Reducing Prednisolone

Hi I am new on here and have been reading lots of posts on reducing predictions.

I don't know if I am lucky or not!!!!

I was diagnosed with PMR Feb 2014 could hardly move and turn over in bed had tests for Addisons/PMR & Fibromyalgia but what was worrying me was my son getting married in Las Vegas in the April and me not getting there (10 hour flight from UK) my GP started me on 15mg Pred by the wedding I was on 12.5 and felt great by October 2014 down to 7 had a flare up GP put me back to 10mg. I had very bad anxiety attacks so off my own back decided to reduce to 7 again. My Rheumatologist ...who was great said it was drastic but if I had a flare up to only go back to previous dose. I have now got down to 1mg by reducing 1day a week the next week reduce 2 so it takes me 7 weeks to do. But when I have reduced I stay on that dose for 12 weeks then start reducing again , the pain I have is not like PMR pain but is where my muscles feel fatigued and I have over done things. My job in retail is manual with lots of lifting and stretching....I knew I had over done it Christmas week getting reading for sale as my shoulders were tender. I am now reducing to come off pred and I have a muzzy head and ache a bit but I have found exercise has helped all the way through even when I was in pain and could hardly move and tired I still walked round the block..about 1km. Also aromatherapy massage has helped or Thai massage. The lady that does my Thai massage has PMR and understands what it is about, I really hope this gives some hope to anyone else.

[DorsetLady PMRGCAuk volunteer]

Hi Rosie

Yes I think you are lucky! Perhaps you're one of the patients that doctors always talk about. Think your fatigue may be due to adrenal glands, but just be aware of anything that could indicate PMR. Take care, and please keep in touch.

[Hidden in reply to DorsetLady]

Thank you. I do feel the cold now where as i used to love the cold weather and couldnt cope with the hot now it is the other way round.

I think i am lucky to have a GP whose wife has PMR so understands it also my rheumy Dr Jenkinson has been great.

I will post how i get on. Xx

[piglette]

You are lucky you have such good professionals around you and not some rheumatologist who says you have been taking steroids for three years so you cannot have PMR any more or a GP who says you should take Alendronic Acid as you are on long term steroids, without bothering to check your bone density.

I am very impressed that the lady who does your massage can do it with PMR. She must be exhausted. A Thai massage sounds wonderful.

[Hidden in reply to piglette]

Hi piglet...thai massage is done on pressure points ..you are fully clothed. Kate who does the massage has 6-8 clients with PMR or fybro and thai masssge has worked on all bar 1 client. It worked for her so she trained in pilates and thai massage to try and help others.

I will try anything to help . Also i had a very stressful part time job my husband was convinced it was making my symptoms worse and suggested jacked it in so i found another job and after about 5-6 months noticed i was feeling a lot better and was also reducing my pred.

[piglette in reply to Hidden]

Hi Rosie I do have massage every so often, although it was curtailed a bit when the Spa I go to caught fire!

It does sound a tough job doing Thai massage if the lady who does it has PMR I do not envy her. I know another lady who works in the local market at a fruit and veg stall and she is in a really bad way at the end of the day. I don't know how long she can carry on.

[PMRpro Ambassador]

Yes - I think you are lucky in all directions! A GP who really knows what PMR does is a great start! Especially when he allows you to reduce in a sensible way. And you PMR is behaving - but I suspect that has a LOT to do with slow reduction.

Are you under RNHRD?

[Hidden in reply to PMRpro]

Yes i am under RNHRD i had my dexa scan there as well.

I hope posting my experience will help. I havent had it easy some times the pain was so bad i couldn't work. X

[Js94947]

Your story is similar to mine. I have been off preg 7 months. I do moderate exercise daily, inflamation rate is nil. Progress is slow, thigh, shoulder, arm muscles are sore. I am 75, some soreness is due to age. Doctor tried to pass my soreness as arthritis, it is muscular in nature. Good luck!

[Hidden in reply to Js94947]

Hi muscle soreness definately feels like muscles starting to strengthen..i ran my first mile in 3 years on tuesday and apart from normal ache with exercise feel good. I have set myself a goal to run the great south run october 2018 i will be 58 then so plenty of time to take it slowly i last ran it 2006 2008 2009 & 2013 though walked some of 2013 it just before i was diagnosed with PMR.

good luck to you also x

[Hidden]

Hi I just wanted to give a positive update. I am now into week 8 since coming off Predniselone the first 2 weeks were up and down but I now feel back to normal!!! My muscles hardly hurt now, I am back doing regular exercise which I have missed, being very sporty, I have seen an osteopath twice which has really helped especially the cranial osteopathy. I am also taking ginger supplements which was suggested by my GP and osteopath. I am thankful that I have an understanding GP who unfortunately is retiring at the end of this year. Good luck to everyone and may you all eventually be pain free, I have read lots on this forum that has helped me.