Misti31 about lupus flare up ...

[Misti31]

Hi I have just joined this group ... I have had lupus for 25 years and am only now having my 1st real bad flare up... which is a bit unsettling. I have been to see rheumatologist this month and he told me after 15minutes of prodding that I have fibromyalgia ... I think that this is wrong and that it is my lupus. It can take people ages to be diagnosed with fibro and there is no actual test to prove it ... I am now aching all over and am finding it difficult to move about. I am gonna go to see my doc to ask for steroids. Am wondering if there are specialists in hospitals that deal with lupus specifically because I could do with advice on what meds I need to go on at the moment xxx

[Paul_Howard Partner LUPUS UK]

Hi Misti31 ,

Lupus would generally be managed by rheumatologists, but there are certainly sub-specialisms within rheumatology. We know quite a few rheumatologists with a specialist interest in lupus. If you'd like to let me know whereabouts you are I can provide you with information about any we may know nearby.

[Misti31 in reply to Paul_Howard]

Hi Paul.... I live in Darwen, Lancashire near Blackburn and Bolton. Originally I was under skin specialist Dr Yates in Blackburn infirmary because of my butterfly rash and she was amazing. She looked after me for years until I went totally into remission, guess I was very lucky really, went back to work and have lived normally for over 20 years no problems.

Bit of a shocker for me with it suddenly popping back up. After so long I am unsure who I'm supposed to see that understands lupus.... not sure my doc is too clued up and certainly don't think rheumatologist is right saying I've got fibromyalgia after just 15 minutes of prodding my joints.

I would really appreciate your advice. Thank you very much for taking an interest xxxxx

[Paul_Howard Partner LUPUS UK in reply to Misti31]

Hi Misti31 ,

Your nearest specialist centre for lupus is probably the Kellgren Centre for Rheumatology at Manchester Royal Infirmary, which is actually a LUPUS UK Centre of Excellence. You can read more about it at lupusuk.org.uk/centres-of-e...

If you are not satisfied with the suggested diagnosis and treatment plan from your current rheumatologist then I would definitely recommend asking your GP to refer you to a lupus specialist for a second opinion.

[Misti31 in reply to Paul_Howard]

Thank you hon ... have been docs got steroids and hydroxychloroquin ... Will try these ... if don't work will try the fibro meds and if these don't work then will ask my doc to refer me to Kellgren Centre ... Thank you so much for your advice xxx

[Paul_Howard Partner LUPUS UK in reply to Misti31]

Good luck with the treatments. Remember that hydroxychloroquine can take around 3-6 months to exert its effect, so you unfortunately have to be quite patient.

[Misti31]

Hi Louise thank you .... Yeah this is what I was thinking about a month and half ago I was put on a week of high dose steroids and felt like they worked. Am now back on diclofenac which hardly touches the pain. Certainly dont think rheumatologist is right saying I've got fibromyalgia after just 15minutes of prodding. Am gonna go back to doc on wed and ask for more steroids even though I'm not really wanting to go back on them because of the bloat and weight they gave me years ago.

Thank you so much for taking the time to reply to my post. Stay well. Xxxx

[Misti31]

Thank you hon .... Will get it sorted ... take care love esti x