I have cryptogenic organising pneumonia, rapidly progressing interstitial lung disease all on the back of amyotrophic dermatomyostitis. An autoimmune disease.
Anyone else experienced such things? I’m struggling to get about even on ambulatory oxygen.
Welcome to this forum. I am sorry that you have these nasty conditions. I understood that COP can respond to steroids. But I can see that having an auto-immune disease makes it very difficult. COP was known as Bronchiolitiis Obliterans Organising Pneumonua (BOOP) which meant that it was confused with Bronchiolitus Obliterans which is what I have and is a very different disease. These Small Airways Diseases are a bugger. (Small airways not small disease, I once upset a member as she thought I was trivialising her condition!) I do hope that you have some good doctors. With such a complex and rare cauldron of problems you need doctors with open minds who enjoy a challenge.
There are a few members here with COP and ILDs. My condition can be triggered by auto-immune diseases. should like to know more about your history if you feel comfortable telling us.
All the best
Kate
Whoops.... maybe “enjoy a challenge” should be edited; “rise to a challenge” is better.
K
Hi ya, it is supposed to improve with steroids but I’m still desaturating and having heart rate go through the roof as soon as I start to move about. Brushing teeth is enough to trigger desat. When I walk about on oxygen, it doesn’t take much to drop to spO2 low 80’s for 162 bpm, I have had it drop to spO2 72 for 162bpm
Got hospitalised for it being spO2 74 for 160bpm and me not being able to breathe, read coughing fit.
Strangely it all started with virus/flu like symptoms last November/December by January I sort doctor’s help.
I was still running hot cold sweats and then came rheumatoid type problems in hands, feet and knees by about March, by April I had to stop working as things were that bad. Lungs were still good. By July I was hospitalised with pneumonia, I’d had it for about six weeks. I’d constantly been telling doctors how bad lungs were but bloods coming back normal, ie no infection. Told by doctors If I feel lungs are that bad take myself to A&E. Rheumatologist got me admitted when he saw the state of me. Outcome week of hospital, month of antibiotics, diagnosis of COP, interstial lung disease and later came the dematomyostitis diagnosis.
Hopefully about to go on to a drug trial to for rescue therapy of cyclophosphamide vs RTX.
Struggling to get PIP too, they want to interview me. I have sent them three hospital discharge letters with other letters stating my diagnosis. I have to go everywhere by taxi as I’m that breathless and inclined to desaturate/tachycardic.
PIP do and can do home visits for interview and assessment but you must make it clear that traveling to wherever is very difficult/detrimental to you. If you can get a home visit make sure you have someone with you and under no circumstances get up to answer the door or make them tea/coffee, because as far as they are concerned if you can do that you can do everything and don't need help.
Cheers for the advice, much appreciated 👍🏻
Hope you get the help you need. Stevie what were your symptoms that drove you in to get checked?
Hi ya, it came on the back of flu and cold sweats. We all had a bug at work. The other lads had a stomach bug before it, I didn’t. I also had itchy eyes and was lightheaded and dizzy when getting up quickly. Best description is flu like with lots of sweating hot and cold.
Thing was it wasn’t going two months later when I visited doctor. I thought I’d give it fair chance.
When I had to stop work, fingers were swollen and really painful tips, quicks were and still are like they’re infected, skin of fingers and hands had thickened wax like. Colour was red, purple, blue, patchy. Joints were gout like. General consensus at that point was rheumatoid arthritis and referral to rheutologist.
During visits to rheumatologist the chest trouble started, culminating in hospitalisation after stopping me from getting about. Now things are really bad, I can hardly walk before things go Pete Tongue.
I go to appointments by taxi and try not to walk any distance.
Hi Stevie I too have COP along with idiopathic interstitial pneumonitis and type 1 respiratory failure. I’ve had it for 6 years now it took nearly a year to diagnose. I’m on oxygen 24/7 and steroids, azithromycin, mycophenolate mofetil, pantozoprapil,aspirin, atrovastatin and metformin for my type 2 diabetes. I have good and bad days like everyone else but as long as you have a good consultant and an even better GP you will cope. The only advise I can give you is take things very slow and learn to do things at your own rate. It takes so long to get used to being this way but things will get better with a positive attitude. If there’s anything in particular you want to know feel free to ask. Keep your chin up and good luck.
