Preparing for Dr Hughes appointment - help!

[Lochy]

I am seeing Dr Hughes on Monday and am trying to prepare as much as possible. Just want to check there’s nothing in particular I should ask about.

To summarise I was diagnosed and commenced the steroid path March 2016. Aged 56. Have struggled along a rather rocky road since and the lowest I have achieved has been 9mg. A few flares and raised doses. This summer my aches settled into my knees and became quite debilitating. Rheumatologist drew off fluid (which when examined showed xxx white blood cells, indicating a lot of inflammation I believe) and gave me a steroid injection in left knee. Right knee only creaked didn’t need any treatment! That was at the end of August. Remained on oral dose of 10mg and continued to taper which in hindsight was perhaps a bit stupid. 😞

Symptoms reappeared and by end of October was very uncomfortable but again only in left knee. Amazingly I had got another rheumatology appointment on 1st November as I had requested a move to a different rheumatologist, a lady I had seen privately and who seemed more empathetic and interested in what I thought too. The timing couldn’t have been better as I was in a lot of pain in my knee by 1st November and I duly had more fluid removed and another steroid injection.

Lots of chat about methotrexate! She believes I have PMR but with unusual presentation in certain joints. She had a physio with her who is studying the use of Ultrsound as a diagnostic tool. They saw the big area of inflammation in my knee and then looked at my hands and identified pockets of inflammation around my knuckles even though I have no symptoms as yet. The steroids are obviously covering that up. My joints and bones they could see looked normal, apparently! She reckons methotrexate would help me even though I always present with elevated liver functions. I appreciate that I will have blood tests regularly to monitor the situation but I do wonder. She increased my dose to 13mg which I remained on for a week and felt totally pain free. Reduced to 10mg and again was fine for five days. Started to get aches and pains again so increased to 12 and have decided to stay there until I see Dr Hughes. I don’t think this yo-yoing will be doing me any good. I now have pain in my sternum and my left shoulder blade - areas that seem to persist in me when I taper.

All I’ve come to realise is that I am struggling to know what to do anymore and I feel pretty low about that.

I am hoping Rod Hughes will give me a second opinion or alternative suggestions. At least my Edinburgh rheumatologist was very supportive of me seeing him and asked to be copied in on his thoughts. I felt that was huge progress in itself.

If he thinks I may also have an inflammatory arthritis perhaps MTX is they way ahead for me. It is just so confusing to know what to do.

This is a rather long winded post but if anyone has anything they think I should ask about I would really appreciate their input.

Thanks

[PMRpro Ambassador]

I would say tell Dr Hughes what you have told us - and let him ask the questions. Then work from there.

[Lochy in reply to PMRpro]

How right you are! I’ll have to take my epistle with me as guaranteed the memory of the detail will fail. It’s so good to write things down, cathartic.

Will update after the appointment. Thanks

[suzy1959 in reply to Lochy]

I hope you get what you need from Dr. Hughes. He is my fourth and by far the best Rheumy I have had over the 6.5 years of my PMR. I think he will be thorough with you and give you a considered response. I find him always willing to explain things and take his time. I never feel rushed. Good Luck !

[Lochy in reply to suzy1959]

Thanks Suzy. Everyone on here talks so highly of him I’m feeling positive.

[Gaz227]

Really hope it all goes well for you Lochy, when I saw him the other week his way of explaining things shall we say in layman’s terms was first class. He also covered a couple of bases that my GP had missed waiting for results in them. Funny you should say about the sternum pain I have also developed that symptom which I never had before , Dr Hughes said it was inflammation in all the little joints where your ribs connect . He refeeed to the statement medial myalgia and drawed a flow chart of causes which he said looking at my case history was 80% probably PMR but gave me 4 blood tests that could produce the same thing . He made me feel very positive about my approach and that is so important for us especially when we have them moments of feeling lost . Good luck 👍 let us know how you get on .

[Lochy in reply to Gaz227]

Thanks. I’ve heard a few on here mention the sternum pain but it’s odd how it comes and goes! Will let you know. Kirstin