IPF and peak flow

[bethtobin]

husband has ipf doing a trial so has to moniter peak flow daily has gone from 2.70 to 1.79 in 6 weeks dont understand if these are readings to be concerned about ;(

[Blodwyn]

What kind of trial? If daily readings are going down, then I would contact GP or whoever is organising the trial and run the facts past them. I once took part in a drug trial and had to come off it after 4 weeks as I was getting worse. It was not a problem.

[bethtobin in reply to Blodwyn]

thank you for advice

[tanyamarie]

Hiya, my dad has IPF, ca you say what trial he is taking part in please?

It doesn't sound to good so like Blodwyn said, defo go and see about it just to be safe.

[bethtobin in reply to tanyamarie]

thank you for advice

[bethtobin]

will find trial details tomorrow as in husbands room and his asleep, he has hosp nxt week as lung function was decreasing on last check up b4 the second dose of treatment, therefore they decided to check week prior to next scheduled dose which is monthly and done through an iv drip incase they need to take him off the trial. He previously did a trial for a year which was stopped and when all the details came back he was on the real drug not the placebo and his condition was very stable during this period but the medication is not avaliable which is unfortunate as it seemed to be helping him ;(

[maureenv]

I was started on a trial and i only managed one treatment. I went in to hospital as a day patient and they forgot i was there. I sat waiting till about 1pm when they suddenly realised I was waiting! I had to have a couple of litres of saline through the drip which took about 3 /4 hours then i had the i/v drug which i learnt was chemotherapy. It took me ages just to get back to feeling myself (i never felt better) so I refused to have the next treatment which was supposed to be the next week.

My consultant did apply to the PCT for funding to trial Rituximab which they use in the USA but because of the cost we were refused. and to purchase the drug would cost £3000 per month, needless to say we never got to try that.

If your dad is offered to trial Rituximab or Pirfenidone he should give it a go, he/ we have nothing to lose.

[maureenv]

Hi I have friends with RA who have been on rituximab and they have also got PF because of taking the drug but the consultant I had then was convinced it might benefit my condition ( i also have polymyositis which is a muscle weakness). Anyway it didnt happen so i dont have to worry about it.