Discussion
My brother in law has suffered pretty badly in the past with it. A nightmare really.
It initially flared up in Thailand and as he'd done some diving there, when we met up with him in KL we thought it was the bends so the poor sod ended up with 3 decompression sessions for no reasons.
He's finding that more and more things trigger it... Beer, red wine. A pity all round as he loves his drinking.
Sorry to hear you're suffering with it.
It initially flared up in Thailand and as he'd done some diving there, when we met up with him in KL we thought it was the bends so the poor sod ended up with 3 decompression sessions for no reasons.
He's finding that more and more things trigger it... Beer, red wine. A pity all round as he loves his drinking.
Sorry to hear you're suffering with it.
21TonyK said:
Anyone else? Eyes, skin and lungs here. 2 years with the past 6 months on and off prednisonolone. Currently on and tapering but symptoms coming back at 20mg per day.
Skin, lungs and possible heart.Edited by 21TonyK on Saturday 11th July 21:39
Had it very bad 10 years ago, but some of the symptoms persist and flare up from time to time.
Awful disease, but it 'interests' a lot of doctors, so they're always happy to throw lots of test at me
Didn't realise it was such and odd one, only really started researching it.
Back in for more tests and see another consultant next week.
No doubt increase the steroids again which I really don't seem to get on with.
Bouncing round like a lunatic last night!
Oh... and the weight gain! I purposefully lost 6Kg over Xmas, all back one and more
Eyes hurting again and in todays heat its like breathing through treacle!
Joy of joys
Back in for more tests and see another consultant next week.
No doubt increase the steroids again which I really don't seem to get on with.
Bouncing round like a lunatic last night!
Oh... and the weight gain! I purposefully lost 6Kg over Xmas, all back one and more
Eyes hurting again and in todays heat its like breathing through treacle!
Joy of joys
21TonyK said:
Didn't realise it was such and odd one, only really started researching it.
Back in for more tests and see another consultant next week.
No doubt increase the steroids again which I really don't seem to get on with.
Bouncing round like a lunatic last night!
Oh... and the weight gain! I purposefully lost 6Kg over Xmas, all back one and more
Eyes hurting again and in todays heat its like breathing through treacle!
Joy of joys
I feel for youBack in for more tests and see another consultant next week.
No doubt increase the steroids again which I really don't seem to get on with.
Bouncing round like a lunatic last night!
Oh... and the weight gain! I purposefully lost 6Kg over Xmas, all back one and more
Eyes hurting again and in todays heat its like breathing through treacle!
Joy of joys
The tests i received were mostly unpleasant, but they initially thought i had TB, then lung cancer. I lost 3 stone in weight in a matter of weeks.
Once eventually diagnosed, the dose of Prednisolone they put me on was extreme to say the least, a months supply used to empty the chemists shelves. They reduced the dose when i starting seeing things!
Got diagnosed with this approx 10yrs ago. Walked out into bright sunlight and it felt like someone had stabbed me through my eye.
It dropped me to my knees.
My wife told me to go to the doctors but I didnt, then eventually as I became sensitive to sunlight I went to the chemists.
Chemist asked usual questions, and after telling him I had a cough for over 9 months he refused to give me anything.
Straight to GP, told receptionist, who asked me to take a seat. Within 30mins was sat with GP, who I was lucky thought it my be sarc. Asked me if I could get to hospital on my own. He rang ahead and via A&E I had xrays on lungs.
They were heavily scarred. I had put tiredness down to getting older.
Anyway over about a week I had lung function tests, eye test and referred to a specialist.
Also had the lung biopsy which I didnt enjoy.
I had a 52% exchange rate on my oxygen, and was told at 50% I would have had a bottle of oxygen and a mask to drag around lol.
Over about 4 years I had regular lung function tests to make sure I didnt get worse.
Fortunately with exercise to improve lung function I avoided the steroids that help you put on weight.
I got discharged and am much improved.
Had some itchy skin on my shins for first couple of years.
I have dry eyes and need artificial tears. My eye occasionally aches, and I will never be as fit as I could have been. I also have a cough that never goes away, but at least I no longer bring up the brown lumps.
I also got priority delivery through the corona virus due to sarc being an auto immune issue.
So I'd say keep positive
It dropped me to my knees.
My wife told me to go to the doctors but I didnt, then eventually as I became sensitive to sunlight I went to the chemists.
Chemist asked usual questions, and after telling him I had a cough for over 9 months he refused to give me anything.
Straight to GP, told receptionist, who asked me to take a seat. Within 30mins was sat with GP, who I was lucky thought it my be sarc. Asked me if I could get to hospital on my own. He rang ahead and via A&E I had xrays on lungs.
They were heavily scarred. I had put tiredness down to getting older.
Anyway over about a week I had lung function tests, eye test and referred to a specialist.
Also had the lung biopsy which I didnt enjoy.
