I was diagnosed with PMR at end of July with inflammatory marker at 82, and been on 15mg prednisolone. The inflammation dropped down to 'borderline' and steroid were dropped to 12.5, but then had to be raised again as more achy. Now inflamation gone up to 18 a week ago.
I have had a series of problems since diagnosis which I am sure have been caused by the growing number of pills. Omniprazole, Adcal, - lisinpril and now indapamide for raised blood pressure.
I felt so poorly this morning with violent headache and shaky all over I phoned surgery and had a call back and then saw GP. She checked me over and called the Rheumatology consultant - who then phoned me back.
What surprised me was the Rheumatologist said I should feel really well on prednisolone. Hadn't I had any days feeling really well?
Well, since taking the steroids - and all the other pills I have felt unwell. The severe pains went within days like magic - but I still don't feel well.
She has increased pred to 20mg for weekend, gave me clear instructions where to go if I have any vision problems, and has given me an appointment to see her on Monday.
I know the pred does its job of controlling PMR but wonder if anyone out there has felt the steroids made them feel well
thanks
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Strippy
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Another of these lunatics who think that everyone on pred feels absolutely wonderful. I do wish I knew what makes them think that! I will grant them we tend to feel a lot BETTER - but who wouldn't after weeks of constant pain and disability? But they hand out a list of drugs to start at the same time - it could be ANY of those making us feel rubbish or interactions between them. And anyway, all the pred does is manage the inflammation which relieves the symptoms - the underlying autoimmune condition is still there in the background and often making us feel fluey.
I have an appointment to see her Monday so hope she doesn't make the situation even worse! The GP's I have seen always agreed that steroids can make you feel awful - that's why they tried to drop it down asap. GP was worried about GCA today but Rheumatologist said it was very unlikely to develop if I am on that much steroid. Hope she is correct!!
I think she needs a reality check - if you were to be developing GCA (which you probably aren't but it IS a possibility then 20mg pred won't necessarily stop it. Why does she think some patients need 60mg and more to manage the inflammation?
I certainly felt a heck of a lot better on steroids than I did before I took them... but have to say despite very high doses they never gave me any the issues that many seem to have.
Just happen to be one of those lucky ones who can tolerate Pred and a sensible doctor who got my GCA fully under control.
However, would say doesn't sounds as if your PMR is fully under control - so are you are feeling ill due to the medication or your PMR? Might be difficult to tell.
To be honest if you aren't on enough Pred to control your illness, it's a bit of a waste of time...
Omeprazole is a likely culprit for the upset stomach though pred does that to some people. The rest - pred makes you shaky and temperature control goes out the window. No energy - pred and PMR. Pred doesn't stop the fatigue - not everyone gets the zoomies with it.
Nothing to add to PMRpro’s comments..easy enough to change Omeprazole for another… but do you really need it? Can’t do much about Pred nor PMR unfortunately except rest as much as possible. … but it usually does get better.
Paracetamol may help with other symptoms - worth a try for 48 hours just in case it’s something other than Pred.. if it doesn’t help, then you’ll have your answer.
I do feel fine on prednisolone at the moment, and have done since starting pred at 15 mg .... ive been lucky so far, no sleeplessness or other issues, and Im not taking anything else new apart from a calcium supplement . Occasional fatigue, slight stomach upset first thing in the morning is all. So some people feel ok at least sometimes .... But I'm aware this may not last!
You have had more than just PMR though. On a lot of new meds as well. Would a cardiologist opinion be of help, echocardiogram etcetc re identifying the cause of your heart failure?
Omeprazole can make folks feel ill. PS you dont say how old you are?
The GP thinks the heart issues which have only been these last 2 weeks have been caused by steroids - ie high blood pressure and retained fluid. Been a lot less breathless since taking furosemide - and losing 1 1/2 kg of water in one day! The extra BP tablets are to try and get blood pressure back to normal. Will see what Rheumatologist has to say on Monday!
