clinical trial

[bobthomas1962]

I was invited to part in a clinical trial I had my first infusion 2 weeks ago next one tomorrow early signs look promising my ulcers have been away about a week first time ive been ulcer free for that length of time for over a year other symptons are pretty much the same but its very early days so time will tell I see that others here appear to be doing trials as well so hopefully it can benefit all of us in the long run

[Barry71]

What drug are they giving you?

[bobthomas1962 in reply to Barry71]

Infleximab

[Dan_NY]

I am curious as well. Would you happen to have a link to the clinical trial study? I am looking on this link:

clinicaltrials.gov/

[bobthomas1962 in reply to Dan_NY]

Sorry I haven't it's a year long trial only a couple of my doctor know what I'm on incase it influences the trial

[UKADMIN Partner Behcet's Syndrome Society]

Good luck Bobthomas1962! Is this the trial run by the Centres of Excellence?

[bobthomas1962]

Yes it's being done at the Freeman hospital in Newcastle but in conjunction with the betchets center in Liverpool early signs are good regarding my ulcers only a couple of small one in the last couple of weeks most relief I've had in over a year other symptoms are just the same but it's early days I'm very hopeful of a agood result I know there isn't a cute but some relief would be great

[Curly1430]

I have been getting this all so in Ninewells Dundee I’m on my 6 dose and it’s made wonders to my life in such short time my walking sticks now lie in cupboard instead of my hands but lately my mouth burning more it’s like I’ve drank really hot tea but ulcer have calmed down and really bad pain in my leg bones not muscles but my bone it’s really sore and when it comes nothing makes it go I hope you have the successful time like I have on this good luck

[bobthomas1962]

It helped me greatly at the beginning but stopped by hopefully the increase and frequency of dose might help again but have to wait for my bone marrow biopsy results do you get the lidnoquine Lillie's for the ulcers there good for pain relief I get mine from the r v I Newcastle there used for chemotherapy patients who get ulcers with there treatment I'm also on a three pronged mouth wash that Liverpool betchet center say may help I'm sure you may be able to get them also I have lidnoquine spray you can get that of your GP it stings a little but does give releif

[bobthomas1962]

How often do you have infleximab