Are you aware of any new treatments being researched?

[HelenHU]

Do you feel that you need a specific treatment for fatty liver or NASH? How do you feel about participating in clinical trials?

[Hidden]

No I am not.I would not do a clinical trial too risky

[jan-ran]

If my nafld was worrying me, I would definitely go for a clinical trial. I have done that a couple of times, for other conditions, and always felt that it was an advantage. As far as I'm concerned, the condition could be managed by diet in the first instance, but that may not be an option for everyone. I think the medical profession might give us more advice on how to treat fatty liver, and not assume that it is always a progressive disease. I had to find out for myself the best way to reverse it. My doctors never mentioned anything about a lifestyle change that could drain the fat out of my liver.

[Dakosuna in reply to jan-ran]

Could you share what you did?

[jan-ran in reply to Dakosuna]

I went on a low carb, high fat, low calorie diet, (8weeks) lost weight and reversed my diabetes. I stick mostly to the lchf diet and try to maintain the weight loss. Revisit to overweight and diabetes is not an option!! Disappearing fatty liver was a welcome spin off. 😁

[TLC777 in reply to jan-ran]

How can a high fat diet work when we are to avoid fat ??

[jetjetjet]

N o But i see My gastro Dr. tomorrow 7-12-17 -- some other issues to discuss also - will ask

[mrsmerlin]

I am aware of 2 clinical trials at the moment.

The first is the use of cannabidiol and the second is using synbiotic treatment.

The only reason I would not take part in a clinical trial is that I have multiple health issues and I would need the ok from each consultant. Even then there would be no idea how these would affect current medication.

Otherwise I would definitely take part. I was/am a participant in the multiscan trials in Oxford which i hope is released throught the UK.

[Mary505 in reply to mrsmerlin]

Do you have a link to these clinicals? I would be interested in looking into it.

[Bd22 in reply to mrsmerlin]

How do you get to be a part of the clinical trial in oxford?

[Maladjusted]

Although I have previously participated in clinical trials, I am not sure I would do so now. I have multiple health issues, and feel I am already taking more than enough medication. I would not risk a trial drug interacting with my current medication . Not sure about specific medication, but I do feel some specific advice would help. I know weight loss would help, I do control my diet, but am unable to exercise due to health issues, so the most I am able to do is maintain my weight but lose very little, if anything.

[Granny56]

I too feel a bit uncertain about participating in a trial due to multiple pathology and polypharmacy. There would need to be a lot of reassurance given before I would consider a trial. Nonetheless, I realise the importance of clinical trials and the potential benefits they might add.

I would however consider a treatment once I know all the ins and outs.

[JoyHazel]

I am currently in a clinical trial, but only require blood work every 6 months. Blood is frozen for future study and specific for NASH patients. Trial always means risks versus benefits; and input from doctors as you don't want to do anything to be taken out of the transplant group.

[HelenHU in reply to JoyHazel]

This sounds really interesting! Why is your blood being frozen? Can you go into a bit more detail about the trial?

Sorry for all the questions!

[JoyHazel in reply to HelenHU]

It's being frozen because a "drug" hasn't been developed. I'm unsure of the quantity participating (study group), but the study will look at similarities among the test group and development (blood counts, symptoms, prescriptions) over a 5 year period, if able to provide blood for the 5 years. Then develop drug(s) to see how the blood responds (I'm guessing a MAb type drug). Then the blood can be compared to your own blood over a time period. The study probably won't benefit me but could help the next generation.

[mauschen in reply to JoyHazel]

Do you feel pressured to be in a trial? I only ask because you mention not wanting to "be taken out of the transplant group".

[JoyHazel in reply to mauschen]

Yes, I kind of do. But since I'm not taking any stage 3 drug that could possibly interfere with prescriptions or speed up liver deterioration and my liver doctor suggested I consider participating, I didn't see reasons not to participate.

[mauschen in reply to JoyHazel]

No trial or study should leave you feeling compelled in any way to participate, you can leave at anytime without any disavatage to your current treatment or position on transplant list.

The trial will have gone through a rigorous ethical review to ensure that you are in no way diadvantaged by participating in a trial. May I suggest that you ask to speak to the study coordinator to discuss your fears or uncertainties. Perhaps a chat is all that's needed to inform you of your rights and give you peace of mind. Incidentally, I think its wonderful that you decided to join the trial and provide information for all of us.

[angelatonew]

Yes I would love to participate in trials but not for pharmaceuticals as drugs should be the last resort - it should always be nutrition/lifestyle changes first. We grab too easily at medications in the NHS.

I believe there are limited trials that look at diet (specifically carbs/sugar) in relation to NAFLD

[mauschen in reply to angelatonew]

I agree that sugar might be one of the causes of NAFLD and other illnesses such as Altzheimer disease and as such should be thoroughly investigated. However, to do so we must come up against another large money making industry, food and drinks.

Is money or sugar the root of all evil?

[jan-ran in reply to angelatonew]

I'm with you on this!

[mauschen]

Not aware of any treatments.

Would have no problem participating in an ethical trial with sound methods and a rigerous risk assessment plan.

[Cats2018]

I am currently participating in a clinical trial. This trial is testing a drug and of course I don’t know if I’m taking the experimental drug or a placebo. I’m happy to be participating even if I’m on the placebo because I am being monitored monthly by a hepatologist. The trial is just over 1 year long & I have monthly blood tests & periodic imaging: MRI - elastography & other liver imaging, have had a biopsy, all as part of the clinical trial.

I did not feel pressured to participate in the clinical trial. The hepatologist who diagnosed me with NASH told me about the trial after my FibroScan and the choice was mine as to whether to participate. Once the trial is over, I will continue to see the same doctor (hepatologist). I suspect that in this trial, I’m probably being monitored more closely than I would be if I needed insurance approval for all the blood tests and imaging.

[TLC777]

Info would be great