Good morning, having major issues with my present rheumatologist, he seems very disinterested in me as a patient. Was diagnosed with Sjorgens, PMS and GCA in August 2023, no treatment as such for any of the disorders except 60mg Pred. Then 2 months ago without discussing any information about MTX he put me on a dose of 20mg every week to which I had a very bad reaction, ended up being diagnosed with MTX toxicity, very bad reaction which lasted for about a month.
Went back to the rheumatologist for another appointment, he never enquired as to the side effects i suffered, no advice, almost as if it was a subject he was not prepared to go into.
He never enquired if my symptoms of Sjorgens had got worse or the same, he was mire interested in ne coming off Pred, which I am decreasing and down to 20mg, doing it slowly and managing very well this time.
He then said I must go back onto 20mg of MTX without even knowing the fact about the extreme toxicity. So I told him and his reply was its not the MTX its the steroids you reacted to....amazing how when I stopped the MTX, only took the one dose, I was back to 'normal' steroid do make one feel unwell but not what I experienced, anyway I relented and said ok I will try one more time but not 20mg will take 10mg and the exact same thing happened, only just getting over another bout of really being very unwell after 2 weeks and only one dose.
I asked him about hydroxychloroquine as I have friends who are on this med and they are coping well, has anyone taken this med on the group? I would really appreciate your input.
Also I am seeing my GP on the 7th June and am going to request a change of rheumatologist, I realuse this is a long road and would like a rheumatologist who is interested in my well being and state of mind.
I live in the Oxford area, again would appreciate maybe a recommendation of a rheumatologist I can change to.
Appreciate this group as well as PMR and GCA the advice that has been shared has been invaluable to me, so thank you everyone.
Thank you in advance for advice. Xx