Behcets Center of excellence

[Soph19]

About a month ago I had quite a bad flare which took me to the doctors and resulted in being signed off work for 2 weeks. I see a rheumatologist privately but after my diagnoses I felt like giving up as I didn't feel like he knew to much about the condition and just felt like no one could help me so I asked my GP for a referral to the behcets Center of excellence at the royal free hospital London. My GP said I had to be referred to a rheumatologist before hand (nhs) and they would have to decide to refer me if they couldn't find anything to help me. I've had so many test and tried so many medications which haven't helped me what so ever so I'm thinking what can they do that the doctor ive already seen hasn't done? I've had to wait 14 weeks for the appointment and I've still got another 7 weeks to go yet I don't know what to do. I feel so alone I feel like I'm not getting anywhere! My pain is just ridiculous and just genuinely feeling unwell. I've started getting bad anxiety where it's affecting work and social life. I haven't felt myself for years I don't remember a normal life without this. What can I do!! I'm so sick of living like it.

[Hidden]

Your GP is misinformed, you don't need a referral to a Rheumatologist before being referred to a Behcets Centre of Excellence as they are nationally funded and don't cost your GP anything for a referral. Unfortunately I believe their waiting lists are currently around 12 weeks too.

You don't say what medications you have tried and what symptoms you have. As Behcets is a rare, complex disease the best chance of getting effective treatment is to see a Consultant who has knowledge of and experience in treating it. Does the Rheumatologist you are waiting to see have patients with Behcets?

[Soph19 in reply to Hidden]

Thank you for your reply! I had no idea that I didn't need a rheumatologist referral!! I'm currently taking no medication because it's never helped all my main symptoms. When I didn't have a diagnoses of behcets I'd been taking a few different meds but can only remember the following.. butram patches which were amazing but couldn't function so they were a no no, amitriptyline for pain and sleep for the fibromyalgia that was amazing but eventually that stopped working! I've taken gabapentin, rubbish. Once did diagnosed I was taking Colchicine which wasn't good and predisolone which minimised the ulcers but nothing else.

[Hidden in reply to Soph19]

There are lots of medications used to treat Behcets, colchicine and Prednislone are only 2 of them.

Unfortunately you can't self refer to the C of E, you need a formal referral from a Dr or dentist. The way round it is to inform your GP about the referrals, get them to document your request in your medical notes and then ask them for the reason for refusing your request in writing. If they still refuse then make a formal complaint to the practice manager.

[B130859]

Hi

Your GP has informed you wrongly he or she can refer you to any of the 3 centres doesn't have to be a rhumatologist you can even apply yourself in there website hope things improve for you soon x

behcets.org.uk/london-centr...

[Soph19 in reply to B130859]

Thank you for your reply! I can not believe that my GP knows how much I'm struggling! I'll have a look at there website thank you!!

[UKADMIN Partner Behcet's Syndrome Society]

Hi Soph19 all the replies above are correct and your GP should refer you. Also, your private Consultant Rheumatologist should be able to refer you too. He/she could also contact the centre to ask what treatments they could put you on whilst waiting for the appointment. Ring the secretary in the first instance. Print out some of our leaflets here too and take to your GP so that they have all the correct information about Behcets. behcets.org.uk/information-...

Let us know how you get on. Best wishes to you and good luck.

[distanttree]

Keep a food diary.

Eat alcaline foods.

Read posts about the effect of foods on this condition.

Good luck..my doc just doesn't help..

But..changing what I eat has helped....a lot.