Hi everyone. What a day. Particularly what a morning. This is my third post. I was commenced on Mycophenolate by the Royal Hallamshire Consultant in early January. I attended for my second consultation this morning. Appointment was 10.20am. Arrived 9.30am. Car park full. Had to park half mile away and walk uphill to the Hospital. Even on 5L a min I could hardly put one foot in front of the other. Arrived late and absolutely exhausted but he still saw me. 4 people in the room. He asked how my breathing was since starting Mycophenolate. I said no improvement and if honest worse in the month I had been on it. He had all my blood results from my previous consultation on 2nd Jan. He had said then that Mycophenolate can take 4 months to have an effect. Today despite me only being on it a month he announced he is discontinuing it and commencing cyclophosphamide as a monthly infusion at Rotherham ASAP. I asked him why and he said the problem is the severe inflammation in my lungs. I also asked him if my Sjogrens was causing this as that was what he said last time as I have no other symptoms of it. He said it was my immune system in general. I had heard very good things about Mycophenolate from medical professionals and also received testimony from users of this platform who have had success on it and I am off it already. The Consultant did annoy me today by saying I am still trying to do too much. I do nothing in the house these days and can barely make it upstairs to bath twice a week. I was exhausted today as I had to basically climb up big hills to attend the appointment. He also says I talk too much which is making me breathless. Really? So what can I do then? Nothing it appears. I am breathless because of the scarring on my lungs not because I talk. I was only answering his questions even if I didn't just answer yes or no. Really disappointing day and now I have been told that when the cyclophosphamide starts I cannot leave the house other than for the infusions for 4 months and will be at really high risk of infection. Bang goes seeing my 4 year old grandson and his germs then. To add insult to injury Dr Google says cyclophosphamide can actually cause ILD and pulmonary fibrosis so I won't be consulting that again. I am hoping that the very helpful fellow sufferers on this platform may be able to provide me with their knowledge and/or experience of the next stage of my treatment. I quite honestly wish I had just stayed snuggled up in bed this morning as I was having a lovely dream. Thank you for taking the time to read my post
Dave
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Thank you for your reply. The Hospital parking situation in Sheffield is shocking. I was 30 mins late for my appointment despite arriving 50 mins early. Northern General is as bad. They said yesterday that they are aware of the problem and asked me to fill in a complaint form which I did. Future appointments and treatments will be in Rotherham and I have been told to utilise patient transport. I honestly thought I was going to collapse yesterday trying to get to that appointment. It was so exhausting. No wonder people fail to keep appointments. 40 a month missed in that department alone. They told me yesterday.Warmest regards
Hi Dave, what an awful thing to have to go through. Can you try and seek a second opinion? Unfortunately people with lung disease plus others of course, have to really push to get the right treatment for them. Some consultants are rather arrogant and don’t always listen to their patients. Your consultant wouldn’t like Pete as he talks for England. Good luck to you. Xxx
Because of my condition I hardly see anyone these days other than my son who lives with me. I don't even go in the supermarket any longer. I drive there and he does the shopping while I wait in the car. I wasn't breathless because I was talking too much. I was breathless because of the scarring on my lungs and half killing myself trying to get into the Hospital to see him. Personally I think his comments were uncalled for. I was late because of circumstances beyond my control.Warmest regards
Thank you for your reply. Really glad to hear Mycophenolate is working for you. I have heard nothing but good things about it from medical professionals and users of this platform who have first hand experience of it. I had high hopes it would also work for me but they have stopped it and that's that. Cyclophosphamide next and that's all there is to it. I obviously can't currently work so I miss talking to other people. Maybe I did over talk yesterday but I was only answering his questions. I thought he was rude and his comments were uncalled for.Warmest regards
I can’t commend on your lung medication because I only have asthma and bronchiecstasis, and treat them with 4 inhalers. I do sympathise with the talking too much, although it could have been phrased better! I was a primary teacher, which involves talking pretty much all day. I started coughing in 2012 and had to stop work in 2015 because if I talked I couldn’t breathe and if I breathed I couldn’t talk!
Thank you for your reply. I havnt worked since October and I do miss my colleagues. I only really see my son who lives with me and an occasional visit from my daughter and grandson. He is only 4 and at Nursery. He is regularly coughing his head off. He had Croup, chicken pox and 2 chest infections in 5 weeks last November and early December so I couldn't really see him at that time. Have managed 4 visits since Christmas though.Warmest regards
I live with my daughter while I’m having work done on my house. I have two sons with families, who each live an hour and a half away from me in opposite directions. They all lead very busy lives so I don’t see them very often.
