[Ray Townsend]

I live in the UK and have been on OFEV for a little over two years and I was also interested in considering zinc as a supplement.  My pulmonologist wouldn’t say whether this was a good idea or a bad idea so its probably a grey area at the moment – I’d be interested in reading any comments!

[Ray Townsend]

Hi Ray,

If you were diagnosed in 2008 you are now fifteen years into your IPF journey and that’s good going!  I was diagnosed in 2021 so I’m a mere novice compared to you but here is my attempt to answer your question.

I’m English and live in the UK where the rules are different. Here as long as you have lung capacity of lower than 80% and higher than 50% you can be prescribed Ofev free for as long as your lungs stay within that bracket.  It’s a daft and heartless rule because if your lung capacity is over 80% you have to wait until your lungs permanently weaken before getting the medication and once you drop below 50% you are throw on the scrap heap.  Because of this rule, although I was prescribed Ofev in 2021 and I’m still on it now, I decided to do some research into what I would do if I fall below 50% and lose access to the medication in the UK.

It seems that the Boehringer Ingelheim international patents last until at least 2024 (some last longer) so there is little chance of getting genuine generic Nintedanib in the UK or US anytime soon.  However although I haven’t actually tried to do it, there does appear to be generic Nintedanib available for purchase in India at massively lower prices than elsewhere in the world – use Google to do a bit of research.

I wish you luck finding a supply of generic Nindedanib and I would suggest you have a capsule from your first delivery analysed to check that it is genuine.

Best regards,

Ray Townsend

[Ray Townsend]

Hi Theresa,

Nasal drip and excessive mucus are really big problems for many of us and I’m sure different things work for different people – here are my experiences.  (I live in the UK so perhaps medication names may be different in the US).

I was diagnosed in February 2021 after suffering with breathlessness, post nasal drip and mucus for a number of years.  I’m on 150mg of Ofev twice a day and so far my symptoms remain stable. (I am not on oxygen).

I found the way to partially control post nasal drip was by taking Beconase morning and night but recently I have switched to another nasal spray called Avamys and this I think works better for me.  I have controlled my mucus problem by cutting out most dairy products and taking Carbocisteine.  Originally I took 2 x 375mg capsules morning and 2 before bed and frankly it didn’t work and I was thinking of cutting the med out but then a respiratory nurse on my care team suggested taking two <span style=”text-decoration: underline;”>additional</span> capsules in the middle of the day and this miraculously cleared up the mucus problem – at least for now.

The above information may not work for you but I hope it is of some help.

Try to keep positive – we are all at different stages on the same journey.

Best regards, Ray Townsend

Ps.  For me the other thing that helps <span style=”text-decoration: underline;”>everything</span> is exercise so if you can get out for a walk most days I think you will feel the difference.

[Ray Townsend]

Hi John – sorry to hear about your diagnosis.  I’m a year ahead of you as I was diagnosed in Feb 2021.

I live in the UK and here OFEV is free so I don’t have your difficult affordability problems.  However in the UK this medication is supplied by our health service with ‘strings attached’.  I won’t bore you with the details but this prompted me to do a bit of research into what I would do if my access to OFEV here was ever withdrawn.

The first thing to say is that depending on where in the world you are looking, you often find this med under its ingredient name – Nintedanib so get used to using both names in any Google searches you do.

The cheapest place to get OFEV/Nintedanib seems to be India where it is massively cheaper than the US but of course the problem is how do you know if the product you receive is genuine – particularly as the med only slows down the progression of IPF so you are unlikely to be able to accurately judge efficacy.

If I ever need it, this is what I have decided to do (this is only my opinion):

1. Get a prescription for OFEV.

2. Find a reputable  Indian supplier.  Here is a POSSIBLE one to look at:  https://www.gnhindia.com/products/canada-drug-din/ofev-boehringer-ingelheim-canada-ltd-ltee-92761/ but do your own research.

3. If the price is good and the process looks genuine, order a month’s supply.

4. Pay to have the OFEV analysed in the US. (It will be generic Nitedanib but the composition should be the same).

5.  If all is well then you have a way to get OFEV without selling your house!

If you get any luck with this then please post your experiences back to the forum as it might help others.

Good luck and best regards,

Ray T

Ps. I’ve been on OFEV for over a year now and thankfully I do not have any of the nasty side effects and my IPF appears to be stable.  I live in hope that one of the new meds in stage 2 & 3 trials will give us all more hope for the future.