I had a 52% exchange rate on my oxygen, and was told at 50% I would have had a bottle of oxygen and a mask to drag around lol.
Over about 4 years I had regular lung function tests to make sure I didnt get worse.
Fortunately with exercise to improve lung function I avoided the steroids that help you put on weight.
I got discharged and am much improved.
Had some itchy skin on my shins for first couple of years.
I have dry eyes and need artificial tears. My eye occasionally aches, and I will never be as fit as I could have been. I also have a cough that never goes away, but at least I no longer bring up the brown lumps.
I also got priority delivery through the corona virus due to sarc being an auto immune issue.
So I'd say keep positive
Edited by mikebradford on Thursday 16th July 21:03
littlebasher said:
I feel for you
The tests i received were mostly unpleasant, but they initially thought i had TB, then lung cancer. I lost 3 stone in weight in a matter of weeks.
Once eventually diagnosed, the dose of Prednisolone they put me on was extreme to say the least, a months supply used to empty the chemists shelves. They reduced the dose when i starting seeing things!
You mind if ask the dose you ended up on, I started on 60mg tapering. Now on 30 tapering and at 20 all hell has broken loose.The tests i received were mostly unpleasant, but they initially thought i had TB, then lung cancer. I lost 3 stone in weight in a matter of weeks.
Once eventually diagnosed, the dose of Prednisolone they put me on was extreme to say the least, a months supply used to empty the chemists shelves. They reduced the dose when i starting seeing things!
mikebradford said:
Got diagnosed with this approx 10yrs ago. Walked out into bright sunlight and it felt like someone had stabbed me through my eye.
It dropped me to my knees.
My wife told me to go to the doctors but I didnt, then eventually as I became sensitive to sunlight I went to the chemists.
Chemist asked usual questions, and after telling him I had a cough for over 9 months he refused to give me anything.
Straight to GP, told receptionist, who asked me to take a seat. Within 30mins was sat with GP, who I was lucky thought it my be sarc. Asked me if I could get to hospital on my own. He rang ahead and via A&E I had xrays on lungs.
They were heavily scarred. I had put tiredness down to getting older.
Anyway over about a week I had lung function tests, eye test and referred to a specialist.
Also had the lung biopsy which I didnt enjoy.
I had a 52% exchange rate on my oxygen, and was told at 50% I would have had a bottle of oxygen and a mask to drag around lol.
Over about 4 years I had regular lung function tests to make sure I didnt get worse.
Fortunately with exercise to improve lung function I avoided the steroids that help you put on weight.
I got discharged and am much improved.
Had some itchy skin on my shins for first couple of years.
I have dry eyes and need artificial tears. My eye occasionally aches, and I will never be as fit as I could have been. I also have a cough that never goes away, but at least I no longer bring up the brown lumps.
I also got priority delivery through the corona virus due to sarc being an auto immune issue.
So I'd say keep positive
Hell, I thought two years was bad!!It dropped me to my knees.
My wife told me to go to the doctors but I didnt, then eventually as I became sensitive to sunlight I went to the chemists.
Chemist asked usual questions, and after telling him I had a cough for over 9 months he refused to give me anything.
Straight to GP, told receptionist, who asked me to take a seat. Within 30mins was sat with GP, who I was lucky thought it my be sarc. Asked me if I could get to hospital on my own. He rang ahead and via A&E I had xrays on lungs.
They were heavily scarred. I had put tiredness down to getting older.
Anyway over about a week I had lung function tests, eye test and referred to a specialist.
Also had the lung biopsy which I didnt enjoy.
I had a 52% exchange rate on my oxygen, and was told at 50% I would have had a bottle of oxygen and a mask to drag around lol.
Over about 4 years I had regular lung function tests to make sure I didnt get worse.
Fortunately with exercise to improve lung function I avoided the steroids that help you put on weight.
I got discharged and am much improved.
Had some itchy skin on my shins for first couple of years.
I have dry eyes and need artificial tears. My eye occasionally aches, and I will never be as fit as I could have been. I also have a cough that never goes away, but at least I no longer bring up the brown lumps.
I also got priority delivery through the corona virus due to sarc being an auto immune issue.
So I'd say keep positive
Edited by mikebradford on Thursday 16th July 21:03
Really encouraging to know that you avoided steroid with your own intervention. Eyes are a PITA for me. I'm (just) 50 and have/had near perfect vision so losing that means adjustments at work, ie. remember your glasses!
Everything else seems to beyond my control.
Wait and see I guess.
21TonyK said:
You mind if ask the dose you ended up on, I started on 60mg tapering. Now on 30 tapering and at 20 all hell has broken loose.
Sorry, i just remember it was a lot - and i had to take them for agesI had funny eyes too - i developed a couple of dark spot in my vision that was apparently also a symptom
And not sure if you had it, but i also had drenching night sweats (like pools of water on my back). That and chronic arthritic pain, so much so that i could barely move & had to be assisted for everything, and when they did anyone touching me was agony.
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