thing you do see here is the variety of experiences! Plus the most up-to-date opinions as they develop - MrsN keeps FAQs very current.
Thank you for pointing that out PMRpro! It is four years since I read Kate’s book and I am a frequent visitor to Mrs N’s FAQs for which I am very grateful.
Some of the posts have been up-dated but could do with it being done again but it takes an awful lot of time. But most of what we reply day to day is current knowledge.
Unlike in other forums I belong to there are a group of people in this one who completely make it what it is. Yes, there are some fantastic, knowledgeable and excellent contributors, but you three are the awesome trio, whose experience and knowledge is boundless and who give up hours and hours of your own time, pretty much every day, to help, put minds at rest, comfort and advise the rest of us. Much as you deserve to be paid then I guess that would put you in a different position with regards to HU and not sure if that would or would not be be a good thing. Thank you for everything you do.
My reason for being on this forum is to help others as I was helped early days - and I don't want to be paid - as you say it would change the whole dynamic for me.
I'm sure that applies to many others as well who are in remission, but for others who still have the diseases are patients as well so are dealing with their own issues.....some members seem to forget that.
A few ( and only a few admittedly) seem to think any question no matter how nebulous or easily accessible (if they looked - either on this forum under FAQs or googled it) must be answered.
Yes - as DL says, we do it for purely altruistic reasons having been there ourselves and sharing what we have learned seems the right thing to do. But it would be nice if some people thought about the question before they put it here - many could be answered just by typing it into a search engine!
Well ya oughtta be paid! Where do I go to suggest that?! 😘I hope you and the other "wise women" know how appreciated you are! Your constant attention to accuracy is phenomenal. At this point, in my opinion, you group could write the most comprehensive text to be had. So where can I stand in line to buy the first book.
Hehe - where's the cash come from? Actually - there was a little booklet some years ago from a parallel charity. But the money ran out and the charity retired ...
We don’t want to be paid , it could change the “we’re all in this together ” to a “them and us” scenario which would probably be detrimental to the forum as a whole.
Yes, this was my bible at the beginning: although it’s a bit less informative about GCA which KG didn't have, it’s very good on PMR which she did. Since then, I’ve found this forum the best port of call for GCA info because so many of us have it.
Hi Ifold, I having nothing I can add to the already brilliant information/advice others have already written, but welcome to this forum where there will always be someone happy and willing to listen and help.
Hi ifeelold, I cannot offer advice in the way that the experienced and knowledgeable people above can do, but I would like to offer you some reassurance. I can hear the desperation and despair in your voice and I too, felt that way at first. I have had PMR for nearly 3.5 years now, and boy, it still feels like yesterday when I got that diagnosis. But with time, and the sage advice from those on this forum, I have come to terms with PMR and I live a reasonably “normal” and active life. The thing I had to learn was that it is imperative to get the pain under control, and that means you must take the required amount of prednisolone. Many of us have been in too much of a rush to decrease our dose with the inevitable flare forcing us back up the rollercoaster. With help from your doctor, ensure you have a dose that makes you feel good again, and then follow the tapering plans offered by this forum. Once the pain is under control, you can function and I assure you that you’ll feel stronger and back in control. It’s about going slowly with the taper and seeking the wisdom and support that you have found from those above who have written. This is a wonderful forum, stay connected. 🙏
Thank you for this... after finding this forum yesterday, crying all afternoon, and finally accepting this reality i decided the same thing. I'm going to make friends with the prednisone, even if it means taking medications for high blood pressure (last month) diabetes (my sugar has never been high, now its 110) and additional vitamins for bones, etc.. I'm super active. i love the outdoors, i love to work out. when I'm in pain, I'm useless. I will contact my doctor today and review what I've been doing. and discuss a plan. but I'm done with the pain. I've been in a rush to get off the meds. i have to accept this. Thank you again.
You already sound more positive, that is fantastic. With regard to the other meds, well I can’t advise you there, but I have learned that pred does impact on the way our body processes (if that is the right word), certain foods. Carbs are absolutely a threat to blood sugar, so perhaps just a consideration of that in your diet will make a huge difference. There is loads of advice on this site regarding diet and pred (prednisolone), and others who know more can help there. Hang in lovely one, we are on your side. 💪
I would be very interested in any diet and prednisone information. Diabetes is one of my biggest fears. my brother has already had amputations from this awful condition.
