rheumy says i dont need to see him no more????

[kittykat68]

hi all my 2nd rheumy states i do not need to see him any more, after he wrote in the same letter that i now have fibro along with lupus/sjyorns/raynaulds ,im stumped , i see my dermy once every 6 months and thoracic meds (emphazema) once every 3 months , im kinda like confused.com , i asked for ppls advice on here as i wasnt getting on with my rheumy and was advice to get a second opinion well i did but how was i supposed to know they were friends and yes everyone i speak to says how unproffessional blah blah but clearly it hasnt helped me as yes the 2nd rhemy did more test and stated that I HAVE SOFT TISSUE RHUEMatism so having googled this basically he has confirmed what i have believed for 2 years also he said i have systemic lupus when ive always been told i have subacutanous lupus with a crossover of systemic symptons so when did my disease change , im really confused

[pattismith]

Try and get recommendations, of different Consultants and get a 2nd opinion, if the 2nd Dr was a friend or not of the first dr , he is obviously just as incompetent as the first !!! so you are better off without either of them. Don't give up , there are good Consultants out there it's just a case of finding them, good luck - keep fighting it will be worth it in the end xx

[kittykat68]

thanks patti x

[Melinda]

I'd been seeing a rheumatologist for years for SLE. I was diagnosed with subacute cutaneous lupus a few years ago. I was told that i would more or less be under the dermatologist from then on, although i still go to the rheumatologist. The dermatologist wanted me to stop taking hydroxychloroquine during the winter months. I had to point out to her that i had been taking it for years for my joints. I would seize up without it. I wouldn't be able to move at all.

Just after being diagnosed with SCLE, one of the doctors said that SCLE refers to the whole thing. I'm pretty sure he is wrong about this. I read you can have SCLE without having the SLE. SCLE is a halfway house to SLE. 50% of people with SCLE also have SLE. Like you kittykat i'm confused. Where did my SLE go to. My joints still bloody hurt.

[Chapter in reply to Melinda]

Melinda, the way my Rheumi explained to me is that it is SCLE - which involves joints, muscles, skin, etc. - until it starts affecting your organs and then it is SLE.

[Melinda in reply to Chapter]

I was diagnosed with SLE eight years before SCLE appeared. I was told because i was older it would be milder. I was also diagnosed with sjogrens and an overlap with RA. I met the criteria for SLE. I also have the butterfly rash and positive ANAs. SCLE is another manifestation of lupus, all be it a benign one. SLE can also be mild and not attack your organs.

From everything i've read, you can have SCLE without having SLE, although you may eventually develop SLE. I don't have a lot of faith in the doctor who told me SCLE is the whole thing. He once told my daughter who has OCD which causes anxiety, to learn to love and embrace her anxiety. He told her this at the same time he refused her medication.

[overnighthearingloss]

Whilst i am unable to comment on your specific case, my suspicion is that this approach may all be related to the drive towards GP centred care.

[kittykat68 in reply to overnighthearingloss]

I suspected this and spoke to my gp yesterday,however she has advised me to write to nhs trust as she wont have anything 2 do with metho and hydrox, but thanx for answering

[tintin49]

drs are so yender hearted. my rheumy would not see me as I asked for a second oipinion childish to be honest