hans-m-fink
Forum Replies Created
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• How long after your diagnosis of PF/IPF did you start taking Ofev?
Immdiatly. Actually my Respirologist left the choice to me & I chose OFEV.• When you started Ofev, had your Doctor shared with you whether your PF/IPF was mild, moderate or severe?
My IPF was moderate.• When being prescribed Ofev did you ask or did your Doctor offer to explain why they chose this drug over Esbriet?
Esbriet users must be careful being in the sun & I like being in the sun.• How long have you been on Ofev?
Started in 2017 after my diagnosis.• Can you outline some side effects you have experience as a result of being on Ofev?
Had all the stated side-effects you can have including losing 50lbs weight. The worst is continuously upset stomach.• Do you have PF (with a known/suspected reason for the disease development) or IPF?
I have IPF.NOTE: Stopped OFEV October/2022 thru the end of the year. Immediately felt better (except for breathing issues).
Tried it again beginning January for 2 weeks. Side-effects returned. Now I chose quality of life over Quantity. -
hans-m-fink
MemberFebruary 16, 2023 at 4:39 pm in reply to: Oxygen Delivery System when needs go upHello Robert,
I change the Oxygen flow rates “Before” getting up for bathroom visit. Then lower it when back at sitting rest.
Before doing any kind of movement or exertion, I always check the Oxygen saturation before actually proceeding. This all takes time but find that it has to be done to be safe.
Resting, my settings are usually 6-8 liters but wont hesitative to go as high as 10 if necessary. -
Hi Marilyn Cellucci,
I have the same weight loss issue as you. Also, I would not accept the view of your Pulmonologist but am convinced that the weight loss is directly related to the OFEV medications. Have not yet asked a nutritionist for advice but will soon.
Sincerely
Hans Fink (in Canada) -
Hello Charlene & Rune,
I am also seriously considering having stem cell treatment done for myself. Unfortunately clinics in Canada have so far resisted in offering it to us IPF patients.
I checked with a clinic in Michigan, USA & they would do it.
But since the pandemic struck us, the borders were closed. Now that I could travel to the USA, I am still hesitant because of the risk of Covid-19 infection.
So I’ll wait a little longer.
take care everyone,
Hans -
hans-m-fink
MemberAugust 24, 2021 at 10:58 am in reply to: Systemic Enzymes, with or without prescription anti-fibroticsHello Rebecca,
Thank you for the information on Systemic Enzymes.
I have not tried it yet but am very interested I getting all the ingredients.
Because I am currently on Ofev whose side-effects caused a lot of weight loss, decided to stop ECGC.
Where would one usually find all the items you describe?Sincerely,
Hans Fink (Windsor, Canada) -
Hello Charlene,
I appreciate your comments very much.
I think that a decision to have procedures done such as stem cell therapy, which are still largely unproven may have something to do with age & attitude of an individual IPF patient.
When you are younger, such as yourself it is different. As for me, I’m 86 years old & figure “what do I have to Lose”. If I can add a few more years that may be relative pain-free, then why not.
For the younger generation, I sincerely hope that effective cures will soon be discovered & applied.
Many good wishes to you & the great work you do on this forum.
Sincerely,
Hans -
Hello Allen,
I am curious how the stem Cell therapy procedure for the lungs was performed?
Can you provide a brief description?
Thanks,
Hans