I have just been diagnised with Sarcoidosis, does anybody else out there have it I feel a bit isolated at the moment, if I mention it to anybody they say whats that !!!!
Sarcoidosis: I have just been diagnised... - Lung Conditions C...
Sarcoidosis
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coughcake
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21 Replies
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Hi Coughcake
I have sarcoidosis. I was diagnosed in April 2011 after a lot of tests! I can understand that you feel isolated - there doesn't seem a lot of us about and I had only heard of the disease because I was an avid fan of House - where it was always offered up as a possible diagnosis.
Have they put you on any treatment? I take it you have it in your lungs.
There is a support forum for people with Sarcoidosis sila.org.uk who can provide lots of advice (although I sometimes find there is too much information if that makes any sense?).
Happy to try and answer any questions you might have.
Marie
x
Hi Marie
Thankyou for replying, yes I have got it in my lungs, and the only treatment I have at the moment are inhalers from my GP the consultant has not given me anything, however I have got more tests booked in the near future.
R x
Hi
What sort of tests? Good you have only got inhalers and that you have seen a consultant.
Good luck
Marie x
I have got to have a Echocardiogram of my heart on 8th of next month then lung function tests on 3rd Septthen back to see consultant 31st Oct I have to admit Hereford Hospital have been very efficient and my consultant is really nice.
I am presuming you have it in your lung aswell ? What treatment are you on, did you have a Biopsy, I have refused that at the moment until ebery thing else has been tested.
They are also testing me for Sleep Apnea
Take Care
Rose x
Hi
It was after a bronchoscopy that they discovered the sarcoidosis granulomas. They were going to do a biopsy but they didn't think my lungs could take it. I have had lung function tests and an echocardiogram. Luckily it hasn't affected my heart.
I am on prednisolone and azapriothine (an immunosuppressant) and all the gubbins you have to take to counteract the side effects of these meds.
It is in my lungs but it seems to be the only place I have it (I've seen eye and ENT specialists to make sure it's not in my eyes and sinuses).
Unfortunately (and this isn't to scare you) I need a lung transplant because of the damage and continuing damage. Whether I'm a suitable candidate remains to be seen. Having said that I'm doing ok at the moment and trying to keep as fit and healthy as I can.
Marie x
I obviously have it quite mildly, although I think I have had this for a lot longer tan I realised thinking back!
I am so sorry that you have to have a lung transplant but I do hope you are a suitable candidate, do you get a lot of pain I find the breathlessness is the worst thing
Rose x
• in reply tocoughcake
Hi Coughcake
I too have had it for a lot longer than they think.
I am in no pain now and only get breathless when I'm walking a fair distance (well up to about half a mile) and I work full time at the moment. My symptoms almost stopped immediately once I started meds and to be honest once they'd got rid of the terrible chest infection I had which got me to the doctors in the first place I felt better than I had in years. The only thing I have had trouble with is the side effects of the steroids. The weight gain and worst of all the moon face.
Marie x
coughcake• in reply to
I also have Ulcerative Colitis and on occaisions I have to take Prednisilone for that although that is pretty much under control at the moment and I only have occaisional flair ups. Weight gain is the worst thing, I battle with my weight anyway so it's a double whammy, just before last Christmas I had a bad tooth and I thought my face was going to explode it got so round !!!! Anyway I found quite a good diet and have lost nearly two stone so I am feeling quite pleased with myself.
Rose x
hi coughcake i cant believe it lol i i also have sarcoiosis andd colitis the thing is i feel there is a connection to them both and i am looking into this i read an article and it said they where connected i have only got colitis since i was diagnosed with sarcoid best wishes to you
Hi coughcake, sarcoidosis is a bit of a mystery but there are some good sites online so look things up when you want to. Sila is a good forum/community and you would get lots of support there. My husband was diagnosed 21 years ago and we had to go to the library for info back in those days! It is good you are being treated and hope you get all the help you need. Who knows, it could burn itself out. My husband is under the Royal Brompton and we go to London once a year to see a specialist. On the whole things are good unless a nasty chest infection raises its ugly head because hubby also now has COPD due to scarring on the lungs. Good luck to you and stay well and get all the help available to you. Best wishes, sassy59. xx
• in reply tosassy59
They actually think mine has also burned itself out - but like you say its the scarring of the lungs which has caused my problems and the fact that every little infection kills a little bit more of your lung capacity off. I have never been offereed a referal to Brompton.
