I have had PMR for 2 years and have now developed GCA. Was on 60mg steroids for 3 weeks, now on 40mg for 1 week.

[rosalinda]

Now have numb fingers and numb tingly feet and when tired feel very spaced out and strange. Has anyone else had this?

[Hidden]

Morning Rosalind

I have had the numb fingers, not the feet though, and as for very spaced out feeling - that is how I feel this morning, not a good start today, also very, very tired which is strange as for me I did have a half decent night. Actually slept 11 - 2, up for 2 hours and then back from 4 -7.

I was on 60mg then dropped to 50mg (too big a drop), went back to 60mg for 1 week, then dropped to 55mg for 2 weeks as down again last Fri to 50mg for next 2 weeks. Have had the effects of the drop since Fri, more break through head pain and horrid sweats (not a good look)..

I do think the 20mg drop is rather too much in one go - GP advice to do this?? From what I have been reading the drops should be very gentle, 1mg to 5 mg at most.

I hope I pick up in next hour or so as have CT booked for 1 p.m. today and waiting on MRI date.

Hope you feel better soon - rest I guess is needed.

Hazel

[Polywotsit PMRGCAuk team member]

Hello Hazel and Rosalinda. The spaced-out feeling is a mild form of a kind of mental confusion that is associated with early adaptation to prednisolone. It's not pleasant, but it's not particularly uncommon. You may feel slightly depressed as well, which is also the drug, so not to worry about if you can help it. As your body gets accustomed, and as the dose decreases, this should right itself. When you are on a relatively high dose such as 60mg the doctor will want to reduce it as quickly as possible, and hence the drop to 40mg. Because the giant cells have hopefully been zapped by the steroid, it's possible that you can drop to 40 without the symptoms coming back. And you have not been on them for a long time so the chances are that your body hasn't got too used to the pills yet. Once you have been on the steroids for longer, and got down to around about 15mg, is when you need to be a lot more careful about reducing slowly. If you think about it, dropping from 15 to 13.5, for example, is a 10% drop. Dropping from 7.5 to 6 is a 20% drop. Good luck and hang on in there!

[2watsons]

Yes i feel spaced out and need to on 17.5mg was on 60mg had temporal arteritis lose use of one eye over night on methtroxate as well ,i feel so tried will it ever go .???

NOREEN

[Hidden]

Hi Noreen,

That spaced out feeling and often overwhelming tiredness will start to get easier as you drop the doses, but drop very gently. You didn't say what you are on now. If it's 20mg then a 2.5mg drop might be too much. If you are feeling really bad then don't drop until you feel more stable. Pred has side effects, but you will have good days, I promise, if you handle the drug well. It has a powerful hold on your body and, to some extent, your mind too.

What you must realise is that you have to pace yourself. Try not to do too much in any one day, and put your feet up and have a drink and a little bit of food when ever you feel that weakness coming on.

Pats

[2watsons]

Yes feel in another planet ,and two fingers feel dead , and so tried after any effort ,but 4months on things looking better now on 10mg ,it does tak some time for body to react.

Take care

[2watsons]

Thank you have taken my time dropping my dosage now on 9mg for next month and yes feeling less tried and have some very good days ,have lot of pain in shoulders but can cope with it .

So hope this is up the mountain again ,Take care