Update

[Blodders2]

Hi All

I was prescribed 15mg of prednisolone June 24, after the first three weeks on 15mg prednisolone I had blood tests 16 July CRP down to 8 which was great as I was 19 before, Thyroid results TSH 4.7 (Ref Range 0.27-4.5) FT4 15.4 (ref range 11-23) so both outside reference range, previous blood test May 15 TSH was 0.7 FT4 18 , GP increased thyroxine from125mcg to 150mcg, I felt great for the first three weeks then did the reduction to 12.5mg I felt awful for first few days aches, fatigue, difficulty in breathing I carried on for a week but no better I got in touch with doctors surgery and received phone call to increase back up to 15mg which I did but still felt the same after a week so got in touch with surgery again told to increase to 20mg for three weeks and try again to decrease, I have a review with GP on 23 August after the three weeks, still feeling rough, breathing not very good having to try and get a breadth, sweating, headache not a temporal one. All in all feeling a bit deflated as when first started on prednisolone I was feeling so good, any advice or comment would be very much appreciated also what should I decrease to17.5mg or 15mg. Apologies if this post is a bit confusing but not feeling in the right frame of mind at the moment. Take care all.

[Fatsiajaponica]

Hi Blodders, know exactly what you mean, flying start then it all goes pear shaped for a while, in the same position and difficult not to feel down about it. I would say that this PMR does take us on a roller coaster but eventually we will settle down as have so many on here who have had difficult times trying to find some equilibrium. It's early in our journey, hard to accept that we are actually unwell at the moment but we will get there. On another note, these steroids can affect so many bodily functions, can you say more about the breathlessness? I am having the same but may be low potassium which is an issue with steroids, maybe mention it to GP? I'm no expert at all on this, learning every day but there will be some along to advise who know what they are talking about. Take care of yourself and update us all.

[Blodders2 in reply to Fatsiajaponica]

Thank you so much for your reply and encouragement, I will mention breathlessness when I next see my GP. I think I was a bit naive when I was diagnosed with PMR I thought it was a quick fix for a couple of weeks on steroids, nothing was mentioned that I could be on them for a while, so hey ho on we go. I am so glad we have a site like this to gain advice and encouragement from. Take care

[DorsetLady PMRGCAuk volunteer]

oh dear… although tapering in 2.5mg step from 15mg to10mg maybe be in guidelines it’s not achievable for all .. as you have discovered.

Stick at 20mg until you feel as you did initially on 15mg, if that’s 3 weeks then fine, if not you may need a bit longer. You should be able to drop to 17.5mg for 3 weeks, then 15mg.. but if you get that same feeling you had before then back to previous dose.

Should that happen then make your reductions only 1mg a time - and I’d employ that method once you reach 15mg again anyway. Something to discuss with GP.

And even though you might feel better once back on track and bloods look good, don’t overdo it!

[Blodders2 in reply to DorsetLady]

Thank you, I will definitely follow your advice reference reductions and will also discuss with my GP.

[Andos16 in reply to Blodders2]

You will get more good advice on here than from some GPs and Rheumies!! Dorset Lady is very knowledgeable.

A month after I started Pred, I also did the 4am alarm to take half my dose with some yoghurt beside my bed, or a bit of cereal and milk. Means when you do get up, it has kicked in. Best wishes.

[DorsetLady PMRGCAuk volunteer in reply to Andos16]

As are others, PMRpro in particular..

[SnazzyD]

Is there any chance you coincidentally had a bad viral infection (lots of Covid about) and you’ve now got a chest infection?? Has anyone examined you properly, I’m not sure the breathlessness should just be put down to PMR or Pred since the increases don’t seem to have helped much.

[Blodders2 in reply to SnazzyD]

Thank you Snazzy D. I have carried out a test for Covid result negative. Maybe breathlessness could be down to Thyroid results out of range, hopefully now increased thyroxine it may ease, again will discuss with GP. Take care

[SnazzyD in reply to Blodders2]

It can take a number of tests to get a positive and false negatives are much more likely with the new variants. I hope the increase in thyroxine does the trick; it would make life simpler! If it doesn’t I would try to get yourself checked out in person.

[PMRpro Ambassador in reply to SnazzyD]

Snap!!!!!

[Blodders2 in reply to PMRpro]

👍Thank you

[PMRpro Ambassador]

Did you at any point suspect and/or test for Covid? Having written this - my first thought on reading your post - I see  SnazzyD asks the same question. And one that must be considered. And it can take several tests before getting a positive result with the latest versions.

[Blodders2 in reply to PMRpro]

I will do another test. Thank you