I Finally made it!

Hi all you lovely people. Well its 4 weeks now since I took my last dose of Pred. Yippee. For me it has been more than 3 years since diagnosed with GCA/PMR so not too bad though many ups and downs and other problems added on the journey. I got to half a mg every other day and found it very hard to let go of the crutch so to speak.

I had much in the way of withdrawal when I finally let it go but think its something that has been there for a while.....hard to let go.

A few questions remain if anyone could help. My skin is still easily damaged, still have purple marks appearing on arms, some stiffness/pain appears at times, still getting night sweats and fatigue (brick wall type) appears out of nowhere!

I also have weight loss from pred (opposite to most people. I know, trust me to be different) and will test my pre diabetic status with a blood test tomorrow.

[DorsetLady PMRGCAuk volunteer]

Hi Whisper2003,

Well done you! It's recognised that it can take up to a year for your body, including hormones, skin etc to get 'back to normal' after Pred, so don't be too concerned. It's a mighty powerful drug and seems to affect so many things, even those we haven't even thought about during the years on medication.

If been off it now for 12 months - to the day actually- and still get some pretty good bruises - not quite so many or colourful as before, but they still appear apparently from nowhere! It did take a few months for things to settle completely.

Of course, all the aches and pains of 'normal' life are now more apparent, and we are all a few years older!

Hopefully your pre-diabetic state should will improve quickly, and yes I also lost some weight with Pred, still keeping that off fortunately. Fatigue will probably be around for a little while, but must admit I never suffered with the sweating, so can't advise on that.

I guess you still have a few tablets stashed away, just in case, so if you find fatigue, stiffness etc is getting out of hand you could try the odd one to see if it helps. I'd try not to, but if you have to, then you know you can. Other than that I think it's just a waiting game - as ever!

Take care, and please continue to contribute - those that have got through this need to help the newbies!

[Baileyw06]

Congrats!!!

[PMRpro Ambassador]

As DL says - it is said by those who should know that it takes up to a year after stopping pred for the body to get back to normal and so you should continue to carry a steroid card and tell healthcare professionals that you have been on long term corticosteroids. Especially if you have an infection, trauma or severe emotional stress.

All the best! But please don't go away altogether!

[Hidden]

Thank you for your helpful advice and congratulations, though I don't feel I have achieved anything really! Good point re the stress as that seems to be ongoing here which doesn't help much.

I will stay on this forum as it has helped me so much. I will help if I can.

[SheffieldJane]

Hurrah Whisper maybe your handle should now be SHOUT! I hope you stay well for keeps now! Well done! Say hallo to normal for me, I'll be along shortly.

[Jackoh]

Many congratulations! I'm sure your experiences will help many others on here.

[Hidden in reply to Jackoh]

Thanks Jackoh. I shall continue to follow you all on here and hope to help some people if I can as I have been on here by many people. Good luck with your journey

[Marilyn1959]

Fabulous news Whisper. I am delighted for you. Your outcome brings hope for us all. Thanks for sharing. Best wishes for a pred free future.

[markbenjamin57]

Congrats Whisper, it must feel good to join Club Zero even if there's some residual PMR stuff still washing around in the system.

As the Aunties say (and I think I'm about to learn - now at 3 mgpd pred and reducing), it will probably take a year or so for the 'system' to get back into its normal balance even when off of the preds.

Either way, it must feel good to reach that elusive goal. Keep us posted on your progress, it's good to hear from people who are coming out of the PMR tunnel!

MB

[JoanJo]

Here here!!

Thanks for sharing your great news , Whisper! You've given many of us hope!! Do keep us posted. I'm down to 8 mgs from 20 initially (Started this past March) and feel blessed to be doing so well sans Methotrexate. Gluten-Free diet (last 4 weeks) has provided a big turn-around with much less knee pain and overall decrease in pain/stiffness. But to hear news of a fellow PMR traveler who has "arrived" makes me believe there is an end to this prednisone dependence and that I may ride a horse or ski again some day!!!😊

[Hidden in reply to JoanJo]

Well done to you for getting to 8 so quickly. Don't be in too much hurry to reduce now as you must allow for your adrenals to wake up at this point. It is true that diet can make such a difference to our health and if gluten free is helping you thats good news.

I've just started riding horses again, albeit quite carefully, so 'normal' life can be resumed for all of us. You will get there too!

[PMRpro Ambassador in reply to JoanJo]

And I skied for several years with PMR - it was other things that made me decide to stop. Mostly, it has to be said, other skiers!!!!!!