Struggling with reaction to steroid reduction after 3yrs on prednisolone

[WalkingtheMoors]

I was diagnosed with PMR in November 2021 following a Moderna booster and was immediately put on prednisolone. After 3 years and several relapses with doses going up and down I have now been steroid free for 6 months. Very difficult months when at times I have felt so bad that I considered asking to go back on the steroids but I knew I had to try and see it through. My GP had said that through PMR seemed to be quiescent but that the steroids have caused muscle degeneration and I have worked hard to try to get my legs strong enough to once again go out with my dog. It has been hard with pain in my legs groin and arms and I have found it so hard not being able to get dressed independently but finally I feel that there has been a little bit of improvement but I still have very bad days and nights where sleep is interrupted with cramps and my body feels like it has been sat on by elephants. I think my biggest concern is...have others gone through the same and how do you cope with the pain. I regularly take ibuprofen and alternate it with paracetamol. Keen to stop this medication in the hope that my body gets back to normal but when I try the pain and lack of movement returns.

[SnazzyD]

It sounds like you are suffering rather. I wonder from your brief description that PMR never went away and you’ve been battling with untreated symptoms. Why did the GP think your PMR was “quiescent”? PMR can last longer than 3 years. Muscle weakness alone shouldn’t be giving you this amount of pain and debility. Is the GP happy with your level of pain and amount of painkillers, enough to leave you to it with no further investigation? This seems odd if it is the case. Do the painkillers work well?

[WalkingtheMoors in reply to SnazzyD]

Thanks for your reply. I had blood tests which showed low inflammation levels and no other markers. I must admit my GP was happy to leave me to manage my own tapering except when it all reared its ugly head but he was coming up to retirement and I don't feel my new nominated GP really understands. To be honest the painkillers do seem to help but I think I may need to push to see a specialist. There seems to be some improvement so I am hoping if I keep at it even if the PMR is lurking in the background then I can beat it....rightly or wrongly I just want an end to it. Would love to know if others have found this period of no steroids just as challenging.

[DorsetLady PMRGCAuk volunteer in reply to WalkingtheMoors]

I am hoping if I keep at it even if the PMR is lurking in the background then I can beat it....rightly or wrongly I just want an end to it.

Afraid it’s not up to you.. if PMR is still lurking, then it’s likely that the inflammation will be allowed to build up again.. and as we know from others that can take months to really make an impact on you.. and around 6 months is a very common timeline.

You won’t ‘beat’ PMR, but you can manage it well enough to give a decent QOL, so for the sake of a few mg why suffer. You won’t need to start again at 15mg, 5mg is very often enough to get things back under control [similar to dealing with a flare] and then you may be able a drop down to say 2mg. It’s surprising how well a 1mg or 0.5mg can control things… and probably safer than ibuprofen.

[PMRrunner]

All I can add is that I very briefly got off prednisolone after about 3 years. I ignored the niggles on the final taper to zero but within a few months my stiffness had worsened and I went back on prednisolone. Just 5mg worked like a dream and with the advice of my rheumatologist and GP I stayed at that dose for a year. I've very slowly tapered to 2mg but it's taken over 2 years.

[posthinking01]

So sorry you are suffering so - you are getting some very good advice from others here - as someone who has to take steroids for life I agree with others far better to take a trace dose of steroid to avoid painkillers and pain takes its toll on the body - steroids if needed by the body are just replacing what the adrenals are telling you is needed they are not always the ‘ baddie’ the medical profession likes us to believe !

[Karendeena]

Prednisolone wrecked my body, I put on weight, then lost it, ate too much and then couldn't eat, had jitters, couldn't sleep and this was when reducing. My GI has never really recovered and I lost all muscle tone. I had body pain and still do although my rheumatologist says it's spondylosis. I see a physio. Maybe I'm just getting older but this all started when taking and reducing prednisolone. I have been off it now for 12 months and watching my partner going through the same thing

[WalkingtheMoors in reply to Karendeena]

I am so sorry that you've had and are still having a bad time. I can relate to everything you're saying hence the reason I'm determined not to go back on the pred if I can avoid it. My rheumatologist recommended very moderate exercise and loads of rest and on the rare good days when I've had a good night's sleep I feel as though I am very slowly getting there....it's not an age thing 🙂 although that probably plays it's part...I'm 72 and have always been fairly fit but some days can feel like I'm ancient!! I wish you and your partner all the best.

[Karendeena in reply to WalkingtheMoors]

Thank you ❤️ I have refused the prednisolone again. My doctor told me it's very good for what it's intended for but comes with a shed load of side effects. I now know why they call prednisolone the devil's tic tacs.

