Discussion
Anyone here suffer from sarcoidosis?
i got diagnosed over two years ago with it.
did the typical manly thing with a bit of a chest infection, kept thinking it would go away. wife kept nagging me to go to doctors
it would go a little then come back, then i would cough up little lumps
then my right eye started hurting on occasion in strong sunlight
picked my kids up from my mums, walked outside and was very nearly in tears as i got a blinding pain in my eye
went inside after about 10 mins i was ok, ill admit i was nearly in tears with the pain
wife came home, b
ked me so i went to chemist
she rightfully refused to give me advice and said i had to go to see my doctor
doctor said what he thought it was straight away, specialist within a few days
x rays lung function test endoscopy later, fully diagnosed
heavily scarred lungs etc, at first 53% efficent gas exchanges in my lungs
6 monthly check ups, as they do not want to put me on the steroids, as they are particully bad ones
good news was that i thought i was just getting old and unfit! lol
just wondered if anyone else suffers with it?
as its supposedly fairly common, but like most things its the degree you suffer from it
as some dont know they have it, as its so mild, and effects people in different ways
i got diagnosed over two years ago with it.
did the typical manly thing with a bit of a chest infection, kept thinking it would go away. wife kept nagging me to go to doctors
it would go a little then come back, then i would cough up little lumps
then my right eye started hurting on occasion in strong sunlight
picked my kids up from my mums, walked outside and was very nearly in tears as i got a blinding pain in my eye
went inside after about 10 mins i was ok, ill admit i was nearly in tears with the pain
wife came home, b
ked me so i went to chemistshe rightfully refused to give me advice and said i had to go to see my doctor
doctor said what he thought it was straight away, specialist within a few days
x rays lung function test endoscopy later, fully diagnosed
heavily scarred lungs etc, at first 53% efficent gas exchanges in my lungs
6 monthly check ups, as they do not want to put me on the steroids, as they are particully bad ones
good news was that i thought i was just getting old and unfit! lol
just wondered if anyone else suffers with it?
as its supposedly fairly common, but like most things its the degree you suffer from it
as some dont know they have it, as its so mild, and effects people in different ways
Blimey...something I thought I'd never see in here. I was given the diagnosis of this about 14 years ago.
A few of the symptoms similar to yourself. A cough (dry) that wouldn't go away. Some days it was all I could do not to cough. Swollen ankles.
Got sent for a routine x-ray and cardio check. It was spotted on the x-ray that the lymph nodes in my lungs looked larger than normal. Confirmed with a CT scan.
Had loads of lung function tests, again sounds similar to yours.
I think mine was on the retreat by the time I actually got diagnosed. Was monitored for a couple of years and given the all clear.
There are occasions where I think I feel it creeping back. Get quite a "burning" sensation in my lungs when I excercise hard. Probably should go back to Doc's.
Oddly my Sister-in-law suffers really badly from Sarcoidosis as well. She regularly has steroids.
A few of the symptoms similar to yourself. A cough (dry) that wouldn't go away. Some days it was all I could do not to cough. Swollen ankles.
Got sent for a routine x-ray and cardio check. It was spotted on the x-ray that the lymph nodes in my lungs looked larger than normal. Confirmed with a CT scan.
Had loads of lung function tests, again sounds similar to yours.
I think mine was on the retreat by the time I actually got diagnosed. Was monitored for a couple of years and given the all clear.
There are occasions where I think I feel it creeping back. Get quite a "burning" sensation in my lungs when I excercise hard. Probably should go back to Doc's.
