Just come off Prednisolone

[23Jackie]

Hello I am new to this site and wonder if anyone can help me. I came off Prednisolone on the 1st January and have felt very unwell since with shoulder aches, tiredness, light headiness etc etc and my ESR has gone up to 18 - I really don’t want to go back on the dreaded steroid as been on it for two years and wondered if anyone else has experienced this and whether it is just withdrawal symptoms- I must confess my biggest fear is getting GCA - I already have glaucoma which has been badly affected by Prednisolone- many thanks to anyone who can help - Jackie

[SheffieldJane]

I am glad you posted this. Before I saw my Rheumatologist on Thursday I would have known what to say. That is try to nip these symptoms in the bud with the lowest possible Pred dose, it is all we have to protect us. My Rheumatologist was selling Methotrexate strongly, to get off Pred more quickly. It takes 3 months to work and some people get on fine with it. Maybe a combination would be a solution for you? You would have to be under a Rheumatologist for this.

[Longtimer in reply to SheffieldJane]

I have wondered this after 7 years....did he sell it to you if you don't mind me asking??

[SheffieldJane in reply to Longtimer]

No way! I like my Prednisalone curls. 😆

Seriously though, it’s horses for courses. You need to think long and hard for yourself. I am 3 years in. If it dragged on for 7 I might be ready to try anything. My Rheumatologist promised that it would make me slim and beautiful. So it’s clearly a miracle drug.

[Longtimer in reply to SheffieldJane]

I've lost enough weight, and will never be beautiful....so that's lost on me!.....my sister tried MTX...she has RA, it made her very ill, and affected her liver...I wouldn't try it to be honest, can only tolerate 1 paracetamol!!😕.......... but some bad days, (like now), and 7 years later one can feel quite desperate! Thanks for that....

[23Jackie in reply to SheffieldJane]

Thank you for replying- My Rheumatologist was so unhelpful that I am seeing Prof Dasgupta in April but needed some advice in the meantime - I actually stopped methotrexate as it was making my hair come out so don’t want to go back on that again so it’s difficult to know what to do - think I could put up with all the achy symptoms just this intense tiredness and giddiness that gets me down but thank you for trying to help - someone said it can take a year to get back to normal - gosh makes one wonder just what those steroids do to the body !!!! - Jackie

[SheffieldJane in reply to 23Jackie]

I have found that a regular timed nap helps with the deathly fatigue. The dizziness seems to have gone off, I used to have real balance issues. Prof Dasgupta is a very hopeful prospect. He’s a bit of a star from all I’ve heard. Let us know how you get on.

[HeronNS in reply to SheffieldJane]

Just a thought. Apparently pred can affect our electrolytes - I think that's the word. I have posted about my experience with salt deficiency. So it's possible that some of our symptoms are indirectly caused by pred, but can be alleviated by dealing with whatever pred put out of balance - in my case, just as an example, taking in more salt.

[DianeA1 in reply to SheffieldJane]

Mmmmm, love naps! A friend calls them 'Happy Hour'!!

[23Jackie in reply to SheffieldJane]

Oh dear not used to this site yet so cannot remember if I replied but if ididn’t thank you for getting back - the fatigue today is so bad hopefully it will get better people who have never had polymyalgia just think one feels a little tired - if only !!!

[PMRpro Ambassador in reply to 23Jackie]

At a dose above 8mg the oral steroids replace a natural corticosteroid made by the adrenal glands. As a result they go into hibernation. Once you get below about 7mg they have to start waking up but they tend to be a bit reluctant and it is a very complicated feedback set-up that takes a while to settle down - like shoving a pendulum when it was swinging happily, it takes a while to settle. That's all.

I'm not sure you would put up with the aches, If it were guaranteed to be just a year or two maybe - but it can be much longer. It attacks the soul after a while, you become cut off from others because you can't keep up and the pain is always there, low grade often, but there. I know, I've been there. You would have to show some pretty bad effects of pred to make me change my mind. Pred gave me my life back.

[DorsetLady PMRGCAuk volunteer]

Hi,

If you've only been on Pred for 2 years it’s very likely your PMR is still very much alive. If so, then you need to be back on it!

If GCA is your biggest fear, then not taking any Pred at all is going to make the risk of that more likely not less.

I would say how you feel at the moment is a combination of untreated PMR (aches) and Adrenal glands struggling (giddiness and fatigue).

Yes it can take up to a year for your body to be completely back to normal after stopping Pred, but having been through that, I would say your symptoms are not just that.

You need to get medical advice before April.

[23Jackie in reply to DorsetLady]

Thank you for your help I will certainly see doctor next week - Jackie

[DorsetLady PMRGCAuk volunteer in reply to 23Jackie]

Good. Let’s us know outcome please c

[PMRpro Ambassador]

You have all the signs of having stopped the pred before the PMR has gone into remission. If the ESR is rising it is a sign the inflammation is building up again. PMR requires a median duration of management with pred of 5.9 years - it can last a long time. Fewer than 1 in 5 patients are off pred in under a year, only a third in under 2 years. Untreated PMR is thought to be 7 times more likely to progress to GCA.

Do not be so scared of pred - I have been on it for 9 years and have spent a lot of that time at above 10mg. I have no diabetes, no loss of bone density (checked with dexascans), my total cholesterol is a bit high but that is because my HDL is exceptionally high. I gained weight with one form of steroid, lost it with a different one and hard work. I'm lucky that my occular pressures aren't affected - but they can be managed by a good opthalmologist. I live well.

I tried mtx for a month to keep my rheumy happy - he says he has had good results. I gained weight, I felt a load of side effects that are usually ascribed to pred, my hair fell out in chunks, the fatigue was overwhelming and was the main reason for stopping it permanently. I have to be able to function.

Basically though you have a choice: you can stay as you are, suffering, until you see Prof D so he sees your PMR in all its glory. Or you can go back on pred.

[23Jackie in reply to PMRpro]

Thank you so much for giving me so much info it was only that Moorfields said stop as soon as possible that I did but now agree it was probably a mistake and think I will try a low dose of prednisone but thanks again - Jackie

[PMRpro Ambassador in reply to 23Jackie]

Moorfields were only thinking of it not being GCA, you didn't need pred, they think of vision, not the other aspects. But PMR needs pred - just less of it.