JillT
Forum Replies Created
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I totally get your reasoning, Pete. That’s exactly how I felt too when I was offered the drugs. They don’t seem to actually improve quality of life, just slow progression. My fear on hearing this was that the end stages of the disease would also be slowed down, drawn out and possibly more difficult as a result. I’m not interested in adding more suffering to an already very unpleasant prognosis. Then when they said up to 3 other drugs might be required to control the side effects of the antifibrotics, it was a hard pass from me. I’ve suffered with IBS and other GI issues over many years already, so why would I want to take a drug likely to make things worse in that regard? Completely agree re quality vs quantity of life – health span, not life span.
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My IQoro device just arrived actually 🙂
I’m in Australia, so a very long way from the EU. Luckily, my sister has relatives by marriage who live in Norway, so her SIL managed to order the device and then forward it to me here in Western Australia. Going to start the training process tomorrow. Will let you know if it helps with my reflux/hiatal hernia.
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Thanks, Charlene. I’m currently watching it and it seems to be fairly comprehensive, so I’d definitely recommend to other forum members.
I’m currently trying to obtain one of the IQoro devices (currently only licensed for EU countries) which are apparently helpful for reflux and other functions affected by vagal nerve tone. From some of the content of the video, it seems like improvements in vagal nerve tone could also be involved with some aspects of chronic cough. I’m really hoping the IQoro will help with my reflux which isn’t always very well controlled by medication, especially now that GP’s here are being actively discouraged from prescribing H2 inhibitors and I can only now take PPIs which have also been accumulating evidence of harm from longer term use. It’s a worry 🙁
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Not sure if this is the right spot to post this, but I notice the Pulmonary Fibrosis Foundation Youtube channel have posted a webinar on the subject “Cough 101” that may be of interest to forum members:
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@Kathleen-greco – there is probably not all that much research on Metformin specifically to IPF, however, there is a large amount of research because of its prominence as a medication for Type 2 diabetes. It seems to be protective against both heart disease and cancer which are closely associated with Type 2. Even some of the longevity researchers are looking at it because of various promising statistics on prolonging life. If you search for it, you’ll probably find lots of stuff. Not sure what the policy on links is here, but here is one I found on the summary of research: https://www.bloodsugar101.com/metformin
A lot of the promising research relates to metformin’s effects on AMPK – effects that are also found in the ketogenic/low carbohydrate diets. Ketogenic diets in particular can also be neuroprotective against hypoxia, so that may be one pathway for it to be helpful with IPF. There is a man who goes by the moniker “COPD Athlete” who uses the diet for that reason.
Lots of info out there on the web for both metformin and ketogenic diets.
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I keep trying to post a reply and the reply doesn’t work? Error says “Your reply cannot be created at this time” or something like that.
Is there a length limit?
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Thanks for replying, Charlene and Cindy.
I’m seeing the respiratory nurse tomorrow to discuss POC options, so will ask about this and pain in general. I get really weird and wonderful (and sometimes fleeting) pain in many places these days. It seems quite bizarre when I try to explain it though. ISTR seeing an article on IPF and chronic pain somewhere, but now I’ve tried to relocate it, I’m unable to do so. Add in a reduction of my ability to concentrate these days and I seem to be having a lot of “senior” moments, lol.
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I’m not on Ofev, so can’t answer for what symptoms that might cause, but I’ve recently deteriorated after nearly 10 years of living with the IPF diagnosis without many symptoms, though given where I am now, I’d say the last 2-3 years have seen some gradual changes. My diagnosis was incidental to a CT scan for other reasons.
I’ve only been prescribed supplemental oxygen for exertion (was delivered on Thursday), but still adapting to the newness of it. I can relate both to your symptoms and what Charlene described in her article. I’m 67 and have so many aches and pains, I sometimes feel I could be in my 80s. The pains seem to move around, including head, jaw, neck, teeth, face, hips, back, legs. The ribs are particularly problematic, with all sorts of odd “cramps” when I move at a different angle and especially when I compress my stomach bending over to tie shoes or similar – almost feels like a rib is bending over and pressing against my organs. Weird af!
My reflux seems to get worse with time and more difficult to control with meds. Can sometimes make sleeping difficult, though mostly I control it by not eating after 3pm. Almost constant headaches and tinnitus. Finding it more and more difficult to concentrate on anything for more than a short while – reading a book or anything for more than a few minutes has become almost impossible. Can’t even concentrate on TV shows long enough to maintain interest, even series I used to love.
Have given up my beloved solitary walking for the past month or so because I don’t feel secure enough to do it and don’t have a suitable portable oxygen system yet, though hopefully will sort that out this week. Trying to do more weight training at home now that I have my oxygen, though even with oxygen yesterday, the consequent coughing was debilitating.
I feel like my world has shrunk significantly, if that makes sense.
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When I did a bit further research after the throwing up incident, NAC is supposed to be particularly helpful for COPD and other phlegmy lung conditions. My experience of IPF is that my cough is primarily dry and unproductive, so it may not be a useful supplement for me anyway.
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The dosage was 600mg 3x day. I think at various times I would have taken it with other pills and sometimes not. Don’t remember anything different about the day that it made me throw up, but it was within about 15 mins of taking it. When I googled for side effects, both the smell and nausea were mentioned so I decided to stop taking it.
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My personal experience with taking NAC wasn’t very positive – firstly, the smell that emanates from the capsules is revolting and after a few weeks of taking it, one day with almost zero warning it made me violently nauseous and resulted in vomiting. So, the remaining capsules I had went straight in the bin! I also had a non-stop headache while I was taking it. The experiment lasted less than a month for me.
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That’s fine, Charlene. Yes, I tend to copy stuff from Word because too many times I’ve lost posts on various forums, etc. and then had to try to remember what I wrote to re-post when the post gets lost for whatever reason. Thanks 🙂