cautiously positive

[Rosina1871]

After 6 years of PMR and then GCA I took my last 0.5mg of pred three months ago. I tapered really slowly to the point of 0.5mg every 4 weeks. I am fully aware that it could come back but it’s good to share some positive news

[PMRpro Ambassador]

That is great news - and long may this last! Thank you for posting and telling us. Don't leave us though - your experience is so valuable.

[Rosina1871 in reply to PMRpro]

I look at the posts every day and will continue to do so. I’ve learned so much from this forum. So helpful and reassuring that you’re not alone

[Harrywogan in reply to Rosina1871]

Great to hear,IAM at 1/ 1/2 and going very slow, but can't concentrate on read a book, strange xx

[Charlie1boy]

Good to hear. Well done and long may it last.

[DorsetLady PMRGCAuk volunteer]

Great to hear -and fingers crossed…

[123-go]

Great news! The way you tapered very slowly is a positive example to those whose doctor/rheumatologist promotes the view that, “You have to ‘get off’ steroids quickly.”

[PMRpro Ambassador in reply to 123-go]

Not only that - but espouse the concept that a low dose of pred "can't be doing anything"!

[123-go in reply to PMRpro]

Absolutely!

[piglette]

👍👍👍

[PurpleSheeps]

Hi - I too had GAC and gradually tapered off the steroids down to none around last August. I am still on methotrexate and have to stay on them for another year, but I am currently in remission. 😁🤞

[DorsetLady PMRGCAuk volunteer in reply to PurpleSheeps]

Sorry to be picky..but if you are still on medication, not sure you can say you are in remission.. or at least not the remission we talk about on here.

Yes you are in 'medical remission' [ie the medication is controlling your symptoms] but not in remission [being off all medication for a matter of months and no return of symptoms].

Fingers crossed it does become the latter.. 😊

[PurpleSheeps in reply to DorsetLady]

Thanks for that - I was just going by what my consultant told me. Guess they don’t all know everything! 🥴

[DorsetLady PMRGCAuk volunteer in reply to PurpleSheeps]

Yes but they refer to medical remission (which you are in because your symptoms are controlled) -but not what we refer to as remission.

But as I said, one day you will be…

[PMRpro Ambassador in reply to PurpleSheeps]

Not so much not knowing but not getting the difference,

[Grammy80]

So happy for you~! Your news is important for all to hear. Love that you went down so cautiously and slowly. Keep sharing, please~!💞

[byebyebicycle]

Great news and gives us all hope. I have a question if you don't mind - approximately how many times in your slow taper did you have a flare and resort to the flare protocol. I've been slow tapering as well from 15mg and now in tapering by 0.5mg from 10mg I hit my first flare at 8.5mg. But I've only been on Pred since Dec 2023.

[Rosina1871 in reply to byebyebicycle]

During my slow taper I never flared. Four years ago I was on 6mg and then GCA reared its head. Then a couple of years ago when I was on 10mg I had the start of a flare and took action. From then on with a very slow taper, no flares . Good luck

[DorsetLady PMRGCAuk volunteer in reply to byebyebicycle]

As Rosina has said, if you follow a slow tapering plan, then in theory you shouldn't flare.. like her I never did all through my GCA.

But as I always say with my plans, using a slow taper makes it easier to get from current dose to lower one that's all. But at the end of the day if you go below the level your disease requires then you go below it... end of.

It's not a magic bullet, you still need to manage your illness, it just makes the process easier.

[Dahliapink]

This is such good news to hear, and gives me hope! Thank you for sharing, and all good wishes for continued good health.

[Noni71]

Well done! We all need some positive news.

[Jackoh]

So pleased for you!!💐

[diana1998]

Congratulations! So uplifting to hear👍

[Popoy]

I know how you feel I took my last 1mg 3 weeks ago !

[Polym]

Brilliant how did u feel at 5mg and below

[Rosina1871 in reply to Polym]

I felt ok. My adrenals were borderline but I just took it easy on the days the fatigue hit me . Overall, I just made sure the taper was very slow

[LMali]

Great news - and very nice to hear from someone who has come out the other side. I suspect a lot of people leave the forum when they get better which is only natural, but it is nice of you to come back and tell us - thank you!

[PRL1957]

Congratulations! I hope your PMR and GCA do not return.

I share your caution that the conditions could return, but I expect to be celebrating a year off pred in just under 2 weeks.

I have posted about temperature previously. Before my illness started and throughout, I found a subtle and gradual rise in my temperature to be a useful bellwhether for 'things going wrong'. Just a suggestion, but you might also find it to be a useful reassurance that your PMR/GCA is not returning.

[Rosina1871 in reply to PRL1957]

Thanks for your reply and good luck

[greengages]

That’s such fantastic news, like you I read the posts regularly such a knowledgeable group. Well done you I wish you all the best for the future 🙏

[Viv54]

Great news , it gives people a boost ! Good luck .

[howtotaperdown]

well done, I love that you posted this, it is inspiring...