As PMRpro says -cut the carbs -and diabetes is not a given even though it may be in the family.
My late hubby developed Type2 diabetes in his 60s -but I think real problems (like amputation) are more likely with people with Type 1 diabetes (which usually occurs earlier in life) which is maybe what your bother had.
I believe steroid induced diabetes is more like to be Type 2.
Hi, FYI, I have had PMR since 2013, without any of the horrible side effects I feared. My blood sugar is not high, I had cataract surgery last month, at age 75, not caused by pred, and my weight has stayed exactly where I started. My daily dose of prednisone is, on average 5 mg. Just sayin...🤓
Hi just read that you like to work out the one thing I done research on was a mini trampoline and even just doing 10min on it I feel better it’s a great way of moving the lymphatic system. Maybe give it a try x
Welcome to the forum. Others have written some wonderful words of encouragement. The feelings you describe are 'normal' grief reactions for the loss of your previous good health and the effect that is having on your whole life. It may help you to find a good counsellor who will help you work through this stage.
However, having said that, you are only 6 months from diagnosis and already on 8mg which seems to be too low a dose to deal with your PMR inflammation. From what you say, you have tried to get even lower in such a short time. By comparison, after 6 months I was at 10mg after slowly tapering from 15mg at diagnosis. We are all different, but I'm sure not many of us were at your level at such an early stage.
When you reduce your dose, have you used a very slow taper, such as the DSNS (Dead Slow Nearly Stop) which you'll find in the FAQs? That can help, but what helps the most is having enough pred to cover the daily inflammation - not just the night, as you are doing. Again, to give you a comparison, it has taken me 10 months to taper from 5mg to zero pred at a rate of 0.5mg/month, using the DSNS taper. I'm sure this isn't what you want to hear, but we all have to manage this condition at its pace, not ours!
Please talk with your doctor about how you feel and your concerns about the side effects of pred which seem to be preventing you from taking the dose that your PMR needs.
Thank you. my low dose is because (in my ignorance and stubbornness) i never was truly out of pain. i would compensate with ibuprofen and lots of wine. ( at night it really helped mask the pain) . So i was going low, and living with small amounts of pain. I'm so thankful to hear you are at zero mg now. that gives me hope. I have decided to make "no pain" my prednisone goal, and then super slow down the taper. thank you for your feedback.
Hi ifeelold I can completely understand what you’re feeling. I was 51 when diagnosed, and it didn’t help the literature then said average age of onset for PMR was 70! That’s how I felt! You will get through this bit. As others have said, it is important to arm yourself with information. Kate Gilbert’s book PMR GCA A Survival Guide is very valuable to start.
Advil usually does nothing for PMR and it has side effects. It sounds as tho you are not on enough Prednisone to manage the PMR. Yes, Pred has side effects but they usually can be proactively managed. Most of us take Pred in the morning to mimic our own biorhythms and to manage the onslaught of early morning inflammation to help with the day. Are you able to discuss with your medic to up the dose til you have relief from most of the pain? you’ll want to stay on that dose at least 4-6 weeks to mop up the inflammation. Then taper slowly ( no more than 10% of the dose you’re on at the time of the taper). There are several taper plans on this site that have worked well for many folks.
I am a nurse and worked full time managing a busy ICU for most of my PMR journey. It makes it much more difficult to pace yourself which is necessary. Are you able to take some time off to stabilize things then return to work? It’s also okay to let friends/family and even your students know you have a condition which you’re working through and their support is appreciated. Most will understand.
Don’t hesitate to ask questions on this forum. You will get through this.
Well personally I’ve felt better physically in my 70s then I did in a lot of my 60s… but perhaps I’m just lucky. As I come from a long line of long-lived women not intending to go anywhere soon! ..
Can understand that, you are going through a very rough time, but as you say (for other things) - hope springs eternal! Hopefully health-wise as well...
..as for looking forward to 70, some of us are past that milestone ---or should that be millstone! Hopefully not.
Christian is adamant it is PMR - there isn't any evidence of anything else and the symptoms really are textbook. It had started before but I had a jab last week which has possibly added to it a bit - but there are add-ons and I think some of them are a combo of the last 6 months plus the lack of Pain Clinic input for the previous 18 months. All together it is just plain uncomfortable. Sod Covid ...
