David Swain

Hello Vincent,

I’m really sorry to here about your Mum and her experience with getting treatment and oxygen. I’m in the UK and have IPF and am on oxygen. As IPF is supposed to be a rare disease, knowledge and treatment has been centred on certain hospitals as “Centres of Excellence” for Interstitial Lung Disease patients (including IPF).  I’m fo…[Read more]

Hi All,

I have been interested to hear that others are suffering from temperature problems. For some time now I have been experiencing symptoms of overheating, particularly in bed. This started with a burning sensation on my feet and ankles and then on my upper body as well, although I didn’t have a temperature. I mentioned this to my r…[Read more]

Thanks Regina. It’s interesting to hear you had those side effects, even though they’re not the same as mine. I think I’ll try stopping for a couple of days, as the nurse said that would be only way to tell. In any case, I think I’ll put up with the burning in order to stay on ESBRIET. Happy new year to you and all who read this.

Burning Skin sensation
I started on Esbriet recently and just finished titration up to the full dose. Fortunately, with non of the usual side effects. However, I’ve also recently started feeling a burning/hot skin sensation in my feet and owner legs, also on my upper body to a lesser extent. I wondered if this is a side effect of the Esbriet. My n…[Read more]

My thanks to everyone who has replied and supplied such useful information on your own experiences with acid reflux and fundoplication. In view of the mixed comments I was of two minds whether to go ahead. However my consultant Respiritory dr has now strongly advised against it due to the relatively advanced stage of my IPF. He said the risks are…[Read more]

Thanks for your replies Malcolm and Anne.
I’m sorry to hear your fundoplications did not result in any significant improvement. I had a discussion with the anaesthetist today who told me off the higher than normal risks, due to my PF. I will now have to consider whether to continue. As a matter of interests, do you think having the fundos gave a…[Read more]

Hi Susan. I’ve tried double doses of PPIs including Omeprazole; tried to find dietary triggers; tried not eating in the evening. Nothing seems to work. So that’s why I’m considering surgery.

Hi Charlene. I’m in UK. I’m went on OFEV last October and was told that both OFEV and Esbriet can only be prescribed if FVC is less than 80%. In addition both drugs will be stopped if there is more than 10% decline in a year, or FVC falls below 50%. If one of them doesn’t work or cannot be tolerated, you can be switched to the other, as long as FV…[Read more]

Hi Charlene. It’s lovely to hear from you again. I’m still in England, but booked to go to NZ for 2 months on 10 January. We went last January and had a wonderful time. It’s so nice to leave our winter behind to enjoy beautiful Summer temperatures and to see our son, his wife and two young granddaughters.

I’m a bit apprehensive about oxygen…[Read more]

I’ve been on 150mg twice a day for 6 weeks now. Thankfully, no side effects at all.My latest spirometry test showed only a marginal 1% decline from 75% to74% FVC and 45% to 44% DCLO, from 3 months ago. So I guess that it good news. However, I am feeling more breathless and tired, so that rather goes against the test results. However, it’s ear…[Read more]

Hi Charlene. I’m so happy for you that you made it to Hawaii. What beautiful photos! Wow, swimming with dolphins and all the other activity – great. Make the most of it and treasure those memories.

I’m interested to know if you used oxygen during your long flight. I’m flying from UK to New Zealand again next January. I’m not on oxygen, so didn’t…[Read more]

Hi Steve @steve-dragoo

It’s good to hear that you seem to be doing OK on your long stay in the Philippines, even without the laser treatments. Have you had any PFTs while there or is it just a general feeling? Personally, the laser does not seem to be helping as my PFTs are worse and I’m due to see a nurse on Tuesday about starting med…[Read more]

Hi John ( @caneelbay1 )  I’m so pleased you are still doing well and that Laser seems to be working for you. I have been following Andy Halls’s protocol since April but my test in July showed a reduction in FVC from 83% to 77%. This reduction has meant that I will be eligible for Ofev or Esbriet, as here in UK we are only considered if FVC is belo…[Read more]

Hi Steve. @steve-dragoo

It’s good to hear from you again and that things are working out good for you in the Philippines although it’s a pity you cannot find a laser provider.

In answer to your question, all I do is read the oximeter on my finger while undergoing the laser treatment on each lung.

David

Hi Dr Andy and John,

Thanks for your helpful comments. I have had a look at the symptoms of pulmonary hypertension and don’t think I have that.

I measured again at my last laser treatment and this time O2 saturation increased on both front lungs, wheras previously it had increased only on right front. So I think that is good and will measure…[Read more]