Has Anyone Tried Prof Kirwan's Reduction Plan?

[piglette]

I have managed to yo yo down to 10mg of pred. It was not so bad for the last reduction as I had got rid of my rheumy, thank goodness. Has anyone tried Prof. Kirwan's suggestion of staying on 10mg for a year? I have a friend who was diagnosed with PMR the same time as myself who is also on 10mg and her rheumy has now told her to reduce by 1mg a month.

[daveD]

Piglette. I have reduced down from 15mg to now 6mg & 5 1/2 using PMRpros slow reduction method. apart from fatigue & muzzy head no problems.I looked at Prof. Kirwans method went for PMRpros method.so far so good.All the best with your journy . Dave.

[piglette in reply to daveD]

Thanks DaveD. I used PMRPro's reduction in the end to get to 10mg which was much better than the rheumatologist's you must reduce 5mg NOW! My worry about staying on 10mg pred for a year was I was not sure how I would react to reducing when the year was up and was wondering what had happened with others using the Prof Kirwan suggestion.

[Hidden in reply to piglette]

I've decided to stay at 10mgs for at least 6 months. I got down to 2 mgs with my PMR after 2 years and then got GCA. It's taken a year to get from 60 to 10 but I have felt ill nearly every day. At last I have some energy so I'm staying here at 10 to have a rest and enjoy life for a bit. I've already got the hamster face so why should I worry? Haven't told my doctors though !

[piglette in reply to Hidden]

Thanks Saxjody, I will try six months to start with.

[GreyOwl]

Hi piglette

I'm actually "under" Prof Kirwan's team (well, he's retired now) at Bristol Royal Infirmary and was put on 60mg pred to start with because of GCA. After around 4-6 months I started reducing until I reached 10mg per day and then stayed on that for a year.

After 12months on 10mg I started reducing, got down to 7mg had a flare up, went back to 10 for a couple of months and then started reducing again. I'm on 6mg now, 30 months after the first diagnosis.

My situation's a little complicated as I have several other health conditions, including fibromyalgia, so it's difficult to ascertain whether the PMR/GCA is in remission as I still have pain in neck, shoulders, lower back, legs and feet.

[PMRpro Ambassador]

I toyed with the idea of sticking at 10mg for a long time but since I suspect most of Kirwan's flares (1 in 5) happen once the patients get under 10mg and are simply reducing in too big steps for them I devised the dead slow and nearly stop concept. I don't think the flares ARE flares, I think they are very often steroid withdrawal which is often almost identical to PMR. If you use the very slow method you can stop as soon as you feel any PMR-type symptoms - you may only manage to get to 8mg but that is a considerable amount less overall than staying at the 10mg.

Personally, I think it is worth trying to reduce further but only very slowly and allowing a month at each achieved dose to be sure. And call a stop if you feel at all wobbly. I know a few people who have steadily reduced to way below 10mg before getting stuck.

[piglette]

Thanks Grey Owl and PMRPro, I think I may try a few months on 10mg and see how it goes, then embark on the below 10mg reduction. I need a rest from reducing as it seems all I have been doing since being diagnosed with PMR. Currently I only have coated pred at 2.5mg and 5mg, so will need to see my GP about getting the non coated ones.

[JJ2013]

I have stayed at 10 mg. for a year. I have tried to slowly reduce but flared every time around 8 mgs. As stated above, maybe it is prednisone withdrawal and not a flare?? I don't know, as I also have other conditions - thyroid, Fibro, and my Dr. thinks possibly the beginnings of RA. I do know that whatever it is (flare or withdrawal) it responds to the prednisone when I increase back to 9 or 10 mgs. My doctor prescribed methotrexate to help taper the prednisone, but after 4 weeks I felt terrible and my doctor said to stop taking it. I then had the worst flare I've ever had and had to go to 12 mg. to get any relief. I am beyond frustrated.