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sarcoidosis

  • #2
    Closed Accounts Posts: 9,850 RxQueen


    Just wondering if anyone knows anybody affected by this, and what yer treatment is like??

    Just trying to get some information, not alot of people seem to know much about it tbh

    thanks in advance for any info ye might have


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Comments

  • #2


    I was diagnosed last October/November...it is on my liver but was far better than the altenatives..I must admit that I did not look into it much yet.


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    hubby was diagnosed in February, still dragging on now. He has it in his lungs, it was only diagnosed "by accident" when we had to go to casualty cause he had a very very bad flare up - all joints were inflamed, he couldnt walk, etc. Not much fun. Since then, he's had a good few tests done, and they put him on methathraxate (cancer drug) - it's getting better slowly...

    Let me know if you have any specific questions ;-)


  • #2


    Hi.
    Don't know if you've heard of this but there is a support group for sarcoidosis.
    http://www.isarc.ie/who.html

    They're based in Offaly but have recently started up a group in South Kerry.

    You can also subscribe to their annual newsletter.

    They fundraise a lot to help funs research into sarcoidosis.

    If you want any more info please PM me.


  • #2


    I've been living with pulmonary sarcoidosis since 2004 which involved a lot of prednisolone and it's side effects over the years, which are arguably worse than the actual disease.

    I'm on a maintenance dose now and leading a pretty normal life but I do regret not getting involved in some kind of a support group or even talking to someone about it. I more or less kept it from my friends. I wasted a few years feeling sorry for myself about it.


  • #2
    There is alot of this in my family.
    It comes with redhair.
    For the most part they haven't recieved treatment, For them it was/is like a flu that lasts for a couple of years. Eventually it burns itself out.


  • #2


    Reviving this thread!
    I have been diagnosed with this for close to two years now though the symptoms were there for at least a year beforehand. I was wondering how people manage with the various aches and pains that come with this?

    My backstory for this is that I was diagnosed while I was living in France (two hospitals in Ireland didn't pick up on it at all) and I was on prednisone,aziathropine and various steroid eyedrops like dexamethasone and atropine. However, I felt awful on those treatments and combined with various other factors, I decided to stop them when I moved back to Ireland. For the most part, I feel much better and my lungs generally do not hurt. I get a fair amount of pain in my muscles though, especially around my stomach. How do people cope with this? Does anyone have homebrew remedies to share?!


  • #2


    I was diagnosed July 09 and have been finding it difficult to cope with the variety of symptoms it has been throwing up. It started last year with arthritis in my ankles and wrists but I just found out last week my right eye has vascular sheathing (not sure what implication that has, at least it is in my lazy bad eye :D) This week the joint and muscle aching is back but wont know what the consultant has planned for me until my next visit in July.

    Terrible thing is that it is very common disease among us Irish yet so little support is out there locally for us. Best wishes everyone else with it, its no joke! :o


  • #2


    Hi All,

    I was diagnosed in '96 - I was living in London - and got really bad erythema nodosum (don't ask me to spell) i.e. rash, lumps that became huge and all my joints ached so much and swelled up. Ironically after weeks of being tested for various things in London i.e. allergy to other medication, at one stage laughter of it's not T.B from 2 doctors. Really consoling that was!!! But I remember flying home to Cork for the Easter Weekend, to see the family - and ended up in Cork for 2 months including a 2 week stay at CUH - because I was so ill when I woke up and I couldn't physically walk, so my mother brought me to her local doctor and it was he in Cork who diagnosed suspected Sarcoidosis (I'd never even heard of it). Mine was also in my lungs, discovered after they did a biopsy.

    I was put on prednisole also - and was warned by everyone to expect weight gain - the funny thing was - I didn't gain any weight (apart from the boobs going up a size tee hee).

    But as I said I was off work for 2 months on this medication and once we knew exactly what was wrong with me - I started improving fairly quickly - I had regular visits with a Specialist Doctor at Hammersmith Hospital - seeing him at least once a month - and was on the Steroids for one year.

    The other thing is they were very strict about my diet - I was told NO NO NO to vitamin A and vitamin D - keep out of the sunshine (as it converts vitamin D into calcium). And I changed from white to brown flour products and watched every morsel I was eating. And I actually forgot I had it. as I did feel good.

    A friend of mine was diagnosed over here with it, about 2 years ago - but was told nothing about the Calcium out of the diet. Apparently, the reason I got the erythema nodusum was that I had an allergy alright - to calcium, as my own body was manufacturing the vitamin A & D into calcium too quickly, so I was poisoning my own body. One of the things Sarcoidosis could do. At the time because of this calcium over-dose they were more worried about my kidneys being badly affected by the whole thing.

    So I'm not sure if my ever so long story helps in anyway - but as I said in the UK and before I left the CUH I was told to go on this strict diet - and when I returned to the UK 2 months later, I was back to work and back to normal - with just the regular specialist appointments to check the steroid levels etc. And that was all 14 years ago, please God it's been dormant since.

    Though in the meantime, last year, due to immense stress/shock in my life for 12-20 months I got Fibromyalgia - but I'm trying to stay calm/positive and doing a lot of pilates to try and help muscles when they hurt.

