[Jofac O'Handlin]

Charlene, Yes this is interesting, in simplistic terms logical. As our vital capacity and gas exchange values reduce, the only compensatory mechanism is for the heart to attempt to circulate a larger volume of blood. Thus stain on the heart. I wonder what was the final component to fail when my sister died? I would expect that the death certificate would record IPF, but I would need to check with my brother in law. I wonder what will be the component when my turn comes.

My consultant, some years ago, referred to a progressive abnormality of the heart which I regret to say I did not take in. I had the arrogance to believe that my  athletic background would protect me to some degree. In following up Kenneth’s observations, I noted that arrythmia was one of the symptoms, something that I suffer occasionally.  It is episodic in nature, presently clear.

As a final note, I wonder if maintaining an iron rich diet, or supplement is desirable to maintain healthy haemoglobin? I tried tablets but they didn’t agree with me, so I now use iron rich water in juice as a lower strength supplement…. a palliative.

Regards, Joe

[Jofac O'Handlin]

Hi Susan,

Thank you for your encouragement. I respond by saying, ‘you too’, I admire your spirit, and keep getting the miles in. I read the Swiss paper on the antibiotic azithromycin which ‘may’ have anti fibrotic effect for IPF but also seemed to have some benefit for GERD. I doubt a GP would prescribe an antibiotic for long term use as a prophylactic. Also, another pill with side effects!

I was a runner all my life, with a few discipline lapses, but had a good training partner for over 30 years. I had to retire from training last June as I was holding my friend back, and it had become purgatory for me. Considering my age my body is very good, just my ‘blank-blank’ lungs.

Hi Rand O’Brien, I also do not condone hoarding either, but understand the psychology involved. Over here in the UK there has been a run on toilet rolls! I wondered, in the old days, wasn’t the Sears Roebuck catalogue the substitute in the USA!!? However, your comments on the science are much appreciated. My hands have never been so clean!

Hey Paul, we with IPF and COPD sufferers are at high risk and may not react quite logically. However, if you have a comment, please support the same with some information or facts.

Best wishes to all. May we survive and get out the other side of this crisis OK. Probably poorer with the market crash but Hey Ho!

Take care all, Joe

[Jofac O'Handlin]

Hi All,

My wife has just gone through thyroid removal and radio iodine treatment received mid February. As a result of this we agreed , an excuse,   to self isolation, no social gatherings …. if possible, which was ideal for me, now nearing 7 years since preliminary diagnosis of IPF.

I anticipate that I am in the final year or 18 months with my IPF. But we are lucky in that we live in a small community about 10 thousand, in a sea side town. This allows us to take evening walks in the sometimes too fresh air with the call of seagulls, and without meeting or passing any or many other pedestrians. Occasional friend’s stop us  to offer thier support, but we try to exceed the recommended 2 metre rule, quite a distance! At 78, and 74 this exercise is good for our general wellbeing, even if i find my slower than I’d like walk up the headland, rather harder than I would wish.

I sincerely believe that I would not survive Covid-19. I am not in panick mode just realistice. Take reasonable precautions, and I hope to hang on until a vaccine or  treatment might become widely available. It all depends on your definition of reasonable. We are quite social, but can tollerate our own company and are relatively independant.

It is good to hear the world medical research groups co-operating to fast track a treatment.

Good wishes to all.

Regards, Joe

 

[Jofac O'Handlin]

I believe that this topic was previously covered on this forum. A retrospective on diabetic patients with IPF and taking Metformin apparantly showed no statistical improvement over normal non Metformin IPF sufferers.

Best wishes all. COVID-19 is a worry. Joe

[Jofac O'Handlin]

Hi Charlene, I would like to follow up on Steven’s comment on the statin link to IPF.

I emailed my cosultant about prescribing symvastatin and got the paper prefered to by Steven. However I read the paper (not understanding a lot) and found the crucial line in the third paragraph from the end which showed that there were two groups of statins (likely more), and that they had focused on the ‘harmful’ group of the reseach. Crucially, they stated another group which included symvastatin that reacted differently, and which MAY be positively from an IPF viewpoint.

Bearing in mind that Boehringer tested some 13,000 posible candidate substances and found that symvastatin seemed to be one of a very few prospective candidates that MAY be positive for further IPF study.  I feel that my consultant is too busy covering the wide range of COPD to delve into the detail.

I feel that I have entered my last year, and prepared to ‘have a go’ at any likely candidate that might arrest the progress from my ‘going over the cliff’!

I will pull out the relevant phrase from the research paper on statin and cigarette smokers for the forum to judge.

Regards,

Joe

[Jofac O'Handlin]

@jaimeluciano

Hi Jamie, i note that you have been prescribed metformin. Is this for a diabetic condition or for the IPF? The data for the use on IPF was found inconclusive. I tried to get my GP to prescribe but he refused.

You and your mother with IPF, it is me and my sister (deceased) she only survived 18 months from diagnosis. I am 6+ years and on OFEV, but would like to involve other therapies the might stop or reduce scarring like metformin, azt, or statins as indicated in the IPF News. Good luck, Joe

 

[Jofac O'Handlin]

Hi All, I am an occasional drinker, on OFEV (easier to spell) for 4 years. Now on 100’s as diarrhea and associated problems on the 150’s. I have not noticed worse hangovers following the occasion over indulgance. However, I find it essential to stay hydrated. Yesterday, I missed my 2pm cup of tea, and by 5 was ucomfortably heady (not a full blown headache but going thzt way). A glass of diluted fruit juice corrected that within 1/2 hour. Joe.