New drug trials in Bradford

[twinks1954]

Hi Everyone,

I read on here recently about new inhaler drug trial in Bradford. I decided to contact the Consultant who is involved with this - Dr Saralaya at Leeds Hospital. I emailed them Saturday and got this back Sunday.

Dear Ms McNamara

I have asked Dr Saralaya and he has luckily come back to me this Sunday evening with information for you –

It’s called QVA 149

It is to be launched in January 2014 and is called Ultibro

If you would like to take part in one of our trials you can call Dr Saralaya’s clinical trials unit on 01274 383383

I do hope this is of help,

With best wishes,

Suzanne Wynne-Jones

Customer Services

Spire Leeds Hospital

Tel. [phone]

I think I would be really interested in doing the trial and will contact them.

Hope admins dont tell me off for putting this post on but I thought it would be of interest.

Take care xx

[appyalison]

A very interesting blog. Thank you. Good luck with the trial. Alson

[KingoftheCocktails]

Very interesting. thank you

KOTC

[Hidden]

Good of you to put yourself forward for the benefit of others. Joyce

[Hidden]

Is this the enzyme inhaler? I saw an article on Asthma UK website. Great to have some hope with new treatments to try, especially as the article seemed to indicate that it would be a long time before it's available - January isn't far away!

[jankhan]

I saw Consultant Mr.Saralaya at his clinic at St. Lukes Hospital, Bradford last last Wednesday and was given a prescription for this (Glycopyronium) Seebri.. I have a FV1 of 29% and I'm waiting to have Endobronchial Valve implants in the very near future..

I will post how I get on with the new inhaler ...

[13lavinia in reply to jankhan]

Hi Jankhan I am taking an interest to find out if you have had your endobronichal valve surgery as yet as I am in the process of making enquiries for myself but are rather worried as it has yet not being carried out long enough to identify any problems in the long term. I am going to arrange a consultation at the Spire Hospital Leeds. Keep well and please let me know how things are going .

[jankhan in reply to 13lavinia]

Hi..

I had the procedure on the 28th November at St. James's, Leeds.. I was admitted on the Wednesday evening the night before and was in a small ward of 6 beds.. I was first on the list the following morning (Thursday) .. the procedure took about 3 hours in theater under anesthetic and I had 5 valves implanted in my right lung.. I awoke in the recovery room and after

a couple of hours was taken to the high dependency unit for that night .. the following morning I was told that subject to an x-ray to make sure all was well with the valves I could go home..

I didn't feel any discomfort and I didn't/don't feel the presence of the valves at all..

Why are you going to the Spire Hospital you could use the National Health, it may take awhile but would save you the cost..

Anyway there's nothing to fear, I wish you well and if you want to ask anything else feel free to connect..

[13lavinia in reply to jankhan]

Hi I wasn't aware that it was done on NHS I thought it was only carried out on NHS for leaks. I have a Giant bullae in the right lung and severe emphysema in left . I will make further enquiries before I go private. Do you feel any improvements having had the procedure. Thank you

[jankhan in reply to 13lavinia]

Hi..

I do feel it has made some improvement and I feel that it will help more over time.. it was my only option apart from a lung transplant and I consider that to be an option full of risks.. I did know a person who had a double transplant and avoiding infections was a major concern, food hygiene needed to be scrupulous.

Are you in West Yorkshire, which consultant are you seeing, I was referred to Mr. Saralaya at St.Lukes and he sent me to St. James's, Leeds where I have been seeing Mr.Chaudhuri.. he's been very good and I would recommend him..

Many of the consultants at the Spire also do work at St.James's..

I found that it helps to keep asking for what you want, phone the consultants secretaries with any questions you may have, I have found them to be invaluable sources of assistance ..

regards .. jan

[13lavinia in reply to jankhan]

Hi Jan, I live in the North East, I am going to ring St James to speak to Mr Chaudhuri's secretary to see if he will give me a consultation. Thanks for your help Jan will let you know how it goes.Thank you

[jankhan in reply to 13lavinia]

Hi..

She is on 0113-2068728..

[ginachron]

Is the Seebri being given in advance of the Ultibro? I ask because seebri is already being prescribed. x

[Hidden]

That's interesting, please let us know how you get on. TAD xx

[SusanneH]

Hi, i am from Bradford and i was invited to take part in this trial, but unfortunately i had been unwelll with a chest infection and was taking antibiotics so i couldnt go in it because you have to be well to get involved.They said they would get back to ne later so good luck i might see you there.

[helingmic in reply to SusanneH]

I just wonder who this drug is for if you have to b well to take it!

[SusanneH in reply to helingmic]

Hi you have to be well to go on the trials for new drugs or inhalors because they do alot of breathing test

[Hidden]

Thank you,good news,there's more hope and so soon jan.20014 ,just in time for the snow. Hospitals will be busy,I know if I can get a decent inhaler I can survive.good luck with any trials,I would do it,but can't travel to far.

[kimmy59]

Sounds very interesting, hope you can keeps us updated.

Kim

[Catnip]

I was switched from Spiriva to Seebri and the difference was amazing. I hope that the "new" one is just as effective!

Cheers

Catnip

[helingmic in reply to Catnip]

Catnip,This sounds interesting. Can you tell us what sort of difference, please?

[bertshep123]

Hi there,have just rung Dr saralaya clinical trail people and the chap I spoke to was very helpful and nice to talk to,so I'm hoping I qualify to do the trials ,thanks for posting it,best wishes to all,Anne

[katieoxo60]

Thanks twinks 1954 for the most recent updates on new drugs for lung conditions, hope all goes well for yourself on the trials. Best wishes

[bernardette]

Thanks for the information. I too have just rung the clinical trial people - hope I qualify.

[Shadwell]

I also changed from spiriva to seebri and have had a great improvement great site allway's very helpfull .

[Hidden]

Made a note of that Twinks...well done and thanks, Lovelight xx

[Hidden]

I thought I recognised QVA149 from way back, so searched again, here is US gov trials on it :

clinicaltrials.gov/ct2/show...

Good luck with the trial, look forward to hearing updates.

[junespoon]

Hi Twinks, very interesting, is this a new inhaler, thanks for the info, keep us informed please. X