lupus clinics in cheshire

[scoobydoo1]

can anyone tell me of any specialist lupus centres or clinics in cheshire, or in the warrington area?

[Hidden]

Hi,

Professor Bruce has a clinic in Manchester, I havent seen him myslf but I have heard that he is amazing.

Also Dr Dubois at Liverpool has a special interest in Lupus.

xx

[roobarb]

Hi scoobydo, I live in this area & am looking for a lupus specialist too. I've seen 4 different locum rheumatologists in the past year, & don't feel I am getting any continuity of care.

There have been great reports on here about Dr Bruce at Manchester. He is speaking at the Lupus UK AGM in Chester, 12th may. Tickets only £15 incl lunch, plug plug!

Also, one of the girls at my support group has recently seen a Dr Dubois at Liverpool who she said was really nice. I assume this was Liverpool Royal, but can check this for you.

Some people in my group have also traveled to St Thomas hospital in London. This seems to be the place for 'gold standard' lupus treatment. But it's a long way to go if you're poorly.

My support group have coffee & chat meetings at Chester Zoo on the first Sat of every month, next one tomorrow. It would be great if you were near enough, & well enough to come along, then you could hear people's experiences of these specialists first hand.

Best wishes. X

[roobarb in reply to roobarb]

PS, just realised we've chatted before about hep b. What a small world! You don't need to be a member of lupus UK, or diagnosed with lupus to attend the meetings. Lupus UK is about supporting people on the road to diagnosis, as well as afterwards. In my experience it can be a long & rocky road to get a diagnosis, mine was 9 years. It would be lovely to see you if you can make it. X

[Mrsoliver in reply to roobarb]

Hi. Just read about the support group. I have just been diagnosed and am trying to find a group. I live in Manchester. Would It be ok for me to come to your group please?

[Neverforget]

Hi Scoobydoo and Roobarb, I live in the area to. I have just been disowned by my Rheumy at Halton stating that she has done everything she can or me even though out of three appointments she only actually spoke to me and examined me on my first appointment. She has retracted everything she said to me in a recent phone call following my request for information regarding my illness so that I could take it to my OT assessment. She denied seeing my rash or saying that I had Connective Tissue Auto Immune Disease. My GP is not very happy as my Rheumy sent her a letter in September following my admission to Warrington Hospital stating that my rash looked like Mild Lupus. A further letter to my GP in Dec stated that my diagnosis is Connective Tissue Disease with possible overlap SLE.

In 204 I was very unwell and was admitted into Halton Hospital. In outpatient a couple of mint following my discharge I was informed that all of my blood work came back positive for Lupus. I even had antiphospholipds and was placed on aspirin. The blood tests also showed that I had been in contact with parvovirus. I have done some research and have found that Parvovirus can be a trigger for SLE or can actually show in an initial flare of SLE as the antibodies to parvorius may not be working properly.

My rheumyn has advised my GP to refer me to Dr Moot - Liverpool or Dr Bruce - Manchester for second opinion.

I am gong to ask to be referred to Dr Bruce.

I have had similar problems since 2004 and was really unwell between April - September 2012 until I received treatment.

I have been on Plaquenil - but had a reaction, I was on Methotrexate for three months - this really helped but I gained weight and was sick every weekend after taking it and was also place on Methophenolate - unfortunately this also caused side effects and I was only on it for three days.

I hit crisis three weeks ago as I had not been on any medication since 20th December and had to go back on steroids for a couple of weeks as a result. I now feel like my body is a ticking time bomb waiting to go off.

I have only been given a supply of steroids for me to combat any flares until I see somebody who may have a clue what is gong on with my body

I need to know either way as to what I may or may not have.

I would also love to attend the support group in Chester. Can you just turn up at Chester Zoo. Is the group in Chester the nearest one to Runcorn and Warrington?

Best wishes x x x x

[roobarb in reply to Neverforget]

What an awful time you've had neverforget. I hope you can get to see Dr Bruce very soon. Yes you can just turn up at the zoo, I can arrange to meet you so you don't have to walk in on your own, if you like. But everyone is lovely & will make you very welcome.There may be other meetings nearer you. If you join the 'north west lupus group' on Facebook, there is lots of info about what's going on in our area there. X

[Neverforget]

Hi Roobarb, thank you for your response. I have sent a request to join North West Lupus Group on facebook. I am also a member of Lupus UK. I look forward to hopefully meeting up with you soon. Best wishes Anita x x x x

[scoobydoo1]

Hi guys, neverforget know how you feel, im in a flare at the moment, even though not officially diagnosed family history, illness history/symptoms all there, luckily I am in a good position as iam an emergency nurse, my colleagues have seen a lot more of me over the last 7 months due to admissions lol, last one was last night where chest pain/ spasms and big rise in blood pressure.

sorry for the bad experience with the rhumy, nhs works but it does take time.. long time so keep going and stay positive. massive thanks to the forum and the website as even though im in health care there is not a lot of education about lupus in comparison with other conditions. I am using my experiences to educate in the department, its only because of the guys on here that theres light at the end of the tunnel for me, will be seing you soon scooby.