Wendy x
Wow Wendy, that’s rather inspirational. It feels at the moment like being handed a death sentence. From what you’ve said there is hope. Quality of life isn’t so great now but I’m alive and very much willing, if body isn’t. I like your style and attitude. Thank you so much
X
Your body needs time to catch up with your brain lol. It’s all about doing things at your own speed. I was told 5 years ago that if I didn’t have a lung transplant I wouldn’t be here now, I’m still smiling and laughing. Just as I was starting to get ill 6 years ago I lost my best friend she’d had a heart attack we were both 41 at the time, I took on her 4 year old daughter even though I’d got 4 children myself. It’s because of all these beautiful children of mine and now a gorgeous 2 year old granddaughter that I don’t feel sorry for myself and carry on as normal. I appreciate the fact I’m still here and there are so many more people so much worse than what I am. Definitely keep positive it helps more than you would think. Keep smiling and laughing they’re the best medicine for all of us x
I’m pretty in awe of you, 5 children to look after too. Terrible about your mate, so sad. That’s extremely good going to be coping with your lung troubles etc. I’m in good spirits but I get frustrated by my limitations at times. Oh yes I wouldn’t dispute there are folk worse off.
How do you get about? I’m pretty much forced to use taxis to appointments etc.
What surprised me most was how much oxygen isn’t helping walking. Do you have the same problem of rubbish gas exchange? Take oxygen out faster than putting it back in. I’ve told lung constant and respiratory nurses about it but maybe this is how it is? X
Luckily for me I drive, I have a car through motability and I have to use a scooter. My walking is rubbish. When I was first diagnosed I was put on 4 litres of oxygen but over the years I’m down to just 1 litre at rest and 2 litres when trying to walk around. When I take the oxygen off to get changed my oxygen can drop as low as 72 but stabilises with the oxygen back on. Over the years I’ve gotten used to having to do things at a much slower pace even though I still get frustrated when I want to do something but can’t. I really hate that I can’t go swimming and can’t do any exercise as my lungs can’t take it. My weight is a nightmare I managed to lose lots of weight before I became ill then due to the medication I gained it all again, I managed to lose it again when I stabilised but gained it agin when I started to deteriorate again. I’m trying to lose it again now that my meds have been changed. It’s an uphill struggle coping day to day as with all illnesses but I’m sure we can still have a decent happy life. My next battle is my PIP assessment on Friday. I’m dreading that more than each hospital visit lol. But hey ho chin up. Have you applied for PIP ? See what help you can get. You could be entitled to a car or if you don’t drive you could be entitled to the money so you could get yourself a motorised scooter they’re fab and a nessessity. X
I can drive but don’t have a car. I always had motorcycles. My walking is now grim, high heart rates for low sats. Today was my all time low spO2 64, not nice. On oxygen too 2litres/min
Thankfully it shifted up a bit but sat at 80 for quite awhile. I’m still practically in denial as to how much it effects me, I tend to forget my limitations and come unstuck. I’ve lost loads of weight 2 and half stones. I’ve applied for PIP but I’m getting mucked about, at first very helpful but now being given what feels like brush off, told they’re going to arrange interview but no date for it. A mobility scooter would help no end. I can’t get about without dangerous heart rates and sats on foot. Sorry to hear that you’re also frustrated by things you want to do but no longer can. Do you have trouble with steam and lungs? Showers are like asking not to be able to breathe. When I wet shave is another grim experience in sat dropping whilst coughing myself to death. Sorry to hear that you’re struggling with keeping your weight where you’d like it. Mine is stabilised to some extent but I do tend to eat more when on big amounts of steroids. I’m only getting statutory sick pay and not coping too well on it. Pip would make a difference. With regards hospital appointments, the rate I’m going I’m going to have to get one of those sasco year planners. Multiple appointments same day and different hospitals.
X
I know how your feeling with all of it. Money wise you might find you will be better off with PIP and ESA. I waited 4 weeks from being told which company were doing my assessment to having my date then it was another 2 weeks before the actual date. It takes a long time to accept your limitations that’s if you ever do. I’m still in denial with lots of things. My head is always saying I can do it but I fail spectacularly when I actually try lol. I think you need another oxygen assessment as the level your on doesn’t seem to be sufficient for you to do the basics of things. I have a carer to help me wash and dress I think that’s what I find the most frustrating. I have to sit to wash and brush my teeth and it still takes ages. But I still do it with a smile on my face. Over the years I think I cried twice and then felt guilty about doing it. Things will get easier honestly. Hopefully you can get a scooter, that will help you loads. You will feel more happier just with the knowledge you can get out of your house, it’s vile when you feel so housebound. I struggled with showers, baths and just changing when I was first I’ll. I used to cough that much I couldn’t breath and my hands and lips would turn blue. Now I’m better in the warmer weather and awful in the cold. I dread every winter. I’ve learnt to make sure my back is always warm and to keep my chest well covered up. You will improve with the right medication x
It feels like PIP has been longer than that. My fingers are playing up now, got like whitlows on every finger. I had lung function testing yesterday but they didn’t have much to say. It felt a bit less of an ordeal, still not the nicest and it’s left me tender in the chest. My heart rate keeps going up to cope with poor lung function.
I do feel trapped in the house. When walking if up the oxygen it doesn’t seem to make any difference, it’s as though I’m not exchanging gases properly. Is this respiratory failure?
