Research Medication

[LolaBow]

Hi all, Yesterday I started on the Resus Medication for Reasesrch into ( hopefully haltering scarring getting worse on livers).I started a month ago by having a biopsy which has confirmed I have advance fibrosis liver disease...last week I had a MRI scan and Yesterday I started to take these pills, which I will be taking for 6 mths. I will be having blood tests for 6 weeks to check my bloods and to let me know if i need to up or lower the dosage..After 6 mths it will be another biopsy and MRI scan to check if these meds have altered the scarring...

I am going to keep a diary on how I feel on these meds..1 out of 3 people will be on a placebo..The label on the meds have the drugs name..( so I looked it up on the Internet ( I wished I hadn't) I have never read as much side effects on a packet of drugs before...I can cope with reading the normal ones ( ie: vomiting, headaches etc) but somr sound re terrifying. ( can cause cancer. Skin cancer. Brain disease, and much more. ..I rang the consultant from the research team and she reassured me that they have not had any feed back apart from the normal side effects..So I've just popped 2 more in my mouth I felt a little dizzy yesterday a couple if hours after taking them, but that might be in all in mind..So fingers crossed all goes well for me and the research for other people in the up and coming years to come..Xx

[Ewife]

I'd be really interested to hear which drug this was......my Dad in law was given a rare drug to stop progression of fibrosis on his lungs, I've often wondered about it

[LolaBow in reply to Ewife]

Hi, Sirolimus...Day 3 now...I've only felt a little dizzy about 2 hrs after I have taken them for around half an hour.

[Aziko]

Morning LolaBow,What you are doing is amazing. I took part in a different research which just finished. It was to do with grade 1 varices . It was 3 year study. People like you and perhaps me make huge difference to medicines come into markets to help others. To be frank side affects are listed because dome people may had them. It doesn't really mean you will have them. Wish you very best. And very grateful to you. X

[AnxiousPete in reply to Aziko]

Hi Aziko - I have grade 1 varices. Do you know what the research outcomes were and what did you have to do ?

[Aziko in reply to AnxiousPete]

Hi, it was nationwide in NHS . The research to see if Betta blockers work on people with grade 1 varacies to prevent bleeding. I will let you know the name of the research later.

[julie-001 in reply to Aziko]

hi, i am on a trial also the very same. it is for 3 years and i am only 15 months in.