Oddly my Sister-in-law suffers really badly from Sarcoidosis as well. She regularly has steroids.
mikebradford said:
Anyone here suffer from sarcoidosis?
i got diagnosed over two years ago with it.
did the typical manly thing with a bit of a chest infection, kept thinking it would go away. wife kept nagging me to go to doctors
it would go a little then come back, then i would cough up little lumps
then my right eye started hurting on occasion in strong sunlight
picked my kids up from my mums, walked outside and was very nearly in tears as i got a blinding pain in my eye
went inside after about 10 mins i was ok, ill admit i was nearly in tears with the pain
wife came home, bked me so i went to chemist
she rightfully refused to give me advice and said i had to go to see my doctor
doctor said what he thought it was straight away, specialist within a few days
x rays lung function test endoscopy later, fully diagnosed
heavily scarred lungs etc, at first 53% efficent gas exchanges in my lungs
6 monthly check ups, as they do not want to put me on the steroids, as they are particully bad ones
good news was that i thought i was just getting old and unfit! lol
just wondered if anyone else suffers with it?
as its supposedly fairly common, but like most things its the degree you suffer from it
as some dont know they have it, as its so mild, and effects people in different ways
Are you me Mike? i got diagnosed over two years ago with it.
did the typical manly thing with a bit of a chest infection, kept thinking it would go away. wife kept nagging me to go to doctors
it would go a little then come back, then i would cough up little lumps
then my right eye started hurting on occasion in strong sunlight
picked my kids up from my mums, walked outside and was very nearly in tears as i got a blinding pain in my eye
went inside after about 10 mins i was ok, ill admit i was nearly in tears with the pain
wife came home, b
ked me so i went to chemistshe rightfully refused to give me advice and said i had to go to see my doctor
doctor said what he thought it was straight away, specialist within a few days
x rays lung function test endoscopy later, fully diagnosed
heavily scarred lungs etc, at first 53% efficent gas exchanges in my lungs
6 monthly check ups, as they do not want to put me on the steroids, as they are particully bad ones
good news was that i thought i was just getting old and unfit! lol
just wondered if anyone else suffers with it?
as its supposedly fairly common, but like most things its the degree you suffer from it
as some dont know they have it, as its so mild, and effects people in different ways
Yep, same as. Coughed for months and ignored the other half's requests to go to Doc's.
Finally went after bringing up constant white crap and struggling to get air in. Scarring in both lungs, lumps on legs and face, highly aggressive. Original diagnosis was metastatic lung cancer, spent 4 weeks thinking it was goodbye, then after biopsy they changed it to Sarcoidosis. I was very happy with that!
The only thing that surprises me in your story is no steroids?
I was put on 60 mg prednisilone per day straight away, I've been up and down ever since (4 years) and even now I'm still on them, down to maintanence doses now though.
I have to go in regular for tests to make sure it hasn't spread (normal pattern seems to be: lungs, kidneys, liver, eyes, brain!)
I have to carry a steroid card and to be honest even though I didn't let it affect my work I haven't felt properly well in the last 4 years.
Could be worse though, consultant says thirty years ago I'd be dead by now!
Edited by br d on Wednesday 21st March 20:17
Edited by br d on Wednesday 21st March 20:18
mikebradford said:
Anyone here suffer from sarcoidosis?
i got diagnosed over two years ago with it.
did the typical manly thing with a bit of a chest infection, kept thinking it would go away. wife kept nagging me to go to doctors
it would go a little then come back, then i would cough up little lumps
then my right eye started hurting on occasion in strong sunlight
picked my kids up from my mums, walked outside and was very nearly in tears as i got a blinding pain in my eye
went inside after about 10 mins i was ok, ill admit i was nearly in tears with the pain
wife came home, bked me so i went to chemist
she rightfully refused to give me advice and said i had to go to see my doctor
doctor said what he thought it was straight away, specialist within a few days
x rays lung function test endoscopy later, fully diagnosed
heavily scarred lungs etc, at first 53% efficent gas exchanges in my lungs
6 monthly check ups, as they do not want to put me on the steroids, as they are particully bad ones
good news was that i thought i was just getting old and unfit! lol
just wondered if anyone else suffers with it?
as its supposedly fairly common, but like most things its the degree you suffer from it
as some dont know they have it, as its so mild, and effects people in different ways
Yes, I was diagnosed a couple of years ago. Mine presented with pretty classic symptoms, the dreaded persistant dry cough (which I had had seasonally for at least 3 years prior), erythma nodosum all over both legs, and in the end crippling arthritis in ankes, knees, hips, elbows and shoulders. My ankles were about the size of a large grapefuit. I also had chronic fatigue.i got diagnosed over two years ago with it.
