Considering pf trails ?: Hi guys since... - Lung Conditions C...

Lung Conditions Community Forum

56,314 members66,939 posts

Considering pf trails ?

Dion50 profile image
8 Replies

Hi guys since I am in later stages of pulmonary fibrosis 46pc I realise it could be a lot worse,I'm wondering of anyone has had or considered pf trails I'm seriously thinking about this now as i have nothing to loose ,anyone else input would be grateful 🙏 thankyou all

Written by
Dion50 profile image
Dion50
To view profiles and participate in discussions please or .
8 Replies
Ergendl profile image
Ergendl

Big virtual ((((hugs)))).

Someone I know joined a trial for a different medical treatment. The novel treatment has transformed his condition which otherwise would have caused him serious problems.

I would join a trial in your situation: you get the best of medical treatment and support, the knowledge that you are using your situation to further medical research, and the possibility of an improvement of some kind.

Wishing you all the best as you make your decision.

Izb1 profile image
Izb1 in reply toErgendl

Totally agree with your comments Ergendl getting the best of treatment and support are the best reasons for joining a trial x

lovejoyliz profile image
lovejoyliz

Hi Dion50

I have not even heard about pf trials or which hospitals are carrying them out.

l do not see any reason why you should not go for it and would say that you should talk to any hospital that is carrying out that type of treatment.

Take care and l wish you every success in moving forward with your health.

Blessings

Lovejoyliz

Dion50 profile image
Dion50 in reply tolovejoyliz

Thankyou x

Dedalus profile image
Dedalus

Investigate any trials first so that you're better informed as to whether any suit you and then make a decision (some aren't suitable or available for everyone). All best wishes and good luck going forward.

Schmu profile image
Schmu

I always ask my pulomologist before I participate in any clinical trials. It helps me make an informed decision.

kenbren profile image
kenbren

I have IPF, not heard about any trial but will certainly mention it to my Consultant next month I would participate in any trial that may be of benefit, anything that may improve my way of life I would certainly go for Take care, Blessings

Dion50 profile image
Dion50

Hi I spoke to my consultant from Leeds but because I had covid at the time I did ask him is there a trail o can do he said well let's gets covid out of the way and then we'll look into it ,he said there is medication but it won't make me feel any better by that I'm presuming that it would be to prolong my situation we'll to be honest I don't no if that's what I want ,there was no mention of med names I really wasn't up for talking but hopefully il know more in March.👍

Not what you're looking for?

You may also like...

PF ????

Hidehi peeps just a quickie from me As I sit here and wait for my tea I do read your posts......
longlungs profile image

PF

What's the % when you have to go on to oxygen I,am sure they have made a big mistake with my tests...

Breathing difficulties but PF normal

Hi everyone, as I've posted before my asthma was only diagnosed a year ago and bronchiectasis just...
LizPat30 profile image

Benjie-123 ASKING FOR HELP WITH pf

I have just written a post, but lost it somewhere! My husband has pf and Parkinsons. For the past...
Benjie-123 profile image

New pf diagnosis

Hi my name is john. Just had ct scan results and confirmed mild pf,mild emphysema,and mild...
Jw19 profile image

Moderation team

See all
AsthmaandLung profile image
AsthmaandLungAdministrator
moderator_AandLUK profile image
moderator_AandLUKAdministrator
Claire_ALUK profile image
Claire_ALUKAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.