Marie
Thankyou it's nice to communicate with other people with the conditionn I have looked at the Sila forum it does seem quite helpful.
Best wishes to your husband, kepp being supportive to him, my husband is supportive but I think he is having problems getting his head round it all.
Take Care Rose x
I had sarcoidosis when I was in my early 20's. The first i knew something was wrong was getting short of breath. It effected my lungs only. Both lungs were scarred by the granules. I was given a full lung biopsy when, no scope then. The reason for that is my sarcoid was so bad although sarcoidosis was what the chest doctor thought it was, it could have been a cancer. I was after the biopsy and diagnosis confirmed, given a very long course of Prednisolone. I made a full recovery from Sarcoidosis. However, my lungs had already been damaged quite badly by whooping cough, Sarcoidosis further weakened them, so now have very severe copd the main part being emphysema. It was thought sarcoidosis mainly effects young men, but since I have learned of young woman going for transplant because of this little understood illness. My mother at 84 years contracted Sarcoidosis five years ago. My thought is it maybe an immune system disorder.
Derrylynne
Thats similar to me. My lungs have been weakened by infant bronchitis (I come from a family who have rubbish lungs to start with) and the sarcoidosis made them worse. I have just found out that my primary school teacher has just been diagnosed - she is in her late 60s.
Marie
x
Can I ask if any of the sarcoidosis sufferers have 'sarc marks' as I like to call them? I have them dotted around my torso (like birthmarks). They have reduced in appearance since the pred but are still visible. Also I suffered with sores on my nose and ears. Anyone else?
Again these have healed completely, but I was just interested in whether others had had similar.
Marie
x
AmethystAngel• in reply to
In relation to 'sarc marks' Marie, do you mean ones that look like a small mole but are red and slightly raised? as I too have them dotted around my torso.
Catherine x
hi coughcake, I have sarcoidosis, mainly in lungs, but has also affected lymphnodes in chest and last week at Brompton it was confirmed I have scarring in heart. I don't know how long I've had it but it was found in 99 after xray for something else. looking back i think I got it about 1990. unfortunately mine hasn't burned out and they are having trouble stabilising it, I take pred methotrexate hydroxycloroquine amongst a lot of others. I have severe PF and am also borderline PH. I have been on 24 hr O2 for just over 2 years. I think I'd be dead if I hadn't got under the care of the brompton in 2008. i go there about every 3 mnths and have stayed in quite a few times. Unfortunately I had to stop working last December but had pushed myself to the limit and could'nt manage it any longer. I have just been put on Zithromax long term antibiotics because chest infections are getting more frequent. I have discussed transplant with my doctors, but at the brompton they only send you for assessment when you have only 2-3 years left so would presume I'm good for that long at least bar anything drastic happening. Don't really understand all the lung function jargon but was told I only transfer 25% oxygen without supplement O2. I find the worst things are the breathlessness and the cough, which starts from the moment I wake up to when I sleep, hacve tried all sorts of drugs latest given last week was gabapentin, would be interested if anyone else has had success in stopping the cough. Best wishes to you and will try to be of any help I can. Jill
Hi Jill
I have stopped the cough, which absolutely amazed me. I was told to take Potters Cough Remover from the Health Shop and in 2 days it was gone!!!!!!!
I am off for a heart scan on Wednesday so wish me luck !
I always used to be a morning person, however this last two weeks I have really struggled I get up at 6am because I have to be at work for 7 and I need to eat before I go and I am now finding that extremely difficult for some reason. R
Hi coughcacke, I have Sarcoidosis I have had it since 2006, I am now only on 5mg Pred.
Hi,I've had sarcoid since 2003.I went to the doctor on the 23rd and was told my wbc count is now too low to fight infection.This illness is very hard to treat.Some get lucky with steroids and a lot like me have tried all sorts of me s and nothing works.
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