michael-panagiotopoulos
Forum Replies Created
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Hello Natalie,
I see your mother’s case is very similar to mine.
I am 71 yrs old and have been dealing with IPF since 2018 with Esbriet (taking only 2 tabs/day instead of the prescibed 3, because of side effects) and other helper meds, but I’m experiencing a fast downturn since last summer.
Since last Septebmer I am on O2, on a 24/7 basis with two types of concentrators; both with canulas: a large Philips Respironics EverFlo for the sitting room and a portable Inogen One G5 pulse concentrator for mobility, wich I take it with me for any (indoors) walk and especially to the toilet wich is my most tiresome time of the day. Most of the times I have to sit and rest in there for prolonged periods of time to get my SpO2 levels to climb from low 70s to the 90s and then try to walk the few meters to my couch and rest.
My pulmonologist advised me to try and maintain the SpO2 not lower than 85% and preferably into the 90s. So I keep changing the Inogen G5 O2 indicator all the time; always according to the situation. My standing up “exercise” calls for a min of 5lt/min and some times the max of 6lt/min.
In bed I set it at 2lt/min and achieve a SpO level around 95%. Lately my moving (and resting) breathing pattern has deteriorated and become faster and shallower (due to lack of pulmonary volume perhaps?) , which is tiresome and makes my ribcage bones ache.
I know this is a loosing battle and I try to fight it one day at a time…
I hope my personal experience might help you talk to your mother into making her life a little bit easier.
In any case I would strongly suggest she talks with a IPF pulmonologist for further treatments.
God Bless. -
… So sorry to hear this news, Vishal.
sometimes I do wonder if there is any tangible benefit to speak of from such controversial (chemo)therapies. -
Vishal,
Good to hear your Dad has improved re. GI condition.
I would not think a breathing deterioration would have ensued at such short time (2 weeks) solely from a 1/3 dose reduction. Pirfenidone is a slow acting medicament – if and when it works, depending on the individual – it gradually builds up or down in the body. These periodic ups and downs in breathing are probably more due to other causes. It’s part & parcel of the whole PF “package”. It would take a full and thorough pulmonary check up/assessment compared to the previous one, to see if any changes (for better or worse) have taken place at all.
God Bless.
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Hello Vishal,
I feel very much sorry about your Dad’s condition.
I have also been on Esbriet for almost two years with similar side effects (not to mention constant headaches, fatigue and dizziness) since the beginning.
After consulting with my pulmonary MD I reduced the daily dosage by 1/3, i.e. I take 2 800mg brown pills instead of 3; and sometimes (when headaches or upset stomach are intolerable) only one. It has reduced side effects by a significant proportion (about 80%).
It remains to be seen in my next full lung check up what is the cost of the experiment…
All the best to you and your father,
God Bless.
P,S. you can fight diarrhea with Oregano oil or tea (it’s very bitter but it works) or just use plenty plain dry Oregano on salads, meat, fish, or what have you…
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Hello Vishal,
I feel very much sorry about your Dad’s condition.
I have also been on Esbriet for almost two years with similar side effects (not to mention constant headaches, fatigue and dizziness) since the beginning.
After consulting with my pulmonary MD I reduced the daily dosage by 1/3, i.e. I take 2x 800mg brown pills instead of 3; and sometimes (when headaches or upset stomach are intolerable) only one. It has reduced side effects by a significant proportion (about 80%). No need for supplement O2.
It remains to be seen in my next full lung check up what is the cost of the experiment…
All the best to you and your father,
God Bless.
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Hi Steve
Instead of stopping altogether for a while, try trimming down the full dosage. Like taking two 800gr pills daily instead of three. That’s what I’ve been doing for the past year due to the headaches I get every day. It kinda helps. But do consult with your doctor first.
God Bless.
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Hello Malcolm,
indeed every person has different reactions, symptoms and progression scale. All I can say and do is patience (we’re “patients” after all) New therapies are surely on the way, so just try to hang on there!… It’s really beneficial to keep active as much as possible, especially if Esbriet drags you down and induces horrible fatigue, as is in my case. Add to it the covid19 compulsory lockdowns and you have a perfect brew for lack of mobility and staleness!… so keep exercising those muscles. BTW, one of the reasons I avoid going about town on errands, shopping, etc, as I used to, is not so much covid fear as the fact that I can’t stand a mask on my face because it restricts air inflow and feels suffocating, especially when it’s hot out there.
Keep fit and God Bless,
and as it seems this is now becoming the “new normal”, why not come to Greece next year!
