sarcoidosis

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

CathyMoran

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.

galah

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 ;-)

LizT

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.

fasty

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.

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.

alexjk

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?!

Jaffusmaximus

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 ) 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!

Judes

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

Ciarachino

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!!!!!!!!!!!!

kangaroo

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

Helium

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.

alexjk

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.

The_Conductor

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?

youcancallmeal

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/

alexjk

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.

CathyMoran

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.

CathyMoran

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.

alexjk

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.

CathyMoran

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

youcancallmeal

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?

LizT

youcancallme>al wrote: »

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!

alexjk

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.

Helium

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 'un

alexjk

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?

Helium

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.

princess-lala

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

Suzybie

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!

Ciarachino

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!

sam34

^^ 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.

Ciarachino

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!!!!;)

koppy

was told pretty much the same..not as drastic but similar.

have level 1 sarcoid on the lungs since last november. was told by specialist it takes 12-18 months to burn out..but has high chance of returning so will be on 6 monthly check ups for 4-5 years and yearly after that. was told that if its takes longer or if keeps comming back could scar the lung which would not be able to fix.

another poster said the felt you sometimes feel as though you're not taken seriously at all by doctors..some docotors tell you to forget about it others make a deal about it..hard to know what to think..i suppose i lucky in that i only have level 1 and dont seem to need medication.

LizT

Hi guys, isarc.ie is back up and running. There is a forum there for discussion and questions and there is lots of information available on the site. If you get a chance you should check it out.

handj

Judes wrote: »

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

Hi All. I've just been diagnosed with sarcoidosis. I was sent to A&E by my GP with severe intentinal pain. A CT scan of my tummy showed some lumps in my lower chest. A follow upo scan and a broncoscop/biopsy and I've been diagnosed. At first I was fine as I really thought I had the big c. Now I'm starting to get very tired and breathless. I'm not getting any treatment and as I'm already overweight I really don't want to go on steroids. Any advise? Judes - your post has some excellent info.

The_Conductor

handj wrote: »

Hi All. I've just been diagnosed with sarcoidosis. I was sent to A&E by my GP with severe intentinal pain. A CT scan of my tummy showed some lumps in my lower chest. A follow upo scan and a broncoscop/biopsy and I've been diagnosed. At first I was fine as I really thought I had the big c. Now I'm starting to get very tired and breathless. I'm not getting any treatment and as I'm already overweight I really don't want to go on steroids. Any advise? Judes - your post has some excellent info.

There are non-steroidal treatment regimes- such as immunosuppresants etc- you should organise a discussion with a consultant and discuss what options might be applicable to you.

aluna

hi all

i was diagnosed with lofgren's syndrome a few days ago. wrote another post in this section. its a benign, self-limiting form of sarcoidosis.

i presented with erythema nodosum and after a ct scan was found to have inflamed nodules on my lung. doctor said it was only beginning and needs no treatment. if my symptoms worsen i must start steroids.

as you all know there is no cure. i have been housebound for a few weeks due to massive swelling in my ankles and joint pains (accute polyarthritis).

i have to go back for a check-up in six weeks. is there anything in the world i can do to maximise my chances of getting better? i will rest. i will look into my diet, especially after reading Judes post. doc took 24 urine sample for investigation, presumably for calcium levels, but never gave me the results.

finally, do any posters live in cork and can they recommend a gp who knows of and has an interest in sarc?

thanks guys

LizT

aluna wrote: »

hi all

i was diagnosed with lofgren's syndrome a few days ago. wrote another post in this section. its a benign, self-limiting form of sarcoidosis.

i presented with erythema nodosum and after a ct scan was found to have inflamed nodules on my lung. doctor said it was only beginning and needs no treatment. if my symptoms worsen i must start steroids.

as you all know there is no cure. i have been housebound for a few weeks due to massive swelling in my ankles and joint pains (accute polyarthritis).

i have to go back for a check-up in six weeks. is there anything in the world i can do to maximise my chances of getting better? i will rest. i will look into my diet, especially after reading Judes post. doc took 24 urine sample for investigation, presumably for calcium levels, but never gave me the results.

finally, do any posters live in cork and can they recommend a gp who knows of and has an interest in sarc?

thanks guys

Hi. There is a list of consultants specialising in sarcoidosis here, including one in Cork.
http://www.isarc.ie/useful-information/consultants-specialising-in-sarcoidosis

aluna

thank you very much lizt!

LizT

aluna wrote: »

thank you very much lizt!

