Hi everyone, I am new to this forum and cant find any posts that cover my ILD, is there anyone on here with pneumonitis and how are they dealing with it ? , I was diagnosed 3 years ago and have been on large doses of steroids and a course of Mycophenolate that didn't agree with me, now they are planning to use a IV drug to supress my immune system, apart from having to take oxygen with me everywhere and all the medication upsets my diabetes life is OK
Welcome to you and l'm sure someone will be along soon with some helpful advice for you.
Take care xxxx
Hi alanloddington Welcome to our friendly and informative community. Sorry I can't help with your particular query but I'm sure someone will be along shortly who can.
What drug are they planning to use to suppress your immune system?
Have a good day.
John
they have mentioned using Cyclophosphamide over a 6 month period
Hi, a warm welcome to you.
You may find it helpful to write ILD in the search bar top right, many old posts with replies should come up. Also there is the BLF help line. The nurses are very knowledgable and should have up to date information.
All the best. P
PS I've just noticed the list of other categories on the box on the right titled Topics. 'Different lungs' may have some thing useful.
There definitely was someone who has Hypersensitivity Pneumonitis who posted on here not too long ago. Is it related to pigeon fancier's lung, farmer's lung and bagpiper's lung? Us rare types with Zebras (rare diseases) should stick together.
Keep us informed about how things are for you.
All the best
K
Yes it's very similar , but not so rare, my Consultant has between 60 - 80 people on his books with my condition. Southmead Bristol.
My mom has the same.
I really don't know much. Her oxygen level drops sometimes which scares me to death.
She uses cpap at night.
I am sorry that I cant be of any help to you. Although she just joined pumpnary rehab twice a week. Lets see what happens.
Hi alanloddington, I was diagnosed with Alveolitis seven years ago, I was on steroids and azathioprine in addition I take antibiotics 3 times a week, very recently I was pretty poorly and was sent for a ct scan, my consultant advised me that I have now developed Nsip Fibrosis, my lung function has dropped from 70% 16 months ago to just 50%, in the past couple of weeks I've had steroid infusions and the consultant discussed a drug called methotrexate, as it's just recent I have a lot to get my head around, happy to answer any questions you may have.
Best regards
Frances
Hi Frances - I also have allergic alveolitis. I was diagnosed in February and have just read your post. So far I am only on prednosolone and that works very fine for me. How are you doing today? I hope that you are fine. All the best, Susanne
Hi Alan,
I have HP, so they say, but they have not found the allergen so I am scepticle if I do have it or another type of ILD , I also now have to take tabs for diabetes, where as before I just managed it via diet and exercise . I also am on o2 when moving, but not at rest. I am on 5mgs of steroids. I am awaiting CT scan in November and am under the care of BRI in Bristol, I have been advised to see if I can be referred to royal Brompton in London due to me being only 54. They are experts in the heart and lung fields and also do trials of which I would be interested in being part of. I now live in Lydney , glos. we moved to an apartment in a grade 2 listed building overlooking a fishing lake, so more fresh air and very chilled.
Hi Kath
They can't identify my allergen either, I'm also type 2 diabetic and when I was on 40mg of steroids I had to use Insulin, at the moment I have tried mychophenolate motefil but that didn't suit, I am back on steroids (10mg) at the moment, no Oxygen whilst sitting but need 3 litres when ambulatory . I have lung function, walk test and appointment with consultant on the 22nd November, last visit he was keen for me to try cyclophosphamide over 6 months which means I have to stay in the UK ( difficult as I have a second home in Spain) .
Regards Alan
I'm just unsure they have the correct diagnosis, it's the better type of ILD to have , so I just hope they are not wasting time on looking at the wrong one. Ifs it's ipf then life span could be shorter!! So fingers crossed it is hp . I use o2 when moving only 2ltrs an d only on 5mg of steroid, but like you it created probs with diabetes, on metformin and glicazide, thankfully no insulin as of yet. Nice to have a 2nd home in spain😀
Kath
Like you Metformin and Glicazide with Victoza which is injected, just about manages to keep things mostly under control ( cheap wine don't help ) but someone's got to do it.
Hi Everyone I was diagnosed with Hypersensitivity Pneumonitis in 2008. Lungs have deteriorated over the past 3 years and have now been prescribed Mycophenolate from January. Very apprehensive about the side effects. Any help, advice would be welcome 😔
Hi Allanloddington, I am diagnosed with Allergic Alveolitis due to mold at my office. I was diagnosed in February and at present I am only taking prednisolone. I hope to avoid taking Mycophenolate, methotrexate etc as long as possible as they have a lot of side effects. How are you today - I really hope that you are fine. All the best, Susanne
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