Rheumatologist change

[Den73]

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

[dg70]

If you're not too far from swindon, dr Elizabeth Price, an expert in sjogrens syndrome is at great Western Hospital. You could not get better and she's on your doorstep. You can see her privately if your gp won't refer you. You get a thorough check up for about £150, I doubt any other rheumy after that would doubt her recommendations after seeing her. You may need a gp letter even when private but they won't care if your paying. She sees people from all over the country. Couldn't get a better second opinion. Ring the shalbourne suite at great Western Hospital and ask for her private secretary if you want to see her privately. They will then advise you on what to do. She gets booked up so it may still be a couple of months before you get to see her. Lets hope your close enough to see her on the nhs. Good luck.

[Den73 in reply to dg70]

Thank you dg70 for your reply.Western Hospital is about hour and a half from me, so not sure if it would be covered by NHS, but will enquire.

I will explore my options there she dounds like the person I need to see.

[dg70 in reply to Den73]

It would be money well spent if you can afford it. She is the one of the country's leading experts and charges a reasonable fee privately. Alternatively you could get on a train and go to the london lupus centre, again private, but they are experts too in sjogrens as well as lupus. It's at london bridge. I had to go private for my diagnosis and it was the best money ever spent. They check everything out and prescribe what you need which then a gp can keep prescribing from then on. It gives you time to research an autoimmune specialist rheumatologist on the nhs nearer to you. Again it would be a brave rheumatologist who overturns a leading expert in autoimmune after that.

[Den73 in reply to dg70]

Thank you dg70, thats invaluable information, as I wondered about future treatments. Definitely going to look into it. Xx

[Chris21]

Both myself and daughter are on hydroxychloroquine, i have lupus as well as sjogrens, my daughter has sjogrens. we see the same rheumatologist. i would have thought this would be the first drug to try? The only thing you would need if taking this, is to get your eyes checked as it can cause problems, so far neither of us have had any problems and find hydroxychloroquine helps damp down pain. make sure the GP has put it on your record about toxicity to MTX, that way it shouldnt be prescribed again.

i cant help with different consultant as im not near oxford. its your right to request a second opinion if you want to see a different consultant, have you asked the GP if they could trial you on hydroxychloroquine?

[Den73 in reply to Chris21]

Thank you Chris 21 for your very welcome information, my rheumatologist wont even discuss hydroxychloroquine. I have another appointment with him on the 8th May and if he insists on Methatrexate as he has in the past visits, I will end the consult and continue on my way.

I did read that eye issues can result, I have requested an appointmentbwith the opthomologist but the nearest slot is only in August.

I do have a an issue with my eyes, but that is because of the Sjorgens I take it. Burny and itchy and very dry.

I have a hole in my macular in my right eye but apparently its not a concern the optician did explain it happens to quite a few people its not macular disease, so shouldnt be a problem?

Thank you for your advice, much appreciated. Xx

[StriatedCaracara]

Here is a post I did on the lupus HU forum on hydroxychloroquine: healthunlocked.com/lupusuk/...