2 years Pred free

[Liby57]

I haven’t posted on the forum for quite some time but I do receive posts and notifications which I read. I’ve noticed that there are quite a number of new members since I last posted who are struggling with their diagnosis of PMR and also quite a few members struggling to reduce or withdraw Pred altogether. I also felt that way but did finally get to the end point and have been Pred free for 2 years now and feel well and back to my normal fitness pre PMR. I just wanted to let those struggling know it is possible to be Pred free and feel better again. Sending best wishes to you all.

[PMRpro Ambassador]

Thanks for dropping in - come by more often!! You too have a valuable role here.

[Liby57 in reply to PMRpro]

Thank you. 🙂

[DorsetLady PMRGCAuk volunteer]

Always good to remind new patients - although it may seem like it, PMR is not as insurmountable as they think. .. and there is life, and a good one after it…

[Hopeful424 in reply to DorsetLady]

That is encouraging! I have the thinning hair and have developed afib. I wonder if the PMR led to that. Can affect sinus node area of the heart I read. If the diseases don't kill me the meds will. Now on Eliquis and an antiarrhythmic. All this after getting the Covid vaccine!

I hope for remission at some point. Had to go back to 4mgs per day.

[DorsetLady PMRGCAuk volunteer in reply to Hopeful424]

You you will get there ..

[CarolF1312]

Many thanks for your post. Gives us all hope.

[123-go]

Well done! So good to read your encouraging message.

[SheffieldJane]

Thank you Liby57! Just what we need to hear in this seemingly unending battle.

[Temoral]

Positive News is always uplifting..thank you.😊

[Dorothy61]

Thanks for your encouraging message. So good to hear.

[Lonsdalelass]

Hi Liby57, thanks for posting. I've been pred free for 18 months now so a little behind you. Can't say I'm completely back to normal or fitness pre PMR, but then I am 4/5 years older now! I still get some aches, shoulders and arms rather than elsewhere, (do you still get these?) which are usually put to bed with paracetamol, so I feel I can live my life reasonably well and am thankful for that. I too check in each day with my notifications and read the posts sent in....good luck to everyone on here, and take some reassurance that there is life after pred! 😀

[Liby57 in reply to Lonsdalelass]

Hi well done and congratulations on reaching zero. It did take almost 18 months to reach my current level of fitness, thankfully I don’t have any pains in my shoulders or arms anymore. I wonder if this is the case for others who have reached zero Pred? Sending best wishes Liby.

[Orange_2022]

Thank you! So glad for you. I'm staying optimistic!

[Bluey-1]

It’s so good to hear from someone who is pred free and back to normal fitness. Very heartening. Thanks for sharing.

[PEC2]

It is so good to hear these stories. Four years into this disease my old active self is hard to conjur, and still harder to reimagine . Thanks for the hope.

[Joan-E-D]

To add to encouragement for PMR sufferers. I had PMR from Oct. 2016-Nov. 2019 and have been Pred. free since then. I gradually built up my leg muscles during lockdown by walking in my local very hilly park and now I'm about as fit as a nearly 80 year old can be. Saying that, I try not to get too stressed to avoid PMR coming back. I just have a bit of arthritis in my neck and left over Carpel Tunnel Syndrome both of which I can live with without too much discomfort. I had my cataracts (another side affect of Pred.) removed and can now see better than I ever had in my life. So please live in hope rather than despair, which I know I felt when I was in the throws of PMR.

[Viv54]

Thanks for this, i am really finding it hard atm, i just cant seem to get below 7,5 mgs. I had a new hip almost 9 weeks ago so dont want to rock the boat ! I will give it another go after Christmas! Thanks for taking the time .Gives us all hope . Best wishes Viv.🙂

[LemonZest11]

Great post, thank you for checking in and letting us know that it's possible to have a life beyond our struggles. Long may it continue. 💪

[Artandpoetry]

Thank you. Your post gives me hope🤗

[5goFlotilla]

Thanks for your positive post , stay well .

[Avadip12]

that’s fabulous to hear . Hope it remains that way

[Freshairfiend]

thank you, so reassuring for a newbie to PMR like me.

[Singalong1]

I was diagnosed with PMR in December 2019. I too have been off Pred for some time: 15 months. There’s a (long) story to this! In August 2021 I became very ill. (At this point I was slowly tapering at 3.75mg.). GP suspected adrenal issue and sent me to A&E . Various tests, doctors baffled. The junior doctor looking after me sought advice of senior doctor. He simply took one look at me, as I was walking along corridor, said “you dont have PMR”!! He asked if I was on Pred and what dose, I said 3.75mg and he scoffed, and said to stop taking the med. I had no intention of doing so. He advised junior doctor that it was probably a virus, sent me home with advice to return on Monday. I was still feeling very ill(worse at night with fever, rigours, etc). Following morning, call from hospital advising me to return to hospital asap for UV antibiotics as I had blood infection (turned out to be Sepsis!). A whole day on ABs, no improvement so admitted to hospital. Was in for 3 nights (nightmare!). The doctor who was leading (who I never saw again) was the very doctor who said I didn’t have PMR. And, on his instruction, they stopped my Pred - cold turkey. I was too ill to make a fuss, although I did raise my concern with another passing doctor, to no avail. I went home with further course of ABs and decided to stay off the Pred and see how I got on. I’ve not taken them since. I have residual mild aches in shoulders but I can live with that. I wouldn’t recommend it, but I do seem to have got away with cold turkey! Although, I’m mindful of signs to watch out for should PMR rear it’s head again. I too check in to this site regularly and I would add to voices that reassure that there is light at end of PMR tunnel, some take longer than others. Sorry for long post. PS: heartfelt thanks to ambassadors and regulars who take the time to support and reassure us all. It certainly helped me during my almost 3 year journey.

[Lonsdalelass in reply to Singalong1]

Blimey, that's a different way to stopping pred 😅. Seriously though, I'm so glad you've been OK and got through it; you were very brave to follow their orders in just stopping it but can understand as you were so ill at the time. Well done with the outcome! Hope those niggly aches in shoulders stay at bay, as I hope mine do too. 🤞

[PMRpro Ambassador]

Shakes head sadly ...

A patient on an adequate dose of pred at any stage may not "look" as if they have PMR. More crystal balls!

You were lucky - not least they missed red flags for sepsis I suspect - and it is great that you were able to stay off pred but he was taking one heck of a risk.

[potterylady]

That's fantastic! Did you have both PMR and GCA?

[Liby57 in reply to potterylady]

No I was lucky I only had PMR.

[potterylady in reply to Liby57]

Oh good. I'm so happy for you to be on such a happy healthy path!!!! Thank you for giving us all some good news!!

[Singalong1]

Just PMR, thankfully. I do realise I got away lightly. So did the hospital A&E doctors!! They were reckless in their approach to my PMR and med regime, but I guess this was not their priority in A&E. I’m very mindful of signs of both PMR and GCE to look out for. And that either could bite at any time. Fingers crossed! I’ll stay tuned in to this site, which has helped me to deal with PMR. Thank you. Wishing you all good health.