Any ideas to help please: Hi all haven't been on... - Behçet's UK

Behçet's UK

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Any ideas to help please

bobthomas1962 profile image
6 Replies

Hi all haven't been on for a while I've just come off a clinical trial in conjunction with Liverpool betchet center at the Freeman hospital Newcastle I was on infleximab unfortunately it only worked for a couple of months been really ill ulcers never go last week I had ,20+and they were large also get them down below been referred to a eurologist my rehumtologist discussed me with a professor and others at a European conference a few weeks ago on a triple mouth wash and trying infleximab again but upping the dose and frequency to,4weekly but have to wait in my bone marrow biopsy t d cell not good neutrophils poor and feel exhausted all the time on collicine 3daily prednisolone 25mg daily for years any one got any ideas it's really getting me down now

6 Replies
AusBehcets profile image

Have you been tested for Lyme disease? Just a thought

bobthomas1962 profile image
bobthomas1962 in reply to AusBehcets

Been tested for that a numerous diseases this betchets is horrible had it now 7 years gets me down at times but try to enjoy and make the most of the good times

Blearyeyed profile image

Bob , first have my wishes for an end the symptoms you are having.

You are clearly, tired of the pain and the lack of success with medications so far and feeling down like many of us here whom have suffered for a long time, but you have made the right move by coming back on the site not just for practical help but moral support, keep talking to the people on here to help give that ear to listen and strength you need

Are you receiving all of your recommendations in terms of medication and dose from Liverpool CoE and Professor Moots or is it being chosen by the different people you are seeing in Newcastle?

I would suggest you ring the Liverpool helpline with whichever group you are with , they will be placed best to give the quickest help and make changes to your medication that could help the most. They may also offer to see you in Liverpool for further tests to speed up finding the care plan that will best suit you.

As well as the ulcers and fatigue , what are you other symptoms and what do you know makes them worse, if you could give everyone on this site this info they may be able to give you more detailed suggestions of what they do to help speed up their recovery or get relief at home.

What sort of diet are you eating at the moment, have you had any vitamin and calcium tests, it is highly unlikely that you are up to work or exercise at the moment but if you are able , what are you doing and how are you sleeping?

Please write back and let us help as much as we can

bobthomas1962 profile image
bobthomas1962 in reply to Blearyeyed

My consultant is in contact with professor moots my diet is poor lost 11kilos since Feb I have very bad genital ulcers having to go to a eurologist in July sooner if possible on loads of meds coloccinne infleximab will start again if my bone marrow biopsy is ok fourth one I've had but red cells ect not god initially they thought I had mylodysplasia I saw a dental professor about 4 years ago and soon as he saw my mouth ulcers he said I had bethets I do know it takes a while to diagnose it but I have a great consultant now lots of faith in her I don't work know I was a nurse for 37 years and had to take I'll health retirement this is a really horrible illness I get no respite from ulcers on a triple mouth wash that Liverpool have recommended but not working my consultant thinks I'm quite resistant to meds my infleximab man intialy worked for about 3 months then had no effect hope the higher dose and having it more often helps if I can have it but may need chemotherapy have to eait

bobthomas1962 profile image

I was also part of that clinical trial that has been happening

najeebo profile image

A carnivore diet pretty much resolved 99% of my symptoms.

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