sarcoidosis

Blackee · 04-05-2011 7:26am

[QUOTE=Judes
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 JUDES[/QUOTE]

@Judes - Was the diet specific to your case or would it have been recommended for other sarcoidosis patients I wonder? Do you have any further details/list of foods to steer clear of? I have suspected sarcoidosis and while my diet would be fairly healthy I'm still quite fatigued so was curious to know if there were any other ways to increase my energy a bit,
Thanks in advance
Blackee

Blackee · 07-05-2011 11:26pm

Judes wrote: »

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!

@Judes -
Hello....Was the diet specific to your case or would it have been recommended for other sarcoidosis patients I wonder? Do you have any further details/list of foods to steer clear of? I have suspected sarcoidosis and while my diet would be fairly healthy I'm still quite fatigued so was curious to know if there were any other ways to increase my energy a bit,
Thanks in advance
Blackee

Judes · 12-05-2011 2:38pm

Hi Blackee - sorry, haven't been on this thread in a long time - so only just noticed your messages there.

I'm trying to remember - as it was all diagnosed in 1996 - originally here in Cork, but was treated by Specialist in London. I honestly can't remember if the no-calcium diet was just me or all cases. But then again it was the calcium problem that caused the erythema nodosum.

I was diagnosed with Fibromyalgia at the end of 2009, I was in very bad pain with that and at first thought it was the Sarcoidosis flaring up again. But afer a year of the pain/injections and physiotherapy I sent off for a book by an American sufferer who advised all to go dairy free. So I've been dairy free since last September 2010 - so I'm now 9 months dairy free - and I am feeling so much better and pain free (touch wood). I'm sticking to this because when I was dairy free, when Sarcoidosis was first diagnosed, I felt better - so there is something to be said for it.

It's really worth trying it out for a while - I am not a vegetarian - infact I think I've become more carniverous, I eat eggs - but avoid anything that is from any form of milk/whey/and careful with what type of lactose. I am definitely more energetic, have lost some weight - which is always a plus and life is good.

A really important thing is have a positive attitude - negative things/people in your life are a drain. Make "YOU" time! It is so important for your well being. J

alexjk · 24-05-2011 10:43pm

I now follow a gluten free and dairy free diet and I couldn't endorse it more. I found it much harder to eliminate dairy than I did gluten, as it didn't seem as obviously bad for me and my reactions after eating dairy weren't as dramatic so it took a while to see the benefits. Now though, if I eat dairy, I can feel it.

My joints hurt a lot less, and my skin has improved and I don't necessarily have that 'general feeling of being sick' as often as I used to. I'm going to get bloods, an ECG and an X-ray taken on Thursday. It's been a while since I've gotten them done so it'll be interesting to see what (if anything) has changed.

Judes · 26-05-2011 2:48pm

Hope all went well with your doc's visit today.

I've cut the wheat/gluten down but not out. I'm still eating bagels and occasional sandwiches - but have replaced all my pasta/noodles etc. with rice and corn versions. I'm aiming to go wheat/gluten free but finding it tough. Whereas the dairy - the only thing I'm missing is real Cheese. Infact, I drool at the thought of cheese on toast - but alas it isn't worth the pain. Finally discovered a soya pouring cream a few weeks ago - fantastic - all those creamy dishes I missed cooking - I can cook again.

We all have to stay positive - I also find that if I'm really busy I don't have time to think about "pain" so don't feel it. I was painting my house recently - and over stretching a lot - felt it the next day - but it was a good pain - like I knew - ooops over did it - like you would on the first day back in the gym.

J

cathy01 · 26-05-2011 3:08pm

Thought I put this question up, but cant see it. can anyone recommend a consultant for sarcoidosis, in Dublin,Thanks,Cathy

Blackee · 27-05-2011 12:15am

Hi

Judes & Alexjk - its great to hear you have had success with making changes to your diet. Really motivating as i'm trying to ditch a few foods.
I've seemingly got a mild form of the condition (ie no treatment) and i'm really trying to ensure that it does not get worse or become chronic, and looking at any natural treatments that might help. I am going to begin with food & diet, and try to keep out of the sun (easy here in ireland! ha!) It seems to be quite prevalent in scandanavia and i came across a Norweigan girl who has posted details of her anti-inflammatory diet http://www.inspire.com/Delirium/journal/diet-for-sarcoidosis/ so will start with going dairy/gluten free and see how things go for me.

Had never heard of this before the diagnosis - its really such a mystery isnt it? Find it kindof fascinating in a way. Fascinating/Frustrating trying to explain to people what exactly it is when i barely know myself.:(:rolleyes:

Judes, i completey agree with you about maintaining a postive attitude, making time for yourself, and trying to keep aware of (or should that be away from??!) people and situations that drain all your energy away.

all the best.

