from Italy

[guiagambi]

Hi , I'm Elisabetta I've got two different diagnoses from April 2017 to now one in Italy that declare ipf and other one in London with Ipaf ...I've not made a biopsy because too dangerous for me and for the Italian pulmonologist it was not necessary.In London the penumologist give me steriods to see what happen and my tests were very improved. From the same Ct italian med see ipf uip like , the englis med say absolutely not...But the english decide that i can continue taking only ofev - I've been taking ofev for nine months and now I'm starting to have strong side effects and my condition has worsened ... dlco 30...before 46 etc.I'm very tired ...I would like to know exactly what i've got...Sorry but you can give me some suggestion?

thanks in advance ..my english is not very good.

guia

[Hidden]

I sorry to read about issues HAVING.

Have read post.

I guess the talking about IPF or UIP but can’t agree.

If they can’t agree I Guess you have fallen into ILD brackets.

If was me I would ask about nintedanib as treatment package options.

Wile they figure it out.

[guiagambi in reply to Hidden]

hI jEFF, thanks for answering. Maybe I haven't understood your answer I'm taking nintedanib (ofev) since 9 month....but now side effects are very annoing and painful, aand the last spiro tests are worsened ... now I'm taking prednisone (steriods) for 15 days and on the 28th of feb i will do a new ct and we will see.

Grazie anyway

[Hidden in reply to guiagambi]

Hi have read few have dodgy time on nintedanib.

Guess as on nintedanib I would ask doctors about immothrepy

And is there nintedanib alternative DID read some drugs of that class can cause immune response that’s worse than disease.

[guiagambi in reply to Hidden]

That's right. ...so I have to understand what to do. ..it's difficult.thanks again for your answer.

[Caspiana]

Hello Guia.

I'm sorry it's all so confusing. And regret that I cannot help with your dilemma. I just wanted to say welcome to the forum. I cannot imagine how difficult it must be to not know exactly what you have in terms of your condition. Please do come here when you can and let us know how you are.

Sending best wishes.

Cas xx 🌹

[guiagambi in reply to Caspiana]

Thanks a lot for your answer.it is however comforting to feel understood.

CIAO

Elisabetta

[winfar]

I Am in same position. Diagnosed approx. 6years ago with ipf but no treatment just xray and ct scan obversation. Upon deterioation was treated by gp with steroids which improved my breathing so then told i did not have ipf which i was glad to hear. Now being told they dont know what the diagnosis is without a biopsy which i am not able to have because of health issues. Now told i am an ild patient with pulmonary issues but no treatment. I find it all confusing.

[guiagambi in reply to winfar]

I can understand how difficult it is...But in 6 years your health condition has remained stable, or rather more or less the same? ....I am very sorry for this confusion situation . Sometimes I think I would like to risk and undergo a biopsy. I believe that the emotional part is also important and this uncertainty makes us even weaker. But I speak for only for m, everyone of course is different. I hope for the best. Thanks again for your contribution.

ciao