I became breathless suddenly in August 2023. This was initially dismissed by my GP even though O2 was 90% as my chest was clear and I had no cough. A fortnight later I was able to get an appointment with a different GP who sent me for a chest X ray which showed I had pulmonary fibrosis. He bluntly told me there was no cure and nothing he could do for me and I left his office in a state of disbelief. It took a further 2 weeks before I was referred to a Rhumatologist who owing to a cancellation saw me within days and immediately admitted me into Hospital. Bloods showed elevated CRPs and also Sjogrens Syndrome. A CT scan showed extensive scarring. A week later I was discharged on a tapering dose of prednisolone commencing at 40mg a day and 200mg Hydroxychoroquine twice a day. I was gradually reduced to 15mg Prednisolone owing to severe side effects but my CRPs have remained stubbornly elevated throughout. On 2nd January 2024 I was commenced on Mycophenolate 1mg increasing to 2mg in an effort to suppress my immune system as I have been diagnosed as having autoimmune interstial lung disease caused by Sjogrens. I am also on home oxygen since this week due to my condition getting worse. I have been told I am too old at 62 to be considered for a lung transplant and have also been turned down for the antiscarring medication even though I was initially told this was the plan. From what I have read the antifibrotic medications are my only hope of delaying the ILD progress and I have also read online that others with the same diagnosis as me are still alive and doing well after 8 or even 10 years. When I asked why I never got an explanation other than we are going with Mycophenolate. Has anyone else been told the same thing in similar circumstances and has anyone had an improvement in their condition with Mycophenolate? Thank you in advance for taking the time to read my post
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DaveLister
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Hello Dave, sorry to read about your diagnosis. I have Pulmonary Fibrosis, initial diagnosis Hypersensitivity Pneumonitis, and have been on various dosages of Prednisolone for about 6 years now.
Just switching to Mycophenolate which I am finding a struggle to deal with, just posted about it in fact. My consultant plans to start me on antifibrotics in the coming months apparently.
Like you I desaturate on exertion - just moving about normally.
A few things - try to get a second opinion from another consultant re your medication options.
Secondly ask to be referred to a Pulmonary rehabilitation course. Quickly.
See if you have a local Pulmonary Fibrosis support group near you. Invaluable.
I wish you well, this is a supportive group, don’t hesitate to post any queries. People have been really good when I have asked questions. Take care.
Thank you for taking the time to reply. I have found that the hardest thing to deal with has been the speed of onset and damage. A week previous to my breathlessness I was my normal manic self. I also realise how little I knew about PF whether idiopathic or autoimmune. Huge learning curve and so many tests and procedures carried out while my condition continued to deteriorate. The support group idea is an excellent one as it would benefit me to meet others who are also fighting this disease. Pulmonary Rehabilitation was raised by Dr A some time ago but nothing since. I will pursue this with him. I sincerely hope you see improvement with the Mycophenolate soon.Warmest regards
Welcome to the forum.youve had a lot to cope with.i can't help with Yr medicationss,except prednisolone - it helps to take with food as early as possible in morn x
Thank you for your reply. I ensure that I take my prednisolone in the morning with food and I am also prescribed Lansoprazole 30mg to protect my stomach. I suffered terrible side effects with the high dosages of Pred but these have disappeared now I am on 15mg. I suffered severe facial swelling ( moon face) insomnia, irritability and an insatiable appetite. I put 2 stones on in 2 months. Gradually losing it though. I have a bone scan on 26th Jan as the Pred can weaken them. Hopefully not.Warmest regards
Hi Dave, it is hard getting the information you need, especially at the beginning. I have been on Mycophenylate for just over a year now (as well as a recently reduced dose of prednisolone) and it has stabilised my lung condition which had been deteriorating very quickly. What I didn't appreciate at the time is that it takes time to kick in (6 months +) so the prednisolone is needed especially at the beginning to keep inflammation down.
I have different conditions to you (Bronchiolitis Obliterans caused by scleroderma with overlap Sjogren's and Raynaud's) but Mycophenylate is an internationally recognised drug for autoimmune diseases with lung complications with a high success rate.
