Other peoples reaction, physical / mental feeling when on steroid treatment ..
Recent diagnosis of PMR: Other peoples reaction... - PMRGCAuk
Recent diagnosis of PMR
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DorsetLadyPMRGCAuk volunteer
Might like to have a look at this -including other people replies -
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Me - total relief that after 5 years of daily pain I felt SO much better and could move. I have never resented the less good sides of pred because it gave me my life back. Most of the putative adverse effects of pred can be mitigated or avoided when you know how and I had suffered some of them while the PMR was untreated - so definitely not due to pred.
I commenced 15 mgs daily in May 22 , after 2 reviews with rheumatologist, I am now following a tailored withdrawal programme, I was given a choice ,could have been the proverbial hare, I chose the tortoise ..I am confused whether, my feeling of being unwell is the PMR or side effects of prednisilone ? I am doing a bit of research with some advised content from health unlocked..🤞Thanks ..
Well we will always say the tortiose wins the race. But whichever way you start, the crucial fact is that you are never reducing relentlessly to zero. Pred has cured nothing, it is a management strategy to allow a better quality of life until the underlying autoimmune disorder that creates the inflammation and therefore the symptoms burns out and you go into remission. How long that will take remains in the stars - it may be a year or two but more likely to be considerably longer. And NOTHING you or a rheumy can do will change that.
What exactly do you mean by “feeling unwell”?
If you give us specific examples we can probably tell you if it’s Pred side effects or the PMR -and also make suggestions of how to mitigate or at least reduce them ….
In the main it is total lethargy, I am tired of being tired.. loss of confidence and irritation when in large gatherings …
My mouth is sore , and the taste is awful, the dentist suggests that this may be due to the Pred… Oral mouth was given..
Eyes seem misty, optician has said no change in vision, I now have eye drops..
These have occurred since taking Pred……
Lethargy is mainly down to illness -you have a chronic autoimmune disease, and I’m afraid it’s all part and parcel of it, if you look at the link I forwarded to you, and in particular note 4 you will find lots more information on managing fatigue/lethargy etc. Plus the more you understand your illness, and realise it’s not just you, and it’s just a phase to go through, the better you will cope.
Lack of confidence may well be down to your change in circumstances -and very understandable.
Your life has been turned upside down, you aren’t YOU any more, you aren’t in control, and you probably don’t know anybody else personally with PMR. Your friends and family don’t understand your illness, and maybe aren’t as compassionate as if you had a broken leg or something more serious like cancer.
It can be very lonely initially -that’s why we are here to help you, we do understand.
Your sore mouth, your misty eyes and irritation are definitely down to the Pred, but all will improve as you reduce the medication.
Things will, and do get better- believe me.
I had GCA, had already lost sight in one eye when started on 80mg Pred, if I can survive it, you can…..
Just for info- healthunlocked.com/pmrgcauk...
Thank you things are becoming more clearer, have quite a bit of reading to do on the subject ..
Only just read your post properly just now DL. It’s written very sensitively … ‘it can be very lonely initially’ ….
that sentence is so true as is ‘your friends and family don’t understand your illness’.
I can so relate to that. Thank you. 🌺
Dorset Lady you couldn't have summed things up better in you r paragraph starting " You aren't you anymore" I could have written those exact words. Im starting to think Ive lost the real me forever 😥
It's a comfort to know others feel the same although wouldn't wish this on anyone.
You haven’t lost the real you..it’s just in hiding for the time being whilst you sort out all the other rubbish (being polite here!) is going on.
You will find yourself again… in time. 😊
Thanks......I really hope so
In some ways I think PMR has helped me find a "real" me which had been hidden under years of being a wife and mother and only partially uncovered by my little part time job. Although I'd already learned I didn't need permission to enjoy "me" time, PMR kind of helps me justify it to others.
How long had you had PMR symptoms before starting pred?
Is the sore mouth due to thrush? That could also cause the taste. It is indirectly pred - but treatable. I had dry eyes due to PMR - pred actually helps mine.
I would say about 2 years before I was given a diagnosis.. Thankyou for your advice, there are so many variants on what is causing what 🤔..I am trying to look at each problem and manage it best I can ..
My best advice is to eat low carbs and sugar to avoid weight gain. I was very strict, cut out potatoes, rice, pasta and didn't touch a biscuit, cake or crisp for 18 months. Weighed myself every day. I actually lost some weight. This became my challenge. I also had some nhs physio to try and stop too much muscle tone loss.
