Anyone using ESBRIET for I.P.F. or CO... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Anyone using ESBRIET for I.P.F. or COPD ?

helpmysister profile image
9 Replies

Anyone using ESBRIET for I.P.F. or COPD ?

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helpmysister
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9 Replies
daisyd profile image
daisyd

What is IPF

helpmysister profile image
helpmysister in reply to daisyd

Idiopatic lung fibrosis as a result of a APS.

daisyd profile image
daisyd

Sorry, I can't help, sounds horrid though, my niece has problems caused by an auto immune problem, and has been put on methotrexate, she is only in her thirties, not fair is it.

I can't remember the exact name of her problem but will find out, she is on my Husbands side of the family so don't think Hughes syndrome is the cause.

helpmysister profile image
helpmysister in reply to daisyd

Thanks. I need any help as possible. Doctors said that APS isn't problem right now just the damage they caused to her lungs. So, any advice, drugs or treatment is welcome. I really can realized that in a less than a month APS can do such damage to her lungs.

MaryF profile image
MaryFAdministrator in reply to helpmysister

Pozdrav, kao što sam spomenuo ranije, kao odgovor na vas. Vaša pitanja i specifične potrebe za detaljne savjete će raditi bolje ako je medicinski tim brine o tvojoj sestri, može stupiti u kontakt sa St Thomas 'Hospital u Velikoj Britaniji, koji vode u ovoj bolesti i istraživanju. Medicinski tim u Bosni bi tada imati nešto određeni za rad. ili su mogli probati London Bridge. Dao sam ti obje adrese i linkove jednom. Najbolje od sreće. Mary F x

Hello, as I mentioned previously in response to you. Your questions and specific need for detailed advice would work better if the medical team looking after your sister, could make contact with St Thomas' Hospital in the UK, who lead in this disease and research. The medical team in Bosnia would then have something certain to work with. or they could try London Bridge. I gave you both addresses as links once before. Best of luck. Mary F x

helpmysister profile image
helpmysister

Now it's up to my sister's doctors, cause i contact London Bridge. They have to contact L.B., i hope they will. Thank You very much for Your support.

MaryF profile image
MaryFAdministrator in reply to helpmysister

To je ok, s medicinske stručne savjete i neke dugoročne planove za svoju budućnost, od vas će imati bolje izglede za neki normalan život, tvoja sestra nije prvi, ona je jedna od mnogih! Sve najbolje za vas. Mary F x

That is ok, with some medical technical advice and some long term plans for her future, you will have a better outlook towards some sort of normal life, your sister is not the first, she is one of many! Best of luck to you. Mary F x

Lure2 profile image
Lure2

Hi again,

You have helped Irena. I am sure.

Good luck to Irena and take care yourself

Best wishes from Stockholm and Kersitn

helpmysister profile image
helpmysister

Thank You so so much. It's very hard for us and for my sister. She's very brave and I hope that she'll be better.

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