When I was first diagnosed with PMR, the rheumatologist prescribed me with steroids and said ‘when you come back to see me you will be running round the race track having had the steroids.’ Oh that it were true. In fact the steroids did act like a wonder drug regarding the pain, but I would not say they were that amazing. Of course the rheumatologist had never had PMR and probably had never taken steroids.
Yeah, well I'd be wanting a cardiology referral if he's saying heart failure. Actually though - cut your processed carbs, added sugar and salt and that should help some. that increases fluid retention. Pred does raise BP - and cholesterol so that may be the next thing.
Breathlessness, fluid retention ( did your ankles swell?) sudden BP abnormalities treated and partially improved with frusemide and lisinopril would all point to that being the probable diagnosis.
Yes my ankles did swell a bit. But all these things have only been a problem in the last couple of weeks - so I think it is because of the steroids. And they are all noted side effects of steroids.
I think you might be right ; it's good your cxr was ok. But since you can't stop the steroids it is all the more important to sort out any possible steroid induced or other heart problem as best as it can be whether you are 80 or 60. It isn't simply a side effect you have to live with. As you see from the NHS bumf, referral to cardio is the thing! Best of luck for Monday.
Perhaps mention all of this breathlessness and fluid retention to the Rheumato, they can perhaps fast track you to for an echocardiogram, chest xray if you havent had one, and cardiologist opinion ??
I have a different answer than most here. Yes - I have felt really well taking steroids. We're all different. 15mg wasn't enough at the outset, but an increase to 20mg brought complete relief. I've been on them for seven years, and the only time I get a real problem is during a flare while reducing and, now that I'm down to 5mg, adrenal-type symptoms. I've had periods on Omeprazole and even Alendronic Acid - these didn't cause any overt problems either but I got off them as soon as I could. For the first year, I did have the munchies and a change in weight distribution, but I didn't feel unwell.
You and I might have a different answer to most on here, but that doesn’t necessary make us unusual. I think many get through their illnesses relatively easily , so either aren’t on this forum at all or if they are, have no need to comment because in general they do feel a lot better on Pred.
For obvious reasons, the vast majority of questions posed on here are because patients are having issues… in my view , to balance things out , we should have designated ‘good news’ days 😊..
I have allways thought this. There must be thousands of people with PMR who have virtually no problems at all and never seek any help outside of their GP. Nearly everyone on this forum has problems and very few people say they are doing fine . I have definitely had issues with PMR but I have never felt ill, depressed, put on weight, and largely got on with life as normal. I consider myself lucky !
I've also been one of the lucky ones, after four and a bit years on Pred, from 30mg downwards, I've had no problems with it or any of my other medication including Omeprazole. Been off for around six weeks now and so far all good although suffering from a little bit of fatigue and breathlessness if I do much. CTS is a pain as well.
I agree with DorsetLady, I have found in my case Pred has had its 'good' pkace and can nake me feel all that Strippy feels, shaky sweaty fatgue beyobd belief, have gad a really bad rin this past 8 or so weeks...I am now down to 22.5mg decreasing VERY slowly, that was my mistake.Still dont feel great but feel a bit better, that for me is a bonus.
Pred in my book is a necessary because of GCA its better than the consequences of what can happen with GCA I just think this whole journey has been such a learning curve! And find the advise from persons who know through experience how we feel, although in many cases different to others but also similar, thats why I value the advise given and the comfort in a way that we are all fighting the challenges these conditions have placed at our door.
Rheumatologists...well? No words for the one that treated me for a year and a half with such conflicting ideas and treatment, I have changed Rheumatologist my first appointment with him is end of February ...we shall see??
Wishing you all better days inbetween the bad ones and very thankful we can chat with ones who fully understand our frustrations and suffering. Xx
I take pred and it helps with my illness so yes I feel well compared to not being on medication.
If the doctor is implying that pred is some sort of a “upper” that makes you float on cloud 9 then they don’t know what they are talking about, maybe it could happen for some people but hardly universal. My experience is that some doctors don’t have a clue about either being sick or the effects of the drugs. The smart ones learn from their patients and listen to us and then their knowledge grows.
Good morning Strippy!My experience of feeling well and having pmr: I didn't feel well and I think this was exasperated by being told to taper too quickly and thus began yo-yoing.