Hi there,
Me. (Psychologicaly & Emotionally):-
- shock - that as a healthy, active & fit person I'd suddenly been diagnosed with a systemic illness
- anger - why me!
- fear - how will steroids affect me
- frustration - at not being as physically 'capable'
- sad - at aspects of my life PMR had taken away
- impatient- to "get off" the steroids
- alone - on a little-known journey
- naive - once I'd learnt a few home truths about PMR
(Physically)
- tired & fatigued
- some head pain
- breathlessness some times
- blurry vision very occasionally
- insomnia
- weight gain
- some hair thinning
- fragile, delicate skin
- osteoporosis
- cataracts beginning to form
Others will have different lists to mine and will have experienced more, (and some less) of the potential side effects.
I'm now 3yrs in to my PMR and have found I'm more than able to 'manage' many of the issues I was concerned about.
Taking steroids has not been the journey of doom & gloom I'd anticipated.
Of course you have to treat them with respect, and of course there'll be 'blips' along the way, but as Pro said, educate yourself as much as possible as there's much you can do to mitigate or avoid the consequences.
A brilliant post Kendrew - you’ve ticked all the boxes and a joy to read as you’ve encapsulated all those things that PMR makes us feel. Thank you! 🏆
I second Autumnlass - brilliant post and says exactly how I felt. 1.5 years in and 3 flares; sometimes I am not so sure which effects are down to PMR and which to the pred. Fatigue is one and sometimes a feeling that I have a tumble drier just at the back of my head which sucks in my thoughts and tumbles them around so that I can't get a grip of any of them. Sometimes palpitations. I am sure that knee bursitis, that started at the same time as PMR, is part of it - stops me exercising as much as I would like so have to be very careful with diet.
Actually the one thing that really ‘does my head in’ 🤣 is the wretched brain fog. It’s bad enough ageing but to have another bowlful of brain fog on top is the blooming limit!!
Hi, It sounds as if we on the same journey, as I have been fortunate to have a healthy active life style..
Thank you for response ..
Brilliant synopsis Kedrew. I seem to manage it but do feel unwell all the time. Writing this in bed early morning and feel like I have been partying for a week. Diagnosed 18 months ago, started on 30 mg arthritis from a young age. Currently down to 2.5 mg but not easy, struggling tbh Also on bi-weekly injections. Beside managing the physical pain changes in my body and the limitations it has put on my lifestyle, keeping the mental strength is a daily challenge. I was so active and so much energy, loved to travel and explore, South America, island hopping in Greece etc.. And as most sufferers point out there is total lack of understanding from family, friends and medical staff. But determined not going to rob me of everything. So now dragging myself into the shower to fight another day.
Hi Bothan,
It can be a very unpredictable condition to live with or manage at times and just when you think you've learnt how to maintain some kind of stability, up pops another big fat problem to resolve!
However, I've frequently said that although this condition has taken much away from me, it's also given much back to me too.......
- I've developed more realistic expectations
- I've learnt how to find enormous joy in the simple things in life
- I've developed a huge love of gardening
- I've discovered how much I love birdwatching & nature in general
- I've taken up knitting again and love it
- I value so much more the truly important things in life... time spent with friends & family, having food on my table, a roof over my head
- the total unimportance of material possessions, social position, excessive wealth
- the time and space to simply 'be me'.
- the realisation that there's so much I'd never have explored if I hadn't been living with PMR.
Life with PMR/GCA is never going to be easy but we have a choice.... we can let it become an all-consuming catastrophe, or we can build ourselves up by focusing on the many positives that can & will emerge in order to carry us forward. For me, it's been certain people on this forum that have taught me that!
Well said!
Bang on Kendrew, you have said everything I wanted to say but could not formulate , thank you .
My PMR has cos tme many sleepless nights, and insomnia has been a big issue, tried pretty much everything, hot milk before bed, relaxing music in the background lavender pillow spray on my pillow, I cold go on. I am on 14mg and trying to taper, mability to concentrate has been taken from me I can only just manage a chapter, I feel like I have developed into another person and my tolerance with people is not good. After 11 months of taking prednisolone, at my last visit to my GP she told me it could all go on for 2 years. But hey I try to keep smiling and concentrate on the smaller pleasures😀😀😀👍
Hi justyellow,
I'm so sorry you've had to join our 'club'! Unfortunately 2yrs is a bit of an underestimated time..... 5-7yrs is the average length of time PMR can remain active before going into remission...despite what the 'guidelines' say!
