NINTEDANIB

[S627]

Just found you all, what an amazing site. Been diagnosed with IPF but on taking breathing test not sick enough for above drug. Have to have readings of between 50% and 80%, I have 105% so will not prescribe under NHS. Anybody else self funding? I have to get sicker to avoid paying, plain crazy!

[Symes]

Well I can't say much, except welcome to the site! Never heard of anyone self funding (unless you count going private).

The NHS has to save as much money as possible these days, so I guess your local CCG has put a scale in place.

Good luck with everything though

[S627 in reply to Symes]

Private is the right word. £2500 per month. Thanks for your thoughts.

[hufferpuffer]

Hello welcome to the site 😊 I don't have IPF and if I did, I would do everything in my power to slow the progression. Health comes before money, quality of life paramount. Sending positive thoughts your way, all the best, huff x

[S627 in reply to hufferpuffer]

You sound like a fab person, thanks you for your comments.

[hufferpuffer in reply to S627]

You are most welcome ! just wish they could find a cure, take care 5627 😊🌼

[Hidden]

hi and welcome to the site...both the above are good replys.

if the treatment your paying for will help slow the progression then you must feel lucky you can afford it...it is a lot of money...

I have asthma and copd+++other things and i have no choice but to pay for treatment as I don't live in U.K.

I know I feel very lucky that I can afford it.

your post has got me to thinking about the people that don't have the money to go private and are forced to wait untill they are sick enough to be given help.....something wrong there somewhere 😕

wish you well.

Andy...

[imelda16]

Hi S627 glad you found this site everyone is very helpful and friendly I have IPF and am on Nintedanib been on it for 12mth now but if your lung function is OK and you don't have oxygen then if I were you I'd just work at keeping as fit as possible and eat healthy. There is another treatment called Pirfendone which is usually tried first but it must be noted these drugs do have some awful sideffect and don't give definite improvement but may slow progression down. So if you're consultant is satisfied with where your at I would take their advice.

[Puppet]

Hi. Husband in same position. Spoke to a wonderful consultant pharmacist about this. The levels at which you can be considered for both nintend bub and perfenidone are set nationally. She also went through all the potential side effects (not everyone gets them). Decided to concentrate on pulmonary rehab at present. She also said that there are loads of clinical trials at present which are worth discussing with your consultant

[imelda16]

The Nintedanib check ups are monthly for 6mths when the blood test are to see the impact on the liver and also kidneys but the liver test is most important as any changes will mean treatment is stopped I go 3mth visits but have been told any pain in liver area to contact them immediately or ask my GP to do blood test. It has been known to cause liver damage but all Meds carry a risk so if it helps slow down progression it's worth trying.