Thanks and a hopeful goodbye: I haven't posted much... - PMRGCAuk

PMRGCAuk
11,304 members โ€ข 20,605 posts

Thanks and a hopeful goodbye

reschen
reschen
โ€ข35 Replies

I haven't posted much, but I have read and benefited from many of your comments and experiences. I got PMR in Oct. 2017, diagnosed and started Pred in Feb 2018, started at 15mg, then 10,9,8 etc. monthly and have now been off Pred for two weeks with no recurring symptoms. Hopefully this will be my last post. So thanks again for listening and writing...much appreciated.

35 Replies
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I love to see a success story! Best wishes and continued good health!

๐Ÿคž๐Ÿป๐Ÿคž๐Ÿป๐Ÿคž๐Ÿป

PMRpro
PMRproAmbassador

I do hope you are right and it lasts forever! Two weeks isn't long though!

Quite... ;-)

That is brilliant news good luck!

Good News

And long may it continue

Greetings and thanks for your kind Post reschen (if you're still around.. ha!).

It's always good to hear positive news about people's experiences of 'recovery' (remission?) from PMR and / or getting off of the Preds. You seem to have had an exceptionally quick and easy Journey compared to many of Us Lot here, and also in the context of the most up-to-date data around the typical / mean duration of PMR (i.e. 5.9 years - as opposed to the conventional wisdom of 2 years as held by many GPs and some Rheumatologists). I'm assuming you had a reliable Dx of PMR in the first place..?

From what I've learned from a couple of the Experts here (take a bow PMRpro), it does seem that there are differing strains of this AI-related illness in terms of intensity and duration. And / or that, for some, it burns-out more quickly for whatever reason. Hoorah!

On a forum like this, I'm sure we sometimes (often?) don't hear from people for whom PMR / GCA have gone into remission (whether quickly or less-so), and who walk away into the proverbial sunset putting the entire experience behind them (I don't blame them!). So thank you for letting us know, and I'm glad you've benefited from the advice and support from this excellent Community.

Either way, it's good to hear from people on their on-going Health Journey, especially POST-PMR: either to confirm that you CAN recover and get back to Life as Usual or, (if not and at any stage later the symptoms return), to feel able to re-join the Club that none of us wanted to join in the first place, and be welcomed with open Hearts and Minds.

Best wishes and Au Revoir ;-)

'Uncle' MB

Nothing personal, but I hope we don't see you again! ๐Ÿ˜‚ All the best for a PMR-free and a healthy future.

It is heartening to hear from people who have shaken pmr and I wish you all the very best.

Hope all goes well for you x

Hidden
Hidden

All The Best ๐Ÿ‘‹

Wow. Lucky you. So good to hear of speedy success stories but don't tell the drs. They'll think we should all be able to do it.

Great news reschen. Long may that last. As Mark said, it would be great to get updates on how life is after PMR. Enjoy it ๐Ÿ˜Š

Thanks for the post reschen, I started my journey late October 2018 determined to be off pred within 12 months, I take your experience as a positive. Did you get any residual side effects or you back to normal as you started?

BeansHB
BeansHB
in reply to JohnnyQ50

I feel the same as you JohnnyQ50! I'm hoping that my determination (and going on the AIP diet) will count for something, and I'll be on the same path as reschen. I wish the same for you. That said, I am tremendously grateful to all those on this site who have waged much longer battles. Their experience and knowledge has been so helpful!

reschen
reschen
in reply to JohnnyQ50

I'm pretty much back to normal (albeit a year older) and I realize that two weeks is way too early for jubilation...stay tuned.

JohnnyQ50
JohnnyQ50
in reply to reschen

Hi reschen

Thanks for the reply, two weeks is early but to get down to 0 in under 12 months is quite an achievement in itself from what I have gleaned on this forum and provides hope and an incentive to others like myself to try and simulate your success.

I trust that you will try and avoid any stress and infections in the short term to try and mitigate any return of the dreaded PMR.

Please give us an update on your progress from time to time and hereโ€™s wishing you a Pred free 2019 and onwards๐Ÿ‘

JohnnyQ50

Lovely positive news, I wish you well and fingers crossed!

Good luck!! Please keep us posted occasionally with how you are doing xx ๐Ÿ‘๐Ÿ‘๐Ÿ‘

reschen
reschen
in reply to York54

Will do...I'm not giving up on the website yet...

Wonderful news!

Iโ€™d love to know whether you can offer any tips on your lifestyle or diet etc that may have helped contribute to your rapid remission, and as others have said it would be great to hear from you now and again about your progress post PMR.

Itโ€™s so heartening and encouraging to hear of your recovery.

Wishing you very well! ๐Ÿ˜Š ๐Ÿคž๐Ÿป

PMRpro
PMRproAmbassador
in reply to xdbx

PMR lasts FROM 2 years (or so) - so there are likely to be some people following the forums who are off pred in 2 years. I know of a few. A couple are still very much in remission another 4 or 5 years down the line - but one who got off pred for GCA in 2 years developed PMR a few years later. There are no hard and fast rules. The only hting I'd say here is that 2 weeks without pred and no return of symptoms is a bit soon to be breaking out the bubbly...

Oh best wishes. Well done. Soooo jealous - in a good way!!!!!! Let us know how you get on.

Great news! Gives us all hope. I wish you all the best for the future.

Good Luck. ๐Ÿ˜Š

well done and hoping that your new recent journey in club zero continues and without too many problems. I took my last half tablet of 1mg pred on the 23rd March 2018 after 3 yr and 3 month member of the GCA club (started on 60 mg Jan 2015) I have until recently been back to normal enjoying all things pre pred days but have been having neck and shoulder pains most days so am hoping it's not the dreaded PMR now deciding to call (it can surface anytime) have made appointment with doctor for next week (still have plenty of pred stock) but fingers crossed for you to enjoy Pred free days too.

Hidden
Hidden

Thatโ€™s brilliant news; itโ€™s so heartening to hear of someone whoโ€™s achieved recovery. All the best for a happy and PMR free future.

Well done you - a quick recovery

Oh happy days reschen!! As they all said, โ€˜long may it lastโ€™. It is so heartening to hear a positive tale such as yours. Just today I started on 4.5. I tried in November but within a few days old symptoms returned. Decided to stay put at 5 until after Christmas ( with a small boost up to 7 for Christmas Day). So today we try again!! Good luck for the future reschen. I guess I can say for us all when I say, โ€˜wish I was in your shoes!โ€™.

I wish you all the best but as some have said its only been a couple of weeks. Hopefully you have it sorted but stay in touch as you might be able to help someone else who had a similar time on Pred as you. Good luck

Sounds brilliant- long may it continue! ๐Ÿ‘๐Ÿ‘๐Ÿ˜€

Well done! It would be nice to know how much pain you experienced while reducing, if any. How did you deal with it? And did your doctor say if you had primarily inflammation or vasculitis..

reschen
reschen
in reply to Fireleigh

I only had one slight relapse when I ran a 10 Km race and because of the early morning start I forgot to take my 7 mg of pred!!!...by mid afternoon I was in agony and the finally about 4 pm the "penny dropped". I immediately took my missed 7 mg and by the next morning I was fine.

Fireleigh
Fireleigh
in reply to reschen

Thanks. It seems you are more active than I can be! The pain in my buttocks and down my legs rules out anything but gentle exercise. However I am convinced exercise is helpful and I am working on increasing what I do.

PMRpro
PMRproAmbassador
in reply to Fireleigh

If you have buttock pain it could well be piriformis syndrome and a physio could help a lot. I find keeping the add-ons under control like that means the PMR behaves better too.

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