I have just been diagnosed with polymyalgia which arrived without warning and very suddenly and am now taking prednisolone. Any advice would be gratefully received but can I expect it to get worse/better/stay the same?
Polymyalgia victim!: I have just been diagnosed... - PMRGCAuk
Polymyalgia victim!
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Jayveedee
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DorsetLadyPMRGCAuk volunteer
Hi and welcome,
This link may give a idea of what’s to come, but so long as you are taking the correct level of steroids then life should certainly get better. Won’t say back to normal, because despite the medication you still have the underlying illness - until it goes into remission - so that means life will be different….but you can do a lot to help yourself -
healthunlocked.com/pmrgcauk...
There are plenty of other information posts to look at under the FAQs - might seem a bit daunting to start with - but the more information you have about your illness, the better you will cope -
healthunlocked.com/pmrgcauk...
When you feel able, can you put a bit more info on your profile..date of diagnosis, starting dose, what led to diagnosis, any other medical issues etc…helps us to help you when answering questions, and means you don’t have to repeat every time you post in future.
Thank you, I’ll do that!
Thank you…and good luck…and remember there’s always someone on here who will help…whatever the issue.
Thank you, that’s a great comfort.
I think one of the most disconcerting things about PMR is how suddenly it comes on. I remember one day I was painfree, the next I couldn't get out of bed because of the pain and stiffness. My own experience is that prednisolone dealt with the pain and stiffness almost miraculously, but it did nothing for the deathly fatigue, which one just has to adapt to, learning to pace activity and accepting one's limitations.
Thank you so much for replying and that’s just how it happened to me. One week I was practicing yoga on the beach and then couldn’t get out of bed. It is reassuring to know that there are a lot of people having the same problem, most people I have told have never heard of it. Than you again. Jean
I'm just grateful that we no longer use the original name from when the condition was first identified in 1888 - 'Senile Rheumatic Gout' - which somehow sounds so much worse.
That's a horrible name for this illness - fits perfectly though, on reflection!
I'm fed up with having PMR, perhaps I should change it to SRG 😂. Also most people would commiserate with us having SRG but nobody understands when we say we have PMR.
in reply to Constance13
Yep! When I say I have juvenile RA people don’t understand nor do they realise you generally can’t see RA, they expect gnarled hands etc
Constance13 in reply to
Even the rheumies and doctors!🤨 There is absolutely no point in my going to a rheumy because I am hyper mobile and they just ask me to bend this way and that and then say "not inflammatory arthritis or PMR".😡 Even though my blood counts are relatively high.
How strange - the rheumies here don't say that. And since they come across it in lupus patients who also have Ehrler's Danlos syndrome they shouldn't be so narrow minded.
Well, to be really honest, I had an excellent one (private) and he sussed it straight away - but that one has retired. Now I have a delightful rheumie - such a nice man - but he has no idea!!😂
I think it's the pred that's making me senile!
I don't think so! I am 82 (senile only by age) and I've been taking Pred since2012. Without it I would probably be under the daisies by now.
Glad to see you have found us and DL has already answered.
Please take the time to go through the FAQ's in the Pinned Post Section right hand side of page, which you may not have noticed. The more you can learn the better.
Knowledge is power.
PMRproAmbassador
Hi and welcome!
Life will certainly get better than the period immediately before the diagnosis and pred. How much better can't be forecast - some people continue to have pain and stiffness, others are pretty much pain-free. Some of that can be mitigated by lifestyle changes and learning to avoid the things that don't agree with you - in my case, like housework (I was a martyr to my back anyway but PMR and that problem do seem to wander around hand in hand)! Concentrate on the things you enjoy doing - but in moderation, don't dive into the deep end, work up to it slowly, "training" to find out how far you can go without payback, know your limits and stick to them.
For the vast majority of people PMR will bumble along for some years and they will work carefully at tapering the dose and sooner or later they will get to zero pred and it is gone. But you cannot push it - PMR came when it wanted to and it will go when it wants to. In the meantime the idea is to learn to live well with it - it might not be your old normal, but it can be a fairly good normal. I've travelled halfway round the world a few times since I developed PMR, both before pred and after, continued skiing though I gave that up eventually for other reasons, we continued camping (caravan and motorhome, not tent!) until a couple of years ago - stopped because of OH's health, not mine. I am a sole carer and manage OK for most things - you can get round all sorts of things with a bit of imagination!