did the typical manly thing with a bit of a chest infection, kept thinking it would go away. wife kept nagging me to go to doctors
it would go a little then come back, then i would cough up little lumps
then my right eye started hurting on occasion in strong sunlight
picked my kids up from my mums, walked outside and was very nearly in tears as i got a blinding pain in my eye
went inside after about 10 mins i was ok, ill admit i was nearly in tears with the pain
wife came home, b
ked me so i went to chemistshe rightfully refused to give me advice and said i had to go to see my doctor
doctor said what he thought it was straight away, specialist within a few days
x rays lung function test endoscopy later, fully diagnosed
heavily scarred lungs etc, at first 53% efficent gas exchanges in my lungs
6 monthly check ups, as they do not want to put me on the steroids, as they are particully bad ones
good news was that i thought i was just getting old and unfit! lol
just wondered if anyone else suffers with it?
as its supposedly fairly common, but like most things its the degree you suffer from it
as some dont know they have it, as its so mild, and effects people in different ways
This all cleared up within days when I was immediately put on steroids.
I have had a few flare-ups since, when my consultants tried to wean me off the pred. Last one was when I went on holiday to Florida last year, which was amazingly poor timing! I was falling apart by the end of the holiday and have scars all over me as a result.
Current status:
- I developed steriod-induced Diabetes about a year ago, and was put on 4x daily insulin injections. After a couple of months my diabetes we so well controlled I started having hypos, so came off insulin and onto metformin.
- I have had kidney stones and have passed a few - a very painful episode in hospital - and still have a couple in there, so have some pain to look forward to. I have had hypercalcurea (calcium in my pee) but an increase in the steroids seems to have brought that under control at the expense of making the diabetes worse. I am on the max safe Metformin dose and may have to go back onto insulin if my blood sugars don't sort out soon.
- I get regular lung function tests, and my results are good (above healthy average) which I put down to years of bodybuilding giving me a good set of pipes in the first place. Key thing is they are not getting worse, despite the dry cough still being a seasonal feature, albeit less drastically. Lymph nodes are still enlarged.
- I had a full set of ultrasound, x-ray and CT scans recently which showed up the kidney stones, enlarged spleen, and apparent cirrhosis of the liver. Since I barely ever drink and eat a healthy diet that "cirrhosis" diagnosis is suspect, and I have an appointment with yet another specialist to check for sarc in my liver.
- I too have severe light sensitivity issues, and wear sunglasses most of the time. Bright sunlight will give me an instant tearing headache above/around my left eye, and my eyes feel like they are going to burst. Interestingly I noticed a new symptom yesterday; when the sun gets too bright my vision starts flickering like a computer game running at a low fps setting; if I shield my eyes the flickering stops. Weird.
- I still suffer symptoms of fatigue in almost direct relation to the level of sunlight.
- I have osteoporosis brought on from long term use of the steriods and have to take a weekly bomb of alendronic acid to keep that in check.
- My ability to handle stress has all but vanished, I'm not sure if thats due to the sarc or the pred, or both.
Edited by VictorMeldrew on Monday 26th March 15:10
Cheers Mike
The main thing I've learned is to be good to yourself. If I overdo anything I pay the price, so I try to take it easy and not set myself targets that will drain me, either at work or at home.
On the plus side I don't get asked to so as much around the house these days, so it ain't all bad!
The main thing I've learned is to be good to yourself. If I overdo anything I pay the price, so I try to take it easy and not set myself targets that will drain me, either at work or at home.
On the plus side I don't get asked to so as much around the house these days, so it ain't all bad!
Just been diagnosed with this. Sounds like I have a fairly mild case relative to some of the stories you read.