You're welcome, hope the website is of some use to you!

Judes

Hi Handji,

Just saw your post - my own advice would be go on the steroids, as it helps fight it - I mean your body is at a low - so steroids will help heal.

Re. worried about your weight - as I said I thought I'd blow up like a balloon and I didn't - but if you cut back on calcium laden foods i.e. dairy products etc. then that will help you lose weight.

I can't believe how many people have been on this thread with sarcoidosis -when I was diagnosed in 1996 I was told it was "very unusual" and also that it was prevalent in coloured women, (and believe me you couldn't find a paler person than me).

But I also sympathise with everyone who has/is suffering - it is true what some posters say - you look fine to everyone else, but suffering inside. Try and be positive, get your rest and when you're feeling better start some gentle exercise. You won't be on steroids for ever more just a year or so. And I do get my bloods done 2 - 3 times a year as I also have a thyroid disorder so my ACE levels are always monitored by my doctor.

The Specialist I saw in London was a lovely, sympathetic man as is my doctor, well, a supportive and sympatheic woman - but it really helps to have a good doctor you can really speak to.

Stay positive and try not to dwell on it. I always get a little worried whenever any form of rash breaks out thinking it is erythema nodosum and wondering is it a reoccurance of the sarcoidosis but generally I just forget I ever had it and get on with things.

Good luck!

aluna

nice, positive message judes

i have been lurking on a few american websites and really, i wish i hadn't, because people seem to be suffering badly and an awful reputation surrounds the disease's name.

it is such an encouraging thought to imagine you, happy and mostly healthy, years beyond your diagnosis.

i hear what you're saying about being a special case back in '96; i can imagine from now on, more and more people will be correctly diagnosed with this illness. there was even a letter in today's examiner about it!

good luck everyone. we can do this!

CathyMoran

I still know nothing about it even though both my husband and I have it...it was found on a ct (am an oesophageal cancer survivor), since I was diagnosed with it I have gone on to have a child. Stop reading scary sites!

BadlyKneaded

aluna wrote: »

i have been housebound for a few weeks due to massive swelling in my ankles and joint pains (accute polyarthritis).

I am a sarc "suspect". I'm a 29 yr old girl and I've suffered for 4 years on and off with symptoms relevant to sarcoid but I have never had a definitive diagnosis. However am being monitored by the respiratory dept in James's hospital.

My one prevailing symptom has been painful erythema nodosum and massive swelling of my left ankle accompanied by acute joint pain. My dad bought me a circulation booster the other day, I've used it one and a half times (I'm using it right now under the desk in work) and I genuinely cannot believe the relief from joint pain I've gotten in just one 30 minute use! I haven't had full range of motion in my left ankle in about 3 months and today I woke up and it goes every way except forward (EN makes the skin so tight on my shin that I can't point my toes)

If anyone's granny has one of these knocking around I'd certainly recommend having a bang on it!

galah

galah wrote: »

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 ;-)

quoting myself here to warn other people NOT to make the same mistake...if you have sarcoid, and they put you on methatraxate, please be aware that you SHOULD NOT conceive children for as long as you are on it, and up to 6 months after, since it may cause birth defects.

That bloody doctor who put hubby on it neglected to tell us this (even though we were just maried, and hubby is in his early 30ies, and I only found out cause I googled the medication, and then asked MY GP about it), so we have to wait to have a family. This was causing a lot of anger and frustration, so be warned. :mad:

aluna

Hi BadlyKneaded,

I still haven't worked out how to quote other posts!

Besides being absolutely exhausted beyond belief, the erythema nodosum has been my real problem with sarc. breathlessness is minimal, only few manageable pains in nodes etc, but my legs and ankles are a disaster!

have you had the symptoms in your legs for four years? how do you manage? i've had mine just since August and have found it really difficult to manage getting around much. was learning to drive but that is stopped as i can't flex my foot.

i will definitely have a google of those circulation boosters. i'm also in my twenties so didn't think i'd need one for many years yet but sure how bad.

BadlyKneaded

aluna wrote: »

Hi BadlyKneaded,

I still haven't worked out how to quote other posts!

Besides being absolutely exhausted beyond belief, the erythema nodosum has been my real problem with sarc. breathlessness is minimal, only few manageable pains in nodes etc, but my legs and ankles are a disaster!

have you had the symptoms in your legs for four years? how do you manage? i've had mine just since August and have found it really difficult to manage getting around much. was learning to drive but that is stopped as i can't flex my foot.

i will definitely have a google of those circulation boosters. i'm also in my twenties so didn't think i'd need one for many years yet but sure how bad.