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Hello Group,
Interesting finding so many similarities but also differences between our personal IPF journeys here. I’ve been on Esbriet ever since the diagnose last year (early 2019) with some “annoying” side effects. Fatigue, Headaches, upset stomach with some loss of appetite, occasional nausea and dizziness, some skin irritation…
I do breathing and physical exercises almost on a daily basis for rehabilitation as it has helped. Constant dry cough is my companion, especially after exercise or a meal. I do take plenty of nutritional adjuvants (VitC, D, Zinc, Serrapeptase, Nattokinase, herbal teas, Homeopathic remedies, etc…)
After the first six months on Esbriet, I had to scale down from the full 2403 mg/day dose (3x801mg) to 2x801mg/day and some times only one 801 pill, especially when I’m trying to do some outdoor activities… The good news is that my latest CRT and spirometry & PFT test showed steady parameters (even a small improvement in some) from the last test 6 months ago.
The point of it all is to delay as much as possible the scarring process, until a potential cure -hopefully- comes along: https://medicalxpress.com/news/2019-09-treatment-pulmonary-fibrosis.html
Keep fit and God Bless
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Hello Malcolm,
sounds great you got rid of Ofev’s side-effects. I’m on Esbriet since June last year and my main complaints (after titrating and reaching full standard dose of 3 x 800mg daily in late July) were heavy stomach, slight nausea, tiredness and -worst of all- headaches. The MD recommended reducing dosage and I have finally settled on a 2 x 800mg protocol. Most side effects have been dealt except for the headaches that still pester me and a slight muscle heaviness for a few hours after the dose.
I live in Greece and sun is our middle name, so I was expecting strong dermal reactions on UV exposure but fortunately there was only minor eczema-like redness after spending more than 1/2 hour unprotected under the sun. So I went for a very gradual resistance and tan buildup by slowly staying for longer times under clear a sky UV exposure but not the direct sunlight. Eventually it seems my skin got “acquainted” to this and I get no more reactions worth mentioning.
I hope these notes are helpful,
God Bless
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Hello all,
Regarding @wendy-dirks immunosupressant use, it might be prudent to follow the MDs recommenndations IMHO. I have been on Pirfenidone (Esbriet) which is also an immunosupressant, for about a year after having fought with a few side effects (tiredness, headaches and upset stomach, being the most annoying) and managed to live with them. I also take a variety of supplements as directed by my homeopath MD. My January CT and lung tests showed no marked deterioration and my next assessment will be in June.
@charlene-marshall , I’m looking forward to your new article.
Keep Healthy!
Mike
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Hello Charlene,
I do agree with you this is an opporunity for ILD patients to profit from COVID19 “collateral benefits”, provided that one can keep evading the actual bug for as long as needed, but like you I am just an average layperson when it comes to technical jargon and delving into medical minutiae, so one can only hope that some benefit for all of us will accrue in the end. One interesting view I read on the subject is that people on immunosupressants (like e.g. Pirfenidone) should be able to weather more lightly the after-effects and inflamatory action of the COVID virus on the lungs. Another silver lining perhaps or a mixed blessing?
God Bless.
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Hello group,
for quite some time now I have considered there may be possible “windfall benefits” for IPF patients, coming from the COVID19 storm. In other words I was hoping for a silver lining in this bleak atmosphere, stemming from the efforts of combined internationally focused research, looking for cures and therapies for coronavirus victims, especially regarding lung damage, as it bears similarities with IPF.
Eventually, I came across this article in the “Jerusalem Post” that touches upon Wendy’s (and our) concerns:
It seems, my hunch was not …unfounded!
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I started Esbriet 2 months ago. I asked the pulmonologist who performed BAL bronchoscopy and gave me the official diagnosis for IPF and he responded: until the end or a new therapy comes along.
The point is that even Esbriet effect on IPF (with all its concomitant side effects) is only on a probability percentage basis when contrasted with just a placebo:
To the best of our knowledge, this is the first intention to treat real-life study showing an increased 3 years survival rate in patients treated with Pirfenidone and a survival benefit of 30% compared to patients treated with no antifibrotic agents.” (source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6251092/ )
My point being, is it worth it? Going through all the debilitating side effects (I am being plagued these last 15 days with splitting headaches, dizziness and fatigue, to the point that I need to stay home and inactive most of the day) for a mere 30% chance of life extension, …at this cost?
God Bless.
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Same here. General loss of appetite, and gourmet dishes don’t seem tempting enough. In the space of one year I lost about 12kg.
