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! 👍
Positive vibes!: I just wanted to give hope to all... - PMRGCAuk
Positive vibes!
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Well done. Thanks for sharing the good news.
Great news, hopefully we all get there in the end....👍
I would be content with that Lyndaki! Thanks for the good cheer!
That’s great. I’m on 10 mg & have trouble every time I hit 8 or 7. That’s for the encouragement & hope. 😊
Great news for you ! these comments really help , it spurs people on ! Thanks for posting, good luck Viv🌷
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 😊
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.
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?
Brilliant news! Well Done You! 😊
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!
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👍
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.