Nx time,book hospital transport & a wheelchair, and to yr infusions.I hope the medication agrees with u.re grandchild,How's about an airpurifier,windows on trickle vent, providing hasn't got a virus.
Also I use vicks rescue spray for nose and coldzyme throat spray - both supposed to neutralise viral particles xx
Hi Patk1. Thank you for your reply. All future appointments and treatments are to take place at Rotherham and I have been told to utilise patient transport. After yesterday's experience I will definitely be doing just that. I will invest in a Vicks nasal spray the next time we go to Asda. Once the better weather comes I will be able to see my grandson outside. That's what we did during Covid.Warmest regards
I’ve been down that route. I was tried on azathioprine, methotrexate, mycrophenalate and cyclophosphamide and none of them worked. I was then prescribed rituximab infusions and finally this slowed the fibrosis down.
I talk a lot at appointments as well especially at my oxygen assessment which doesn’t help!!! Next one (next week) I’m going to say yes or no and that’s it!!!
I can’t comment on Sheffield’s parking as I’m down south but I do use a mobility scooter when going to hospital appointments as I really couldn’t do the trek around the car park and the corridors.
I hope the cyclophosphamide works for you, the distancing yourself for a few months is better than the alternative but again that will be your choice. I didn’t have much choice when I had mine as I was a primary school teacher, couldn’t avoid the germy little creatures and I always had a cold or chest infection - definitely made my scarring worse and my condition deteriorated quicker.
Hi. Thank you for your reply. My scarring is really bad and shows no sign of slowing. I am constantly gasping for breath and just feel generally lousy. They previously said it was Sjogrens that was attacking my lungs and after 3 months of prednisolone put me on Mycophenolate which built up to 2mg a day after a month. They have already took it off me despite saying it can take 4 months to take effect. They are now saying it is my immune system that is causing the scarring and are going to commence me on the cyclophosphamide. Soon I think. My Respiratory Nurse thinks I may have hypersensitivity pneumonitis but the Consultant did not confirm that. I don't think they actually know my diagnosis and are throwing drugs at it in the hope something sticks. Do you have a diagnosis? Warmest regards
Yes I was diagnosed with mixed connective tissue disease (an autoimmune condition) in 2008 aged 36 which causes my pulmonary fibrosis. I was only on mycrophenalate for 2 months before they took me off it as my breathing really deteriorated whilst taking it. I take loads of different medications for all aspects of my condition to try and manage it as I know it is a progressive disease.
I think my breathing is more laboured on Mycophenolate. It definitely didn't agree with me despite no other side effects. Consultant said pure coincidence and I am simply placing blame on the Mycophenolate by association. He still stopped it though. He wasn't really forthcoming other than cyclophosphamide is stronger. He has warned me that I will be at severe risk of infection. I have my nephews wedding in April in Scotland and asked if I would be able to attend. He replied " No chance". Weeks holiday with the kids at a caravan in Bridlington on the east coast in late June, early July. 20% chance. Disappointed to say the least as the infection risk is lower with Mycophenolate. I did not expect it to be stopped yesterday after only 4 weeks but I honestly think it was making me worse.Warmest regards
Amazed to hear that you have been living with your condition since 2008. My symptoms only started on August 8th last year. Before that, nothing. You must really be managing your condition well. Bit worrying to hear that cyclophosphamide didn't work for you as I could have a similar response but glad to hear the Rituximab has. I am really quite worn down with it all today but it really helps to hear success stories like yours to give me the motivation to keep fighting in the hope they eventually throw something at the inflammation that sticks.Warmest regards
I have good and bad days both mentally and physically. I had symptoms at least three years previous to my diagnosis. It does take time to get your head round it. I use the Fbook support group for PF as people there understand more.