The_Conductor · 27-05-2011 6:28am

It is a mystery for many people- for others though its often a co-disease along with other autoimmune diseases, such as Type 1 Diabetes or Crohns Disease- and studies have shown it (similar to other autoimmune diseases) to have a tendancy to run in families (though its not a direct correlation).

Some people do find dietary changes helpful- providing they are in conjunction with a conventional medical approach, and follow up is provided.

Sarcoidosis- does go through flareups at various stages (and stress and lifestyle are big contributors towards when these flareups might occur)- but also can have prolonged periods of remission- and commonly 'burns itself out' in later life (however given the nature of the disease often there may be irreparable damage at that stage).

Its not pleasant, and is commonly misdiagnosed (I was diagnosed primarily as a result of a TB test that came back negative- prior to being put on immunosuppressants for Crohn's Disease (Imuran).

fasty · 03-06-2011 11:27am

I'm going through a flareup at the moment after spending a good few years on a very low dose of steroids. I knew it was coming because running and cycling, which I do a lot of, were both that little bit harder.

Interesting point about stress and lifestyle and flareups. I've been having a pretty crap time lately with work and other stuff and I wonder if it's a contributor?

I'm glad I'm fitter now then when I was diagnosed in 2005. The whole thing depressed the hell out of me and I put on three stone. I'm sure the steroids didn't help there.

So now I'm on a highish dose again until I see my consultant in July. Side effects are easier to deal with this time, and being more active, I'm not gaining weight but I'm a bit more moody, thirst as hell and sleeping even less than usual.

sethasaurus · 08-07-2011 2:32am

Everybody that has been diagnosed with chronic disease will do well to read this site:
www.mpkb.org

The Marshall Protocol is based on research and facts, despite what many doctors will tell you (They actually don't know what to tell you, in case you hadn't noticed).

The failure of mainstream medicine is that is out of date and things like prednisone is prescribed, even though it has never been shown to be an effective treatment aginst sarc or any other chronic disease.

The old wive's tale that something like '40% of patients get better without any treatment' is also a lie. There are no studies to prove this, apart from observation of the patient for up to a year afterwards. Improperly treated Sarcoid does come back, and it comes back with a vengeance years later.

The new research and evidence that has come to light in the last few years has yet to filter down to your doctor or "specialist", but it is actually a huge eye-opener on all kinds of chronic disease. It is no coincidence that people with chronic diseases hardly ever have just one problem.

Anybody can read this information and and make up their own mind and take control of their healing. Nobody involved with the Marshall Protocol is trying to sell anything either.

There are doctors here in Ireland that will help you if you want to break free and make a proper recovery. It is not a quick process - chronic disease builds up over years, so it does take years to cure it, but hundreds of people are already walking evidence that the Marshall Protocol works.

If you have ever put those steroid pills in your mouth, you know - they are not the solution.

sam34 · 08-07-2011 6:31am

sethasaurus , let's have less of the medicine is a lie and the tablets don't work kinda stuff please.

sethasaurus · 08-07-2011 3:36pm

I'm not saying 'the medicine' is a lie. 'The medicine' is just behind in it's knowledge.

'The tablets' (steroids) do work, and they work very well, but if you have a chronic disease, the last thing you want to be doing is supressing your immune system.

Anyway, I'm not here to argue semantics. I'm just letting a few people know of an alternate solution.

alexjk · 16-07-2011 9:31am

I had a cataract removal yesterday and I am back on the pred for a week to try and avoid an inflammation attack in the eye. I remember why I chose to taper down two years ago, it really does make you feel awful, so I'm only going to do it for the week and then I'm tapering down. On the plus side, I'm delighted to finally be rid of the cataract!

LegacyUser · 08-11-2011 5:43pm

HI All,

I know this thread is an old one, but just wanted to see if there are any people out there who have recently been diagnosed and how they are progressing?

This thread has been very helpful to me, I was diagnosed with Sarcoid about 3 weeks ago and have been having a pretty hard time with it before then. I have been on Steroids for the past 2 months as my joints were extremely swollen and painful and I was suffering with large purple Erthyma Nodosum on my legs. I have had no energy whatsoever for the past year and was starting to feel a little depressed. It is great to finally put a name on what was causing the problems, because as some of you have mentioned Doctors can tend to dismiss your symptoms due to their vagueness. I am scheduled for a lung biopsy in Jan (as need to wait for the steroids to clear out of my system) as the Pulmonary Specialist I am attending has found some granulomas in my right lung as well as the enlarged lymph nodes. My liver and spleen are also inflamed....how wonderful!

On the brightside, now that I know what is going on with my body I am feeling a lot more positive and hearing some of your experiences has helped so much. I am off the steroids now (thank god - awful things!) and my symptoms have certainly improved, I am just hoping they stay at bay.

