Appointment with rheumatologist

[Janann25]

I have an appointment to see my rheumatologist later this week - last appointment 6 months ago - and wonder whether I could get some advice before I see her.

I was originally diagnosed with PMR in May 2017 - I had CRP level of 128 - but was then referred to the rheumatologist in August where she thought I probably had GCA and prescribed 40mg Pred. I struggled to reduce and had to increase again several times but, by reducing by 1mg per week since November, I've reduced to 20mg. I have monthly blood tests and each month since I started on 40mg, my CRP levels have been between 2 and 5.

I'm coping ok - well, as well as can be expected!! - with breathlessness and and a rapid heart beat (my local doctor organised the relevant tests and was happy with the results) but the overwhelming fatigue continues - and again, I try to learn to live with that 🙁. My big problem though is the really bad feeling of pressure in my head, which causes such bad dizziness I just dread having to get up and move around. The feeling of pressure never goes but the dizziness isn't present when I'm sitting or laying. Sometimes I also get occasional pain in the head. A couple of weeks ago I started to get flashing lights in my right eye so I took myself off to A&E who in turn referred me to a doctor in the Eye Clinic. He was very thorough and did scans as well as checking in the eyes. He could see no problem relating to GCA but I'm being monitored for possibly the start of a detached retina. So, I feel as if everything that can be done has been done but still the issues with my head continue.

So, what all this is leading up to - and I apologise for the long-winded ramblings! - is, has anyone had a similar problem and, if so, was there anything which could be done to ease it? My rheumatologist isn't very easy to talk to - very definitely has her own agenda! - so it would be so good to be able to see her with a bit of additional information beforehand.

Many thanks

Jan

[PMRpro Ambassador]

Can you take someone with you? And write it out as you have presented it here, though perhaps with bullet points for the main bits. Be respectful but firm about being heard.

[Janann25 in reply to PMRpro]

I would love to have someone with me but I have no family - my husband passed away in 2016 - and most of my friends don’t live locally. I will, however, take your advice about the bullet points and try to get her to listen!! I realise that I’ve been very fortunate with the check-ups about other symptoms/side effects but this is just so debilitating. I’ll let you know how I get on - and thank you.

[PMRpro Ambassador in reply to Janann25]

Do you have a phone that records? If so, take it out of your bag and say you hope she doesn't mind you recording the consultation as you find it difficult to remember what was said. That may concentrate her mind to focus on the patient...

[Janann25 in reply to PMRpro]

What a great idea 💡 Yes, my phone records so I'll do that......

[Gaijin in reply to PMRpro]

Wow.. that is a great idea! I'm definitely putting that into practice.