I never consider myself a victim - too negative a way of looking at living with PMR which, while it was a bit of a pain in the 5 years I had before it was diagnosed, has led to me meeting some wonderful and very lovely people and an opportunity to participate in research and the charity that I wouldn't have without PMR.
Thank you so much for your reply, perhaps victim was a rather strong word but that’s a bit how it feels I’m afraid. It’s like suddenly losing control of your own body and something else taking it over! I certainly won’t have a problem avoiding the housework but will continue with beach walks and yoga. Luckily my diagnosis was really quick so didn’t suffer for too long before starting on prednisolone. It’s a great comfort to know there are other people in the same boat, so to speak!
Thank you again.
Oh I do understand - you are really not alone in feeling that way. I think it is a bit like that saying about needing so many more muscles to frown than to smile - if you look out positively you do feel better.
Be careful with beach walks - I can't walk on sand without it being dreadfully tiring - or any uneven ground if it comes to that. You know, like UK pavements 
You can TRY anything within reason - but make sure you can bail out if necessary. It is also a good idea to do repeated short walks at first to be sure you don't get there and can't get back! Or get floored for the next day - exercising every other day is also important so you get a chance to recover on the rest day. I know it WASN'T like that before - but this is a whole new normal to get used to.
Very good description, and very positive too!
Hello Jayveedee and welcome 😊
My PMR came on very suddenly too, but as I had had a fairly lengthy period of ill health beforehand, there was definitely a feeling of “Oh no, now what?” 😳 However having found this forum, I’ve got things a bit more in proportion and as another poster said, I’ve found that knowledge is power 💪
Read around the issues that concern you and absorb the wisdom to be found here. I can’t really add much else to the comments already made, but as DL says,life should get better!
Wishing you all the best
Nextoneplease x
Thank you, I’m overwhelmed by the support from everyone.
We’ve all been there…so we understand!
Hello Jayveedee and welcome 😊, Key people have already answered. Glad you have had quick diagnosis and you are on your way. We all react and respond differently but have one thing in common. We understand and get it. Ask away if confused. It's a delightful disease in finding new ways to try us. Stay positive but do not push it.
Thank you, it’s certainly confusing, like having an alien take over your body lol!
Welcome and as the others have clearly indicated in all their responses this is a great place to come for help etc. Everyone is so lovely.
I've had PMR since beginning of this year but it came on slowly til it reached a peak. Thankfully doctor diagnosed it quickly once I went to them.
Like the others say its trial and error of what you can't and go do but you will adjust and get through it one way or another 😁 I'm much better now and have learnt how my body is throughout the day (I'm always worse until after lunch).
Good luck and keep smiling but always know there's others who can help and cheer you up on here.
Xx
Thank you, hopefully once I can get my head round the idea that something is not quite right with my body I’ll be able to look at the situation more logically. I have just increased my Pred back to 15mg as 10 wasn’t working, I’ll leave a note for my doctor at the surgery tomorrow, no hope of seeing him!! X
I know it's so hard to understand how it affects the body. I told my doctor that I thought it was a very weird condition - don't think he quite got what I meant!I'm down to 10mg but it's took me awhile. Did 15 to 12.5 with not much trouble. Then tried to go to 10 but struggled so did 12 then 11 then 10. Been on 10 for 4 weeks and will be trying 9mg from next Monday. Been ok so far but as, the others say its not that you get back to what you were just better than when you were bad! I have actually found now if I do a lot of stuff I don't really suffer much but am actually worse when I do nothing. So clearly a balance.
And yes no hope of seeing doctors mine has been all calls.
X
Do you just amend the medication yourself or do you wait for the doctor to tell you, and if you do, do you notify him?
It really depends on your doctor, but initially you shouldn’t really be altering your meds yourself. As you get more experienced, some may be happy to let you make adjustments, but many aren’t.