X
I’ve got more lung function and oxygen tests next week. I haven’t had a proper oxygen assessment in 5 years. I’ve got my PIP assessment tomorrow I’m totally dreading it. My doctor said he would do me a letter but when I collected it it was only my medical history nothing about how I am now except saying I’m even SOB when at rest. My oxygen doesn’t help me even when turned up. Hopefully you will hear about your PIP very soon. When I have my assessment next week I will ask wether the gas exchange is respiratory failure as I’m unsure even though I’ve got it lol x
That sounds very much like my situation. I’m also short of breathe at rest, I breathe very shallow. If I turn oxygen up it makes no difference. I do believe that respiratory failure is what we’re both experiencing, most likely the effects COP and liquid filled alveoli causing poor diffusion through the lung. My CO2 was 4 of which they were happy with, oxygen was ok too but as soon as I move or do anything spO2 drops and heart rate goes skyward.
On the subject of PIP, my mate got his pretty quickly but he went through McMillan as he has a brain tumour. I was told by a mate that going through the citizens advice would help matters.
I’ve got a walking test soon, that will tell them more about the situation. I’m a bit frustrated at the moment, I want to do so much but I really can’t do much at all. Good luck with your PIP assessment. Sad that doctors letter hasn’t carried more weight to it. Stress and hassle is something that you could do without with this. X
I've had my pip assessment and it wasn't as bad as I expected but you never know until you receive the decision from the DWP. Everyday is frustrating in one way or another, your so new to this it takes ages to get used too, that's if you ever do. You will find ways of adapting to suit yourself. Try not to put too much pressure on yourself to do things or to be the person you were before your illness. You will get there but give yourself time x
Glad your PIP assessment went ok and good luck with it. My date for it has finally arrived through the door. I do need to adapt to how life is now. I’m less inclined to desaturation at the moment but I’m back up to 60mg steroids. I was terrible at 40mg, think that you’re correct in saying that I need to lay off the pressure on myself to be or anchor after what I used to be or do. I need to accept and move on. I dare say this is transitional period and early days for things on the grand scheme of things. Thanks again Wendy x
Hi Wendy, my name is Sonia. I mirror your condition without the IPF but as the COP is progressive I wouldn’t be surprised if when I go to Papworths next that I will be told I do. Did you have COP then IPF? I have three grown sons who are still living at home and I remain happy and cheerful for them and my husband but it can seem a bit overwhelming sometimes. My goal it to get them settled in their own homes so when I get worse they will be able to carry on. I haven’t asked for a prognosis as really don’t want to know.
Hi Sonia, hope your managing to cope in this cold weather. I have t got IPF I suppose what I have is similar. I too have 3 grown up sons as well as a grown up daughter and a 10year old daughter. I also have a 3 year old granddaughter. My goal is to be here for as long as possible or until my granddaughter is at an age where she will be able to remember me from her own memories and not from other peoples. My illness’s all came together. It started with a cough that would t go away. I’ve learned to change and adapt the way I do things if I can do them. It’s taken me a few years to actually listen to my body. When it’s saying slow down and rest I do it. If that means some days staying in my pjs then that’s what I do. I have a career who helps me with lots of things especially around the house. Try and do things at your own pace and don’t try to rush things. I know how hard it is to accept but don’t rush the gun and think it’s a death sentence straight away it isn’t. It just means slow right down and appreciate what you have and what you can do. You can message me anytime. Once your on the right medication and at the correct doses I’m sure you will feel more positive. Always try to stay positive it definitely helps. Stay strong, keep in touch and try to smile xx
Hi Wendy and thank you. I will take up your offer and be in touch again x
I think once your on the right level for you with the steroids your sats will stabilise but it’s a case of trial and error at first, with me when I first got ill I was having a gram injected each day for 3 days then was having the infusions every other week as well as taking 30mg each day. Things will settle down. It does take along time for your head to slow down to match your body’s ability if it ever does. I’m 6 years down the line and my head is still saying I can do everything I want to, but know I smile and think yeh ok lol. Stay positive and Try to laugh loads. When you have your pip assessment tell them how you are on your very worst day, don’t tell them about your good days. Tell them how you struggle to even talk as your oxygen levels dip and drop so much. Explain how due to being on oxygen you can’t cook as you shouldn’t be near a heat source. How you struggle to get dressed you can’t do your shoes up without getting sob. Tell them how much you struggle everyday and say how your trapped in your own home, you can’t walk anywhere your breathing won’t allow it. Good luck. I will keep my fingers crossed for you x
Things seem to be ok when I’m on 60mg but as soon as I start to lower it things go very wrong. I’m in relatively good spirits but there are times in which frustration builds. I really do find it hard to sleep. Thanks for the PIP assessment advice. Does alcohol advisely effect you? Even a tiny amount knocks my sats and heart rate about for days. On the back of that I rarely now touch a drop. Thanks again Wendy x
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