I hope you get sorted too ❤️

[DorsetLady PMRGCAuk volunteer in reply to Karendeena]

Sorry to hear your experiences with Pred, but for some of us it’s been a life safer… or at least a sight saver. If not for Pred, I’d be blind in both eyes rather than just one. For you, the devil’s tic-tacs for me [and many more] a godsend. All a matter of perspective.😊

[WalkingtheMoors in reply to DorsetLady]

Thankyou. I know it's all about a balance and being informed which is why this forum has been so helpful. I am sure that if GCA came along I'd be the first to go back on the steroids. Thankyou 🙂

[PMRpro Ambassador in reply to Karendeena]

Whatever adverse effects I developed - and at one time there were several, (serious weight gain, muscle atrophy, skin and hair went mad, black beard!) I never once felt they were worse than the 5 years of PMR without pain.

[PMRpro Ambassador]

I would want to be referred to a rheumatologist - and I also suspect your PMR has NOT gone into remission. What makes the GP think it is in remission? If it is time then he is barking up the wrong tree - PMR can last a lot longer than 3 years although for many they only need a very low dose of pred which can be as low as 1mg ongoing once the existing build-up of inflammation has been cleared out.

However - PMR is often misdiagnosed and the symptoms taken to be of PMR may be the herald of some form of arthritis. Whether it is PMR or some form of NOT PMR, no medication will only result in worsening. Believe me, the body does not "see it through" if you have PMR.

I had quite severe muscle degeneration when I was on methylprednisolone for several months - but it didn't cause pain like you are describing, what you portray could be taken as a presentation of PMR.

[Satya70]

You don’t mention how old you are. If you’re a young person it might be more imperative to stay off steroids at the high cost in pain that you’re paying. At 72 there’s just no way being off prednisone is more important to me than quality of life - which means mobility and low pain.

I am, in fact, trying to taper but in tiny increments and very slowly. I currently take 7.5 mg 4 x a week and 8 mg 3 x a week. My mornings are fairly inactive but by early afternoon I can do most everything with very little pain. It’s taken me 2.5 years to get here.

I’m sure that what side effects a person has influences the decision.

[DorsetLady PMRGCAuk volunteer in reply to Satya70]

You don’t mention how old you are.

They do.. although not on profile ☺️

I'm 72 and have always been fairly fit but some days can feel like I'm ancient!! I

[MiniSpec]

Two things I would say you need to do. Firstly, start taking Magnesium to stop the cramps, and secondly, ask your doctor for a low dose of Prednisolone. By the sound of your symptoms you're suffering from adrenal insufficiency, and that's no joke.

As others on here have said, even a very low dose of Pred (1 - 5mg) will stabilise your body, and allow you to live a life rather than suffer an existence. As for taking Ibuprofen and paracetomol, both of those drugs are not good taken long term, whereas Pred at a low dose will give you enough cortisol to banish the pain and inflammation, without doing the damage that other drugs will do.

[posthinking01 in reply to MiniSpec]

So agree - there are times that the body 'speaks' to us and tells us what it needs - if the steroid at a trace dose of 5mg takes away the pain then it must be needed - it is not good for the body to be deficient of a hormone that the adrenal gland needs as it is responsible for the sex hormones that are oestrogen progesterone DHEA Pregnenalone etc. etc. and surprisingly the adrenal glands are also 'connected' to the thyroid and many other processes in the body. By not supplying what the adrenal glands needs i.e. helping them when they are struggling - this process is interrupted and can cause other issues down the line and as stated the painkillers people are taking are hard on the liver - here is something that tells us what the adrenal glands do and how 'grateful' they will be for that 5 mg if deficient.

my.clevelandclinic.org/heal...

Hope this helps

[WalkingtheMoors in reply to posthinking01]

Thank you...that made interesting reading. When I first came off the pred I asked my doctor to do blood tests to check cortisol/adrenal etc. and they looked at kidney and liver at the same time. All looked good and my blood pressure recently taken over a week morning and evening was normal. But I may ask for my bloods to be checked again as I've been off the pred for over 6 months now and it should show if my body is working as it should. Thanks

[posthinking01 in reply to WalkingtheMoors]

Hi there - blood cortisol is not really a good indication of what the body is doing in relation to the adrenal glands - as cortisol can be high for other reasons - i.e. journey stress - cold weather etc. etc. - I know I have Addison's apart from everything else - and you wouldn't believe how the adrenals react to day to day needs. The only test that really shows what is happening is a short senacten test and I doubt whether they would do that unless you were really poorly with adrenal issues - and it is quite a dangerous test to have - I suppose the blood test would be enough to show low levels as I did have one once and it was 28 and the lab phoned me at night panicking saying you need to get to hospital - not realising I was on steroids -because the consultant had forgotten to say on the request form - so the poor chap was doing his job but let down by lack of information.