Hi When did you start PMR? I started with PMR in May 2020 and stopped taking Pred in late Nov 2021. I am still at 0mg and but I developed some muscle weakness which is gradually improving with exercise. Today I am having my first physio session which will hopefully help improve my muscle strength even more.. Everyone recovers at a different rate and for some it can be a long drawn out process and also depends on whether you have any other underlying health conditions. I was quite fit and healthy before I developed PMR. When it started the symptoms were horrific. I thought the symptoms and the side affects of Pred would never end and I felt very depressed and anxious but there is light at the end of the tunnel and right now I feel great much like my former self, I am active again, swimming, walking, cycling etc and doing things that I enjoyed pre PMR. It’s a slow process but you will get there 🙂
Oh my god. Thank you so much. i so needed to hear this. I know i just have to start back at square one and work slowly. but it sounds like you've made it. best of luck to you in the future. thank you for staying on this site to share your success.
I have stayed on the forum because there are a lot of members and new members who are struggling with the diagnosis, the symptoms and the side affects of Pred as I did. This forum is absolutely brilliant and there is a lot of support and excellent advice but also think there is a degree of negativity. PMR for those in the early stages is very frightening, I think it is important that although the outcome is not the same for everyone, there is hope and people do actually recover and can stop taking the Pred. I am aware that a relapse could happen but it might not and hopefully won’t. At least I now know what to expect. I’ve just had my first physio session, the physio confirmed my muscle weakness and has given me a number of exercises to do, he thinks it may a few months to build up my muscle strength but was very reassuring but basically it’s down to me to make sure I do the exercises. I see him again in 2 weeks. I wish you every success in your recovery. Good luck 🙂
Hello Lib..it's Nick here from Toronto ..mine developed as well around that time frame and my day-to-day muscle pain is what my biggest issue is,,,, I have it in my chest pain... most of my back ...my neck.. clavicle's. forearms and hands... I have no swelling or redness anything like that ,but it's a constant muscle pain that is very different difficult day to day and many doctors and rheumatologist and the prednisone I'm trying to taper currently at five but as I go down it seems to be worse but the doctor and saysI gotta get off it. I think I'm better at 15 but I'm kind of worried about that and the doctor is very aggressive at getting this down ...I've tried everything, supplements....diet ,everything else.... can you let me know how yours has progressed and how your pain is and how it was along the way. I had the increased inflammatory markers at the beginning ( way out of whack ) for some reason out of the blue they were in check last month for the first time and my pain and my issues are exactly the same, so that's weird..... I still think it's PMR but my doctor thinks I have sero negative arthritis,I don't think so and he wants me to go on methotrexate I don't wanna take another drug,.sorry for using dictation this might be choppy.Thanks in advance..
That is a great question. i hope i can see her reply. was there any pain between prednisone stages that you just had to deal with, if so how long, etc.. I was doing good (2/10 -4/10 pain scale) until i went from 8 to 7. in 2 weeks and "Bam". my pain rocketed to 8/10 pain. ive upped to 10 today and it did help. it took hours, but i'm ok with starting from 10 and working back down. Super slow this time.
It doesn't matter how slowly you taper - that just makes the process more comfortable and helps with return of adrenal function. NOTHING will get you below the dose you are looking for: the lowest effective dose for YOUR illness and at this time. By going slowly it makes it easier to know if it is the PMR or steroid withdrawal in response to a too big drop - but it can't beat the reality that this dose is what is required at present.
Hi Nick apologies for the long delay in responding. I haven’t been on line for a while and have been away on holiday. At the start of my diagnosis my ESR was 102 and my CRP 194.7 and I was in the most horrific pain. I started a on 20 mg and gradually reduced. I think the pain that I had was a combination of PMR and side affects from the steroids. I developed carpel tunnel, tendinitis, pins and needles, numbness in my hands and could hardly hold a pen without pain. I couldn’t lift or stretch my arms and at times struggled walking or getting up from a chair. I did get to 5mg possibly to quickly and had to increase the dose and then taper REALLY slowly, eventually these symptoms did ease but I was left with muscle weakness rather than pain. I stopped taking Pred in November 2021 and did have some small flares in the first few weeks after I had stopped but was told by my rheumatologist that this was common. It was likely withdrawal symptoms withdrawal symptoms could last for a while but they continued to monitor my symptoms. Well I am pleased to say that I am still Pred free and haven’t had any flares for for the last few months. I am having physio sessions at the hospital and my muscle strength is greatly improved. My arm strength is virtually back to where I was pre PMR, my legs are still a bit weak but the physio has advised it could take months to build up my leg strength again because my leg muscles were very weak and needed rebuilding. it is important that I follow the exercises daily. I am very determined so I am following the instructions and definitely feeling great right now. Back to walking regular 5k, swimming a etc. and not in pain so for now all good.