Hi Angie. Could I ask if your breathing deteriorated when you were taking the Mycophenolate? What evidence did they have to make the decision to stop it and did your breathing improve once it was discontinued? I had a shocking night last night. My O2 was in low 70s during the night and I could only get 90% on 4L. That has never happened before. I can get 90% on no oxygen this morning and 94% on 4L. Thinking I was OK I ventured to Asda with my oxygen in tow. Huge mistake. Even on 4L a min I was struggling. I made it to the couple of aisles I wanted though. Really fancied a meat feast pasta and garlic bread for tonight and I treated myself to a bar of dark chocolate. It's the only vice I have left. My son was getting worried about me as I was struggling. A month ago I would have managed it on no oxygen. I passed my 6 minute walking test on 2L oxygen on the 4th Jan. I commenced the Mycophenolate on the 5th and I am convinced it has made my breathing worse. Consultant says I am blaming it by association!!!. Why did he stop it then? Can I ask what your experience was while taking Mycophenolate and after they stopped it. One final thing. Did you continue to take it until they started the Cyclophosphamide? I've researched that one and it appears to not be very successful at treating ILD which doesn't fill me with much hope. Really glad that Rituxamib has worked for you though. It appears they through almost every drug they had at you until one worked thankfully. Warmest Regards
I had an appointment with my consultant roughly 6-8 weeks after starting Mycrophenalate and I raised my concern that my breathing had deteriorated a lot in that short time. He believed me with no issues and stopped it straight away - no tests or anything just him trusting me with what was going on. After a while my breathlessness returned to the same level that it was before starting the mycrophenalate so no permanent damage was done. I have a very good relationship with all my consultants, I am very lucky. There was one of the team I didn’t gel with so asked not to be seen by him again - no problem with that either (perhaps they agreed his bedside manner was crap!!!)
I’m sorry you are having it rough at the moment - I gave up nipping to the shops years ago. All shopping is done online so I have to be ultra organised and not spontaneous. There are times I quite fancy popping to the bakers for a fresh loaf or a jam doughnut but I don’t. It does help maintain my weight though 😊
Hi again Angie. Glad to hear your breathing returned to normal for you after stopping the Mycophenolate. I am convinced I am worse. I hardly ever go out but I decided to today. I think it is the stubborn side of me that refuses to give in. The mind is definitely willing but today at least and Tuesday the body was screaming no. I am convinced there is no worse feeling in the world than not being to catch your breath and supermarkets rarely provide seating. I gained 2 stone in 2 months when I was on 40mg and then 30mg Prednisolone. Ate all the wrong things including doughnuts and pastries. Even cakes that I would normally never crave. Those Maryland chocolate cookies were on offer at £1 a packet so they were top of the menu. The craving has gone on 15mg but I do like an occasional bar of dark chocolate. I agree with how important it is to have a good relationship with those in charge of our care. It should be a dialogue but so far mine has been more of a monologue. Talked at rather than talked to. If I am allowed to talk at all that is. Thanks for giving me the benefit of your experience.Best wishes
Hi Angie. Really hoping you can help me. I was admitted to Rotherham Hospital last Friday. ( 9.2.24) Ambulance. Sat's were 60% on 6 litres oxygen. Mycophenolate stopped. Put on IV antibiotics and prednisolone increased from 15mg to 50mg. 5 days of IV and infection treated however breathlessness has persisted and CRPs have doubled from 23 to 46 since prednisolone was increased. X ray on admission shows significant increase I scarring since November. Only change during that was the introduction of Mycophenolate on 5th Feb. Now stopped as you know. Successfully completed a 6 and half minute oxygen assessment day before (5.2.24) on 2L oxygen when Sat's did not drop under 92% and I was walking at a fast pace. My question is how long did it take for your breathing to improve after they discontinued the Mycophenolate. I know you said after a while but could I ask how long. I have been off it 7 days today. My O2 IS already up to 80% on no oxygen at rest. I can't help thinking it is more than just a coincidence. One Consultant agrees but crucially the others are reluctant to agree.Hoping you can help
OK Angie. Thanks for reply. I feel I should delay the cyclophosphamide until my breathing has improved somewhat now the Mycophenolate had been stopped for a week. I don't think the time is right at the moment for such a harsh drug. Dave
Hi Angie. One step closer to the front door. I've been moved from short stay unit to A4. Dr Eddery had accepted that I will not commence Cyclophosphamide but nor does he want me to retry Mycophenolate as Saturdays CT scan shows further scarring and inflammation so he wants to treat the inflammation aggressively so we have agreed on Rituxamib which is another immunosuppressant but with a less harsh side effect profile
I am aware that it is the medication you told me you are taking and I am to have it as an infusion. I think I am supposed to commence it tomorrow. They will arrange for someone to come to my house to take bloods and I do not have to go back to Hallamshire. I havnt had the chance to research Rituxamib yet as they were moving me and then my son visited. I will read up on it tonight. I had to choose a treatment or I was never going to move any further forward. I am hopeful that I will be home tomorrow night eating a Chinese and watching The Grand Tour. David
I was diagnosed with Hypersensitivity Pneumonitis (HP) after having a surgical lung biopsy (no fun). I had all the blood work to test for antigens that attacking my immune system. I still don’t know what the antigen is and all testing for it has been exhausted. Based on other factors they think that is what it is. I was prescribed Prednisone and Mycophenolate at the same time. The Prednisone should help with inflammation while the Mycophenolate gets established. I also took Sentra DS to prevent parasites from the Prednisone dosing. I weaned off the Prednisone after a year. Weaning is important to allow your adrenal glands to recover. If I have a lung inflammation flare, I get put back on Prednisone. I did not have diarrhea or other side effects from the Mycophenolate. My two flares were the result of cleaning products that I had used before but did a spring cleaning with too much product all day. The Mycophenolate worked for 5 years until I got a nasty side effect called CSV and treated with an antiviral med, CSV is not uncommon in transplant patients who take Mycophenolate. My local GI doc didn’t catch it after I had been having diarrhea for 10 months and lost 30 pounds. I want to the Mayo Clinic (USA) and had other testing that found it. I am only on Ofev currently until all my symptoms settle down. If you have HP, the treatment I had was good if you don’t get CSV. It’s the first I have heard of it and I read other forums. I would seek a second opinion. Good luck.
