Low lung function

[budleigh4]

I suffer from chronic extrinsic allergic alveolitis, and pulminory fibrosis

I saw my specialist yesterday after breathing tests and my lung function has decreased by. 20 per cent n twelve weeks and now only have 30 percent function, not sure

How low you can go, if you are at a lower rate please let me know

Good luck to everyone

Mike Peskin

[skischool]

Mike sorry to hear about your decline,i am rattling on at 22% as are many others even worse,fortunately still quite mobile on ambulatory O2 so crack on friend plenty of life left in you yet,,,,,,,,,,,,,,,,,,,,,best wishes skis and 100% cat x

[budleigh4 in reply to skischool]

Many thanks

[Caspiana]

Hello Mike.

I am at 35% now. How long can you go? Well I have a friend who is on something like 20% but has lived with oxygen therapy for quite a few years. Many of us here have had a very poor lung function for a long time but we are managing. Are you on oxygen now? What has your pulmonologist suggested?

Sorry to ask so many questions.

Best wishes to you.

Cas xx 🍁

[budleigh4 in reply to Caspiana]

gm prendisolene daily, tried also azothyoprin but harmed my liver, then tried cyclophosamide but made my bladder bleed so in hospital 4 times in a year,

Can I help any more

Mike

[Caspiana in reply to budleigh4]

I also take Prednisone daily. Has he or she recommended pulmonary rehabilitation? And are you on oxygen?

[Watfordgirl]

Hello budleigh4,

I don't have your condition but I'm lower than you - in the 20% but not sure how low because I've been on so many antibiotics and they won't do LFTs for six weeks after you stop them.

I'm wondering if you were ever refered to a specialist for your condition? It is worth asking for that to be arranged. You could contact your consultant and ask if this would be possible in light of the fact that your lung function is dropping. Or go to see your GP and discuss it with them.

I live very near you and I'm wondering if you're getting enough support locally? You do have to jump up and down a bit at times to get things moving.

Take care and keep battling on! Sue

[mrsmummy]

Quite a few on here are under 20%. The lowest I have seen reported is an FEV1 of 14%.

[Salmo]

Is that FVC or DLCO. Irrespective, hope you are in oxygen. Certainly from literature it seems that anyone with DLCO lower than 40 needs to be on oxygen.

I have seen people mention FVC of 15% in some posts and and even values of 10% (not certain if FVC or DLCO). Unfortunatley there is not very much information in the literature. Perhaps the testing becomes meaningless when you get to very low levels as doing the tests gets more and more difficult and the data so variable. I even struggle with the tests and my FVC is 60 and DLCO 35.

[skischool in reply to Salmo]

Not everybody needs to be on O2 regardless of the FVC levels.blood gas analysis and other factors determines our need for ltot or ambulatory O2 it is quite possible even with an FVC of 30 % that you may not require oxygen at this stage Mike,hopefuly you have had or will have a good discussion with your respiratory consultant and agree a long term plan for a future which i hope will be as long as the universe.good luck Mike

[Salmo in reply to skischool]

Good point skischool. I should have been more specific and said that I hoped that budleigh had been assessed for oxygen rather than being on oxygen. If the value mentioned is a DLCO of 30% then that is very often associated with significant desaturation in PF patients and my concern is that any value dropping from 50 to 30 may suddenly put someone in a position where they start to desaturate on exercise and that can cause problems. Sometimes specialists do not keep on top of this so patients need to be aware of this complication.

[timCHP]

Hi Mike

I have the same condition as you - chronic EAA with Fibrosis. I’m at 35% and dropping. I’ve done better with prednisolone as taking it with no probs. Also just done a course of cyclophosphamide, again with no side effects, but also no actual effects, so not so useful. Have you been offered Mycophenolate? I was on it for a few years and it may have slowed things.

20% in 12 weeks is a big decline. Do you know the cause? Have you had a chest infection?

Also, did you ever find out the trigger for your allergy in the first place? I never found mine, many don’t. And it doesn’t necessarily help if you do, as the condition continues even if the allergen is long gone. But for such a big drop, maybe you were exposed to it again?

My decline is fairly relentless, although not as quick as your last drop. I’m at 35% ish now, and they reckon I’ve got 2 to 5 years left. I’m 45 so a transplant is my best and only hope. I’ll probably be put on the register next year.

I haven’t come across that many others with EAA (called CHP now by my docs) so would be good to keep hearing from you.

All the best

Tim

[budleigh4]

Thanks, do you take warfarin, reason I ask is the combination of cyclophosamide and warfarin made by bladder bleed and made me go to hospital four times in twelve months so specialist took me off both .no specific reason for my drop in lung function we seem to be a very small club of people with chip, only good side is that medical teem are more interested in us. Do your hands ever turn blue, are you on oxygen

All day and night

Where do you live

Regards and good luck

Mike

[timCHP in reply to budleigh4]

Hi Mike. I don’t take Wafarin so that’s probably why the Cyclo went OK. Never been offered it. Prednisolone and mycophenolate always seems to be the standard drug combo for CHP. I even went to see a specialist at the Mayo Clinic in the US and they basically said the same. I did have some allergy testing in America and I take drops to help reduce any allergy reactions that might be contributing. These guys: lacrosseallergy.com/. Dr Mary Morris there was helpful. Her father had CHP! But not a cure, more of a backup plan. I’m about to go on to Nintedanib as my CHP is behaving more like IPF. I live in London and get seen at the Brompton. What about you?

[budleigh4 in reply to timCHP]

Thanks for your news

I live in Devon and my consultant is at the royal Devon

And Exeter, a very good man, but they can’t work miracles

Best wishes mike

[Stevennn2003 in reply to timCHP]

Tim can you recomand someone from Brompton

Im looking for.a good second opinion

[timCHP in reply to Stevennn2003]

Hi Steven. I see a Dr at the Brompton. They are all excellent there. You can find the contact details on line at rbht.nhs.uk/healthprofessio...

Good luck

[Edited to remove name of doctor]

[Stevennn2003 in reply to timCHP]

Thanks i realy need a second opinion

My lung function test decreased by 20% in 11 months and my local consultant is not worried...

[Stevennn2003 in reply to Stevennn2003]

Thank you for your help

[Phil61]

My lung function was 30% two years ago its now 19% and still trucking.

Don't worry about the numbers or how long you've got, I've been there it's not a good place. Live every day to the max and take every opportunity you still can, you'll find yourself in a much better position, trust me!!!

[budleigh4]

Many thanks

[Stevennn2003]

Hi all how is this condition diagnosed?

I suspect i nay have something like this

In 11 months fev1 drooped from113% to 93% fvc from 103 to 92

But dlco went up.from 94 % to 104%

Still struggling for a diagnostic is it lung biopsy a must?