I'm 3yrs in and although everything feels quite overwhelming at the beginning, it really isn't as bad as you think it's going to be.
14mg is moderately high and as you taper down (slowly!) some of your current side effects will diminish.
For me, insomnia has always been a problem...as for many, but now I just accept it's part of the experience and don't fight it anymore.
I promise you that if you educate yourself as much as possible you'll feel much less anxious and more able to make well-judged decisions.
Worry that I needed steroids, but once I took prednisone and felt within hours the lessening of symptoms, all pain gone within less than three days, and able to do all the things I'd been having difficulty with for many months, well, relief! Relationship with pred is fraught, but I am ever so much better with it than I was without.
I started pred, 15 mg June 2015. After initial taper lasting about two years I have most of the time since then been at 2 or 2.5 mg, no perceptible symptoms which can be attributed to pred which could not also be a result of getting older, or indeed from having an autoimmune disease in the first place.
See this: healthunlocked.com/pmrgcauk...
I remember feeling glad that I had a diagnosis, then that although PMR is life changing it isn’t life threatening.I hadn’t been to a doctor for 20 years before getting my symptoms which included being unable to walk far and the usual aches. I was worried sick I would stay in that state. So a diagnosis was wonderful. I didn’t know how prednisolone would affect me other than I would get the moon face if I didn’t lose some weight. Then 3 months later I was diagnosed type 2 diabetes and so went low carb. I am in diabetic remission.
I have had PMR for 5 years and keep plodding on with it, one day I know I will feel better and it will have gone.
Good luck to you
Thankyou for your reply, it was a relief to me to get a diagnosis, after various blood tests , X-rays, pelvic scan,physio, not showing anything….felt as if I was wasting everyone’s time..It certainly has hit me like a sledge hammer, having to rethink my lifestyle, and to manage daily personal tasks. (Pred has certainly improved mobility) Will not be walking a Marathon any time soon.. May be half marathon ….
I am also commencing a pre diabetic programme next month, the joys.. Wish you well ..
I had my life back after 2 days on 15mg, not 100% but definitely 85%. It took a further 2 weeks to get everything moving properly again after 4 months of almost total inactivity. I lost a lot of muscle tone and this has since returned. I'm actually more active than I've been for several years so I think PMR was lurking even then.
A week of steroid high 😃, followed by no side effects. I watch my calorie intake, but always have, so no weight gain. Now down to 4.5mg and all good. I’m one of the lucky ones. 🤞I’m reducing v e r y s l o w l y.
Wow ! No damaged skin, no mood swings, no brain fog ? No reduced ability to walk a long way or take other forms of exercise ?That’s truly fortunate for you.
I wish you well for the last part. ☺️🤗
I did not have any perceptible side effects on higher doses, although I'm (more or less reliably) informed by hubby that I was behaving like the energizer bunny. This no doubt because I knew I wasn't dying, and could even do things like walk and garden, etc.
Thank you. My husband may disagree about the mood swings, but I don’t think so. I am able to walk as far as I could before PMR struck (minimum 2 miles per day if I can and often more).I think this condition is different for everyone since we all have different immune responses under normal circumstances - feel free to correct me anyone.
I am very much a glass half full person and still rode my bike when PMR was beginning to rear it’s ugly head. It just annoyed me that I couldn’t cock my leg over the saddle to get on, but had to lie my bike down and step over, then stand it up again! As I said, I think I am lucky that the steroids work for me and I’m hoping everything continues in the same vein.
I wish all those who are just starting their journey an easy one and those for whom things are not so easy, light at the end of the tunnel. Xx
I had to smile when you put your bike down to get onto the saddle, at my worst point I had to put my knickers on the floor and step into them ..
That made me laugh - but so true!!🤣🤣
Hi, once I had started on Pred I was actually very happy, I went from someone who was in agony and couldn't move to a person who had their life back. Researched PMR and Pred, found and joined this forum. Very quickly accepted that I had a long term systemic disease that needed Pred to manage, not cure it. It will go into remission when it's ready and not before, so there's no point worrying about it. Lots of fantastic advice on the forum about the possible side effects of Pred and how to mitigate them and as far as I am aware, I have managed to avoid them all so far.