All started with what I thought was a chest infection last November that I just couldn't shift. Three rounds of antibiotics later and I'm sent to the hospital for a chest X-Ray (as a precaution). Get a call from the GPs on Christmas Eve, told nothing to worry about but the GP wants to discuss your X-Ray with you, will call after Christmas, and you need a blood test. My thoughts start going into overload at this point and I pretty much convince myself that I've got lung cancer.
Spoke with the GP a few days later, nothing to worry about but we're sending you for a CT scan as there are some abnormalities showing on the X-Ray. Had the blood test done on New Years Eve and nearly feinted (not good with needles etc.).
Went back to work after Christmas and lasted all of a couple of days before heading back to the GP, signed off for two weeks and put on medication for anxiety.
Had the CT scan and waited for the results form the GP, had a phone call from on of the doctors I've not actually met and wasn't massively impressed with the "bedside manner". Told I was being referred to the hospital and it was being treated as a cancer case so that I would be seen quickly, might not be cancer though. Beginning to have a melt down at this point, mentioned to the GP that I was currently signed off and she extended it by four weeks.
Hospital were much better, the consultant suggested Sarcoidosis at the first appointment as I didn't really fit the profile for cancer. The anomalies shown on the X-Ray and CT were enlarged lymph glands in my chest and possibly some granuloma consistent with Sarcoidosis. Next step was to have a broncoscopy during which a needle would be used to take a small biopsy from the lymph glands guided with ultrasound. Had that done a few days later under sedation. Not pleasant but I held it together.
Broncoscopy was inconclusive which was a shame so I was then referred for a full biopsy under general anaesthetic. Had that done a few weeks later and the initial results a few weeks after that - no cancer. Biggest relief ever.
Back to the consultant yesterday where Sarcoidosis was confirmed. Some debate as to whether to start on steroids or not. He said that if it were just my lymph glands that were effected then he would advise against steroids but as there is a little scarring on my lungs steroids should be considered. He then went on to list the hundreds of side effects which seemed to be basically telling me don't go on them unless you really have to.
At the moment most of the symptoms has subsided. I've had lung function tests and it's all normal at the moment. I'm therefore thinking that staying away from steroids is the right thing to do for now. Booked in for another CT scan in August to see how things are progressing and we'll take it from there I guess provided things stay normal in the meantime.
Must say my fear of needles, hospitals etc. has improved a lot throughout this. Had at least three lots of blood tests + cannula inserted for the CT, broncoscopy, and surgery. Pleased that the frequency of procedures will be reduced now
All started with what I thought was a chest infection last November that I just couldn't shift. Three rounds of antibiotics later and I'm sent to the hospital for a chest X-Ray (as a precaution). Get a call from the GPs on Christmas Eve, told nothing to worry about but the GP wants to discuss your X-Ray with you, will call after Christmas, and you need a blood test. My thoughts start going into overload at this point and I pretty much convince myself that I've got lung cancer.
Spoke with the GP a few days later, nothing to worry about but we're sending you for a CT scan as there are some abnormalities showing on the X-Ray. Had the blood test done on New Years Eve and nearly feinted (not good with needles etc.).
Went back to work after Christmas and lasted all of a couple of days before heading back to the GP, signed off for two weeks and put on medication for anxiety.
Had the CT scan and waited for the results form the GP, had a phone call from on of the doctors I've not actually met and wasn't massively impressed with the "bedside manner". Told I was being referred to the hospital and it was being treated as a cancer case so that I would be seen quickly, might not be cancer though. Beginning to have a melt down at this point, mentioned to the GP that I was currently signed off and she extended it by four weeks.
Hospital were much better, the consultant suggested Sarcoidosis at the first appointment as I didn't really fit the profile for cancer. The anomalies shown on the X-Ray and CT were enlarged lymph glands in my chest and possibly some granuloma consistent with Sarcoidosis. Next step was to have a broncoscopy during which a needle would be used to take a small biopsy from the lymph glands guided with ultrasound. Had that done a few days later under sedation. Not pleasant but I held it together.
Broncoscopy was inconclusive which was a shame so I was then referred for a full biopsy under general anaesthetic. Had that done a few weeks later and the initial results a few weeks after that - no cancer. Biggest relief ever.