Does anyone experience their symptoms getting worse during cold weather? - for example the snow last year gave me a fantastic red, hot and swollen knee...it looked great in my Christmas dress! ;-)

To anyone who has recently been diagnosed, I hope you are starting to feel better and at least now you know what is going on...we are all on the road to recovery!

I would love to hear how people are feeling dealing with Sarcoid,

Cheers

Jaffusmaximus · 11-11-2011 1:15pm

Hi There

I am very sorry to hear about your condition, I have posted previously and I can give u an idea how it may progress. I was hit very hard to begin with having extreme joint pain, faitgue, fever, lumps on neck, swollen ankles etc. Lung biopsy was positive so were bloods and x ray. That was 3 years ago and now I have never felt better.

It seems the harder you are hit that better the prognosis. A slow and lingering course of the disease seems to mean a lifelong battle with sarcoidosis.

Although I feel fine I am aware I may again get another onset of symptoms but all bodes well.

Maybe try to see if u have been inflicted rapidly or was it a slow onset of sarcoid to give u an indication of how it may progress.

Stay positive as the doctor told me what he saw on my lungs could have meant a lot more serious life threatening illnesses.

Best of Luck

LegacyUser · 21-11-2011 11:10pm

Thank you so much for your reply - and thank you for sharing your story. It gives me great hope to know that you are feeling so well now even though you have been through the mill. It is incredible how severe the symptoms are and how fast they come on. Are you taking any medication now? I think I would be very reluctant to go back on steroids again, only in the worst case scenario.

Do you regularly go back to see a Respiratory specialist or have you been discharged now?

I am off the steroids about 2 weeks now and I notice that my joints are slowly starting to swell again along with the pains and the fatigue is coming back...I really hope its just temporary and I am not going to become symptomatic again. I guess I will just have to wait and see.

May I ask was your work life affected at all? Did you continue to work?

Thanks again for your time - I appreciate it :-)

SSSM · 23-11-2011 4:44pm

HI Jaffusmaximus,

I finally registered for a boards.ie account!

Many thanks for your encouraging reply and I am delighted you are feeling better than ever now. You seem to have had a very intense introduction to Sarcoid with severe symptoms, it must have been pretty scary for you. I have had a slower introduction - 3 separate episodes affecting different areas of my body over the past 2 years. Would you believe when I initally went to the Doctor complaining of joint pain, lethargia, swelling etc.he diagnosed me with having Gout - I am a 28 year old female and my BMI is 24! So as the specialist in St. James' said, Gout is as common as hens teeth for a girl my age! I had my bloods done and was told all the results were normal. I was given Difene on a number of occassions and sent packing. I kept having the problems so I called the GPs surgery and asked for a copy of my results to be sent to me and when I received them I noticed they were not normal whatsoever. I doubt he even looked at them! All my inflamatory markers were raised and he didn't even notice. It wasnt until this year that a brilliant female GP in Templebar saw me when my symptoms were getting worse and immediately thought of an autoimmune disease so ran a number of tests and on receipt of the results referred me to a specialist.

Such a tricky disease to diagnose, plus such a tricky disease to deal with but I am delighted to hear you are improving and others have had positive experiences.

I am due back in Feb for my biopsy and I guess I will take it from there, I hope you continue to feel well and symptom free.

Take care!

Rmmb · 01-12-2011 7:56pm

Hi all,
Glad i found this thread, great to read about other cases! I am a 30 year old female, always healthy non smoker, used to own a gym so super healthy up until 18 months ago when i got ereythema nodusm on my legs, was admitted to hospital and was diagnosed with pneumonia and put on steroids, after a week after coming off the steroids it returned, i was admitted again and sarcoidosis was diagnosed in my lungs. i was put on steroids prednislone again for 4 months. After coming off them my symptoms returned again and i was admitted again to hospital and diagnosed with crohns! The long and short of it is that i have been in hospital for 8 weeks in total in the last year, Dublin the Mater, Galway as well, and each time i am pumped with ivf steroids and my symptoms get worse, flu symptoms, sarcoid in my eye, joint inflammation, stomach aches and pain, vomiting, coughing and chest pain! I get bloods done weekly which are never 'normal', i am always aneamic and am on folic acid as well as imuran and 10mg of pred at the min, i had to give up work last Nov and now if my blood results are 'off' again tomorrow i am supposed to be admitted again to UCHG for another week!! I have seen umpteen specialists and gotten nowhere, there is a mention of anti TNF treatment but i haven't started it yet. I am sick of steroids and the side affects!!! I have gotten no advice on diet etc. but i eat healthy anyhow although a gastro guy told me to switch from wholegrains to white bread, pasta etc. I have started bio energy and had my 3rd session today, i have 2 more Mon & Tues next week and i refuse to go into hospital until after that, anything at this stage is worth trying as i have lost out on 18 months of my life so far!!!

