My partner had a confirmed diagnosis of pulmonary fibroris yesterday at the local hospital based on symptoms and CT scan. His suggested treatment was do nothing and review in 3 months. I wasn't very happy with this especially having seen the video link on this site which suggested that pirfenidone can slow it down. The local hospital said it was only available on trials but suggested he could refer us to Papworth. I had a friend who had PF and he went to Royal Brompton.
Ayone know anything about either of these two hospitals and the staff.
Has anyone any experience of pirfenidone?
Steriods was the only option offered at a later stage and the picture painted of the side effects did not good. What are others experiences?
Sorry for the all the questions but I am just beginning this journey and trying to start at the best point for my partner and with regard to selecting a hospital I don't know where to start.
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carer999
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I have recently had surgery at Harefield which is combined with the Royal Brompton and I was really impressed, so much better than a general hospital. All of the staff from the tea and coffee guy upwards where absolutely brilliant.
Had a few tell tales yesterday and woke up with man flu this morning and couldn't get out of bed, been taking Benylin 4Flu which is working its magic , can't take that and paracetamol for the pain though so ribs are hurting a bit. Chest seems fine fortunetly so I think I cought it in the bud.
Oh, nasty germs abound then. As you know theres paracetamol in the benylin so that will help with the pain as well. Obviously not enough though. Grrrr. Can you take ibuprofen? That will help. I think Ive caught my cold before it develops thankfully. Get well swn!
My dad IPF and Empysema. Diagnosed in 2008 and put on no treatment at all, But other than a cough he was fine so if you are not symptematic I can see how that makes sense. So as the cough was the only problem, he had various antibiotics that did nothing to help and that was it. He had medication for the Emphysema thats all. When dads health started to decline last year, again, he was given nothing, until he saw a specialist this May who started him on steroids (prednisolone) and what a difference. For a while, he was doing great. Subsequently his health has rapidly declined and maybe it is because he had no treatment really. Who knows. But IPF has a worse prognosis than PF so with the 'right' treatment plan there should be much hope for your partner and I advise you to really push all the way for the best treatment he can possibly have.
In December last year I read about pirfenidone and asked my rheuamatologist at my local hospital (who oversees my general care) if I could try to get on the trial. He consulted the local respiratory consultant who had confirmed my pulmonary fibrosis the year previously (and advised about treatment) if she thought it was a worthwhile thing to do. She confirmed it was; rheumatologist wrote to Professor Du Bois ( at Royal Brompton who was named in the article) to ask if I could be considered. I got an appointment to go to RB in January. They did more tests than you can imagine in one morning at RB, I then saw the consultant at about 12.30 - she had all of the results. I have an autoimmune disease ling pulmonary fibrosis - not ideopathic (cause unknown) therefore not suitable for pirfenidone. However they had worked up a tratment plan - I had to go into their 5 day investigation ward for 3 days to have further tests ( this happened a few weeks later). They discovered through these that I was oxygen deprived at night ( so overnight oxygen started - also that I had pulmonary hypertension - I was passed on to this specialist group (only 9 centres in country) to have further tests (overnight stay for catherterisation (angiogram) to establish extent of hypertension. Treatment decided upon by joint agreement with respiratory group. I am now under the care of both groups - who have joint board meetings to agree treatment fo common patients.
I cannot praise the treatment I have received enough. They have tremendous facilities available that local hospitals cannot access. They are also specilst teams ( RB is one of 10 specilist hospitals for fibrosis (as is Papworth). As it happens Papworth is much nearer to me but I didn't know that at the time. However I will not move now from RB - they are excellent. Also, because they are recognised specialists, if they think you need a relatively expensive drug (backed up by their tests and expertise) and you have been through the recognised first treatment approaches, then your PCT is much more likely to agree.
I would definitely go for one of the two - everyone is great at RB but I'm sure Papworth is equally good.