So hang in there, keep asking your healthcare professionals all the questions you need to and be kind to yourself. It's a lot to deal with but staying hopeful and grateful for what we can do rather than what we can't definitely helps.
Thank you for your reply. Really glad to hear that you have seen an improvement in your condition with Mycophenolate. I totally agree with you on the difficulties obtaining information when we receive our diagnosis. I experienced a lack of empathy from the Dr's , not I hasten to add the nurses but they are SO busy. I felt quite isolated and ill informed which took me down the line of Google in an effort to educate myself. This can be quite a frightening thing to do as you quickly see the 3 - 5 year life span which I found hard to take in. I have subsequently learned that recent advances in treating PF in whichever form has improved the prognosis. I could not agree more about staying positive and hopeful. I am also grateful for everything I still have when so many suffering with this awful condition to not. Warmest regards
I know nothing about your illness- wish I did, so I'm sorry I can't say anything helpful. But lots of good wishes. I really think you need to persist in asking your medical people for the information you need and why they won't prescribe antifibrotics.
Thank you for your reply and good wishes. I agree with you about persisting and asking questions of the Medical Professionals as they are not always forthcoming about how the illness develops, the rationale for the medications they prescribe, side effects etc. I know a lot more about PF now than I did when diagnosed but that must be the same for everyone. I also find that the Dr's have a tendency to talk at you rather than to you. A monologue rather than a dialogue but maybe that's just me. Warmest regards
I was started on pred and hydrozxy and am now on 1500mg twice daily mycophenolate and 200mg once daily hydroxy. I’ve been on the mycophenolate about 18 months now. I haven’t been the best at taking it regularly as I struggle with tablets and was told to crush them. After a bit of a fight my consultant finally got my GP to change the prescription to liquid, which has helped.
This combination has stabilised my lung condition, even without being taken religiously, so definitely persevere.
I haven’t heard of any anti scarring meds. The scarring is irreversible. Unless you mean meds to to slow it down? Apparently hydroxy does a good job at protecting organs from (further) damage. Lupus can affect the heart, lungs, skin and kidneys, which is why most people with Lupus take hydroxy.
I don’t know much about the use of antibiotics I’m afraid. I would imagine they are used as a preventative if you regularly get bacterial chest infections which can cause further damage.
My consultants have told me to ignore the 5-10 year prognosis. Things have changed with better availability of better medications. When the underlying cause of PF is known and can be treated the prognosis is far better. I’m only 46 and I’ve had ILD/PF for at least 4 years (since symptoms started) and have no intention of leaving this mortal coil any time soon! Life is difficult and challenging sometimes, but with a stabilised condition there is no reason for the prognosis to be so glum these days.
Thank you for your reply. Really good to hear that your condition has stabilised with the combination of Pred , Hydroxy and Mycophenolate. Prior to my diagnosis I took no medication whatsoever other than the odd Paracetamol. I am now on a cocktail of meds and have had my fair share of side effects. I am very good with my compliance as I want to do everything possible to improve my condition. Sorry to hear you were diagnosed so young. 42 is no age at all. Really pleased to read how positive you are. As you rightly say the scarring is irreversible and the 2 licensed antifibrotics only slow its progress. That at least is progress though and has extended sufferers life spans on many many instances. Fortunately I have not yet experienced chest infections but I am extremely careful about who I come into contact with and I am prescribed a prophylactic antibiotic 3 times a week to try to prevent such infections. I wish you continued improvement and stability with your condition. Warmest regards
My sincere best wishes. I live in the USA ,but I must tell you I received a lung transplant at age 66 1/2, and know many people who have received transplants after age 62. I would NOT take 'that you are too old for one laying down. Get another opinion.
