Slow tapering

[greengages]

Can I ask you wonderful people your thoughts/advice about slow tapering please before I speak to my GP next week. Had a flare and been on 10mg of pred for 2 months. Started tapering as in Kate Gilberts book ie 10mg for 6 days, 9 mg for 1 day, then next week 10mgs for 5 days and 9 for 2 days until down to 9mg for 7 days which will happen next week.

Do I stay on 9mg for a couple of weeks and then start to taper to 8 or do I stay for a month at 9 and then taper to 8? Would value the excellent advice of this forum which often answers questions before Ive asked them! It would be interesting to hear if anyone has experience of this method of slow tapering. I feel I was encouraged to taper steroids too quickly last time around and had a couple of flares but the last one was pretty bad. Now have osteopenia and been placed on risedronate as AAcid gave me more joint pain. Have some aches since starting the risedronate so its difficult to know if its the taper or the risedronate. I'm an active person and reading posts i realise i have to learn to rest! Apologies for long post I think I'm only coming to terms with this 14 months after diagnosis as honestly thought after reading the NHS advice on PMR that I would recover quickly and easily. Whilst here can I wish you all a wonderful xmas and hope 2021 brings happiness and better health.

Also thank you to the Dorset Ladies who i mistakenly privately messaged this post, couldn't manage to do as you advised so rewrote post! Trish

[DorsetLady PMRGCAuk volunteer]

Hi Trish, already answered you PM...

[PMRpro Ambassador]

What were your t-scores for the conclusion of osteopenia? It is a very broad church, from almost normal for a 30 year old to almost osteoporosis is all osteopenia!

This is my version of slow tapering:

healthunlocked.com/pmrgcauk...

Did Kate at least acknowledge it wasn't her idea but an adaptation of my and DorsetLady's slow tapers!!!

[greengages in reply to PMRpro]

PMRpro Thank you for your reply I’m 64 years old and last bone scan was I think 4 years ago which was normal. I was very surprised at the results as I’m very active. I’ll have to look at the book again to see if she acknowledges yours and Dorset lady’s idea. Thank you for link to your version of slow tapering it’s very helpful

[Michdonn]

Hi greengages, I followed a similar taper regiment. Whether to continue to taper or halt the tapering is how you feel. Never reduce your dosage if you are having any PMR pain. I would stabilize at a level if not feeling just right, if I felt great I would start the next taper level. Never reducing by more than 10% till I could not cut the level any smaller. Try and listen to your body, you know better than anyone how you are doing. Good luck on the rest of your PMR journey. 🙂

[greengages in reply to Michdonn]

Thank you Michdonn also good advice to follow

[judyb100 in reply to Michdonn]

Thank you for the great tapering advice!

[Michdonn in reply to judyb100]

You are welcome good luck!

[kbass in reply to Michdonn]

It took me a year to taper off. Many pauses and restarts. Finally got off completely.

[Michdonn in reply to kbass]

After a terrible flare and ending up in a wheelchair on 30mg for 6 weeks and many more flares and hurting myself it took me 3 years to reach zero and remission. You reached zero quickly, good for you! 👍🙂

[Bandittabby]

Have been slowly tapering by 1mg per month. Now down to 8 mg and so far no pain, prednisone is a miracle drug, I just wish it didn’t make me put on weight!!

[greengages in reply to Bandittabby]

Funnily enough I haven’t put on weight - yet - always had a good appetite and now have an even greater one. However have a load of fine hair appeared on my neck??!

[PMRpro Ambassador in reply to Bandittabby]

Try cutting carbs - especially processed ones and added sugar.

[tangocharlie in reply to Bandittabby]

When I first started on Pred 9 years ago I hadn't yet found this forum so knew nothing about living with PMR, so put on weight expcially round the trunk - the 'Buddha belly'. In more recent years I've actually lost quite a bit of weight and keep it off by eating low carb. At one point my blood sugar levels were heading upwards towards pre-diabetes levels but are now comfortably in the normal range. And also I find that by pretty much eliminating sugar and other things like bread, white rice, potatoes and pasta and most fruit except occasional apples, pears and berries, I don't get the hunger pangs many people get with Pred, which is why they crave sweet things and leads to a viscious cycle of raising blood sugars then your body having to respond and pump insulin out to bring BS down again - constant up and down swings. Dr Michael Mosley's books eg the Blood sugar diet are good guides to low-carbs and if you search old posts there are lots of websites.