Struggling

[seath1972]

Hi guys, diagnosed 19 years ago. Still struggling with it. Doctor won't supply my mercaptopurine as it's so expensive. Coping on colchicine alone. Sorry it's a miserable status but feeling very low xx

[LindsG59]

This condition can drag you down. I've had some dark days too. Perhaps the Behcets Society could give you advice on how to get what you need? Don't think you're alone out there, I've had fantastic support from this forum!

[seath1972 in reply to LindsG59]

Thankyou for your help.

[Hidden]

Are you under one of the Behcet's clinical of clinical of excellence if so you may get help there, if not talk to you MP amd let them know what has happend

[seath1972 in reply to Hidden]

Thanks for your reply. I was under guys and St. Thomas hospital with professor fortune and doctor shirlaw. I live in fareham and had to travel to London for treatment which is costly. Will definitely try and speak to my MP.

[Hidden in reply to seath1972]

Have a look at this,it may be usefull

How to get a referral to the Behçet’s Centres of

Excellence

Where can I be referred to?

It’s up to you. Choose which Centre would be most convenient for you –

Birmingham, Liverpool or London.

Who can refer me?

Any medical practitioner who knows about your Behçet’s disease can refer

you: for example, your GP, hospital consultant or dentist.

Do I need to have a confirmed diagnosis of Behçet’s disease?

No. We accept referrals for those with possible or probable Behçet’s disease

as well as confirmed Behçet’s disease.

Why should I be referred?

Of course, it’s your choice to be referred or not. You may not wish to be

referred if your Behçet’s disease is already well controlled, or if you do not

want to travel to a Behçet’s Centre.

However, you may wish to be referred if you feel your Behçet’s disease is not

well controlled or that you would benefit from a second opinion or the

multidisciplinary approach of our clinics, as these should reduce the number

of appointments you attend for your Behçet’s disease.

How do I go about getting a referral?

At your appointment with your medical practitioner, explain that you would like

to be referred to the Behçet’s Centre. You might like to:

- explain that we offer multidisciplinary clinics with doctors from different

specialties who are all experienced in treating people with Behçet’s

disease

- explain that the service is nationally commissioned, so there is no cost

to the GP

- orientate the doctor to our website (behcets.nhs.uk).

They will be familiar with writing referrals but may wish to:

- say that they would appreciate our support in the management of your

Behçet’s disease

- explain the way Behçet’s disease affects you (for example, your eyes,

mouth, skin, joints)

- say what treatment you have already been on and its effect.

Referral details for each clinic

Birmingham

Dr D. Situnayake

Sheldon Block

Birmingham and Midland Eye Centre

City Hospital

Dudley Road

Birmingham

B18 7Q8

Email: [e-mail]

Fax: [phone]

Liverpool

Professor R. J. Moots

National Behcet’s Centre

University Hospital Aintree

Lower Lane

Liverpool

L8 7AL

Email: [e-mail]

Fax: [phone]

London

Professor F. Fortune

Behçet’s Centre Administration

Dental Hospital,

The Royal London Hospital,

Turner Street,

Whitechapel

London

E1 1BB

Email: [e-mail]

Fax: [phone]

Patients outside of the NHS England area

For reasons related to funding, the Behçet’s Centres are commissioned for

people from England. If you live outside England, your doctor will need to gain

approval from your NHS (for example NHS Scotland, Wales or Northern

[seath1972]

Thankyou so much for all this helpful info. Really appreciate your help.

[sam0511]

I am on a Azathioprine - saw consultant yesterday - no inflammation markers. It worked for me. Ask the question - see if you can try it.

[seath1972 in reply to sam0511]

Tried Azathioprine years ago. Didn't work for me. Thanks for your help x

[sam0511 in reply to seath1972]

I discussed this with consultant yesterday - if Aza stops working for me, there is plenty more to try. Have you asked about other treatment with a rheumatologist ?

[seath1972]

I do have a rheumatologist. He is not very helpful at all. He won't prescribe my mercaptopurine due to the cost. I was doing very well on mercaptopurine. I have bipolar and ptsd and he seems to think my mental health is making my bechets worse. The only medication he will give me is colchicine.

[CrystalAngel1 in reply to seath1972]

That seems grossly unfair to me. Mercaptapurine is very similar to Azathioprine as it's what Azathioprine is broken down to. I dont see that in England any dr can refuse to prescribe a medication based on cost. I agree you need to be seen by Prof Fortune again. You would be entitled to claim help with travel expenses if you are on low income etc. Who and why was the mercaptapurine stopped? Best of luck. Keep.fighting. you will get there. X

[seath1972 in reply to CrystalAngel1]

Thankyou so much for your reply. My doctors are a small practice and I was told they couldn't prescribe it to me as it comes out of there budget. I have just been referred back to professor fortune so fingers crossed I get to see her soon x

[CrystalAngel1 in reply to seath1972]

I still dont think they can refuse to prescribe a medically necessary drug. I'm on a huge list of medications, some are costly with cheaper alternatives. I'm with a tiny GP practice ( 1 partner and 3 regular locums) but they have never questioned me having monthly bloods (initially weekly) or any of my medications. If they did, I would want it in writing as to why and I'd make a formal complaint. These things used to be an issue when practices were fundholding but now the CCGs have more responsibility this shouldn't happen. Good luck with Prof Fortune, she's amazing, although I understand the wait to be seen is around 3 months. X

[seath1972 in reply to CrystalAngel1]

Thankyou for the info. Ihave waited a long time already so I guess 3 months is fine.x