Thank you for your reply. I too am on Prednisolone. It was 40mg daily, then 30mg after a month and is now 15mg daily. They needed to reduce it as I had quite bad side effects. My face blew up like a balloon ( moon face) my skin thinned and I couldn't sleep. The moon face and sleeping have resolved on 15mg. Once skin has thinned it is permanent. I have no idea why they have took me off Mycophenolate after a month but they have. I was asked how I felt on it and said no better and if honest worse. That was it. Took off it and starting Cyclophosphamide next. Awaiting appointment letter. I'm very confused and also disappointed. What was the point in putting me on it if only to change it in 4 weeks. They only had the blood results from my original appointment on the 2nd Jan before I started Mycophenolate. No other bloods were obtained while i was on it until they took some yesterday after my consultation. They had already discontinued it by then. No idea what they are thinkingWarmest regards
Don’t know what symptoms you had that you said were worse when on Mycophenolate. I had to take it with Prednisone initially tapering by the end of 1 year, so it takes awhile for the Mycophenolate to be a maintenance drug. Will be good to know if the Cyclophosphamide helps you. I can’t take Mycophenolate anymore. Hope you find it helps without side effects.
I can’t comment on whether cyclophosphamide will help you or not. I can tell you I had six pulses of cyclophosphamide 12 years ago for my autoimmune disease. I went back to work in the afternoon after I’d had it! I also still saw my grandchildren. I’m severely immune suppressed after having rituximab so I steer clear of the grandchildren when they have colds. If you’re up to it meet him at the park or go for a walk. Make sure you wash your hands after holding hands or wiping noses. I hope it helps you. Maybe a different consultant who’s not so rude may help too.
Thank you for your reply. We have been really careful with infection risk as regards interacting with others. Will have to be even stricter now. Looking forward to the warmer weather but goodness only knows what state I will be in by then as my shortness of breath is frankly shocking even on 4L ambulatory oxygen. Much worse than 4 weeks ago when I wasn't even on ambulatory oxygen. Coincidence according to Consultant and I am blaming the Mycophenolate by association. He still stopped it though. No wonder I get confusedWarmest regards
Hi Dave - sorry to hear you are having such a bad time. I only know immune suppressants from having chemo and bone marrow transplant but I am a severe COPD patients now and am interested by your comments. I am going to assume you have some problem that makes your immune system over-active (like rheumatoid-arthritis?) . And I am not qualified to comment further but...
Have you considered the possibility of a mobility scooter? I know what you will say and so did I but it has been a boon. I can now get to the coffee shops, go round to the supermarket and see my daughters (mask on or lateral flow tests permitting thanks to Covid). If you use a car you can like me have a not to0o expensive hoist fitted to get a folding scooter in and out.
Anyway, its just a thought that might help. All the best,
Yes I agree. Due to COPD but much more spinal stenosis I reluctantly gave in and got a small folding mobility scooter. Now 18 months later I love it and it has given me my independence back.
