Sarcoidosis

[mamalovesmojitos]

Any mnetters with experience of this disease?

Yes - my dh was diagnosed with it about 5 years ago. What do you want to know?

well, i suppose i'd like to know how he was treated and if he did anything besides rest/steroids and found that it helped. diet/accupuncture/alternative medicine of any kind?

i've recently been diagnosed as you may have guessed .

My best friend has had sarcoidosis for two or three years now.

She started off with terrible purple lumps coming up on her legs and arms, feeling generally achy and exhausted all the time. It took her a while to get a diagnosis but a locum GP recognised it and sent her for a chest X Ray which confirmed that this was what she has.

The treament was just lots of rest and ibuprofen - steroids were mentioned at one point but she wasn't keen to try these unless it started to affect her more severely.

Fingers crossed, she is much better now, to the point that she has been able to take a job as a chambermaid which would have been impossible a year ago when all she wanted to do was sleep. She has regular check ups to make sure it isn't affecting her heart, lungs etc but she really is feeling like her old self which is great!

Has someone you know been diagnosed with it?

My dh's was quite mild. No scarring on lungs/heart etc. Only manifested itself in scarring on arms and along scalp line. He was quite tired, but didn't ever take steroids.

He was having acupuncture anyway, and we try to eat an organic diet.

Not that it's funny, but I had to smile when the GP told dh that it's most common in Afro-carribean women and horses!

Sorry - meant to say, the marks have stopped developing now. It took about 4 years.

thanks misspiggy. i've been diagnosed myself.

oh gawd, did it actually take your friend a year or two to have the energy for a job? i can barely do anything at the moment but hoping it'll only be for a few weeks .

i am delighted to hear she is getting back to her old self now .

littlefish thank you too. did he manage to work etc as normal at the time or did he need much rest?

i might look into acupuncture, have never tried it

your gp's comment is kind of funny .

Sorry, got side tracked by DH mid post so have just seen that you have been diagnosed with it.

My friend K didn't try any of the things you mention (acupuncture etc) but did change her diet so that she was eating more healthily. It really was just a case of if she was having a bad day, giving in to it, getting plenty of rest and dosing herself up on ibuprofen.

Sorry not to be very much help.

Yes - worked as normal. Was possibly a bit more tired, but as it developed just after we had dd, I don't know if it was the sarcoidosis, or new baby tiredness!

oh, well both your posts sound quite positive. i may be tired but i just need to mind myself, rest as well as work, and wait it out.

the thought of it taking a few years to leave me is a huge disappointment but it could be a lot worse, i know. it's not a terminal illness.

there is not a lot of information on the disease out there so if you think of any more things do please let me know! just trying to get my head around it .

thanks very much.

It really, honestly didn't affect dh badly. I would say that his life really did carry on mostly as normal. Perhaps he was lucky and only had a very mild case? As I said, he was already having acupuncture, so I can't say for sure whether it helped, but if you can afford a few sessions, it certainly can't hurt.

I found an American website which frightened me silly as all the people on it seemed to have been affected really badly. I suppose that's the way it goes - those who are affected mildly are not going to post asking for support, whereas those who are affected badly, will, which may make it seem worse than your case might be.

Anyway, good luck!

that's a great point actually regarding the us website. i've been feeling pretty rotten but it's only been five or so weeks. so who knows?

i too stumbled across some American websites and my goodness they totally freaked me out. EVERYBODY posting seeemed to have huge problems. i never thought about it the way you did - they are posting for support because they need it. phew!

feeling good today . thanks again.

DH has had it probably since 1983, but only got a diagnosis in 2002. Although he has had 2 outbreaks of sarcoids, his main problems have been with his eyes. Unfortunately he's had a few attacks of iritis and also choroiditis.

He also has cataracts in both eyes that have probably been caused by the massive doses of steroids he had to take to stop the bleeding in his eye.

The main thing is, as it's an autoimmune disorder, it can increase the risk for others. Also, as the tendancy for autoimmune disorders can be inherited, it will increase the risk for dcs.

Unfortunately for dd in our immediate family we have neutropaenia, underactive thyroids galore, pernicious anaemia etc

On a day to day basis he doesn't have any problems and continued working. He only found that if he had a cold it tended to settle more on his chest than it had done before.

My husband had sarcoidosis. Got lumps on chest, swollen legs and a rash- red and all over chest and legs. Also sweating non stop. Gp sent to hospital- 7 days in with no diagnosis. Sent home and 3 of my friends- 2 gps and a psychiatrist basically stripped the poor man- poked the lumps and bumps and suggested it was sarcoidosis. Sent him to a new consultant who confirmed it. Was then on steroids for months. Hecwas very active- marathon runner etc. He ruined 2 chairs sweating on them before it was diagnosed- sweat was pouring from him.

Had no other symptoms and it had been about 8 years. He does have some odd lumps and bumps from sportinginjuries which seem hard to heal. Most difficult thing was that he couldn't get life insurance when we moved house. No one would insure him for 5 years which as we had a 500k mortgage was a bit scary.

Gosh tb and Simba - it sounds like your dh's have had it badly.

Simba - dh has just taken out life insurance without any problems. Having said that, his diagnosis was just over 5 years ago. We hadn't tried to get any before that.

Littlefish- after 5 years it was fine. Before that it was almost impossible. No standard company would touch him. Finally got a specialist company requiring full medical but sarcoidosis was excluded. Trouble is you have to say if you have ever been declined.

We were told the mortality rate is 1 percent. It's about 10 per cent for those who have it on the lungs. However the research is a bit biased as it was done in the USA where it is an illness of the homeless who may have other complications.

We were also told it is common in those of
Scandinavian heritage and Afro Caribbean.

It always makes us laugh because whenever they can't find a diagnosis on HOUSE they suggest sarcoidosis.

I've seen it mentioned a couple of times on HOUSE, too!