Perfinidone has completed its trials that are needed to apply for approval this has been granted by the eu it is available in Japan and thru online pharmacies approoval byNICE for use in the NHS is expected in mid 2013
Cost to by would be in the region of £20 a week rising quickly to £60 a week as the dose increases
It is not a game changer I don't think but could give extra years
You need to discuss with your specialist I think you would need to pay a doctor to prescribe it as we'll as pay for it
Aprooval is expected to be for early to mid stage fibrosis
Good luck am looking into it myself for my wife but could be too late to be of any use
Mark
I believe the unit at RBH is bigger than Papworth. I've been going to RBH for many years (not for pf tho) and can echo what Perce et al have said - it's an excellent, world-class hospital and the care is absolutely fantastic, your partner won't get any better. Also they're at the cutting edge of research, so like Maggie I would never, ever go anywhere else. And they're so efficient! Test results are back in no time and everything ready for your next consultation. It's outstanding, brilliant - there aren't enough superlatives to cover it really
Plus The Crown next door is a very nice pub . . .
FF x
actually, I think their unit might be the biggest in Europe x
I am going to the Sleep and Respiratory Clinic...so far am very impressed. Have oxygen problems, started at night but also during the day now. Diagnosed in 2006 with sleep apnea/hypopnea, but now redoing tests due to progression of symptoms.
I am having an overnight study towards the end of this month and also full pulminary lung tests [with loop].
Not impressed with the lack of parking though...I never seem to be able to book the few spaces out the back. I am disabled and so can't park too far away.....so don't know if this might be an issue for carer999.
Hi Andrea. My visits are always on a Wed afternoon and I never have trouble parking, I always get a space in Foulis Crescent or nearby. I'm not disabled but on the few occasions (years ago now), when I really wasn't able to walk, I was told to phone exactly 2 weeks ahead of appt, and was then allocated a space in Dudmaston Mews. There are some disabled spaces in Foulis Crescent and I've noticed that sometimes extra spaces are reserved for that purpose. I think the Transport Dept will arrange it but am not sure. I think you should mention it to your consultant if you're having problems.
I have tried with the transport line, but will look into foulis crescent. I have to have an overnight stay in a weeks time so hopefully will be in luck. The transport line is really helpful, but didn't have a space available to book this time.
Use a website called JustPark, you can book a space in Sydney Street underground car park by the Metro Bank and catch a bus opposite which stops at the Fulham Road entrance, ok it costs but very convenient.
Both these hospitals are centres of excellence for lung problems including transplants.I'm going through the 3rd 3 month wait and see period, I have a ct scan today and see my consultant 8th Jan 2013. I wish she would refer me to any of the 5 centres of excellence.
I'm at papworth I guess both hospital are amazing ,I must say parking is easy at papworth as is getting there M11 the food it a bit boring ,but staff are great and nothing it to much I just so glad we have NHS and the wonderful hospital we do I'm on the double transplant list x
I asked my GP to refer me to Papworth even though I live in Birmingham.I had my first appointment within a week,I have now had chest x rays,breathing tests,blood tests,ct scan,6minute walk test,and even flight tests as I was due to go on holiday,all these tests were done within 4 weeks,the staff are lovely .Now I am waiting to be referred on to the specialist for IPF,as you see a general pulmonary consultant first.I have also asked for pirfenidone ,the consultant made a note to the specialist team that I am keen to try this drug ,I will let you know how I get on,when I get my appointment .I have so far been very impressed with Papworth.Linda.
Th rb is a fantastic hospital.I have been going since I was 17 & am now 55.I have had a hole in the heart repaired 3 pacemakers 2 ablations a stroke & this year diagnosed with ipf.I was put on pirfenidone &prednisolone along with my various heart drugs.It seems to be working although it causes me some nausea & tiredeness so I just try to make the best of it I work full time & take 1 day at a time.
Get referred to the Brompton, I cannot speak more highly of them. Lots of thorough test to start as short stay inpatient, then treatment appropriate. Prof Wells team the very best. To be given perfidadone you have to meet certain criteria, but other drugs are available. Follow ups are 4/6 monthly or as necessary. They are on the ball.
Me, IPF, SLE, RH A, etc. at present SATs 94% at rest, 80% ambulatory, so am on 4Ltre O2 when active, annoying at first but you soon get used to it and life carries on, and of course ' keep taking the tablets'.
Im at Aintree I have Familial IPF. My specialist consultant there said Steroids aren't suitable. If your spirometer results fall within the allotted guidelines you can be put on either pirfidadone or Nintedanib. I started on Nintedanib in February. These drugs are only available to IPF patients. All PF patients with a known cause are treated for that cause. I hope this is helpful to you.
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