Feel like nearly 2 years waisted

[Deneez99]

Diagnosed with PMR Sept 2020 put on 15mg of prednisolone. Have tapered down apart from one bleep but 3 weeks ago I was down to 1mg. In the last three weeks I have deteriorated alot but this time in my fingers, wrists, elbows, shoulders and hips. I wake in the night with terrible pain in my hands and take pain killers. I am back to having no energy and a loss of mobility. Dread going to the doctors and being put back on high dose steroids. I have experienced so many dreadful side effects including cataracts which came very suddenly.

Can anyone relate or give me some advise. Please xxx

[PMRpro Ambassador]

No need to go back to high dose steroids providing you react quickly.

I would try a week of 5mg, maybe 7mg. If this is just a flare because of overshooting the dose you need that will make a big difference. Then you should be able to go straight back to 2mg, Prof Dasgupta told us he kept people at 2-3mg longer term to avoid such relapses. To get to 2mg in not yet 2 years is really good - and there is no real hurry to go further at the present.

You aren't heading relentlessly to zero, you are identifying YOUR dose, the lowest effective dose that gives the same result as the starting dose did. You have found it for now - it doesn't mean you won't get lower, just not yet. But don't wait and see if improves - then you will run the risk of needing much higher doses.

[Deneez99 in reply to PMRpro]

I have just tried a week at 5mg but not much improvement should I go up to 7mg for a few days then try going back to 3mg. Test results of liver scan show fatty liver which my doctor said is due to steroids. I don't want to risk more liver damage. So confused 🤪

[PMRpro Ambassador in reply to Deneez99]

What has liver damage got to do with low dose corticosteroids? The risk of NAFLD relates to high doses (40mg or so) probably in conjunction with very long term steroid use or metbolic disease or to the use of androgenic (anabolic) steroids. Unfortunately there are many doctors who will blame steroids for ANYTHING - I will concur that steroids may worsen a situation but it is not common.

If this does need more low dose pred you need it - or you will end up back where you were at the start and either in a lot of pain or needing to go to a much higher dose, exactly what you are trying to avoid. . That is a risk for NAFLD. You can often reverse NAFLD by losing weight and improving your diet. As little as 10% of body weight weight loss can reverse itl

[Deneez99 in reply to PMRpro]

Thank you for your prompt reply. Would you advise me to go up to 7mg for a week then 5mg then down to 3mg

[PMRpro Ambassador in reply to Deneez99]

Not for me to advise but I would try it and see if it helps, There is always the possibility you are having a proper flare in disease activity. Have done more lately or under stress? No chance it is Covid?

[Deneez99 in reply to PMRpro]

Definitely not Covid but have been under stress worrying about my coming eye surgery and my liver test. Thank you for your support and help. Deneez99 x

[PMRpro Ambassador in reply to Deneez99]

Stress will cause a flare - even my rheumy says that.

[Deneez99]

Thank you so much for your help I now have some hope. I will keep you posted.

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpro’s comments - catch it quickly and a much smaller dose required. Probably 5mg as advised

[Deneez99 in reply to DorsetLady]

Thank you x

[Nextoneplease]

Feel for you Deneez99 - you must feel so disappointed. However, with luck you can catch this flare as suggested by PMRpro and DorsetLady 🤞🤞

Wishing you all the best and sending (gentle) hugs xx

[Deneez99 in reply to Nextoneplease]

Thank you I hope so xx

[Heron82]

I know it is hard, but try not to be too despondent. It seems to be a condition that is best to learn to live with. Try to go with the flow of your symptoms as it is not something that can be easily overcome with a short course of steroids. I too developed cataracts as a side effect. I have now had the lens replaced and my vision is better than it was before PMR raised its ugly head. I wish you well and hope the advice above helps you as it has helped so many of us.

[Deneez99 in reply to Heron82]

Thank you for your kind words. Xx

[larkthebark]

Great advice as always , nothing to add from the experts. Just keep going in the knowledge that you are doing really well up to now. Nip the build up of inflammation quickly and stay positive. You may need low dose steroids for a while yet.I wish you well on your PMR journey. Mine started in may 2020 and i am weaning slowly to 3mgs but have had to stop for a few weeks as computer (body) said no

🤣🤣😂