At the beginning of my GCA, my GP had given me a plan, but we decided on a monthly basis if each taper would go ahead….based on how I felt and if bloods okay. But I do have to say it was GCA, and my GP was very cautious….youll understand why if you read my story.
Later on, when I changed GPs, new one allowed me to do my own thing on the proviso that I kept him in the loop…and as he said “you know your illness and body better than I do”.
Good morning Dorset lady, I do have an appointment with my doctor in a few weeks but wasn’t prepared to suffer for that long I’m afraid. Reading comments on here it seems that people reduce quite gradually by 1 or 2.5mgs rather than 5 which I did. To speak to a doctor you start ringing at 8.30 and if you’re very lucky you get to speak to the receptionist who decides if you deserve a call from a doctor! If you’re too late you have to repeat the next day! I will drop a note round to the surgery and if he’s not happy I expect he’ll ring on Monday . He’s usually pretty good and has allowed me to stay on HRT for as long as I want. Thank you, this site has been such a help.
Yes, I fully understand…and good idea to let Dr know, you need him on side during PMR, and also to be aware of what too big a taper can do. When you do talk to him, just sound him out about flexing dose if necessary…some doctors are a bit weird about steroids!
To side step the receptionists does your surgery have the eConsult facility?
My doctor instructed me how to drop. It's was 15 to 12.5 then to 10. When I first did the 10 it didn't work so I put myself back to 12.5. Doctor wasn't impressed but then agreed to to do the 12, 11, then 10. So far doing OK. Then hopefully when I do 9 from Monday. Think you dropping from 15 to 10 is lot.
And I totally feel your pain on the doctors and receptionist - nightmare!! Hope you get in OK on Monday xx
I don’t know if you were given just pred but it is normal to be prescribed vitamin D with calcium to help against pred side effects. You should also have a Dexascan to check your bone density. PMR can be life changing, but remember to rest, rest, rest. Take things slowly, don’t overdo it because the steroids make you feel fine, as the PMR has a habit of coming back and biting you!!
Thank you and yes I was prescribed vit d but I’m a bit of a vitamin nut anyway and have taken it for years. I’ve also been on HRT for 30 years to hopefully stop osteoporosis! I do like your advice to take things slowly though and will enjoy that part.
Pamper yourself, that definitely helps things. If you check the vitamins you are on and perhaps drop some (over 90% of vitamins purchased are not needed) you can buy things like bubble bath instead! Improve your diet to get the vitamins from there, perhaps you do already.
Morning Jayveedee, nothing to add to the other comments and welcome to the forum.
Find out as much as possible through website for PMR this forum and Kate Gilbert’s book on PMR - Good Luck
Yes!! I was just going to recommend Kate Gilbert's book, 'Polymyalgia Rheumatica and Giant Cell Arteritis:a survival guide'. This wonderful easy read book beautifully compliments this fantastic Forum of support which has kept me sane and well informed since my diagnosis last May.
Thank you, I was wondering which book to get.
Hi Jayveedee, mine started when I fainted doing my volunteering job, no warning at all! I ended up crawling up the my stairs on hands and knees. My clever doc diagnosed it after a blood test the following day. I am pain free now but my life has changed dramatically, from a late night party girl with lots of hols, at the mo: I have to listen to my body take it easy for the mo: hope this info helps.
Hang on in there Jayveedee. Like you, PMR came on suddenly (after dealing with months of family stress & dysfunction , bereavement, selling the house....) Like you I went from doing Yoga daily like a rubber man to struggling to walk. I have tapered from 15mg to 10mg since 1st May, and feel back to normal re yoga. It is fatigue that reminds me what we are dealing with. This forum and the wonderful regulars giving advice are an absolute life line, and as Daffodilia suggests, invest in Kate Gilbert's book.
Right, a gentle walk around the canal with Mungo our rescue dog calls.
