Is it the reason for fatigue?

[polymy]

Have reduced pred from 40mg down to 20 in 2 weeks as markers were ok. However I am inordinately tired with sore stinging eyes and no energy. I have my temporal biopsy tomorrow and not looking forward to it. With my back fracture getting there is a nightmare.

[DorsetLady PMRGCAuk volunteer]

Hi,

Were you advised to decrease that quickly in view of the upcoming TAB?

You’re markers might be “ok”, but that only shows that the Pred is doing what it should be - keeping the inflammation under control, I’ll warrant if you have them tested again with the next few days or so they will have gone up due to fact the dose is not enough.

After your TAB, unless you are specifically told not to, I would increase your dose.

Not sure how long you were on initially, but 1 month is best, and then reduce again at monthly intervals - most can do 5mg a time until you get to 20mg, then change to 2.5mg.

You might find going up to 30mg is enough to sort things.

Good luck for tomorrow, but I’m sure you’re aware that after being on Pred, a false negative is always possible.

[polymy in reply to DorsetLady]

Thank you DL. I had GCA symptoms so had 40mg for 3 weeks then a blood test. Advised to go 40 to 30 to 20 then to 15 within 3 weeks. I see the the rheumatologist on Monday.

[DorsetLady PMRGCAuk volunteer in reply to polymy]

Sorry but that decrease sounds a recipe for disaster!

Sounds as if Rheumy doesn’t really think you have GCA - hope that’s the case!

Please let us know after next appointment.

[polymy in reply to DorsetLady]

Yes I will.

[YuliK]

Polymy hi there

Why are you having a temporal biopsy ?

Do you have GCA symptoms ?

Hope you will feel better and pass your biopsy without any hassle ...

Yulik

[polymy in reply to YuliK]

Yes have had the jaw claudication and niggling left side headache. Had an U/S which was clear.

[YuliK in reply to polymy]

Good that you are getting yourself diagnosed dear

Good luck tomorrow. Let us know how you get on.

Cyber hugs 🤗

YuliK

[polymy in reply to YuliK]

Thank you Yulik. Will let you know.

[PMRpro Ambassador]

From 40 to 20 in 2 weeks? No wonder you feel quite rough!!

[polymy]

It has just got worse. Pain in my palate and strangest feeling in my tongue and jaw. Rang the GP for urgent advice. Not my own GP. She suggested I ring the rheumatology helpline. I explained that it was a non urgent helpline which gets back to you within 48 hours or in some cases not at all and that I could have lost my sight by then! Reluctantly she rang rheumatology and said to increase back up to 30mg where it was fine last week. Because of this wonderful forum I would have done that anyway if I hadn’t got any reasonable alternatives from the medics. I do feel rough. Have the biopsy tomorrow and a Rheumy appointment on Monday.

[PMRpro Ambassador in reply to polymy]

You are just left to wonder what some GPs know about the system they work in ...

[Hidden in reply to polymy]

😱