    Good Luck to you all - I was a basic test case when I was in CUH all those years ago, very few people had ever seen the erythema nodosum like I had. I blew up to look a bit like the michellin tyre man and I was confined to a wheel chair for a few days, couldn't move - so doctors and nurses were all coming in to have a look at me.

    And how did I get it? Nobody knows.................. Could have been a weakness within me from previous surgery, it's one of those great mysteries. Just try and stay positive. Take care, JUDES


  • #2


    I was diagnosed with Sarc just over 2 years ago. My GP sent me to A&E with kidney stones. Had a cat scan done to see how many there was and the results showed that my spleen was enlarged!! Had a lymph node biopsy done and Sarc was diagnosed!! Could of been worse!! I was lucky they diagnosed it quickly as they pretty much done the last test first!! Finally got off preds a couple of weeks ago after two years! At the moment my lungs show very little sign of sarc ever being there. At the moment my spleen is still enlarged and kidney stone 13 hasnt materialised yet:D!! I think there are a lot more of us out there - they just dont know it yet!!!!!!!!!!!!


  • #2
  • #2


    I was first diagnosed 4 years ago when vision in my left eye deteriorated substantially.
    GP sent me to the Eye & Ear to see a specialist, who after looking at my eye sent me for a chest Xray.
    Puzzled by his request went and had it done and was sent on my merry way.
    That night about 9pm get a call from same specialist asking me to make an appointment with a Dr.Lane in Charelmont clinic.Needless to say I was up the wall thinking I had the big C.
    It was only after visiting him that I was told I had Sarcoidosis of the Lungs which in all likelyhood caused problem with my eye.
    I was put on course of steroids for eye problem which never got much better causing me too take early retirement from job as bus driver.
    4 years on and I still have Sarcoidosis and related heart problem.
    Think the most annoying part is although you look the picture of health, inside you feel you could drop any moment.
    Get the feeling people are then saying he can't be bothered getting off his lazy arse to look for work.
    GP was telling me that there is a substantial increase in cases locally.
    On a finishing note, it seems like there could be a lot more info put 'out there' as Ireland has an exceptionally high rate of cases. Would it be asking too much off the goverment to set up a website with all available info and links.


  • #2


    I find it frustrating too, when you look fine on the outside but it's a different story on the inside. Sunny days especially have me out for the count. One piece of advice that I was given and that has really worked for me is to follow a gluten free diet. Apparently many people who have sarc are also coeliacs. It's a bit of an adjustment, but I feel a lot better than I did before.


  • #2


    Following x-rays of the lungs (because of blood clots), I've been diagnosed with probable sarcodosis of the lungs, with significant scarring evident in the x-rays. I have had some pain and breathlessness- but am otherwise sympthomless. Are there any questions I I should be asking?


  • #2


    smccarrick wrote: »
    Following x-rays of the lungs (because of blood clots), I've been diagnosed with probable sarcodosis of the lungs, with significant scarring evident in the x-rays. I have had some pain and breathlessness- but am otherwise sympthomless. Are there any questions I I should be asking?

    Sounds similar to my symptoms. I was diagnosed about 4 years ago, was losing loads of weight, tired all the time and getting bad night sweats. GP thought it was TB so sent me to A&E but after getting bronchoscopy and a biopsy they found out it was Sarcoidosis on the lungs. Doctor said it wasn't acute enough to warrant treatment with steroids thankfully. I havent had many flare ups since the original diagnosis. Sometimes I go through a few days of shortness of breath and chest pains but they pass.

    On a side note I also smoke and there have been some studies which indicate that smoking may actually help prevent the development of serious Sarcoidosis symptoms.

    Studies
    http://thorax.bmj.com/content/43/7/516
    http://www.ncbi.nlm.nih.gov/pubmed/8630452

    Discussion
    http://www.inspire.com/groups/stop-sarcoidosis/discussion/smoking-suppresses-sarcoidosis/


  • #2


    smccarrick wrote: »
    Following x-rays of the lungs (because of blood clots), I've been diagnosed with probable sarcodosis of the lungs, with significant scarring evident in the x-rays. I have had some pain and breathlessness- but am otherwise sympthomless. Are there any questions I I should be asking?

    Has the doctor suggested going on prednisone or aziathropine (Imuran)? The people on Inspire suggest getting the following tests-PTH, serum calcium, Vit D 1,25, PO4 and a 24 urine calcium. I haven't had any of those tests, but I was on the steroids for about 8 months. My lungs are much better now.


  • #2


    Anyone know if it is inherited or not - I have sarcoidosis and my husband does too but we have a son, just wondering his chances of getting it.


  • #2


    alexjk wrote: »
    Has the doctor suggested going on prednisone or aziathropine (Imuran)? The people on Inspire suggest getting the following tests-PTH, serum calcium, Vit D 1,25, PO4 and a 24 urine calcium. I haven't had any of those tests, but I was on the steroids for about 8 months. My lungs are much better now.
    He is allergic to Imuran and has crohns so is no stranger to Prednisone unfortunatly...is good to know that your lungs are much better now, with mine it was in the lymph nodes and liver so far.