Back to the consultant yesterday where Sarcoidosis was confirmed. Some debate as to whether to start on steroids or not. He said that if it were just my lymph glands that were effected then he would advise against steroids but as there is a little scarring on my lungs steroids should be considered. He then went on to list the hundreds of side effects which seemed to be basically telling me don't go on them unless you really have to.
At the moment most of the symptoms has subsided. I've had lung function tests and it's all normal at the moment. I'm therefore thinking that staying away from steroids is the right thing to do for now. Booked in for another CT scan in August to see how things are progressing and we'll take it from there I guess provided things stay normal in the meantime.
Must say my fear of needles, hospitals etc. has improved a lot throughout this. Had at least three lots of blood tests + cannula inserted for the CT, broncoscopy, and surgery. Pleased that the frequency of procedures will be reduced now
I was eventually diagnosed with this, after a selection of different doctors diagnosed TB, then Lung cancer - eventually we got to a proper diagnosis!
With me, it manifested itself as
Drenching night sweats
Chronic (crippling) muscle / joint pain
Rapid weight loss
Fatigue (constantly felt like i'd not slept for a week during the day)
Erythema nodosum all over my legs
Plus the usual breathing issues.
It's surprising how many tests, scans, X-rays are involved for this sort of thing, although the unsedated bronchoscopy was especially unpleasant (watching them tear off bits of my lung tissue on the screen and the sensation inside as they did it).
They hit mine hard with the steroids, something like 50mg per day which made me balloon up like Dr Kananga at the end of Live and Let Die. That dose also had me seeing things and other eye problems.
Luckily all the symptoms went away after a few months, i'm praying they don't return either.
With me, it manifested itself as
Drenching night sweats
Chronic (crippling) muscle / joint pain
Rapid weight loss
Fatigue (constantly felt like i'd not slept for a week during the day)
Erythema nodosum all over my legs
Plus the usual breathing issues.
It's surprising how many tests, scans, X-rays are involved for this sort of thing, although the unsedated bronchoscopy was especially unpleasant (watching them tear off bits of my lung tissue on the screen and the sensation inside as they did it).
They hit mine hard with the steroids, something like 50mg per day which made me balloon up like Dr Kananga at the end of Live and Let Die. That dose also had me seeing things and other eye problems.
Luckily all the symptoms went away after a few months, i'm praying they don't return either.
Edited by littlebasher on Tuesday 14th April 13:26
Good to know that it can be cleared up. Maybe a short course of steroids might no be such a bad idea?
But then as I've said mine seems quite mild in comparison. Breathing / lung function ok, not affecting anything other than my lymph glands / lungs, bit tired but then I am anyway - two young children to blame for that.
Oh well happy to wait until the next CT scan before making any decisions.
But then as I've said mine seems quite mild in comparison. Breathing / lung function ok, not affecting anything other than my lymph glands / lungs, bit tired but then I am anyway - two young children to blame for that.
Oh well happy to wait until the next CT scan before making any decisions.
C0ffin D0dger said:
Good to know that it can be cleared up. Maybe a short course of steroids might no be such a bad idea?
But then as I've said mine seems quite mild in comparison. Breathing / lung function ok, not affecting anything other than my lymph glands / lungs, bit tired but then I am anyway - two young children to blame for that.
Oh well happy to wait until the next CT scan before making any decisions.
It's a strange disease (if it is a disease?) to judge. The specialist that i saw was able to tie a load of problems i had prior to the flare up, back to the Sarcoidosis.But then as I've said mine seems quite mild in comparison. Breathing / lung function ok, not affecting anything other than my lymph glands / lungs, bit tired but then I am anyway - two young children to blame for that.
Oh well happy to wait until the next CT scan before making any decisions.
e.g. Kidney stones, Pericarditis, dark spots in my field of vision etc.
I guess it had been grumbling on in the background before it really got a hold of me, may be worth pushing for them to do something now rather than letting it get worse.
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