The Australian Sjögren's Syndrome Association

Rheumatologist told me all in my head

I have been on methotrexate for over a year due to RA and it also helps alleviate my SS symptoms. As I live in a developing country this has been managed by a team of doctor friends who are not specialists. I went to my first rheumatologist as I figured I needed someone to oversee this who was experienced even though I am doing really well and have few issues these days (while on methotrexate). As nothing showed up on the tests she said it was all psychosomatic. This is a doctor in Malayasia and I hope no one else gets this treatment!

5 Replies

I am not surprised ! I get the feeling that quite a few of the Medical profession feel this way. I had a Dr say it won't kill you anyhow! Not a lot is known and the fact that it comes and goes with such different symptoms makes us look neurotic. Take heart you know your body.


Unfortunately many more have been and still are being told it is in their heads. rheumatology has not figured out how to fix it so they are stumped and become complacent with no answers from frustration. No excuse for it - but the field is so complex they try all sorts of meds that work for some and not others. The patient is frazzled - the doc is frustrated - and it comes to this end. doesn't seem to matter what country you live in - it happens all over. I was Diagnosed with Lupus for 11 years until I moved and then 3 years later I was told no Lupus - Sjogrens. symptoms the same but methotrexate did not help me at all. So I am now in a Study for Pfizer labs for the new med for RA called Xeljanz at a higher dose than is available at the Pharmacy. That has helped me with the joint pain and the dry eyes and skin but not the mouth. I started it 4+1/2 years ago and my study will last until 2016/2017 and then I have two more FREE years of meds. It costs $2.400. A month in the USA - I can never afford that. They have $1000. Coupons to cut the costs - I still could not afford it. The medical folks need to get serious and take care of their patients and it seems the patients need to jump up and down to get their attention. I wonder how anything gets done the way it goes. Seems there should be a concerted effort for research to be moving faster and for docs to realize what their jobs are supposed to be. sorry for your troubles - keep looking for good help - don't give in or up - you will find a way even though it is a bumpy ride.

fondly, Diane ;-)


Thanks for your responses. I am lucky as my husband is a doctor and knows what I live with and has helped me enormously. I have been looking at the literature and try to keep up with latest research but as there are so few of us it is hard for research to include large numbers. Will be interested in the results of the trial you are in.


Hi, I have primary sjogrens and hypothyroid. I live in the UK and have to say the treatment I receive for Sjogrens is much better than the thyroid trouble. When I started the dry mouth was my worst problem, still is but much better. I had to suggest to GP that I had Sjogrens but to be fair he was willing to test and seemed pleased that I was proved right.

When I started I was drinking olive oil out of the bottle but it didn't help. So I am now on Salagen (pilocarpine) and plaquenil (hydroxichloraquine ) plus ibuprofen. I also had lots of problem with chest pain which was eventually diagnosed as reflux oesophagitis so I also take lansaprazole permanently which is helping. I still have dry mouth and eyes but it's much better than without meds.

Finally a couple of years I took part in a double blind trial with Rituximab which is already used very successfully in UK for RA. I cannot be sure if I got the real stuff but I had a miraculous recovery for a few months. The study TRACTISS study has just finished so they are now analysing the data. As you have RA it might work for you. When I received the rituximab I also received a big dose of steroids so it could have been that. Although it seems to last longer than steroids usually do.


Thanks for all the suggestions. I am pretty well these days and the methotrexate really works well with the RA and other symptoms. The reflus oesophagitis is an interesting diagnosis for the chest pain.


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