Last day of poxy steroids!! - British Lung Foun...

British Lung Foundation
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Last day of poxy steroids!!

It's my last day of steroids hopefully for awhile! I've been on them over 6 months and I'm beyond excited to get off them.

Let's hope these lungs of mine agree!!

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Would be great if you could stay off them even for a while. Have they managed a proper diagnosis yet or are you still none the wiser ?

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Still none the wiser. My lung function jumped an incredible 15% last August which they couldn't believe but it's dropped right back down 13% by October. They still think it's Bronchiolitis obliterans but haven't mentioned the open lung biopsy again and to be honest after everything I've read, I think I'll refuse it if they bring it up

That's tough ! I would feel the same about the biopsy unless they could convince me that it was necessary for my survival or would definitely result in a correct diagnosis. Not that I have a leg ( lung) to stand on anymore and will just have to do what I'm told from now on. Getting off the steroids is a good sign and with any luck you could have a break from the symptoms now. The fact that your lung function did take that jump up in August is also a good sign and let's hope it will happen again when the weather is kinder.

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From all I've read, it can be so dispersed throughout the lungs that they might not find it even if it's there. My respiratory doc said that's why we take three 1-2cm pieces!! That's not good enough for me. There's no treatment for it anyway so why go through unnecessary pain willingly?!

That sucks that you just have to do what's told - I'm sorry to hear that. Any chance of things improving for you?

Well obviously, one never gives up hope but I did get a harsh reality check during my recent hospital stay. My left lung, always the worst of the two, is now so badly damaged and covered in scar tissue that it doesn't even show on the X-ray. There's a right lung and the rest of the X-ray is just white. So I'm effectively down to one lung now. Even worse is the fact that the phantom left lung is still able to host bugs and I have a huge area of infection there. Had 20 days of IVs before Christmas and they barely touched it. Still exacerbating and still needing antibiotics continually. Going back in a few weeks and not looking forward to that.

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Jesus that's awful. I'm so sorry to hear that. I hope to god you get a break soon. I'm going to try the turmeric I've read about here. I'm also taking herbs from a very famous herbalist here in Ireland. At this stage I'd drink my own wee if I thought it would help. Must be so frustrating for you and taking its toll on your energy

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I'm starting on garlic/Allicin, hoping to ward off some of the infections and should look into Turmeric too. My energy is zilch when my lungs are full of gunk but can soar when I'm on an antibiotic combo that damps down the symptoms for a few days. All over Christmas, I was terrific but now that course of antibiotics have stopped working and it's back to square one. But I have no intention of giving in and am still exercising and trying to live as normal a life as possible. It's harder on you because you're still young and should be able to enjoy your little girl, not coping with chronic illness all the time. But I'm confident that both of us will find a way around our health problems. I'll be rooting for you :)

Niamh, I had to chuckle. My children's father did drink his own wee whilst he was fighting cancer. 1st one of the day for months 😫😫😫😫

In fairness Peege, urine would have a hard job to make you feel as bad as steroids do. I think Niamh's choice of adjective is spot on. Poxy indeed !

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Pete's been on them for over 20 years and would not be without his pred. Hope all goes well for you. Xxx

hopefully every thing goes ok once you come of the steroids hope 2016 is a happy healthy year for you . take care

Good for you. Tke it gently for the next few days won't you. Do you use inhalers containing steroids, just to keep you going? X

Hope everything goes alright and you find you no longer need them.

I'm the other way round and have just started a three month trial to see if they help to calm down my awful cough. It was a big decision to make but when discussing with my doc. and consultant neither of them threw their hand up in horror. So I'm saying goodbye to my toes as my tummy will probably get bigger than it is now and will probably have to invest in a vat of cream to stop my skin from getting even more scabbier than it is now.

Oh the things we go through.

Take care.

Sue

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