My heart goes out to you. It must feel so overwhelming but stay strong. If you need extra help your doctor could offer anti depressants. I argued against them for months but have been much better on a low dose which acts more like a sleeping pill. I hope things improve soon
I asked the same questions and felt the same feelings in the beginning too!! Getting through all the emotions to acceptance really helps, as does making practical accommodations as you adjust to a life with PMR. Eventually I stopped focusing on why I got it, and when will it be over as these are things out of my control and I may never get those answers.
Now I try and focus on what I can change (rest, activity, diet, who I get support from). I do miss being the wife, mom, and grandma (to twin grandsons), I envisioned. I was a 55 year old newlywed who recently retired when symptoms started. It forever changed my life, but at least now I can adopt a new lifestyle to meet my needs with the support of the fine folks on this forum. I think it is important to mourn our losses and try to explore a new present/future, albeit different.
Pre COVID I was able to travel with my husband, I lost 30 pounds and got off blood pressure meds, and am able to enjoy some physical activity (deep water exercises, walking, golf). I also pay better attention to my health and have developed greater compassion for others and patience with myself. So there are some positive impacts along with the challenges.
You are not alone, we “get it” more than most who don’t have PMR/GCA.
Yes I am, 8mg tapering down to 7.5mg. I got “stuck” at 9mg for some time, so started methotrexate in January.
I’ve had (diagnosed) PMR for four years as of May 1st (but symptoms started 6 months earlier….it took awhile to figure out and I had no GP for 3 of the months as I had just moved to a new community).
I'm a newlywed too. and this is so strenuous on our relationship. My symptoms were undiagnosed for about 4 months. i saw knee/hip specialists, multiple walk in clinics for pain medication, hospitals in the middle of the night, cancer specialists. finally my regular family doctor referred me to a rheumatologist. My Bills are astronomical and keep coming. I think I made a mistake from the very beginning by trying to be on the lowest dose possible. but I've not been pain-free since August of 2021. I'm going to try a new approach now that I've accepted this (as of yesterday) I'm going to get pain free no matter what the dose, then slowly work down from there. all of the smart, caring people on this site have really opened my eyes. my outlook is better. there is life during, and after (hopefully) PMR. Thank you again.
Yes, my relationship with my new husband was strained too as trying to figure out what was wrong with me, combined with the pain and immobility, impacted us as a couple. Between the fear, uncertainty, chronic progressive pain, and the other stresses of moving, renovating a house, etc, it took its toll. At times I feel like I’ve accepted my PMR, but he has not, especially when my activity levels are low while flaring or in pain. We both thought our retirement together would look much different.
I am fortunate that all the specialist appointments, medication and support services are covered cost-wise here in Canada (and we have a good health benefits plan).
I’m glad you’ve got a diagnosis and a new approach to treatment of your PMR. Quality of life is key!!
Hi ifeelold,I was diagnosed with PMR in September 2021 and have been able to taper the prednisolone tablets from 12.5mg to now on 3.5mg. Through out my journey with PMR over the last 7 months, perhaps I am lucky not to have any severe flares apart from some slight discomfort. My attitude is always be positive in life. This only began when tapering from 4.5 mg to 4mg. Over the time period, this discomfort has eased. I am now on 3.5mg. It will be interesting to see if my journey with PMR continues with a smooth, slow tapering of the prednisolone. Time will tell.Stay strong and be positive in your thoughts. I am sure it will help you to overcome your difficulties with PMR.
Hi , we all relate to how you are feeling and I felt the hardest thing for me was accepting the illness and the change in lifestyle especially for someone that was so active . The best advice I could give you is to drop your preds very slowly by 1/2 mg because I tried to drop to quickly and it was like a rollercoaster.
I was 48 when my pains all started had moved back to Scotland from living in America 15years and 10 months later in terrible pain .
almost 3 years now and I’m on methotrexate injection and down to 4 mg yes it’s a very long road and hopefully get to the other side of this 🤞
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Does this tiredness ever go?
Ever go away 
does PMR eventually go away
Does pmr ever go away? Does anyone know of anyone that has fully recovered from pmr?
Will PMR never go away!
