[Paul Polidano]

Hi Dawn –Although I’ve just started to use the Air Physio device and find it helpful, being also interested in the AiroFit device you referred to, are you able to please provide more details about it – e.g. full name of device and where is it available from?. Thanks

PaulP (Downunder OZ)

[Paul Polidano]

Hi – To all who have reported that taking Imodium for diarrhea control hasn’t worked, may I suggest that you should check that you are not fructose intolerant, as this also leads to diarrhea if you don’t watch what you eat.

I too have been on OFEV for quite some time with the usual bouts of diarrhea and nausea, but since discovering that I am fructose intolerant, my quality of life has improved a great deal by simply watching what I eat and using Imodium, with great success, I might add (-so much so that I always carry 2 caplets in my wallet for use when not at home).

Good health to all

PaulP -down under (OZ)

[Paul Polidano]

Hi Yoli
Having been diagnosed with IPF early last year I was put on OFEV initially but due to bad nausea and diarrhea, my Dr put me on Esbriet while being warned of possible skin irritation. After about 3 months I developed an itching problem, over many parts of my body as well as a horrible scaly skin condition on the back of my hands -almost resembling the look of snakeskin. With my itching becoming intolerable I asked to go back to OFEV thinking that nausea and diarrhea were preferable (which I could manage anyway) than the unbearable skin irritation. Within 2 weeks of stopping Esbriet, my itch and skin condition disappeared completely and I returned to normal.
Having been on OFEV now for almost 12 months -albeit at a lower (200mg dose) per day for the last 6 months, my life with IPF has become more tolerable as both my nausea and diarrhea have subsided somewhat. Also what’s more pleasing, is that my IPF Dr last week advised me (after having undergone my regular breathing test etc.,) that my breathing and liver function haven’t deteriorated since my last visit which was almost 6 months prior.
Hope you overcome your problem also using Esbriet.
Regards
PaulP- Downunder in Oz

[Paul Polidano]

Sorry to read about the death of your husband David- Our condolences to you and your family.
PaulP (from Oz.)

[Paul Polidano]

Likewise,  for 18 months, I have been on OFEV then Esbriet (due to frequent nausea and some puking) back on to OFEV again, after encountering horrible and unsightly skin rash, (which disappeared immediately when I stopped Esbriet) and have now been on OFEV for about 9 months (currently on 100mg x 2 daily).

During this time I have not encountered any issues with leg muscle weakness. In saying this though I do play tennis once a week for approx 2 hours (with ‘not so energetic’ teammates, I might add) as well as keeping myself as active as possible, so I support Joan’s theory above, that vigorous exercise may help.

Regards (and good health) to all – from Down under

[Paul Polidano]

Hi All. Once again thank you to all for these blogs which I find are very interesting. For me personally, apart from the fact that almost in my adult life I’ve been very sensitive to smells emanating from certain things, like incense, or cigars (absolutely hate them, as they also trigger a headache) strong perfume and cigarette smoke, ever since I was diagnosed with IPF, I can’t stand the smell of onions being browned when my wife is cooking. Because this always triggers a severe bout of coughing, my poor wife has had to resort to pre-cook the onions in the microwave oven  -despite the fact that this isn’t what is called for in the recipe.

Is anyone also affected in this manner by the smell of onions being browned off in cooking?

I’m asking this because my wife doesn’t seem to understand the reason why (browning onions) has become such a problem to me lately.

Regards to all

 

[Paul Polidano]

Hi – A big thanks to all who posted these blogs on this very important – but often neglected subject.

With myself being diagnosed with IPF in Jan 2020 – but thankfully not yet needing Oxygen, having often read that other IPF patients are having to use supplementary oxygen to get on with their life, as well as knowing that this will, most likely be my fate sometime later in life (hopefully with the grace of God – much later), I have often wondered how do IPF patients start on oxygen.

Having read these helpful blogs it somewhat eases my mind to know what to expect, when the time comes for me to transition to using oxygen.

Regards to all  – from Downunder.

[Paul Polidano]

Hi Charlene

Thank you for all the work you do in supporting us with IPF etc.

Please find my response to survey re ‘Starting OFEV

How long after your diagnosis of PF/IPF did you start taking Ofev?

• Stated OFEV immediately on being diagnosed.

When you started Ofev, had your Doctor shared with you whether your PF/IPF

was mild, moderate or severe?

• Doctor mentioned it was mild.

When being prescribed Ofev did you ask or did your Doctor offer to explain why they chose this drug over Esbriet?

• Dr advised the side effects of both Esbriet and OFEV and since Dr seemed to favour me going on to OFEV (because of possible horrible skin rash side effects -please see further comment below), I opted to go with OFEV.

How long have you been on Ofev?

• Started on OFEV 7 April 20 -immediately on being diagnosed, but due to severe nausea and constant diarrhea, Dr switched me on to Esbriet approx. 4 months later (mid July) which I lasted on, only until end of Nov, due to horrible skin chapping (back of hand mainly) and terrible itch developing on top and back of my head.
• Coupled with the fact that my nausea and diarrhea continued while also using Esbriet which I couldn’t deal with, I asked my Dr to put me back onto OFEV which I started on again in late Nov 20 (@ 150mg twice daily).
• Due to my frequent nausea and continued diarrhea, my Dr reduced my dosage to 100mg twice daily, which almost eliminated my frequent nausea as well as slightly reduced my diarrhea to a more ‘comfortable’ (manageable) level.

Can you outline some side effects you have experience as a result of being on Ofev?

• Side effects – as indicated above. However, it is well noting that having just (6 weeks ago) stopped OFEV completely for 10 days (due to interstate holiday), my nausea and diarrhea disappeared completely.
• After resuming again @ 100mg once daily for the first week and then back on to 100mg twice daily from then on, although my nausea and diarrhea reappeared frequently for the first week, when resuming the full ‘200mg daily dose’, I was extremely pleased to note that over the last couple of weeks both my nausea and frequent diarrhea, seemed to have almost disappeared completely. -just an occasional occurrence of diarrhea (-possibly because I have also been diagnosed as being lactose and fructose intolerant).

Do you have PF (with a known/suspected reason for the disease development) or IPF?

• Diagnosed as having IPF.
• Regards PaulP – Down under -Melb Aust.