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
Written by
Den73
To view profiles and participate in discussions please or .
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.
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.
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?
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?
Here are two good videos explaining why hydroxychloroquine is so important.
Eye concerns are put in perspective and the importance of antimalarials such as hydroxychloroquine in preventing organ damage and reducing the amount of steroid needed is explained.
Hello,Your post (made 8 months ago) came to my inbox today.
I was diagnosed with Primary Sjorgren's Syndrome about 10 years ago and have been taking 200mg Hydroxychloroquine daily ever since. Annual eye checks to date show no ill effects and help my condition.
In the past year I developed RA. It's your comment about Methotrexate toxicity which caught my attention. I'm sorry to hear that this happened to you.
After resorting to a Rituximab infusion (very successfully) a year ago with 20mg Prednisolone (reduced now to 5mg) in Spring 2024 I was prescribed 15mg MTX weekly as a background drug, with Folic Acid. At the same time, the Hydroxychloroquine dose was increased to 300mg.
In my view I had a bad reaction to the MTX (mentally and physically) and stopped taking it after 6 weeks. After several weeks the distressing symptoms stopped. I continue to take 300mg Hydroxychloroquine and 5mg Prednisolone. At present all is well.
Despite my protestations, my rheumatologist is skeptical about the cause of my reaction being MTX . Her response is that it's widely used, with very few side effects. She would prescribe it to me again as she wants to prevent RA flare-ups.
Fortunately she is respectful of my wishes and and at present I'm considering Sulfasalazine.
Thank you so much Oscarmega for sharing your experience, and that there are rheumatologist who respect our feelings. It also took me months to rid my bodu of the effects of MTX and was also told many take ut without the side effects I experienced...yes well everyone is different....and it was definitely MTX as he tried to nake out I had toxicity to the Pred which he put in my final letter, yes he basically signed me off in May just to take Pred..dismissed all other forms of treatment, hasnt been a pleasant few months, have struggled, seeing a prof in Milton Keynes i February who has a good record with Sjorgens treatment.
I really appreciated your comments, so thank you for sharing.
I am placing all.my hope in this new appointment otherwise I will seek an appointment with Dr Price in Swindon as advised by many.
I’m sure your NHS trust would pay for you to see Dr Elizabeth Price in Swindon as it’s not far away from Oxford and she’s the best. I’ve travelled twice to see her privately from Scotland - where nhs doesn’t cover us to seek second opinions out of area unfortunately. I wouldn’t bother with the London Lupus Centre considering Dr Price is quite nearby. It’s only private not NHS so they wouldn’t be able to transfer you to their NHS list for treatments. Anyway she’s the best for Sjogren’s.
My Godmother (formerly a dermatologist) lives near Swindon and sees Dr Price for her GCA and has been very pleased with her treatments and care. Dr Price diagnosed me with Systemic Sclerosis as well as confirming my Sjogren’s and got me onto Mycophenolate- which has really helped me so much.
I was initially misdiagnosed with RA and tried all these medications eg Methotrexate, Sulfasalazine, Hydroxichloraquine and Azathioprine but had awful (and serious) reactions to all of them whereas Mycophenolate has been fine and I’m also on Rituximab now too. My local NHS rheumatologist is a Lupus expert and was happy to work with Dr Price but I changed to a one off private appointment at Royal Free with a scleroderma professor of world reknown last year. He has advised my local rheumatologist on my care where I live instead. Both Dr Price and this professor know each other well and it was at her suggestion that I saw him because my NHS rheumatologist isn’t expert enough in systemic sclerosis and I didn’t like the previous local rheumatologist here who supposedly is.
In my experience seeing the most respected experts in your most prevalent condition at least once is a good idea because no one is going to query their diagnosis or treatment suggestions - especially if they can contact them directly themselves through the NHS.
Thank you so much OldTed60 for your reply. I have an appointment with a prof in MK in February, who is very well known in the area and gas a good reputation, but if I am not happy with his diagnosis or willingness to help I most certainly will take your advice and seek an appointment with Dr Price. Take care.
We live in Brackley area MK hospital is literally 20 to 30 mins away nearer than the Nuffield and my very sweet GP found this rheumatologist...cant remember his name 🤦🏼 who comes highly recommended in his field.
Apologies just assuming! Milton Keynes is where the hospital is.....Nuffield is in Oxford and Brackley is in Northamptonshire all UK all in close proximity of each other. I just said to my GP the othe day wish he coukd be my rheumatologist!!! So caring!
😂it’s like being on a US/ international health forum where people put the initials of their States and their hospitals in reply to me and I’m like - whir, ping, 🧐😵💫 just trying to get my brain around my feeble knowledge of United States! I’m from London originally but have lived in eastern Scotland for 36 years so skipped a lot of England-shire for various parts of Scotland. I do know Oxford as my parents were both from there and I still have elderly relatives there - John Radcliffe and Nuffield yes although Nuffield is also a private health care group - up here at least.
Too true whats that saying...never presume🫣We have both here as far as Nuffield is concerned a private sector and also NHS and weirdly both in Oxford, I was attending the NHS Nuffield., but Milton Keynes is much nearer to me here in Brackley so will be extra happy if it works out for me. Will post my results after my visit.take care.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Pilocarpine / Eyes
How do you deal with a very dry mouth? 
Can NHS GP's order an ENA Panel?
PBC, now cirrhosis 
Sjogren's fatigue or chronic fatigue syndrome or both?