Thank you for your reply and best wishes from the USA. I am fortunate to have visited America 22 years ago when I took my children who were 8 and 10 at the time to Florida. We had a wonderful time and received a really warm welcome in more ways than one. Really good to hear that you underwent a successful transplant at 66 and a half. Since my first post I have learned that the 2nd Consultant I saw believed I was likely too old to be considered at 62. This was not made clear at the time when he stated I WAS too old. For now I am persisting with the immunosuppressants but it is good to know that a transplant could still be an option in the future. Warmest regards
hi Dave , so sorry to hear of your diagnosis. What area are you in ? Have you asked to be referred to Papworth? . My husband had every drug possible - can’t say if it helped or not . He needed up having a single lung transplant at Papworth- they are amazing . I would certainly get an urgent answer from a consultant to explain why you can’t have one and even if still rejected question why you weren’t diagnosed earlier and get all the help you can from pulmonary nurses etc. wishing you the best of luck 🤞
Thank you for your reply and best wishes. I am in South Yorkshire. I have heard of Papworth but I cannot recall in what context. Has your husbands condition improved much with the single lung transplant. I sincerely hope so. As indicated in my initial post I was dismissed as having nothing wrong with me in my initial dealings with the GP and A and E who believed I had suffered a heart attack. I hadn't by the way. There was therefore a delay before I was sent for an X ray which showed the PF. I have subsequently learned that the second consultant I saw believed I was likely too old at 62 to be considered for a lung transplant whereas during the consultation he said I WAS too old. So perhaps that option may still be available to me. Warmest regards
hi Dave, I was diagnosed with hypersensitive pneumonitis after two years being told it was asthma. I have also been diagnosed with heart failure . I am on prednisolone and have been for the last three years I was also prescribed mycophonelate a year ago , It appears now it’s not slowing things down as hoped so now my doctor wants to stop the prednisolone as it’s not good on high doses long term. As soon as I exert myself my oxygen drops and I’m breathless and coughing. I was told I’m being referred to see wher we go from here. I hope you find that the mycophenolate helps as you seem to have been diagnosed quicker than I was. Please update as and when you can.
Thank you for your reply. Your experience appears to mirror mine somewhat. I think it took 6 weeks from my initial breathlessness to diagnosis and another 6 weeks to be commenced on medication owing to the fact I was initially dismissed by my GP and A and E and the time delay in getting a consultation. That's 3 months with no treatment which obviously resulted in a lot of unnecessary damage to my lungs. Like you, I am very breathless on exertion. Rapid pulse, low Sat's, dry cough and gasping. Oxygen does help but thus far I do not require it at rest. Long term use of Steroids particularly at high doses can cause terrible and irreversible damage. Skin thinning, diabetes, brittle bones to name but a few. I am relieved to now be on 15mg daily having titrated down from 40mg. From what I have been told only recently and from replies to my post I have received from others Mycophenolate should improve autoimmune PF. If you are not experiencing that outcome then perhaps you should ask for the antiscarring medication as they can slow down but not reverse the scarring process. They are both licensed for such use and are Pirfenidone and Nintenanib. I hope this helps.Warmest regards
I’ve had this diagnosis since 2008 - I too am on Mycophenelate (2g) and Prednisolone (now 5mg maintenance dose), I also take a prophylactic antibiotic three times a week.
I’ve had several different immunosuppressants over the years, this current one has given me zero issues 👍👍
I was told to lose 30kg before a lung xplant would be advised, and I failed to do it so the upper age limit came and went for me too.
However at the age of 63 1/2 I decided to do something about my weight and have lost about 100lbs in the last 24 weeks. I feel like a new man!
Type II diabetes gone, high BP gone, and my use of O2 is way down and I no longer desaturate badly under exercise. My blood gas stat is the best it’s been since 2008.
If you are carrying excess weight, it is really in your interest to lose it - they may reconsider your transplant.
