Positive vibes!

[Lyndaki]

I just wanted to give hope to all of you. I started my PMR/GCA journey back in 2018 on 60mg prednisolone. It was a gradual taper down to 5 then a bit slower to 2.5 then I seemed to get stuck….although my rheumatologist was happy with me on that dose. I tried several times to get down to 2mg but the symptoms returned & I was desperately tired on occasions. Fast forward to 2 months ago & I went on a country walk with friends & sadly “hit a brick wall”! I’ve never felt so exhausted! Anyway, I spent a few lazy days recovering & relaxing & felt normal again. So 5 weeks ago, I decided to try 2mg again, & bingo, success! No tiredness…well, nothing out of the ordinary for a 72 year old!…& no pains. I spoke to rheumatologist 10 days ago & he was happy with blood results so a few more weeks & I might try alternate days on 1.5 & 2 as he suggests. I feel light at the end of the tunnel! 👍

[Seacat30]

Well done. Thanks for sharing the good news.

[Longtimer]

Great news, hopefully we all get there in the end....👍

[SheffieldJane]

I would be content with that Lyndaki! Thanks for the good cheer!

[sewingdays]

That’s great. I’m on 10 mg & have trouble every time I hit 8 or 7. That’s for the encouragement & hope. 😊

[Viv54]

Great news for you ! these comments really help , it spurs people on ! Thanks for posting, good luck Viv🌷

[Octi]

I’m trying to taper very slowly by alternating with a 3 day, then 2 day, then 3 day pattern - eg. 3 1/2 for 2 days then 3 for a day. Doing that for 2 weeks then switching to alternate days for 2 weeks. Then doing 3 for 2 days and 3 1/2 for a day for another 2 weeks. So far this has enabled me to get down from 4 to 3 successfully. Currently working on getting to 2.5.

Hope that makes sense - it sounds complicated when written down but it’s really not! Good luck 😊

[PMRpro Ambassador in reply to Octi]

It is similar to the slowed tapering approaches we talk about all the time here - but the ones in the FAQs are spread over even longer which can be important as the doses get lower and the changes in dose become relatively larger.

[Floridafan in reply to Octi]

That sounds like a plan, I think I will give it a try as currently I’m having trouble getting from 3.5 down to 3. I have twice tried alternate days of 3.5 and 3 for a month each time but ended up having to go back to 3.5 each day for a month to get back on track. What do you do when you’ve successfully reduced my 0.5mg? Do you spend another month at the new dose or do you start a new taper straight away?

[Lyndaki in reply to Floridafan]

Definitely stay on lower dose for a month at least to let your body get used to that dose before reducing again

[Floridafan in reply to Lyndaki]

Many thanks for your reply. I shall start the new reduction in a fortnight 😀

[WarmVelvet]

Brilliant news! Well Done You! 😊

[LWNE]

Hello, we are having a similar journey! I also started on pred in 2018, and I have managed to get to 2.5mg whilst feeling well, and being very active. I still get some stiffness and mild pain first thing but it soon goes. My GP has not been in touch for 2 years but decided to do a meds review, and said "you should have been off Pred after 2 years" (!) She referred me to a Rheumy, no NHS appts available, but I have some private insurance, and last Friday I saw Dr Rob Marshall in Bristol. He was lovely, told me all was well, he sees many people like me, and confirmed that few people DO get over PMR in 2 years. He advised me to keep tapering, but always very slowly, and he is writing to my GP which will hopefully convince her that I still need a low dose of pred!Im going to now try a very slow taper to 2mg, and see how it goes. My general health is very good , and I know I am lucky compared to some with PMR. I hike at least 30 miles a week, and swim 3 times. I have recently retired, and am travelling lots, and I think being more relaxed is helping too! Good luck Lyndaki!

[Lyndaki in reply to LWNE]

Yes, a very similar journey & I’ve been quite active throughout…-apart from when I had piriformis syndrome! But I still managed some walking. I hadn’t seen …or heard from!…my rheumatologist for over 20 months & when I rang, they managed to fit me in for a telephone consultation the next day…that or September!!🙄 He was happy with everything so 🤞 Good luck to you too👍

[Ricketts40 in reply to Lyndaki]

I dont wish to pop your balloon and am pleased you have done well in your recovery. I finished my preds in 2021 after 3 years being on them. I eventually went to a private hospital (couldn.t get to see my GP) to get the results of my tapering where I was told I could come off preds. 18 months on I have pains in my outer shoulder area, and have a feeling PMR is returning. I have also just been diagnosed as having osteoporosis & osteopenia. I have refused the NHS treatment of AA for OP to improve my bone health and have only just started to top up my activities, Yoga, Pilates and more walking, I was also diagnosed as having Barretts Oesophagus 4 years ago so am on Pantoprazole for that. Does anyone know if these conditions are linked. I dont drink or smoke, have lost two stone in weight and eat healthily.

[PMRpro Ambassador in reply to Ricketts40]

What conditions linked? PMR and Baretts isn't as far as anyone knows. But if you have Barrets - what is anyone doing even OFFERING you AA? That is a direct contraindication.

[PMRpro Ambassador in reply to LWNE]

Ooooh - another supporter! Wonder if Sarah Mackie knows of him. He seems to be more RA (aren't a lot of them) rather than vasculitis but he has the right idea! Good to know