Exhausted

[SuziCutie]

Can a drop of half mg pred every other day be why I am really exhausted?? Down to 9 1/2 one day and 9 next day since Monday this week. No pain thankfully just totally done in....

[PMRpro Ambassador]

Used to be the difference between being OK and not for me although for me it was PMR symptoms. You are at a dose where adrenal function will have to adjust - and it can swing back and forth. Too far one way and you will be tired.

[SuziCutie in reply to PMRpro]

Having problems replying to you 😬

[SuziCutie in reply to SuziCutie]

Well that appears to have gone to you so will try again to reply

[SuziCutie in reply to SuziCutie]

Wondering about adrenal issues but thought that problem could occur at 7mg approx?? Lots to learn.

Will try to stick it out as long as I am not in pain.

Desperate to get as low as possible with the steroids

[DorsetLady PMRGCAuk volunteer in reply to SuziCutie]

You may be desperate to get as low as possible, but if your PMR is still active you need as much as you need!

As you’ve found out even 0.5mg does and can make a difference.

Just accept you need your present level at the moment - won’t always be that way, but no point in fighting it.

[SuziCutie in reply to DorsetLady]

Yes I agree. Plan to stay on this dose till after Christmas, hopefully 😀😀

[DorsetLady PMRGCAuk volunteer in reply to SuziCutie]

Good idea. However much we enjoy Christmas it is stressful so best not to taper beforehand - I never did! Still got there!

Take care

[4840 in reply to DorsetLady]

I am at the same level and I agree with you, not to taper lower during busy times like the holiday.

[PMRpro Ambassador in reply to SuziCutie]

You absorb between 50 and 90% of the oral dose - if you are at the 50% end of the range you will have adrenal problems sooner than if you are at the 90% end.

You can be as desperate as you like to get off pred - you will get off when your version of PMR is ready and willing, not before. As long as it is active, you will need enough pred. Nothing you can do will change that. And once you get to this sort of level reducing the amount of pred doesn't change the total amount of corticosteroid - your body needs a minimum amount to function so tops up the pred dose to keep the level about the same. The side effects here are minimal.

[SuziCutie in reply to PMRpro]

I know I have to be patient and thankful. I am not in pain and can move!! Only been on this journey 1 year. GCA/PMR so have done really well to get from 60mg to present dose.

I have gained 2 stone in weight, lost awful lot of hair. Don’t sleep at all well and struggling to avoid sinking into depression. Pred brain etc.

Moan moan . Sorry about all that but trying to explain my desperation 😥😥

My motto is Accept it, deal with it and get on with it. Mostly it works. 😬😬

[PMRpro Ambassador in reply to SuziCutie]

We all do understand your desperation - all I try to explain is that trying to reduce too far too fast in that desperation will probably only result in you developing a flare and having to go back to a far higher dose. You are at a very good place compared to many - at least you realise that.

Weight gain really can be helped by cutting carbs drastically. Hair loss is often originally due to the GCA itself but doesn't manifest for up to 6 months after it starts. I couldn't sleep with the PMR - nothing to do with pred and once I was on pred it did improve. And if you are depressed - it can also be due to the autoimmune illness itself and if you are really down, speak to your doctor and get some help.

[Hidden in reply to SuziCutie]

Your symptoms are the same as those I had. It is not easy dealing with it and it brought on bouts of depression in me too. Eventually those symptoms go away and things start looking up. It takes time and keeping in touch with everyone on this forum to get through it because we know what you are experiencing.

[Tonysue in reply to Hidden]

Patience really does work. It’s just it always seems like a failure when you have to go back up a mg. or two. D.L. And PMRpro have kept me on the right track. 👍

[Grants148]

I found that just 1/2 mg reduction made a huge difference,l am currently on 5 mg.increased from 3 mg.because going down to 2 l/2 mg.caused a flare up of PMR.l am trying to go down again by scraping a very small amount off of the 5 mg tablet,just to be very careful,if that is OK for a week l shall try and reduce by 1/2 mg .l do not want another flare up or l may have to increase above 5mg.l would be happy if l could reach just 4 mg.,l do not think l will get back to where l was on only 3 mg .l wish you all the best and hope that you will manage to lower your dosage eventually without any problems.

[SuziCutie in reply to Grants148]

Thanks Grants148. No point in being in pain. I hope to get lower enough to avoid some of the horrible side effects.

I wish you well 🎄🎄

[SnazzyD]

Made a difference to me.