My advice to anyone first starting pred for pmr is to taper very slowly and find a good rheumatologist.
Prednisolone helped me. I could barely dress myself and turning off the bedside lamp v difficult. I didn't have one, but needed a wheelchair.
My health is so much better now.
I am thankful to have Dr Hughes as my rheumatologist.
Initial pred dose started to relieve symptoms within an hour or so, never seen a rheumy or a GP since I was diagnosed may 22. Luckily I tolerated all the pills, no weight gain or anything, tapering to 3.5 at present. Still got the odd ache, upper left arm but it hasn't got any worse as I taper. I realised how lucky I am reading other people's journeys on here. Wishing you all the best in you journey.
I wonder if any medics have watched the 1956 James Mason film called ‘Bigger than Life?’ The main character becomes ‘addicted’ to steroids that he is taking for his arteritis and steals them to satisfy his habit. No wonder steroids get such a bad press. The James Mason character ‘s mood swings are very scary to watch. His dependency gave him dramatic highs and lows. I wonder how steroids were prescribed in the 1950’s.
They did give VERY high doses because they seemed such a miracle - until they started to realise the adverse effects. And that is what has stuck and been passed on. To our detriment.
I was diagnosed a year ago with PMR but had symptoms building up for a year before that.
First 12 weeks of Pred, I was like an Olympic athlete...full of energy, no inflammation, full of life, it was like a fog had been lifted......' back to normal, back to my good old self'......then 'BANG!'🤯
The full range of other issues with PMR disease & side effects of Pred smashed me in the face & body.
Both mugged me in the alley & gave me a good hiding.
Despite a number of attempts to taper, the pair of them still have me cornered in that alley way!
Inflammation is under control but everything else comes in waves throughout the day. I now know what I can & can't do & when not to do it.
I so wish I was like others... i.e. take Pred, no issues, taper in good time and all is well in the world... back to normal...J.D.!
I am very lucky in that after taking prednisolone my pains immediately disappeared & I don't feel unwell. I am now tapering & hope it will e an easy journey. My disappointment are the side effects of steroids, but will put up with then to be pain free. Unfortunately other health problems have arisen recenly like a DVT & am needing a hip replacement, but steroids aren't responsible for those. It is difficult sometimes to say what actually is to blame for some of our ailments & the way we feel.
yes absolutely! Which is why I am continuing to try to get off them! I’ve had no flares as such… and people say .. you can’t blame everything on steroids!?! But I do!!! Some people don’t seem to have that problem.. a friend of mine.. same age as me .. 86.. went sailing down from 15 in 18 months !!! She’s had a few twinges since then.. but otherwise no problem. We are all different!!!!! I said to my homeopath.. I just want to feel well before I die!!!! He thought that was reasonable!!! I notice very little talk of alternative medicine on this forum.. except acupuncture?!
I was one of those people who felt horrible on steroids. I was shaky, heart beat rapidly, chest pain made me feel that I was having heart attack, swelling ankles, out of breath, etc.
When I went to visit my regular doctor, not my rheumatologist, he was shocked. He said his patients felt wonderful once they started steroids . I got the impression he thought I was somewhat of a drama queen.
Once again, I’m tired of doctors telling me how I should feel.
I was scared of steroids, a family member was kept alive for a while by dexamethasone but at huge cost in side effects and with careful management .... and a friend with Multiple Sclerosis said they give high dose steroids for a relapse and you feel great, cured! but can only take for a short time or (according to her doctor) your bones crumble away ..... but my GP said we are not talking those kinds of doses and we can hopefully manage the side effects on the doses we have for PMR. It does seem people can react very differently to most medications. I hope you can find something that works well
yes, at first I felt great, then the steroid side affects kicked in!! It’s awful, everyday. Just the feeling of being unwell, aside from the weak legs, weak core, bruising skin. It’s a nightmare.!!
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PMR and CLL
Anyone have a rheumatologist who is mad keen to get you onto Methotrexate and off Prednisolone even though you have responded well to it?
Different attitude this time around
Please help 😣 