Jaysus! Sorry I'm only seeing your reply now! Bad Boardsie!

I have had my symptoms on and off for four years yeah.The swelling being the main hanger on. Its a complete pain in the hoop I must say but its odd, once you get over the initial panic of "Sweet baby Jeebus how is my foot this big!!!" you tend to just learn to live with it. Something many a doctor told me to do during my early days. F*ckers.

Lately my EN has gone away and I'm now left with extreme itchiness where it used to be. I don't know if its just damaged skin from where the patches were or something unrelated but its so extreme that I've taken to my legs with hairbrushes and drawn blood trying to satisfy the itch.

Since the snow, my pain, which was only ever in my ankle joint, seems to have now moved into the front of my foot just below where my toes start. Its puffed out over every shoe I own (except a pair of size 11 mens slippers) and its stopped me from driving too. I dunno if the cold has exacerbated it but it seems to act up in heat too.

I like to treat it like a pregnant lady treats her bump. I keep it well moisturised so as to avoid stretch marks and I sing to it. Well, no I just moisturise it. I find Nurofen Plus a relief with both the pain and the swelling, but now that I literally have to hoist my massive foot (Frank I call him) onto pharmacy counters to prove i'm not a codeine junkie its almost more tolerable to sit in pain.

How have you been coping this last while? Any sign of retreat in symptoms??

coolerhash

aluna wrote: »

hi all

i was diagnosed with lofgren's syndrome a few days ago. wrote another post in this section. its a benign, self-limiting form of sarcoidosis.

i presented with erythema nodosum and after a ct scan was found to have inflamed nodules on my lung. doctor said it was only beginning and needs no treatment. if my symptoms worsen i must start steroids.

as you all know there is no cure. i have been housebound for a few weeks due to massive swelling in my ankles and joint pains (accute polyarthritis).

i have to go back for a check-up in six weeks. is there anything in the world i can do to maximise my chances of getting better? i will rest. i will look into my diet, especially after reading Judes post. doc took 24 urine sample for investigation, presumably for calcium levels, but never gave me the results.

finally, do any posters live in cork and can they recommend a gp who knows of and has an interest in sarc?

thanks guys

Hi
Just after seeing this thread today, I'm also from Cork and was diagnosed with sarcoidosis in the lungs at stage 4 since 2009 was put on steroids and now on a steroid and methotrexate combination at the moment.The pulmonary doctor i have is Dr Barry Plant in the CUH (find him to be very good and nice to talk to).
I hope your getting on all right, i know i have my good days but mostly bad days, have been out of work since.
Its a strange and weird disease that affects every part of your body

RxQueen

Sorry for bumping this again, but anyone ever put on malaria tablets fo this ???

The_Conductor

emo!! wrote: »

Sorry for bumping this again, but anyone ever put on malaria tablets fo this ???

What do you mean by 'malaria tablets'? Chloroquinine? In my case- no medication given, as I've other autoimmune conditions, it was reckoned that my treatment of them would also treat the pulmonary sarcoidosis at the same time.

1squidge

Saw this thread and was delighted to see it. I've been diagnosed with Sarcoidosis on the lungs in January. I've also been diagnosed with HHT (Hereditary Haemorrhagic Telelangiectasia) last October. I had multiple PE in both lungs last June and a neck and back injury last February so I've been having a wonderful time lately. It was good to see peoples experience of this disease. I went for a bronchoscopy in January and that is when the Sarcoid was discovered. It was also discovered that I had Pneumonia but because I was feeling miserable all the time I didnt feel any different. My main symptoms at the moment are tiredness,aches and pains, Stomach cramps and slight breathlessness. I have a slight lung infection at the moment. I just seem too pick up any bug or infection that is doing the rounds. I was in a+e last week with severe exhaustion, stomach cramps and dizziness. It doesnt help when I'm constantly bleeding with the HHT and my blood count goes down. Anybody have both Sarcoid and HHT and what are your main symptoms. Also how are you treated/live with the illness. I should also add that I havent seen any report to say that Sarcoid is hereditary but my mother also has Sarcoidosis on the Kidneys with hypercalcaemia. Could be coincidence or the disease is more common than I think. Ger.

alexjk

I don't have HHT but I have bleeding along with sarcoidois. I try to keep to an anti-inflammatory diet which is often easier said than done and that usually keeps the bleeding under control but I have no idea if that would be helpful as a treatment for HHT.