Help

[_lisetaylorx]

If anyone lives in wales and suffers with same as me, message me please !!!

[Hidden]

Hi I also suffer from behcets I have been diagnosed by Birmingham COE for Two and half years but suffered for 15 years + . I'm in south Wales and always here if you need anyone to speak to .sending big hugs xx

[_lisetaylorx in reply to Hidden]

Thank you so much xx

[Frankieandbenny in reply to Hidden]

I am also in South Wales is there a forum for people in our area? Also how did you get diagnosed in Birmingham have you only moved to South Wales as I thought we can't access the excellence centres in Wales?

[Hidden in reply to Frankieandbenny]

Hi I was referred to Birmingham from by my rhuematologist in the Gwent , Birmingham know funds all my treatment , they are fantastic and always at the end of a phone . Contact your rhuematologist and ask for a referral. Where are you currently seen ? .if you need any help I'm always here .Big hugs x

[Frankieandbenny in reply to Hidden]

Thanks for replying so quickly my rheumatologist was based in ystrad mynach and she was fab but she's just retired 😢 Dr Piper. So not sure who I'll see next I think she said Dr Huws who is based in the Gwent I think. The problem is I think they still think there's a question mark about my Behçet's because I had ulcerative colitis and my stiffness has been associated with that as well. I am convinced I have it as I have the recurring ulcers, spots, red blur over my eyes and joint pain. They come every 4 weeks but the colchicine has so far managed to stem them off when they show themselves. She also gave me an orange asthma pump to spray directly on the ulcers which is fab. When I see my new Dr I am definitely asking if I should be referred to a centre as they are obviously specialists. What medication has worked or not worked for you? I am waiting to start humira and hope that helps my joint pain x

[Hidden in reply to Frankieandbenny]

Hi , really strange my consultant Dr Lintern as just moved to the isle of white and I am due to see Dr Gwenan Huws on the 27th of September. I suffered with a stillbirth. I was diagnosed with lupus in 2003 but Mr Pritchard in UHW left I was transferred to Dr Lintern in Neville Hall who said it easier Lupus , then my kidney failed 6 years ago taken I into Neville Hall where I was under Dr Lintern , suffering severe fatigue ,joint pains he diagnosed fibromyalgia. Saw him every year I was in severe pain , worked as a dental nurse in UHW the consultant I worked for ran blood tests and again ana positive ESR high , low platelets fought with the rhuematologist over this. In October 2016 I was in work fainted nearly every other day ,my blood sugar's went through the roof and within a week I lost my eyesight in my left eye , paid to see a private rhuematologist in Cardiff Julian Nash he took all my history he specialises in vasculitis and he diagnosed it ,he referred me back to Dr Lintern we never saw eye to eye . I was referred to Mrs Mitra opthalmologist in the Gwent and Mr Dr Joseph Neurologist they fought for me to go to Birmingham only reason I am telling you all this is because please don't be afraid to fight when you know something is wrong . I take 3g cellcept daily .cannot go below 20mg of predisilone daily . I was started on inflectra infusions but reacted ,know on Humira which I find helps I was in a wheelchair before Christmas but I can walk at the moment although I find I still flare every couple of weeks , going back to Birmingham in 2 weeks times for a new treatment plan . Keep well xx

[Frankieandbenny in reply to Hidden]

Wow you have had a terrible time! How are you still so positive? Let me know how you get on with Dr Huws. Dr Piper told me she walked on water to her, and she was amazing. I'll let you know about the humira, I'm just hoping it will work so that I can keep my job (I work as a teaching assistant), but I'm really apprehensive as when I had my colon removed they told me none of the drugs worked for me as I was drug resistant 😩. I have reactions to almost everything. Keep me updated so happy to speak to you thank you for replying x

[Hidden in reply to Frankieandbenny]

Thank you , it's nice knowing we are not alone I was a nurse for 22years finished on I'll health in July ,that's the worst part feeling so useless . But we need to keep positive. I do hope the Humira works for you don't give up with Birmingham they are amazing and so nice . Sending big hugs xx

[Frankieandbenny]

I am still regarded as possible Behçet's at the moment as newly diagnosed in May 2018. I am sure this is what I have though and am also in South Wales. I'm 41 and only got ill 2 years ago and was told I had ulcerative colitis. 18 months taking steroids and various other drugs that did nothing to make my symptoms better I ended up having my large colon removed and having a temporary stoma bag. I felt better straight away but 8 weeks after I started getting ill again. First was an irritating cough, then stiff joints and then ulcers in mouth and genital area, and spots on my legs. I went back and fore various dr's but no-one wanted to put my symptoms together. I ended up having another surgery in April as my bowels had twisted and when I was discharged I was referred to a rheumatologist who told me she thought I had Behçet's. I had already googled my symptoms to death and had thought this myself so the relief when she said it was overwhelming. I am currently waiting to start humira injections and wondered if you have taken this yet and if so how successful is it in regards to joint pain? as my joint pain is excruciating. Also is there a Wales forum for sufferers I can join?