Thank you for your reply. Wow. Huge congratulations on your impressive weight loss. It is not an easy thing for many people to do for so many different reasons so 100lbs is an absolutely amazing achievement. The fact that the weight loss has improved your overall health in different ways can also not be understated. I myself gained 28 lbs in 2 months when first commenced on Prednisolone. My appetite was insatiable. As the dosage came down the appetite receded and I am gradually losing the weight I gained. Really glad to hear that the low dose Pred and Mycophenolate has stabilised your condition somewhat. I am hoping for a similar outcome. Warmest regards
Thank you for your reply. Really good to hear that Prednisolone worked well for you. To be honest I really thought it would have a similar effect on me but unfortunately not. I was on 40 mg Pred for a month which was then reduced to 30mg and owing to severe side effects further reduced to 20mg and now the 15mg that I take daily. The inflammation markers in my blood (CRPs) remained stubbornly elevated throughout. The side effects have now subsided but I gained 2 stone in 2 months as I had an insatiable appetite. I am gradually losing the weight I gained. Never experienced an appetite like it. Jogger bottoms were required as my denims would not fasten. Warmest regards
hi Dave I have had PF for the last 8 years diagnosed with an immune issue . My immune system attacks my lungs, muscles and skin. So I’m on mycophenolate and 5mg of pred . It has slowed down progression . So I see my consultant at least 3 times a year . So I would say stay with if you can . I also use O2 on exertion. But not always as it’s heavy to carry round . I have a oxygen concentrator at home to use when doing gardening and house work 🙂
Thank you for your reply. You are an example to others that there is hope. 8 years post diagnosis is an incredibly positive story. Really glad to hear that the combination of Pred and Mycophenolate has slowed down the progression of your condition. I am hoping for a similar outcome myself. I do indeed intend to persevere with the treatment. Like you I am breathless on exertion. The oxygen does help with this but as you say it is bulky and takes some getting used to when outdoors. I do not require it at rest at this time. Warmest regards
Hi Dave- an year ago my dad got a lung transplant. He was in good shape 72 years old. It was at Toronro general hospital. Great team. He had a rare auto immune disease called. Alpha One anti tripson disorder. 62 is not too old. My friends dad has a double lung transplant in his 70’s and lived another 12 years- also at toronto general. Sadly my father didn’t make it. His new lungs were fine but many major organs freaked out and started shutting down after the surgery. Particularly his heart and kidneys. He never got out of the icu and died three months later. No one knows what happened really- the team was stumped. It’s a tricky surgery and I think on average it’s supposed to buy you five good years. Toronto General is a leader in the surgery and has lots of success stories. My dad was looking for a few more good years where he could be himself again so this surgery was everything he wanted. Sad it’s didn’t work but he was considered to be old at 72. He has barely qualified. He pushed for it. My pals dad after his lungs went to the transplant Olympics so…. Keep searching for opinions. Ya never know. Best.
Thank you for your reply. Sorry to read that although your Dad's transplant was a success it never extended his life. It must have been a very difficult time for both of you. Your friends Dad and the transplant Olympics stories are extremely positive and heart warming and as you say 62 is not too old. It is my intention to persevere with the immunosuppressants but it is good to know that a lung transplant could still be an option for me. Warmest regards
Wow. So many replies. I will read and respond to each one individually if possible but in the meantime I am posting an update on the events of the last few days for everyone who has shown an interest. So on 16th Jan I had a telephone consultation with a Community Respiratory Nurse who told me that 62 is not too old to be considered for a lung transplant as one of her clients underwent theirs at 67. She also said that she has clients with the same condition as myself who have seen improvements with Mycophenolate but that it takes a long time to have an effect and I need to persevere with it. Yesterday 17th Jan I attended Hospital for a prearranged Angiogram organised by Dr A who was the Consultant I saw when I was first admitted to Hospital. The procedure went without a hitch thankfully and my coronary arteries are normal and their was no signs of heart disease. My vital signs on the table were BP 115/75, pulse 81 and O2 97%. All wonderful until I mobilise whereupon my pulse goes through the roof and my O2 plummets without my oxygen. On my return home as fate would have it there was a letter from Dr B who I saw on 2nd January. It was a copy of the outcome of my consultation he sent to Dr A. In it he writes that I am LIKELY too old for a lung transplant but that if Dr A wishes to pursue this then he is free to do so. He then discusses my CT scan obtained on my Hospital admission in October. He states I have numerous different forns of lung damage including honeycmbing, ground glass, cysts and extensive inflammation consistent with Sjogrens. He then goes on to say that they need to target my immune system aggressively hence the Mycophenolate. Finally he states that if there is no improvement with the Mycophenolate then I will need the antifibrotic medication. I feel more informed having read the letter than I did after the consultation as he has explained his rationale.
I have a follow up consultation on 6th Feb and in the meantime I will continue with the 15mg Prednisolone and by that time 2mg Mycophenolate daily and just hope that I see an improvement in my condition with time.
Thank you. It does appear that is the case. As the Respiratory Nurse said it can take a long time to see an improvement so probably my journey has only just begun.
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