Well I must say I had a very successful appointment yesterday with Rod Hughes. A long way to travel from Edinburgh but well worth it.
Summarised my symptoms to date and he explained in comprehensible language where he thinks I am at and suggested a plan for me to hopefully move forward.
He noted my regularly elevated liver function tests, which have pre dated my PMR diagnosis but continue to be out with ‘normal’ levels. I explained the knee problems I’m having with swelling and pain which have been treated with steroid injections and fluid removal.
He suggests I try hydroxychloroquine as it is not a hepatotoxic drug and would be a far safer alternative to methotrexate considering my liver issues. He feels my PMR is morphing into something else either RA or an inflammatory arthritis or something a bit unknown. My tapering had been going fairly well but I was a bit stuck at 10mg and it had taken me better part of 2.5 years to get there and with the knee pain all in all it was getting me down. I recognise I need to try something else.
He also came out with one of the most sensible statements I’ve heard on this long journey. In response to my saying I didn’t feel I absorbed whatever steroid dose I was on and I fortunately didn’t suffer too many steroid side effects he said “ those people who don’t show many steroid side effects often are those who aren’t getting the full benefit of the dose” I know PMRpro has often mentioned different absorption rates for different people but none of my health professionals acknowledged this.
Dr Hughes has encouraged me to find the correct dose for me and stabilise on that for a few weeks and in particular whilst I start the new drug. He’s writing to my GP and local rheumatologist with his suggestions so hopefully we are all aligned. I’m seeing my GP on Thursday so am hoping I’ll get the prescription. He has also suggested that I get an updated rheumatoid factor blood test to see if I have changed from sero-negative which can happen apparently! I might be one of the 1 in 6 who’s PMR gets rediagnosed
So I feel happier at the moment and have everything crossed that the hydroxychloroquine has some positive affect on whatever I have!