4 months since diagnosis

[Jigsawlass]

I was diagnosed with PMR early March after paying to see a consultant privately. Now being seen under the NHS. I saw my NHS consultant for the second time today. I've just reduced to 9mg as of Monday. 11 to 10 was fine so fingers crossed. Rheumy was v pleased. Bone scan showed bones in good nick,bloods all good too. I have had counselling, am reducing work hours and take sick leave when needed. I am also resting lots. I know it won't necessarily be plain sailing but I'm feeling less resentful towards PMR now . I am discovering that any kind of mental stress will worsen symptoms. I am aware I am v fortunate in getting an early diagnosis and securing a good rheumy and I am so cross that a lot of folk on here haven't had such a positive experience. Bloods next month and back to the consultant in 4 months when I may have hit 5mg which the rheumy said is often a critical time

[DorsetLady PMRGCAuk volunteer]

So far, so good….

But don’t just plough on with tapering irrespective of any issues, and I think your Rheumy maybe slightly off mark, many find that around 7-7.5mg can be tricky. That’s when adrenals need to start thinking about working…

Good luck…

[Jigsawlass in reply to DorsetLady]

I will bear that in mind . I thought it was around the 5mg mark. She seems quite receptive and open to me tweaking dosage. So far, I feel quite confident as she is v willing to listen and notes down what I am talking about !

[DorsetLady PMRGCAuk volunteer in reply to Jigsawlass]

She listens - That’s good….

[PMRpro Ambassador]

Great to hear - but as DL says, don't plough on regardless. Listen to your body and what it is telling you. A listening rheumy is great - bit the patient needs to listen too!

[Jigsawlass in reply to PMRpro]

Don't worry, I won't plough on regardless...am learning that lesson !

[herdysheep]

The 'sticking point' probably varies amongst us all. I had real problems at 10mg. That's often at the time we are trying to reduce too quickly - certainly the case for me but having someone who listens and appears to understand, is wonderful.

[Jigsawlass in reply to herdysheep]

When I saw a consultant privately he wanted me to reduce from 12.5 to 10. Tried that and it didn't work. I went up to 11.5 and then to 10 successfully. My consultant I am under said that 12.5 to 10 was far too big a jump and , although she naturally wants to get me off pred, she seems happy for it to take as long as it takes which is great

[SheffieldJane]

I have high hopes with her! X

[HeronNS]

You may find it useful to start with a slow taper program now that you are reducing to 9. This was the level where my body started to complain. With use of a slow taper plan I was able to continue tapering by 1 mg per month and eventually by half a mg per month (the lower the slower) until I hit what still appears to be my lowest best dose after several years of about 2.5. (Context: achieved 3 mg by end of first year - from 15 - but it took another year to get to 1.5, and truth be told I've usually been at 2 or 2.5 since then, with a brief flirtation with zero - lasted about 6 weeks - and one major flare necessitating doses as high as 10 last year. Back to 2.5 now.)

[Jigsawlass in reply to HeronNS]

How slow? Rheumy suggested 1mg a month . She said not to reduce whilst on holiday (next taper would have been whilst in Italy). I am aiming to reduce to 8mg towards end of August, fully aware that I return to work the following week

[PMRpro Ambassador in reply to Jigsawlass]

If that works that is fine. If it doesn't, drop to 1/2mg steps. But she sounds reasonable - no heroics and have a holiday from tapering when on holiday!

[HeronNS in reply to Jigsawlass]

PMRpro said long ago and I've quoted her ever since: "It isn't slow if it works". Words for a PMR patient to live by!