The physiotherapist told Pete he has spinal stenosis so that might explain the pain down his legs and into his feet. He’d be lost without his mobility scooter. Take care Bev. Xxx❤️
Thank you for your reply. I would definitely consider a mobility scooter in the future once I get a bit of freedom back. Got to try and get this inflammation under control first but if they can manage to achieve that then a scooter would be a fabulous way to increase my mobility and freedom.Warmest regards
My wife had spinal stenosis and it was very painful. We paid for her to have a private operation (about £7,000 I recall) which was a stretch (ho ho!) and whiule it took a while she is now veryt much better. A subsequent hip replacement (NHS) was good but the other one is also failing now! Osteoporosis - the curse of womanhood!
Thank you for your reply. After yesterday I would have no problem in getting about on a scooter. I see other people zipping about on them on a daily basis. Some of them can really speed along. My walking on ambulatory oxygen has deteriorated significantly in the last month to the point I can do no more than 20 paces without stopping. I have finally applied for PIP and am waiting to hear back from them. I have had to accept that I will not be returning to work as my condition has deteriorated so much. Any opportunity to increase my mobility would be a major bonus. Might not be for 4-6 months though as I will be at high risk of infection once I start the new immunosuppressive. Warmest regards
Thank you for your reply. I will definitely be considering a mobility scooter in the future just as soon as they get this lung inflammation under control. If possible that is and my infection risk is reduced. Consultant basically told me yesterday that once I start the Cyclophosphamide I am not to leave the house other than for the Hospital treatments for 4 months. The restrictions on my movements will be even worse unfortunately. Warmest regards
Cyclosprin eh? I had that. Does your disease qualify as 'cancer'? If so you are entitled to a range of financial supports to assist you in NOT having to be treated in a long hospital stay. I think you should get some advice.
Hi Timberman. It's called cyclophosphamide. It is a chemotherapy drug that is used to treat cancer but I don't actually have cancer. However it is also used to suppress the immune system. That's what is attacking my lungs. My own immune system is mistaking healthy tissue as a threat. If they can't get on top of the inflammation it causes permanent scarring. It means I am at very high risk of infection and will need to be even more careful than I have been up until now sadly. I have been told I will never work again so I have applied for PIP and hopefully I will get some much needed financial assistance .Warmest regards
I'm so sorry you're in this predicament. Your consultant sounds both unreasonable and arrogant. I can only hope the better weather will bring you some relief.
Hi Alberta. Thank you for your reply. I felt his comments yesterday were uncalled for. Maybe he was annoyed that I was late for my appointment. Not my fault. Circumstances beyond my control. My appointment was for 10.20am and I arrived at 0930. After my consultation I put in a complaint. The receptionist said the car park was locked off by 8am so there was literally nothing I could have done. I am always polite and respectful in my consultations. I felt he was unnecessarily rude. Warmest regards
What a stressful day sorry to hear about it I also think the consultant extremely very unacceptable dealing with you if you or anyone went to docters or like you're self consultant and you just said we'll docter I'm not well what's wrong with me any docter would say tell me what's going on so for him to say you talk to much is ridiculous that's how they know try medications and so on to me the more information the better for them and valuable for you're self and you are the important one other wise he wouldn't have a job good job he didn't say or any off them say that to me wouldn't be happy feel for you take care
Greetings Germantara. Thank you for your reply. I have read a number of your posts on this platform and know that you have a lot to offer to the rest of us. You are very knowledgeable. I think the Consultant was A) annoyed I was late and B) I asked him why he was changing from Mycophenolate to Cyclophosphamide so quickly. I don't think he appreciated me questioning his decision. I thought he was rude. I didn't react although I could have. At the end of the day I need his help so I would rather remain on good terms. Warmest regards
Hi Dave, what a stressful day you have had ! So sorry to read your day was disappointing on so many fronts, from trying to get to your appointment to having such a dialogue with the consultant. You said there were 4 people in the consultation- was it a MDT approach, or a group of students? Not that it seems to make much of a difference if the decision is to change your treatment. I do hope your new treatment starts soon and you find that it is beneficial to you.
I wish you all the best in the coming weeks. Take care.
Hi Blyth. It is meant to be a MDT consultation. The main man is the Pulmonologist and the other a Rhumatologist. I assume the 2 young ladies were students. I have no problem with that as they need to learn. What confuses me is last consultation on 2nd January they said it would take 4 months to see any improvement. They stopped it after 1 month despite never taking bloods while I was on it. Why start me on a new drug only to stop it a month later with zero proof it was having no effect. I can only assume its to do with what they found in the blood they took on 2nd Jan before I started it. First bloods obtained since I was discharged from Hospital. I find it so hard to accept that despite 4 months of prednisolone, hydroxychoroquine and the now discontinued Mycophenolate that I have made no progress whatsoever.
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