[Yolanda Germann]

Greetings Kate

 

Yes it is a good Idea to take proteins with the Esbriet. Since I take some spoons of yoghurt with the Medication I have no more stomach problems.

I am only 6 months on Esbriet and have to find my way.

I have contacted Roche here in Switzerland to ask if they have some good ideas as to having no appetite and in my case why the blood pressure sinks after intake of the Esbriet.

They confirmed that one should regard the weight of the person to the doses of the medication.

They are very helpful and it does good to know that not only high gains are important to them but also the humans. All the best ALL OF YOU

 

[Yolanda Germann]

This is interesting to read!

As for here in Switzerland this medication is not very long in use yet.

We are always a bit slower as others J

Normally the calculation in doses of medication the weight height and age will be an issue. WHY here not?

I did ask may Pulmonologist if I coud reduce the medication. She ordered 2 twice 2 of the 267 mg.

As I have still a lot of the 801 mg. I take Esbriet like that…

In the morning 2 tabs. at 267 and in the evening I cut the

the 801 mg.in half.

I know that is 134 mg less as prescribed. As far as now I am doing well.

Of course when the box of 801 mg. gets empty I will obey *g*

Please ask if my English is not understandable as my language is German

All of you suffering the same symptoms I wish well.

[Yolanda Germann]

Hi Dinyar

I did not know that :_) Thank you very much for the tip.

Taurate I did not know. Here is what I learned…

Magnesium taurate contains the amino acid taurine.

Research suggests that adequate intakes of taurine and magnesium play a role in regulating blood sugar. Thus, this particular form may promote healthy blood sugar levels

Magnesium and taurine also support healthy blood pressure.

WOW how helpful it is.

Thanks and take care

Greetings Yoli.

[Yolanda Germann]

Hello Lee Bridges
Like you I had Cordarone (Amiodarone) for 5 Months.
About 3 months before I had a lung x-ray. All OK there.
I was prescribed tat medication for an irregular pulse due to an Aorta Insuff…again due to a Myocarditis.
After the said 5 months the Cardio Doc. wanted to have an x-ray taken of the lung.
One could not believe it. The picture showed a lot of cauliflower at the base of both lungs. >> Fibrosis!
Since then I have been on the medication Esbriet. Thank the Lord that it is available also in Switzerland and gets paid by the insurance.
I wish you well Lee Bridges.
Love Yoli

[Yolanda Germann]

Greetings Karen

 

Thank you about your kind remark about my shortened name.

You are so right about taking protein with the Esbriet. I have tried even to take the last one just before I go to sleep. What happened? I woke a few minutes later and had to vomit.

I was really suffering for over a week.

Vomiting and diarrhoea…

I have now started again with a weaker medication. So far I feel fine and hope it stays that way.

Take carte and all the best wishes for you too

Hugs back

Yoli

[Yolanda Germann]

Oh Malcome Mann.. tears are running down my cheek  *lol* Beer tastes awful.

 

No joking aside. My cough has stopped after about 5 months of taking Esbriet  3 times 801.

 

But I have had problem with weight loss and being sick. So I have been allowed to reduce the doses to 3 times 267 mg.

 

I do well now and the coughing stayed away.

 

I wonder if there is an issue about the weight of a person and the medication. If a man of a weight say about 90 kg needs the same amount as a person of say 60 kg??

 

I wish you all the best and that your cough leaves you soon.

 

Love Yoli

 

[Yolanda Germann]

@ George Beck, Bob Hodges, Doug Jones

Thank you very much for your replies.

It helps me to realise that there are others who take Esbriet for quite a while without too great side effects.

Let’s see how I get on with the Treatment and what the lungs look like in a few months/years

Take care all of you

Grettings Yoli

[Yolanda Germann]

You will need a blood test before you start taking Esbriet and at monthly intervals for the first 6 months and then every 3 months thereafter whilst you are taking this medicine to check whether your liver is working properly. out of www.

I am now in the middle of these tests. All well as far as now.
How is it with you all?

[Yolanda Germann]

Hi Mal
Yes, I know that as well . I had no appetite for 4 weeks. But I forced myself to eat small portions. That is already possible! I have now discovered porridge again! I wish you all the best.
Greetings Yoli

[Yolanda Germann]

Thank you Karen for your supporting words. Since I eat protein when taking the medication I have less stomach problems. I wonder if anyone simply takes doses of 2 tabs instead of three. That is of the 802 mg. I know I react strongly to medication and always need less as the prescribed amount. It is now over a week that I have reduced the amount of the Esbriet of 3 to 2 daily.

[Yolanda Germann]

its me again. I have started to take only 2 Tabl of Esbriet daily as it really gives me a lot of indigestion.
Does anyone read here ?

[Yolanda Germann]

Greetings to @all.
I have been taking Esbriet now since 6 weeks. I do have problems with the stomach and take one tab. of a Proton pump inhibitors like Pantoprazole (here in Switzerland)
I need to take a few antacids as well.
Another question I do have. As I react strongly to all medications I have decided to just take 2 tab. Esbriet daily. Do all of you stick to the doses 3
With this doses my dry cough has stopped and I like to try it this way.
It is nice to be in this Forum where there other people with the same problem. Thanks for everything!

[Yolanda Germann]

Hello Lee

Yes that was more or less the way I started to realise that something was wrong.

Although I was already off the Amiodarone at that time because the Cardiologist ordered an x-ray after I was taking the medication for 5 months.

He put me on another tablet because of an irregular heartbeat and extra systoles.

I just take ¼ of that medication because it lowers my blood pressure too much.

At that time I was coughing and also had problems with getting enough oxygen.

It was a while until my pulmonologist offered Esbriet as an alternative to oxygen.

I am still trying out the proper doses that I endure.

Take care Lee

 

love Yoli

[Yolanda Germann]

Greetings Lnour

 

Thank you so much for asking your Father about the doses of medication, especially for  Esbriet as well as  Ofev.

I am now happy with a smaller dose of Esbriet (so far)

Let’s hope it stays like that and one can get on with life and not always think about ones health.

All the very best to you Lnour

and again a big thank you to your Father.

Love Yoli

 

[Yolanda Germann]

Hi Paul from downunder

You really had a bad time above all with your skin. I understand that the sub is stronger and you have more sunny days in Australia than we have for instance here in Switzerland.

It shows again that a smaller dose works as well. Now that I take 2 x 2 Esbriet of the 267 mg I feel myself better.

I seldom go into the sun and then a put on a skin protector factor 50.

How good to read that your breathing and liver function have not deteriorated in the last 6 months.

I wish you all the very best

Take care

Love Yoli

 

 

[Yolanda Germann]

Thanks for the answer Karen
It’s always like that with redheads. Even during the operation, the surgeon said … the red-haired ones always tend to bleed more.
I am now trying again with two tablets. Let’s see!
All the best!