Hi. I have Pulmonary Fibrosis and my consultant is considering Cyclophosphamide IV treatment - has anyone experienced this?

[SMS2006]

[dall05]

Hi SMS2006, I had 6 doses of cyclo over 3 months. Its a kind of chemotherapy but not as strong. Do they suspect that your PF is caused by your Immune system attacking your lungs or even a type of rheumatoid arthritis. If so then you have a similar problem to me. I had no side effects from the cyclo so you should have nothing to fear.

Good Luck.

Tony.

[SMS2006 in reply to dall05]

Thanks Tony. I have scleroderma (auto immune disease) and I was diagnosed over 2 years ago with IPF. I have been on steroids and 2 other drugs but condition now in decline according to latest ct scan. nervously waiting decision from consultant but i am sure it will be ok

[dall05 in reply to SMS2006]

sorry to here your condition has worsened SMS but don't despair as I was in a similar position 2 years ago and have since improved. A CT scan had shown a progression of the fibrosis and my sats were getting lower so all was not well. At this point I could have gave in to it but I decided to fight instead. I exercise hard and have got myself as fit as possible. Over the last 2 years my sats have improved and my 6 minute walk distance has gone from 300 metres to 480 off oxygen.

Good luck with your CT scan and whatever the results stay positive, I did. Tony

[SMS2006 in reply to dall05]

Thanks Tony. That's great that your sats have improved..you have the right attitude

[tarana in reply to dall05]

Hi Tony

Sorry to know that you have PF. I too was diagnosed last year with auto immune but am no treatment as yet. Doc has suggested cycolphosmamide but I am not having the courage to go on it as I have read so many negative reviews on it. You say that you had 6 doses over 3 months. Are you still having it and what is your dose? If you don't mind me asking what is your age and how advanced is your illness. Sorry if this is an intruisive question but I am trying to gauge my condition as compared with others, so I hope you don't mind me asking you this.

[maggie44]

Hi SMS2006

I have pulmonary fibrosis ( caused by Sjogren's syndrome an autoimmune disease). I too had this treatment a couple of years ago. It seemed to be quite effective - contrubuting to the development of the fibrosis slowing down. In fact it has not worsened for the last year. Unfortunately I now also have pulmonary hypertension (also caused by SS) and despite excellent treatment at Royal Brompton for both conditions my breathlessness has worsened quite a bit.

Maggie

[SMS2006 in reply to maggie44]

Hi Maggie. Thank u for your reply. Sorry to hear about ur pulmonary hypertension. Hope you feel better soon.

[maggie44 in reply to SMS2006]

Hi SMS2006

Meant to say that I didn't find the cyclo too bad. I did feel rather sick the following day but they gave me medication to deal with that which was fairly effective. Also I was tired for a couple of days. I must admit that I didn't really feel up to driving myself back from the treatments, so was glad to have my husband with me.

I do hope your treatment goes well and that you have a positive outcome.

Maggie

[SMS2006 in reply to maggie44]

Thanks for this info Maggie and your kind words, much appreciated.

[BugsBunny]

Hi SMS2006

I had 6 doses of cyclo over a 6 month period for pulmonary fibrosis caused by Rheumatoid Arthritis. I felt dizzy and they had to give me anti-sickness medication. I needed someone to accompany me when I went home and then I had to go to bed for a few hours. If you can cope with pregnancy then you can cope with cyclo (sorry, SMS2006 I don't know your gender) i.e. the treatment and the side effects weren't too bad. The cyclo treatment (together with the subsequent oral immune suppressents) really improved my condition. Unfortunately, like Maggie I now have pulmonary hypertension (PAH) and my breathlessness has worsened. Though, I am ever the optimist and I am just waiting for the Royal Brompton to hit upon the right treatment for my PAH. Good luck with your cyclo treatment. Regards Mandy.

[maggie44 in reply to BugsBunny]

Hi Mandy

Who do you see at the Royal brompton for your PAH? Dr Wort or Dr Merino?

They have put me on 50mg of Sildenafil 3 times per day ( I started on 20mg). My echocardiograms show an improvement in the pressure but must say I don't feel better in myself. Nevertheless it has to be a good sign. I do suffer some side effects but feel I should persevere.

Hope they sort you out soon.

Maggie

[SMS2006 in reply to BugsBunny]

Hi Mandy. I am glad the treatment worked...gives me hope. I hope your own health improves soon. Take care

[BugsBunny]

Hi Maggie

I see Dr Wort at the Royal Brompton but I am not due to go back until October. I am on Sildenafil 3 times per day at 20mg. They discovered the PAH in June and I haven't had an echo since then so I don't know if there is any improvement in the pressure. I am on 8lpm ambulatory oxygen and 4lpm when I am sitting or lying still. I was hoping that the amount of oxygen I needed would have gone down by now but all I can do is wait and see. Keep in touch (and you SMS2006).

Regards

Mandy

[Lillytan]

Hi, I hope you don't mind me jumping in on this discussion and changing the question....but i was wondering if any of you with pulmonary fibrosis have had the VATS Lung biopsy to get your diagnosis? I have I have a lot of scarring on both of my lungs but no idea as to the cause, so my consultant has booked me for a lung biopsy.

[SMS2006 in reply to Lillytan]

Hi. I had the VATS biopsy in April 2011. It went well but I had a chest drain in for 3 days before they sent me home... Unfortunately my lung wasn't fully inflated and I ended up back in hospital with a collapsed lung and another chest drain. Just make sure they are happy with your x-rays before they send you home!

[Hidden in reply to Lillytan]

Has your consultant ruled out a bronchoscopy & bronchoalveolar lavage instead? I think that is slightly less invasive but as far as I know can still allow them to give an accurate diagnosis. May just be worth asking at least. Mine was done in half a day and no problems afterwards.I would not hesitate to have that done again.

[SMS2006 in reply to Hidden]

Hi Lillytan. My experience was an exception to the rule. It is very straightforward. Good luck. SMS

[Joolsh]

I had this about four years ago I was on oxygen couldn't do two shops at local shOping centre, going out just wasn't fun, I had auto immunune disease, methotrexate scarred my lungs at beginning a few years earlier that's how I ended up with pulmry fybrosis. I got six transfusions over six months but was asked to stop because I was getting assessed for lung transplant and the team at Newcastle wanted to make sure the cyclo was not also improving auto immune disease. I was sick severely for three days after but results were wonderful, I was on two litres at time and could go to shops again and enjoy and even come off oxygen we had two holidays in Tenerife the following two years. This year my condition changed for worse went from two litres to six, I was working when first had it second time I took it I had been retired for two, three treatments no effect second time round. I do believe very condition although the same affects them in different ways and so does treatment but I would try anything once incase it could work x good luck and take care of yourself at the end of day it's your choice you can always stop if it doesn't work for you,x