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Hyperbaric Oxygen Therapy – is it safe for IPF patients? Any benefit felt?
Hi there everybody out there – I’m writing from the UK – 62 years old and was diagnosed with IPF about 3 years ago. I was on Ovef/Nintedanib but it’s now being stopped as I’m getting worse and my LF has gone below the prescribing threshold . I’m now on oxygen cylinders … but still trying to work m office job (admittely mostly online from home) … and even occasionally play gigs with my band! But it’s a challenge … and they’ve just told me they think a transplant is too risky as I also have coronary artery disease (although I never knew, and it’s not that bad, no angina symptoms or anything like that) …. I’m hoping to try and challenge that, let’s see how I get on …
I have a number of things I wanted to ask the folks in our PF community – and the first thing is …..
Does anyone know about Hyperbaric Oxygen Therapy (HBOT)? Is it considered safe for PF/IPF patients? Has any doctor or professional warned you against it? If anyone out there does do it, have you experienced any benefits? Or problems?
I’ve read the news article about the little study where it showed promising results in PF-induced mice and in-vitro – but would love to hear about people’s actual experiences. Thank you and good wishes! 🙂
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13 Replies
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Hi Dennis,
Also from the UK and up in Aberdeen.
My knowledge on the use of Hyperbaric chambers is very limited but it is something I looked into briefly as I had come across related articles to do with sports recovery.
I know the chambers have been used for various things such as helping with sports recovery, wound infection (skin grafts etc), Covid recovery, stroke recovery and even beauty therapies but not too many studies done on how it would help with lung disease, at least I can’t find many studies online.
You can even by costly home chambers for your personal use.
In my head, the theory kind of makes sense as you are basically saturating the body with oxygen for a prolonged period of time under pressure but I am sure it is not as simple as that. My initial thoughts would be that your o2 levels would surely have too be extremely low at rest for you to gain any possible benefit and my thinking would also lean towards that the treatment using a chamber would have to be something you would have to do regularly. I can’t imagine any initial benefit you might gain from a session or even a block of sessions would carry over for days or weeks later.
What I did learn though is that there will likely certainly be restrictions if you have other underlying health conditions whilst other medical or past medical conditions can rule you out completely.
The only advice I would give you is speak to you’re consultant about it fully, don’t just be taken in by the webpages or glossy brochures of the companies offering the service.
You certainly have nothing to lose by asking your consultant the question though. I would be interested to know what they say.
Not knocking it by any means but if there was a benefit to those suffering from PF related diseases then I think many more of us would have heard about there use already.
Perhaps still very early doors and my dubious nature is coming from my lack of information and knowledge, just don’t always go by the information presented to you by the companies themselves who provide the service.
Not much help sorry, just my view
Scott
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I did 3 sessions this May (was scheduled for 30) for bleeding issues caused by radiation treatment for prostate cancer. My lungs felt raw after 3 session. I quit. Significant drop in lung function followed over the next several months. I can’t say for sure that hyperbaric O2 treatment caused the drop, but believe that to be the case, as I started having issues almost immediately thereafter. FVC %predicted was 83% in April and is now 70%. DLCO in April was 62% predicted and is now 50%. I had been stable for a long time before that. Be careful.
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Hello there Scott, hoping all’s well with you, and thank you for your thoughts …. I’m thinking along the same lines, trying to find reliable information from more than just the glossy brochures! I’ve asked my hospital consultant and respiratory nurse, and they’re urging caution, and I’ve also asked the support team from the wonderful UK charity Action to Pulmonary Fibrosis (awaiting reply). If I find anything useful I’ll put it up here.
Interestingly, I’ve found HBOT isn’t only provided by commercial businesses in the UK. Down our way (Midlands and South-West) there are two charities that do it at vastly reduced prices compared with the commercial people. In both cases they’re originally set up for people living with MS and other neurological conditions, but make it available to people with other illnesses too.
All the best….
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Hi again Dennis
i wasn’t meaning too come across as being negative about it, I just don’t see much medical studies on it to validate it one way or another for those who suffer from any type of PF, and those commercial businesses that can provide the facility don’t really link any of their statements to hard evidence or studies and some of the reviews are questionable.
It is interesting though that your consultant and support team urge caution though….did they give any reason?
Yes, I am aware that there are a few organisations using the chambers for the treatment of MS and other diseases so perhaps the more statistics and studies from those may well enhance treatment for PF moving forward but I think we are a bit away from that just now.
Not an expert by any means so stand to be corrected from anyone with more knowledge on the subject.
Failing that we should all train as deep sea commercial divers and have oxygen on tap all the time.Dangerous work but at least we would feel great doing it!!!
take care
Scott
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Deep sea diving, sign Me up.
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Wow, thank you for this, Bruce – so some very different and opposite experiences here. Indeed need to think and be cautious!
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Thanks again Scott
I’ve now had a reply from Action for Pulmonary Fibrosis, and they too advise caution, simply because not enough is known about it yet (from a PF viewpoint) and proper large-scale trials would need to happen first.
So I’ll keep thinking hard about it … and in the meantime, where did I store that mask and flippers … ?! 🙂
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Hi there,
I have done 3 sesssions of Hyperbaric and found it be hugely relaxing, which in turn improves my lung function by virtue of reducing anxiety.
best regards,
Wes
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Hello Wes – thank you for that, something encouraging at last!
Could you tell me (only if you don’t mind) about what stage of PF you’re at, what your FVC percentage is, if you know it … just so I can compare with my situation. No worries if you’d rather not say…. Cheers
Dennis
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Hi. I go to HBOT 2 times weekly for 1.5 hours a session. On my last PFT, I brought my DELCO score up. Not sure if it’s because of HBOT, but I plan on continuing.
My pulmonologist at Stanford is aware I’m doing it and had no negative comments about it.
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Thank you Michele – that sounds encouraging…
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This may not be helpful, but I am the wife of a man who has IPF, & I had 60 hours of treatments over 30 days in a hyperbaric chamber in Los Angeles. The reason I had it is because of problems with skin healing after bilateral mastectomies, so it didn’t have anything to do with lungs. But what I can say is that it did nothing for me- it didn’t help at all with skin healing. As for any kind of a general feeling of “well-being” during or after the treatments, I had none. Really, it was a waste of time for me, but of course that doesn’t mean it would be a waste for someone with IPF.
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