Kindest regards, Pondweed 🧘♀️🙏
Hi there. Only one more thing to add to all the great advice you’ve had already - you mention tapering from 15 mgs to 10 mgs and ‘now suffering a bit’. I think the idea is not to suffer ! But after yo-yoing a bit on my dosage I learned from this forum about the ‘ Dead slow, nearly Stop ‘ or DSNS method of tapering and 🤞I’m down to 3 mgs a day now and hoping I might knock off another mg in the next month. The tiredness is a bit of a bore but it waxes and wains with me. I found previously that when the dosage was too low and the stiffness returned my mood would sink too and the combination of low mood and tiredness meant I couldn’t be bothered to do a thing. Even reading became too much of an effort. Now on a slower reduction, those days are fewer.
I think you’re right, it was my doctors advice but it was a bit quick I think. I was only on 15mg for a few weeks but was able to help a friend move three pallets of bricks, don’t think I could do that now lol!! I consider myself lucky that I did at least get to see a doctor, so many people having problems!
That is the usual way to reduce the dose of pred when it is used short term, PMR is a totally different need and you are not reducing the dose to get off, you are tapering the dose to find the lowest effective dose and that may be somewhere between 10 and 15 in the earlier stages of PMR. Over the years I have come to the conclusion that at the start it is at its most active so needs more pred - that period may be quite long or much shorter but if you rush to get to a lower dose you easily overshoot. It is no use taking too little at any given time, the leftover inflammation just builds up, as a dripping tap eventually fills a bucket and overflows and you are back where you started. The process is also known as titration - usually they start low and build up the dose but that doesn't work well in PMR and in GCA it must NOT be used, the risk of loss of vision is too high.
Hi and welcome, this is the best place for solidly researched information and advice. I am 8 months in and feeling better than I have in years. I have made significant changes in my lifestyle and thinking and while that sounded daunting to me when I was first diagnosed like you, I am pretty pleased with my progress now and proud of the changes I have made made. It can get hard but there are so many people here to support you. All the best in your journey and do make time to put your needs first 😊
I concur with the other replies. Just don’t expect to be able to do all the things you did before especially in the morning and evening. Playing with small grandchildren on the floor is a good example! … and doing too much one day seems to make the following day worse. My PMR wont completely go away and I have now had it 2 1/2 years- and a little bit of a roller coaster ride on steroids. Now on 4mg and it is stable and I want to try to reduce very very slowly again. Have refused MTX
However, I can at least now do most things. Off to walk the dogs!!!
Just be patient and don’t overdo the activities
Thank you, I think it’s going to take a while to get used to but talking to everyone here has been a big help. I don’t have my own dog but do look after quite a lot for friends so have to walk most days. Hoping that keeping active will help!
My blood work indicated that I was on the spectrum of PMR about 4 months ago which also came on very suddenly. I have just weaned off prednisone and I think if you can get some supplemental support like PT, massage, light exercise combined with enough rest, and vitamins you have a better chance of working through it quicker. No guarantees but it did help me. Keep your gut healthy with probiotics and your sugar levels supported by Berberine . Not all doctors are educated with natural supplements but I know these are important while on prednisone. I do experience some hip discomfort still if I overdo after weaning but I am hopeful that my own immune system is getting healthier enough to battle any relapse. Try not to get too stressed over this new situation and know there are better days ahead. I have a health provider who I truly respect and trust. I pray you have one as well. Its important!
🙏🙏
There are no blood tests that show someone is "on a spectrum of PMR" - all the blood markers show is that there is inflammation present in the body, there is a wide range of conditions that can cause similar symptoms due to inflammation which then raises the ESR and CRP. The diagnosis then comes on a balance of suspicion.
Thank you but I’m not sure what PT is. I have a probiotic drink every morning with my vitamins and supplements that I have taken for years, which is why it came as a big surprise that I have something wrong with me. I had a massage today and walk on the beach most days but having a problem getting my head round the fact that I don’t seem able to control my own body at the moment. Thank you for your advice and I hope you continue improving.
You sound like you are on the right track! PT is physical therapy which a doctor can prescibe to help you in exercises that help with stiffness and physical strength building. I too was shocked at my inflammation because I've always practiced a healthy regime. I was told it is most often triggered by something. Wishing you healthy healing!