I’m 2.5 years into PMR now. When I was first prescribed steroids I was sad at having to take them, but literally within a few hours my pain had subsided.
The absolutely worst thing for me is the affect the steroids have had on me: (no weight gain - hoorah!) But it’s having to take all the other associated meds (AA, Omeprazole, and 2 lots of eye drops for the steroid induced high eye pressure). I wasn’t on any meds at all prior to PMR!
The positive thing is that sometimes I feel fraudulent saying I have PMR as my pain has subsided considerably and so I feel grateful I’m still breathing!
It's been a rollercoaster for me with the only certainty being that things keep changing! It's the nature of the PMR/GCA beast I've discovered.
I probably had PMR lurking for years before it leapt into prominence with full force, so it wasn't a shock in some ways. Totally floored me in others though. The pred was initially such a godsend in providing relief from the life-robbing pain within hours, but then once things settled down I realised that it was a long haul ahead and unlikely to be the textbook two years to complete remission. Once on the pred merry-go-round, there was a lot to manage. But with wonderful help and support from this forum I was doing pretty well after nearly two years and feeling hopeful for the future. So whilst it can feel like it sometimes, it's not all doom and gloom. And there was always something new happening to keep me "entertained."
Unfortunately for me, GCA then got thrown into the mix and really set the cat amongst the proverbial pigeons. But that's a different story…
I hope you're able to take heart from all the wonderful information and support here and can use them, plus your own resilience, to navigate the journey ahead. Good luck!
No point in looking back. It has happened. Pred has given me quality of life. I get low when things go backwards but it normally corrects itself with patience.(I don’t have that much). Doctors are my bugbear that keep saying you must get of Pred you have been on them a long time. If only that easy
The problem, just as there is no clinical diagnosis for PMR there is no clinical diagnosis to say it has gone. After 3 and half years I stopped taking Pred (though I did stop taking them during the 3 years to see what happened but rheumy insisted I went back on them), I then got diagnosed with Vasculitis and put on Methotrexate. At the moment I have stopped taking any medication to see what effect there is, none that I can percieve so far.
I was supposed to have a review with Rheumy in July but still waiting on an appointment. So while no one is watching what is happening with Methotrexate side effects I feel I am better off them.
Still to this day get back and neck problems but the pain goes away after some rest usually. There is always hope with PMR, I never stopped running and 2 weeks ago I ran 6 races over 6 days. The problem was more with a sore toe than the backache!
Just keep going as best you can, I think over time that you get so used to have aches and pains that you start to ignore them when they have less severe days.
Well, aside from all the other excellent things that people have said here, I'd like to add that I am eternally grateful that it was PMR for me and not some other dreaded condition. I was in a LOT of pain for about 2 years before diagnosed, and then I had overnight relief with the PRED. Yes, I was fatigued, but it eventually went away as the PMR "burned itself out." Hang in there and count your blessings. It could be a lot worse. Smiles.....
I had resigned myself to a life of limited mobility and pain. Diagnosis and pred made me feel 20 years old again. So far still pain free bar a few twinges. I consider myself lucky I don't have RA, MS, OA or any of the other mobility affecting and pain causing illnesses that are so common. At least PMR can be effectively treated, if not cured.
I feel similarly to what others have said about being so grateful to know what I had and that prednisone treated it effectively otherwise I would have no life... I was fortunate to get a very early diagnosis but I was very active prior and once it got the better of me I had to lift my leg into the car and like others have said about getting dressed, I had to hang my arm and position the sleeve of my jacket. Three days after starting prednisone I could run up our house stairs....awesome! I love prednisone and would like to stay on it forever! After almost three years I am down to 1.5 mg and old aches and pains are back but I don't think I am feeling PMR pains. As mentioned, it's hard to distinguish the two... or three or four other things going on. Hang in there. PMRRMP, it will get better!
Actually, be careful. I was blaming a lot of my emerging pains on pre-existing osteoarthritis, but as time went by it became painfully (pun intended) apparent that a lot of it (not all) was indeed PMR. Eventually my CPR went higher than it ever had before so, back on higher pred. That was around January 2021. Now on 2.5 again, with the occasional 2 mg and CPR lowest it has ever been, so, go figure? This is a very confusing disease. 🤷♀️
Thanks HeronNS. It's so tricky. My pains are not symmetrical so it's a stiff neck (which I've had for years) and lower back pain (which is fairly new). I'll definitely keep an eye on it. I have another blood test later this month.
