I’ve been wanting to ask for advice and support here but I actually don’t know what the question is other than I am feeling let down and unheard by health professionals and, I am sure like many of you, feeling I have to manage this condition my self and that, after three years, I feel I understand less rather than more.
I was first diagnosed with GCA nearly three years ago and been on prednisone through out. I have tapered, increased, tapered a number of times. The past 4-6 months I have felt increasingly unwell. I saw rheumatologist in September who considered a PET scan but then changed his mind- thought might need to double check my aorta I think. Suggested I increase from 1mg to 3 and see how I got on. I didn’t feel any better but stuck it out for 6 weeks. Had a blood test. CRp normal range ESR 37. Phoned specialist nurse. Went up to 5 on 6th Nov. No improvement. Another blood test last week, markers the same. Spoke to specialist nurse, as I already have an appointment to see rheumatologist 7 th January she said wait until I see her staying on 5 mg. I realise m ESR is not that high and has been much higher but symptoms suggest other wise.
My symptoms- generally feel very unwell, shivery like I’m getting flu, pain/ strange feeling in head right forehead/temple, right jaw pain going back to ear which feels like I have ear ache, fatigue. I know, all GCA symptoms. I feel the same as I did 3 years ago.
I think my question is, what should I be asking my rheumatologist in January. I have really tried to get off steroids, I don’t want to be on them, they are brutal on my body and I feel ill! But what do I ask for?
I was to,d a while ago, probably a year, that once under 10 mg it’s not worth going on methotrexate- has anyone else done this? Did it help?
What about the newer drug TZC? ( that might be wrong initials) I’ve heard you need to be on this for two years but nhs will only fund 1!
Any other advice welcome.
I know while having these symptoms I need to be super invigulent of my sight and any concerns will be straight to A&E.
Sorry this is long, tried to keep it brief!