Exhausted!

[Alison300356]

So tired today! just been for a nap but woke up after a couple of minutes. Not sleeping more than 4 hours per night not sure which way is up at the moment. I am due to reduce from 15mg pred to 12.5 next week. Worried I will feel worse. I can honestly say " well I wasn't expecting this"

[SheffieldJane]

Sorry Alison and me too and most of us here. It's a double whammy from PMR/ GCA and Pred. If I let tiredness stop me reducing I'd be at my starting dose still. I think I am much more tired than I was on higher doses but I have also had a serious systemic disease for 18 months or more I suspect.

I gave in and accepted 10 mgs of Amitriptylin to be taken an hour before bedtime which did the trick initially. I know it's counter intuitive to take a drowsy making drug when you are exhausted. But you are kind of wound up and exhausted. It gets rid of the wound up part alongside all the natural sleep hygiene remedies.

I think you might do better to reduce 1 mg at a time. Slow but sure. Good luck!

[Alison300356 in reply to SheffieldJane]

Due for bloods on Tuesday followed up by phone consultation with GP a week later. I am going to ask if I can have some 1mg Pred just in case. I have some amitriptyline I had totally forgotten about them!!!! I think I'll try one tonight. Brain is not functioning very well at all.

[Mary63]

15mg to 12.5 is too big a drop for some. Some are fine but others not.

The perceived wisdom is 10% drop no more.

The experts will be along later. Also if you are SO tired, are you doing too much?

[Alison300356 in reply to Mary63]

Yes Mary I'm sure I am doing to much. Have always been very active and am struggling to slow down.

[SheffieldJane]

Watch that they haven't expired!

No wonder you can't think. I feel like I used to caring for my newborns.

[Alison300356]

No they haven't expired I was prescribed them a few weeks before PMR diagnosis I had honestly forgotten about them. What is happening to my brain?

[DorsetLady PMRGCAuk volunteer in reply to Alison300356]

It called Pred head,!

You have to learn to pace yourself, it’s difficult, but you have to.

Don’t reduce if you’re feeling unwell, and as others have said in your case, the 2.5mg will probably be too much. It is a recognised taper, but for many it’s too big!

Try 1mg or 1.5mg.

[PMRpro Ambassador]

No point worrying about it - many people are absolutely fine. If you aren't - go back to 15mg and try just 1mg at a time the next time.

And for the fatigue:

healthunlocked.com/pmrgcauk......

[karools16]

Hello Allison300356. I don't want to alarm you, but when you have your bloods taken, can you ask to be tested for diabetes? I am getting only about 3/4 hours sleep per night, and, last night, was particularly bad. When I mentioned it to my Endocrinologist, he sent me for a test, and it came back, Pre Diabetes. I hasten to add, that I have Addison's, discovered when I was at 2 mg Pred.

Sadly, I haven't a remedy , and reluctant to take any pill for it. I am a night owl and not a morning person, so I just take my time with everything in the mornings. I'm fine from lunchtime onwards.Hope things work out for you.

[Alison300356]

Hi Karools

Doctor tested me for diabetes 3 weeks ago and I was fine. Have since been trying to cut down on carbs anyway. However yesterday I did nothing all day and I had a really good nights sleep 6 hours in one stretch and then another two! Feel so much better today. I guess that's an indicator that I may be doing to much and getting over tired. Thank you so much for your response.

[wobblypat]

I sympathise wholeheartedly. Even after eight years the fatigue is very difficult to come to terms with. One activity per day is usually too much for me. I normally need a day's rest inbetween. I am fortunate in that I am able to sleep though. It's not the going to sleep that is the problem, but waking up! I have ten to twelve hours per night and two hours to "come round", before I can get out of bed.