Yes, I had the same issue with neck, and my right shoulder, not back. At a certain point, as physio wasn't helping and the other shoulder seemed to be joining the party, I took a large (for me) dose of pred, plus had that scary and unusual, CPR result, and relief was miraculous. Oddly enough I now have trouble with the left shoulder but judging by response to physio treatment it is definitely related to OA in neck. I don't have any other pains at the moment (here she touches wood) and the shoulder responds to mechanical (exercise etc) treatment. So, who knows?
I have also found that I can take one Advil (ibuprofen) and most of my aches go away for almost two full days. It also allows me to get a good nights sleep and helps everything feel better!
That's a good sign, I think. Although probably not good to be taking too often (nsaids, as does pred, interfere with cartilage renewal). I had a migraine the past couple of days and I was rather painfree last night after alternating aspirin and tylenol for 36 hours....
If one Advil (is that 200 or 400mg?) covers 2 days - my rheumy would be encouraging you to use it carefully.
It’s 200mg. I’ve read that it’s not recommended but I don’t know why.
I'd be using it if 200mg gave me 2 days relief!
It isn't recommended because NSAIDs (nonsteroidal antiinflammatory drugs such as ibuprofen, naproxen and aspirin) are not advisable in general because they can irritate the stomach. So can pred and both taken together increases the risk. However, taken in very small doses and with food or using a PPI stomach acid inhibitor, most rheumies would say it is OK. I know mine would.
When I started on steroids, all symptoms of GCA disappeared like magic. I was totally manic, running around everywhere, driving my family and friends to distraction at times. I developed a very sore mouth which by trial and error I ‘cured with yoghurt.’ Recurrent eye problems led to high doses of steroid and I developed the dreaded moon face, thin skin and multiple bruising. I tapered to 10mg prednisolone but then relapsed. Now with methotrexate I have managed to taper to 2mg. The moon face has gone, but surprisingly not the bruising. I have followed a low carb diet from the onset and I haven’t put on weight, nor developed diabetes. I have huge cataracts and now am not allowed to drive. I have been told not to have my cataracts removed until I am off steroids: something to do with difficulty in healing. Please can someone confirm or deny this? Apart from the initial strange symptoms of GCA, I am fortunate that I have had no pain, although I do suffer the anxiety of a repeat of eye symptoms. Thank all of you for your comments. You have all helped me to understand this strange illness. Good luck to you all.
Need to be off Pred before cataracts can be done - rubbish…..many on here, including me (at around 9mg) have had theirs done, and recovered perfectly well.
I didn’t really have a choice, had already lost sight in one eye due to late diagnosis if GCA, and was getting to the stage where wouldn’t be able to drive, and as recently been widowed would have been in the creek without a paddle with no family close by.
As for the bruising, that seems to hang around a very long time, even after finishing Pred….but arnica gel/lotion does help.
Thank you so much. I really am desperate to have them done. I now can only read with a magnifying glass.
There are an awful lot of people on the forum who have had cataracts removed despite being on a lot more than 2mg pred.
You can have hip replacements on pred as well.
It is up to the individual surgeon - and if one says no, shop around for another, And frankly - be VERY sceptical about things you are told by some rheumies - they have a very narrow view of the medical world.
Thank you. I was told that even though I have now tapered to 2mg, in the past 18 months I have been on very high doses because of eye problems and this was relevant. I go regularly to the hospital for eye appointments and the information regarding healing came from two of the ophthalmologists, so not from eye surgeon. I will sort out a surgeon . As you can imagine I am somewhat fearful about an operation on my eyes after several previous problems. Thank you again.
I saw hospital ophthalmologist regularly -and early days pressures were slightly raised -but when they were back to normal and cataract started to develop and become an issue l they referred me to surgeon. At the end of the day it’s the surgeon decision to replace or not…
Fearful I can understand -but at least you have less risk than I did -with only one chance. But it was that, or nothing!
Thank you for your reply. I am so sorry you lost the sight in one eye. My husband too lost the sight in one eye suddenly as the result of a stroke. I am going to seek the advice of a surgeon . I will let you know how it goes. Thank you again for your input . I have learnt so much from this forum.
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