Advice please

[dolphin39]

I was diagnosed with PMR five and a half years ago and have been following a very slow reduction in prednisolone , at the start of 2021, I was on 2 and a half mg and have recently got down to 1mg. I have not suffered a flare for over a year. I have regularly exercised, mainly swimming and walking, and last week resumed dancing. This proved a step too far. After half an hour my legs felt like lead and I was sweating profusely. This week I upped my steroid to 6mg and survived the class. I am wondering if this means the adrenal glands are not behaving, and if so, what should I do? I assume it would not be a good idea to keep yo-yo~ing the steroid and in my area it is impossible to get any medical advice. I was promised a synacthen test last spring but i'm still waiting and an on-line cortisol test failed.

[DorsetLady PMRGCAuk volunteer]

Was there anything else that could have caused you to flare in the preceding days/weeks - such an extreme reaction to just dancing is a disconcerting…..would say it was maybe the final straw that tipped you over the edge.

Are you saying that you upped to 6mg after first episode so you could go dancing this week? If so, when did you increase and are you still on 6mg….and how are you when not dancing?

If you follow the normal procedure for a flare, then 7-10days on increased dose, and then drop back down to just above Tge dose that caused the issue - whether than be in one drop or 2 (with 5-7 days on interim dose) is up to you.

But you certainly don’t want to be yo-yoing up and down, that not good for your illness or your adrenals…..maybe a few weeks (after you sorted yourself out) at 2 or 2.5mg might be advisable.

If you look at FAQs there are a few posts on adrenals - healthunlocked.com/pmrgcauk...

..and I would be chasing doctor for that Synacthen test.

[dolphin39 in reply to DorsetLady]

Thanks for your reply. I took 6mg just in the morning of the day of the dance class and dropped back to 1mg the following day. On 1mg I have been feeling a bit achy, but nothing unbearable, i think that I must follow your advice and stick with 2mg for a while longer.

[PMRpro Ambassador in reply to dolphin39]

If you were doing well at 2mg that is better than being wobbly at 1mg. It is a very low dose - one Prof Dasgupta feels able to leave patients at for longer periods of time as it reduces the risk of relapses.

[DorsetLady PMRGCAuk volunteer in reply to dolphin39]

Yes that might be wise, best not to ‘add in’ extra Pred on a busier day…not really recommended except for exceptional circumstances. Much better to raise the dose slightly and get things back on track….

[SnazzyD]

I don’t know if I’ve interpreted your post correctly but I really would avoid upping Pred to get through a busy week routinely, particularly swinging between 6 and well below 5mg. This is because 6mg for some can mean adrenals largely off then back to a dose where adrenals need to work again. It may make life difficult for you. For a Synacthen test you need to be consistently below 5mg too. In order to get my adrenal glands going I reduced steadily but slowly BUT I did less to reduce stress on the the body. It meant my life became rather dull but anything more sent me into an adrenal crisis; I played the long game and got there in the end. There’s no way I could do dancing at your stage and I started this game very fit aged 54 in 2017.

[agingfeminist in reply to SnazzyD]

such good advice...I am playing the long slow game. It is hard to imagine it will ever end. It is so helpful to know that one might 'get there in the end.'

[SnazzyD]

Me too, especially when I’m supposed to reverse what the mirror or instructor is doing. I blame that on being left handed and reversing things all the time; my brain gets upset.

[dolphin39]

Thanks for your reply, how long were you on 3mg?

[misha453]

I was also diagnosed with PMR 5 1/2 years ago. I was on 2 mg of prednisone at the beginning of 2021 and have been down to 1 mg since the beginning of September. I have regularly exercised as well. I swim three times a week and walk my dog daily. In the Spring, I started trying to play golf but the first time I tried I only made it through a few holes before the sweating and exhaustion set in. I am now up to walking nine holes of golf but I can only do it if I haven’t done anything else physically active that day. I have not increased my prednisone to help with the symptoms. I agree that it’s frustrating to not be able to do things you enjoy but I find when I do too much activity, I completely crash and can do nothing else that day. I hope things will improve but it is very frustrating that it takes so long to recover the ability to do things that used to be easy.

[dolphin39 in reply to misha453]

Thank you for your reply, it helps to hear that someone else has a similar experience.

[Lochy in reply to misha453]

I envy you! I’m 5.5 years into this too but keep having ups and downs. Started as a very fit running, golfing, walking 56 year old. Now feel a distinctly older and creakier 62 year old😰 I’m still tapering very slowly currently on 6 and this is the lowest I’ve got. I get major aches, currently plantar fasciitis, which take time to settle then I try another taper! Otherwise the rest of my body feels pretty good other than a little morning stiffness. I think I injure myself more easily now as opposed to a flare! Onwards and upwards with a large dose of patience 🤞

[Viv54]

Welcome to my world ,My sweats are horrendous , im waiting for a barrage of tests/ X rays / scans etc ! I have lots of different serious spinal condition etc. But have to say i hate the sweating the most, im not in the posistion to do your exercise , great you can , even walking brings on terrible sweating . I think may be dancing was going one step to far. Excuse the pun ! Wait a while its far better then all those awful sweats . Good luck Viv 🌷

[dolphin39 in reply to Viv54]

Thank you for replying

[Raewynne]

Just thinking about all this.Im reducing Pred too from 90mg.Doing the long slow but did have a relapse a week ago.Reasonable now.But this is second time round for my autoimmune condition.Since being on Prednisolone I have had two heart attacks .The Dr didn't pick up that my heart was playing up initially but I believe now that prednisolone weakened me so I would say if anyone is getting really tired get your heart checked as well.Its not worth the risk not too.Prednisolone and maybe other meds deplete us in essential vitamins and minerals.

[dolphin39 in reply to Raewynne]

Thanks for tip