“I was told it is most often triggered by something.”
Most forums/studies etc say similar to this -,
What causes GCA and PMR?
Doctors aren’t sure what causes the inflammation associated with GCA or PMR. Aging and problems with the immune system are possible factors. It also could be related to your genes, or to an environmental trigger like an infection.
From on here - and personal experience-
Stress , whether physical (following operation etc ) or mental (catering for someone etc) seem to very often be the catalyst that finally triggers it.
If you do get physiotherapy be careful. The physiotherapist should ideally know something about PMR and the fact that vigorous and/or repetitive exercise is not good for us. Exercises to maintain range of motion, and gentle exercises to maintain strength are good.
Thank you, I’ll just continue with yoga and walking although when you live on your own there is always something to do. Gardening, shopping, housework etc.!
Great hair! I don’t have PMR but Stills which for me manifests mainly as RA. I do have chronic fatigue and endorse all the advice here re exercise. I time my walks for example and when I start to feel tired turn back so I know I can get back. Wish you well 😀
HeronNS in reply to
Yes! I remember a few years ago, I was at 4 mg, my husband and son and I went for a walk along a local trail. I didn't have my pedometer with me so I don't know how far we walked. I do remember wondering at some point if I would make it back to the car! Felt like I was wading through water....
Hi Jayveedee,I was finally diagnosed with polymyalgia rheumatica a couple of days ago too. Although I've been treated with Prednisone since January which has thankfully eased the dreadful pain. I was quite surprised to read that it it tends to affect older people and that I'm relatively young at 56 to have it. It's quite a shocker to suddenly wake up with it isn't it. Nothing prepares you for that part.
So currently I'm under the care of a rheumatologist and GP who are now dealing with a very gradual reduction in meds. I started on 30mg and am now on alternate 7.5 & 5mg doses. Before 5mgs was a step too far and the pain started creeping back, we wait...... I don't take the omeprazol because I was worried about the osteoporosis part, but I always take my meds with food and haven't had any problems so far.
Finishing on a positive note, a couple of weeks ago I walked 142kms in a week of the Camino de Santiago with a friend. It was amazing, exhilarating and one of the best things I've ever done. I felt great afterwards and I'm so glad that I went ahead with it.
Good luck with your PMR journey.
That’s a high start for PMR, any reason why? Probably the reason you could reduce quite easily until you got back down to 7.5mg.
That was back in January because I literally couldn't walk, then it was reduced quite quickly because it worked very quickly, it was reduced week by week down to 5mgs which was my tipping point for pain again, so I've been on 7.5 for a few weeks and am going to try reducing over the next 7 months from 7.5 to 5mgs. Hopefully it will work at a slower pace now that I have a definitive diagnosis with the rheumatologist we'll see what happens.
I don't know about anyone else in here, but I literally felt as though I was turning into a statue. Truly awful. 😏
Yep, me too! 😢
Initially it felt like quite a lonely illness because it's invisible, but I'm learning to not worry about any sceptical or disinterested reactions and just live within my parameters as each day sees fit. 😊
Okay…it’s just that usual starting dose for PMR is between 12.5-25mg, so to us 30mg is high. Thought it maybe be because you had Spanish doctors with different views.
Good news that you’ve done so well, but take it easier from now on, especially as, I think, you are limited with dose sizes, no 1mgs? …..
Yeah, another British friend over here in Spain was also prescribed 30mgs initially. For me it worked the same day and to be pain free was almost a miracle, but yes, glad to have reduced away from that dose fairly quickly! We have 2.5mg tablets available with grooves which can be halved, so there is leeway to micro manage it if the medics see fit.
That’s fine….you may need smaller tapers…some don’t, but many do. To date your journey sounds a lot easier than many on here, so let’s hope it continues as such.
Good morning Sunnyspain and thank you for your comments. Yes you are so right that it is the sudden shock of not being in control of your body that takes some getting used to! I naively thought that I would take steroids for a few months then be back to my usual healthy self but after reducing from 15mg to 10, and reading all the lovely comments here, I realise that isn’t going to happen any time soon. Your walk sounds amazing and well done.
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