[plb]

I was diagnosed about 15 years ago with S.L.E and have had great care from a consultant at my hospital, but recently my consultant has leaft and has been replaced by another consultant.

I had an appointment with the new consultant who did not appear to have read my medical notes and after less tha 30 minutes with him said he did not think I have S.L.E and is wanting to reduce my medications and told me to take paracetamol for an pain.

I am so confused now. I have been treated for so long for lupus and now told i don't have it but did not say what his diagnosis is.

I have had negative ana tests but had many tests over the years and was diagnosed due to the symptoms etc. This new consultant said that is all the past.

Can anyone help, has anyone experienced the same problems.

 

[cath]

Hi plb,

Welcome to the forum.

Where do you live? I am appaled by the consultant's decision. After seeing you once he wants to risk your health by stopping meds that have been keeping you relatively Ok for the last 15 years!!??:hissy::tantrum::screamin::yell:.

What meds are you one by the way?
And how are your symptoms at the moment?

Most rheumatologists prefer to keep their patients on at least plaquenil long term, symptoms or no symptoms.

Unless you can have firm words with thes rheumy and insist that your diagnosis and treatment stay the same, I'd seriously search for a different rheumy. After all keeping the old one isn't an option. If you have to have a new one then at least let is be a decent one

Let us know how you are getting on?

X C X

 

[Maia]

Before I comment much further, I guess I'd want to know what medications this new person wants you off... and what the new diagnosis would be & what treatment is still being offered for what symptoms you still have (& have had in the past).

For instance... if the new diagnosis might be UCTD (Undifferentiated Connective Tissue Disease) & you have primarily suffered from joint pain, fatigue and rashes but you will remain on Plaquenil & he wants to try to take you off Imuran and heavier duty pain medications then I might not have a big issue with this doctor after all.

But if you've suffered from kidney issues, or biopsy proven lupus and the other usual lupus symptoms but this doctor wants to take you off all disease modifying medication and say you have fibro and that's it... then I'd have a big problem with this doctor and would say to run fast to another doctor if at all possible.

 

[plb]

thanks for your replys.
I hbeen on different medications but changes made due to blood results of effects of the mediction. I have been on hydroxicloriquine, azathaprine, methodtrexte (this was the best of help but due to blood results could not go back on it) now on cyclosporin. Also on prednisolone. I have had excellent care for 15 years but this new consultand did not want to listen just said he will reduce all medication and I have psoriasis and to take paracetamol for the pain, reduce steroids but gave me a prescription for non coated and I know this could affect my stomach as I am also on warfarin. I have contacted the trust at the hospital who is now transfering me to another doctor at the hospital and in the meantime my gp is there for some help.

I have had a bad time in the past with my condition but on the present medication am quite stable with some flares. Still have joint pain, nausea etc and have high LFT's. I could go on and on and bore you but I fell so helpless and was not sure what to do the stress of it all was getting to me so thought I would put this on to see if anyone else had been through the same. Any advise would be greaatly appreciated.

 

[Maia]

It sounds like you are doing the right things... and I hope you can get into a better rheumy soon. You can post in the "Find a Doctor" section of the website or do a search of the site for a doctor near a major town near you too that others can personally recommend.

Good luck - & I'm glad your GP will continue to help you until you can find a good rheumy.