Hi all, I would really like to be referred to a different hospital as I feel my one is not monitoring my lupus, or med's, or blood's close.

[addai]

I have been suffering all kinds of complaints and yet I have been ignored, finding out that I have diabetes was the last straw, I had complaind of feeling unwell, yet I was not checked over until I took myself to A/E to find out my blood sugar levels was just over 40. Now I have lost all faith in my rheumy. Can anyone recommend St. Thomas or UCH in Mortimer street? Thanks.

[Tigerlily4]

I would recommend St. Thomas's over UCH.

[addai]

Yes, thanks for that, I had a bad experience with UCH about 10yrs ago, but under a different consultant, but I'm hoping they are not all the same over there. Out of interest, why not UCH for you?

PS. St. Thomas is alot further for me to travel, but I do want the best care.

[Tigerlily4]

Well, mainly because St. Thomas's unit is seen as world class. To be honest I've never heard anything about treatment at UCH. That said, my Rheumatologist trained at the lupus clinic at the Middlesex and neither have I ever heard anyone mention that (if, in fact, it still exists).

[goldstone183]

I have been referred to the Professor at UCLH who specialises in autoimmune rheumatoid stuff.

I should introduce myself first. I have myasthenia gravis, Hashimoto's and coeliac disease. I am under a brilliant consultant at the National Neurological Hospital which is part of the same group. I am on prednisolone, mycophenolate mofetil and loads of other stuff-mostly for the side effects of the side effects!!

I also have IVIG infusions every 6 weeks.

much to my alarm I have developed a classic lupus photosensitive rash -including my lips plus dry eyes, dry mouth and joint pain over the past few months.

I really thought it would be impossible to develop another AI disease given the amount of immunosuppression I am on but my doctors all think it is.

anyway 2 questions really. first of all has anyone developed an AI disease whilst on immune suppression and secondly I keep hearing the Lupus clinic is marvellous at St Thomas'. however it is logical for me to go to a UCL hospital as all my notes are accessible on the same system. I wondered if anyone has direct experience of UCLH?

hoping to be a transient visitor to your community!

[addai]

Hi Tigerlilly 4, the care at UCH was good but, the proff. I was under at that time felt I would be a patient for their clinical trials on mycophenolate, which was quite new at that time. My problem with this was the fact that my lupus was under control, I tried to refuse changing my meds for as long as I could, but after ayear of refusing him , he told me it was the only way he could help me. But after every 2months that I saw him he would double the dosage to see how well I tolerated it, which made me feel like a guinea pig, so I asked to be referred.

[goldstone183]

As I am running out of options (been on methotrexate and azathioprine) I would be up for trying something new!

Is rituximab used for lupus?

[addai]

Hi Goldstone 183, I don't have any idea of rituximab, I am on cellcept (Mm.), prednisolone, as well as some other drugs, I only look for my meds' to come down in quantity. Sorry I couldn't help.

[Hidden]

Hi goldstone183,

Rituximab is used widely to treat vasculitis, especially when ANCA positive. I think it is used in Lupus but only in severe cases with end organ damage ( ie renal ) as it is so expensive.