sarcoidosis

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 ;-)

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.

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?!

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

There was an article on Sarcoidosis in the Telegraph (UK newspaper) in the last week:
http://www.telegraph.co.uk/health/men_shealth/7843500/Sarcoidosis-Mystery-illness-poleaxed-me-and-perplexed-my-doctors.html

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.

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/

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.

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?

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.

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?

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!

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!!!!;)