Hypothyroid, coeliac, PMR - my journey to 0 pred

[Casia]

Diagnosed with PMR in 2017 and after a few months of not taking pred, I succumbed and my aches and pains mostly vanished. I was working in a high pressure environment then and was luckily able to keep working and attend my Pilates classes all the way through apart from a 6 week period during the first year.

Most people seem to gain wait with pred. I lost it and didn’t really change my diet though as a coeliac I probably eat fewer complex carbs than most.

All went fairly smoothly with my reduction of pred though I possibly like many was a bit hasty to begin with so had one or two flares en route.

I was never offered omeprazole or gastro résistant pred which is regrettable as I did occasionally get IBS symptoms but put it down to my coeliac sensitivity. However I was recently diagnosed with gastritis and have lost more weight. I was put on a high dose of omeprazole, then peppermint capsules for a couple of months and since stopping them feel much better.

This year I had a hip replacement in July and to my surprise all my PMR symptoms seemed to vanish post surgery. My bloods showed too that inflammation levels (CRP and ESR) had decreased considerably for the first time in 3 years. This encouraged me to aim to get off the pred before Christmas. I do wonder whether I needed to be on it for so long but the anaesthetist who advised me on the hip ( no GA, spinal and sedation instead) and who’d given me a large dose of dexamethasone during the operation ( incidentally now used for severe Covid) said I shouldn’t lower my pred till some time after my surgery.

So I gradually reduced using the excellent DSNS method. One week on I feel great, my tummy seems much better too. My only medication now is thyroxine. Apologies for the long post but I hope it might interest some of you with similar conditions. And I’ve learned so much from you on this forum , I can’t thank you enough. My GP has also learned from you as I have bent his ear with some of your advice. Thanks to you all. Merry Christmas. Love, Casia ❤️

[Trish10]

Thanks for your story; what is "the excellent DSNS method" - I could use something excellent to help me reduce?

[Casia in reply to Trish10]

Unfortunately I can’t find a link to the method due to the changes on the site but basically you gradually taper down to each new dose by taking the new dose on day 1, then 7 days of the old dose, then the new dose, and 6 days of the old dose, new dose, then 5 days of the old dose etc till you reach O days in between and you’re in the new dose, so your body slowly gets used to the new dose. When you get to lower doses below 5 mg it becomes increasingly important to do this. Some doctors advise patients to take a new dose on alternate days but I think that isn’t so successful for many of us as Dead Slow Nearly Stop. I hope that’s clear?

[PMRpro Ambassador in reply to Trish10]

healthunlocked.com/pmrgcauk...

all is explained in that post - just ask me if you have any queries

[PMRpro Ambassador]

That's great. I know a few others who had hip replacement and subsequently were able to get off pred. I don't think it is coincidence, I think the OA pain can "feed" the PMR. Take that away and the system recovers.

[Casia in reply to PMRpro]

Thanks so much for all your wise advice! X