Now I go for smaller portions to avoid excessively burdening or upsetting my stomach. Generally all flavours taste the same as they used to, except my old favourite spicy sauces which have lost appeal and were moved to the avoid category . Instead, I go for more fruit and salads due to their juices and eat less meat… All this before I started Esbriet which then made things more difficult. -
…thanks Charlene. After a quick search I found many Rhodiola supplements selling online, with different Rosavin milligram concentrations.
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…very interesting development.
What would be the rhodiola rosea or rosavin dosage human equivalent, according to this experiment?
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Hi Betty ( @betty-edwards )
Thanks for your feedback. Eventually I did start Esbriet 3 weeks ago, and now I’m on phase 3, i.e. triple pills three times a day. Side effects so far are mainly a constant fatigue, an upset and heavy tummy coupled with a loss of appetite and an increase in my blood Eosinophila cells population which, according to my MD, is an expected reaction to IPF and the drug. If by the end of the 6th week I’m still relatively OK, I’ll switch to the triplex pills (801 mg. each) and see how it goes.
On the other hand, I’m also still taking my homeopathic remedies…
God Bless
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Hello Meral ( @meraltemel )
I’m sorry your Mother is so troubled with Ofev nausea.
It’s precisely because of this side effect that my pulmonologist proposed, and I have opted, to go for Esbriet (Pirfenidone) which is sort of milder regarding nausea. Of course there are many other drawbacks like skin sensitivity to sunlight (UV radiation) etc. Have a look here https://www.drugs.com/esbriet.html
Why don’t you talk to your doctor about it? It is also very important to take the medication on a full stomach after meals.
God Bless,
Michael
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Hi Charlene, thanks for replying.
As much as I’ve searched the web for salt pipes and IPF, so far nothing relevant has popped up. The one thing I discovered was that salt (in masks, surfaces, and even as nasal washes) can inhibit/protect from all sorts of micro-organisms, including SARS-CoV-2. So I deduced that an occasional inhalation session prior going out and mingling with other people may help keep the bugs at bay. But that’s just my own “non-scientific” reasoning.
[https://hospitalnews.com/salt-coated-masks-and-air-filters-to-potentially-slow-the-spread-of-covid-19/]
I intend to ask my pulmonologist next time I see him (although it seems a long shot during these covid days)
If I have any news I’ll let you all know.
God Bless
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Hello Charlene, I hope you are doing well.
I was searching the web for info on the use of salt pipes for IPF patients and found your thread! Since you’ve been using it from time to time, my question is whether there are any long-term benefits (or on the other hand, perhaps contraindications) with their use.
I have recently acquired one [from this eshop: https://goodhealthnaturally.eu/bronchial-health/137-cisca-easy-salt-pipe-1139-5999881111088.html to help me with my cough bouts but my son thinks it might do more harm than good by further irritating the lungs and speed up the scarring process…
Any thoughts or actual experience are welcome,
All the best and God Bless.
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Two years on Esbriet here. During first year I also was on a 3×800 dose and had permanent headaches, fatigue, reduced appetite and upset stomach. Reduced to 2×800 daily and feeling 70% better. except for the stomach part. Fatigue sometimes hits me for a couple of hours after taking the pill. So the second dose I usually take before bedtime so it doesn’t bother me as much,
I hope this helps
God Bless
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Hi,
my latest CT (June 2021) scan showed no change from previous (Aug 2020) examination whereas the pulmonary function tests (spirometry, FVC, DLCO, etc) showed a moderate reduction in diffusing capacity for carbon monoxide (DLCO).
Note that some adverse “noise factors” should be taken into account, like the COVID lockdown with its home-bounding restrictions as impediment to my regular rehab exercise outdoors but also indoors due to a badly fractured wrist (known as Colles Fracture) from which I am still recuperating…
Hoping for a more benevolent summer,
All the Best.
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@steve-dragoo
Hello Steve, thank you for swift reply and an email follows shortly.
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Hello Tom,
thanks for sharing your experience with us!.. I have read about NAC and will talk to my MD about including it in my regimen. May I ask you how you’ve managed these 2+ years with Esbriet’s multiple side effects?
Regarding vitamin D deficiency, it is a fact that most people who live in apartments in our modern cities and work 9 to 5 in office buildings most of their lives sheltered from sunlight, do have a problem with this vitamin.
IPF being hereditary is a possibility. On the other hand, I am surprised by the increasing numbers of IPF cases in our time! I don’t recall so many during the 60’s, 70’s or 80’s, or even before that, in our parents or grandparents time…
God Bless.