symptoms or not, and checkups

[Excelsior80]

hi all, currently on 7 mg pred and feeling Ok. I sometimes get small aches and stiffness but similar to what i would get from desk working and before pmr I'd think I just need exercise ... not sure if bad to wait and see if it gets worse?

Also I started with very efficient trainee GP but shes gone, only on a rotation, and since then zero contact just prescriptions from a prescription manager, Ive made a 6 month checkup appointment for myself in a couple of weeks, listing questions to ask. Bit concerned in case awkward GP but Ive mostly had good people in the past. Also getting a blood test today as Ive been waking up very thirsty several times a night, needing loo, which is new and can be sign of blood sugar problems I think. Though I wondered about high calcium as a cause too. I am avoiding carbs.

Planning to ask about:

dexa scan, if they are happy for me not to take omeprazole, blood sugar, changing to slower taper at low doses, potential adrenal issues and what to look out for. Is there anything else a 6 month follow up should cover?

[PMRpro Ambassador]

I somehow doubt you'll get much response re slower taper and adrenal issues. If the blood test is just a random glucose, it may or may not coincide with a spike due to pred so maybe confusing.

I would stick at 7mg and see what happens - don't taper further until you are sure you are stable at that dose.

[Excelsior80 in reply to PMRpro]

thank you 🙂 .... reason is, so far they've given exactly 6 weeks at each dose, not an open prescription. So to change that to slower I need more... thinking 0.5 drops from now on, or else put me in control. Can only ask ! and i'd like their agreement to increasing if ill on the system too. And acknowlegement that adrenal issues are possible after months of steroids too even at low doses

[PMRpro Ambassador in reply to Excelsior80]

Anything over 10mg suppresses adrenal production of cortisol. Trouble is it isn't a highly sensitive system when it comes to recovery - even though traditionally 7mg has been quoted as "physiological" more recent studies at Imperial London have shown as little as 2-3mg pred is enough to replace function so the body struggles to recognise it needs to get going again until well under 5mg although you may start to feel it much higher. It is a real conundrum.

[Excelsior80]

i tend to panic a bit over communication .... result of awful past medical situation for one of my children ... want them prepared, sorry fussing 🫣

[PMRpro Ambassador in reply to Excelsior80]

No problem!

[ChrisBeeLoop]

I felt fine at 7mg but have been very achey at 5-6mg. I have a monthly CRP blood test. I was lucky in that is showed very high inflammation levels when I was diagnosed, dropped down sharply with the preds, had a blip in April when I had a bad cold, and has been good since then. I am currently achey and having a blood test today. If the CRP remains low I will assume the test is still working as a good measure for me and that the achiness is a symptom of inactive adrenals rather than a flare. Fingers crossed.

[DorsetLady PMRGCAuk volunteer in reply to ChrisBeeLoop]

I am currently achey and having a blood test today. If the CRP remains low I will assume the test is still working as a good measure for me and that the achiness is a symptom of inactive adrenals rather than a flare.

Just be aware that inflammatory markers can lag behind symptoms, by months sometimes… and don’t assume the ‘achiness’ is all down to adrenals. It may be, it may be too low a dose of Pred for your illness, it may be a combination of both.

[ChrisBeeLoop in reply to DorsetLady]

Thanks for that advice Dorset Lady. I am tapering very slowly and might well stick to my current dose until the New Year.

[DorsetLady PMRGCAuk volunteer in reply to ChrisBeeLoop]

That a good idea… wintertime always more difficult time to taper plus throw in Christmas activities as well. But do keep eye on the aches…

[PMRpro Ambassador in reply to ChrisBeeLoop]

Very good idea - even some rheumies say the same!!

[Excelsior80]

suddenly woke up feeling so much better, nothing changed but i hadnt realised how negative and pessimistic i had been feeling recently. If adrenal related some of these symptoms are quite vague ....

[PMRpro Ambassador in reply to Excelsior80]

They are indeed - which is a large part of the problem as it all mounts up and sometimes very slowly so you barely notice until you are way down in a dip.