  • #2


    Some say it's inherited and some say that you need to be exposed to something to get it. Apparently cases in New York rose significantly after September 11th, with all the dust in the air, with firefighters being particularly affected.


  • #2


    So they do not know...fair enough. It is fustrating that it can be so difficult to diagnose.


  • #2


    Doctor said to me he believed it is heriditary. a cousin of mine also has it. From reading studies etc there seems to be nothing definitive though?


  • #2


    Doctor said to me he believed it is heriditary. a cousin of mine also has it. From reading studies etc there seems to be nothing definitive though?

    It's not believed to be genetic, although I know of one family where 3 people have it. There needs to be more research!


  • #2


    Do you sometimes feel as though you're not taken seriously at all by doctors? I have been told in the past that sarcoidosis is nothing to worry about and that most people don't even realise they have it. This definitely does not apply to me, it's impacted my life a lot in the last few years. At 21, I struggle to stay awake past midnight on nights out but then if I spend the day outside, I pay for it later on.

    I don't know anyone else with sarc, so I have no idea if this is normal. I don't like trying to explain it to people because when I say it out loud, it sounds really vague and I feel like I'm a hypochondriac. Some days it's just really frustrating.


  • #2


    alexjk wrote: »
    Do you sometimes feel as though you're not taken seriously at all by doctors? I have been told in the past that sarcoidosis is nothing to worry about and that most people don't even realise they have it. This definitely does not apply to me, it's impacted my life a lot in the last few years. At 21, I struggle to stay awake past midnight on nights out but then if I spend the day outside, I pay for it later on.

    I don't know anyone else with sarc, so I have no idea if this is normal. I don't like trying to explain it to people because when I say it out loud, it sounds really vague and I feel like I'm a hypochondriac. Some days it's just really frustrating.

    Feel your pain bro! Like i posted earlier you start to get paranoid that people cannot and don't want too understand all different variations of symptoms on each individual.Plus you just know people are saying 'there goes one lazy bastard and he the picture of health'

    The tiredness is a common complaint from what i've heard /read and suffer with it myself going for the 'old man nap' in the afternoon and me still in me early fortys.

    If you feel your GP isn't taking you seriously, go elsewhere, as i know my own GP takes it very seriously and will even tell you about increased cases in our area.

    If your just suffering with tiredness, you could be lucky enough and hopefully recover in a few years or less. A cousin of mine who is about your own age is just after being through the mill (won't go into detail about extremity of her case)and seemingly over the worst of it.

    It is just a matter of trying too keep your spirits up and getting on best you can. You'll find anyone you meet who has or knows somebody with this scourge of a illness will sympathise with you!

    All the best young 'unbiggrin.gif


  • #2


    I have started napping as well, it helps! I'm not as bad as I was last year, but I think summer just doesn't sit well with me. Does anyone know if there are pulmonary or cardiac doctors that have a good knowledge of sarcoidosis in Dublin?


  • #2


    alexjk wrote: »
    I have started napping as well, it helps! I'm not as bad as I was last year, but I think summer just doesn't sit well with me. Does anyone know if there are pulmonary or cardiac doctors that have a good knowledge of sarcoidosis in Dublin?

    Dr. Stephen Lane in Charlemont Clinic is the main man as far as sarcoidosis is concerned,but costs big bucks too see him privately.
    Alternatively get your GP too make an appointment too see him as an outpatient in Tallaght.


  • #2


    Wow, just came across this thread by accident, 17 months ago I found lumps in my legs. At the time I thought nothing of them but they became very painful and 11 months ago I went to my gp.

    After various tests and biopsy's and whatnot I was told I have extreme erythema nodosum, as another poster said this is connected to sarcoidosis.

    The consultant that diagnosed this said it was because of my pill, went back to my gp who didn't agree and sent me for xrays and blood tests to see did I have TB or sarcoid. All came back clear apart from one thing on the xray to show an infection in my body.

    I was then sent to a dermatologist in St James's where she is full sure I have sarcoidosis in the lungs.

    Seeing a pulmonary doc on Friday for a million and one tests.

    Lets hope after all this time I get some answers :)


  • #2


    Anyone a member of the Sarcoidosis Group? Is it worth a look?

    Last years diagnosis of temporary type (8 months) Sarcoidosis is now turning into chronic. This is on top of lupus. Go me on the immune diseases!


  • #2


    Doc told me the last day that they dont tell anybody anymore that sarcoid will go away! He said that when in remission they would have to see you once or twice a year to keep an eye on it. People who have not bothered with this he said have returned to them when it was too late. Their lungs were ravaged and they ended up on the transplant list!


  • #2


    ^^ while the above post is a tad dramatic and sensationalist, it raises a good point of the importance of keeping under medical review.

    however,you would not end up sick enough to be on a lung transplant list without being quite symptomatic for quite some time.


  • #2


    My apologies for coming across that way!! Was having a bad day when i wrote it!! Should of read over it before i posted!! However that is how the doc put it to me!! He was making it easy for me to understand!!!!;)


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