SSSM · 02-12-2011 10:49am

HI Rmmb,

I am so sorry to hear you have been through the mill the past 18 months. I know how tough going it can be and I understand how frustrating it can be when you are finding no clear answers anywhere.
I have had a similar story to yours - it has been ongoing for the past 2 years and I was only diagnosed 1 month ago. I too and 28 year old female, non smoker, relatively healthy and happy up until about 24 months ago. It is amazing how quickly you can deteriorate isn't it? I literally woke up one morning with a swollen and painful knee that was getting worse and worse. Then spread to the other knee, ankles ,wrists, fingers etc. My joints became so swollen that I could'nt wear shoes (I was a right sight! ha!) and the erythema nodusum appeared all over my shins. My internal organs are mostly inflammed (liver, spleen) and I have 2 nodules in my right lung and inflamed lymph nodes. I think the worst aspect of my Sarcoidosis is the lethargia, constantly wrecked, down etc which is very hard to deal with and extremely difficult to try to live a normal life. I know it is very hard to keep positive when you are feeling so crappy, but you will start to get better. If you read through the posts above you willl see that the majority of people do improve after about 2 - 4 years and their lives return to normal as the Sarcoid goes into remission.

Also from what people are saying, the harder and quicker the onset of Sarcoid the more of a chance that it will leave just as quickly. It is so tough going right now, I totally understand as I am there right with you but we can beat this and we will.

From a diet perspective I haven't really been advised anything, but I am just watching what I eat and I have started doing Aqua Aerobics which has helped dramatically with my joints. I would highly recommend it. I have also cut alcohol completely out of my diet and have come completely off the steroids. You are right - the steroids do awful things to you, I only take them now if I get a very bad flare up.

I hope today goes well for you and you don't have to go back to hospital - I will be thinking of you, please let me know how you get on.

SSSM

Rmmb · 02-12-2011 4:38pm

Hi SSSM,
Thanks for your kind reply, we sound very similar, i too woke up one morning with swollen legs and thats where it all started. Forgot to mention that i now have erythema nodusm on my forearm and legs at the min, hence the trip to hospital!! Anyway i'm definitely not going in because there is no point at the weekend as nothing will be done, my gp is due to ring me in awhile and will fob her off until next week, she has been very helpful and she herself is fustrated as she said she just does not know who to refer me to next. Are you on any medication at the min?? Every time i come off the steroids i end up worse than ever, hence the numerous hospital visits. Personally i think doctors are unsure of what treatment is successful in this country. Our stories are very similar, i too have sarcoid on my right lung, the middle section. My liver and spleen have not been mentioned to me...yet!! Are your e yes affected? Mine are very painful at the moment and am on steroid eye drops, the left side of my body is always worse, apparently it has something to do with your position in the womb, a rheumatologist in the Mater told me that! What part of the country are you in? I am in the west. I will def take your advice about the aqua aerobics as i used to love swimming. The bio energy seems to be working so far, had a sore throat last few weeks but woke up this morn and it has gone! My joints are still agony tho!! I agree that the constant exhaustion is the worst part, there are days i feel like an 80 year old and people just don't get it!! Are you working?? Thanks so much for your advice, it's great to finally meet someone on the same page so to speak!

SSSM · 02-12-2011 5:23pm

Hi Rmmb,

It is crazy how similar our stories are alright - same age group, sex, medical histories, timeframes and symptoms! It is great to speak to someone who knows how it feels and who understands what is going on physically as well as emotionally.

I am glad you are not going to hospital this weekend, as you say there is not much they can do there particularly as it is a weekend.

I am not currently on medication - I literally stopped taking the steroids (20mg / day) x 2 months. I was attending a Rheumatologist in St. James' who put me on the Steroids after seeing me 3 times as my symptoms were just getting worse and worse to the point that I could barely drag myself out of bed. I had a CT scan done where he noticed the lumps in my right lung and my lymph nodes were significantly enlarged to referred me to a Respiratory specialist. The Respiratory specialist wishes to carry out a biopsy on my lung but the steroids are still in my system so Ihave to wait for them to clear. Luckily my eyes have not been affected (yet) - they do sometimes feel dry and a little sore but nothing like what you are experiencing. I am trying not to go back on the Steroids as they really didn't agree with me, so I completely understand how you feel being on them. My right hand side appears to be more affected than my left, although the Erythema Nodosum are worse on my right leg.

I am based up in Dublin and am still working. I work in a Medical clinic so the Doctors have been very kind to me and have been very understanding with relation to time off etc. There was a point a few months back where I thought I might have to give up for a while but luckily I am still motoring on. I am just waiting to see what the biopsy and further tests bring at the end of January and take it from there.

I know you are so fed up right now, but bear with it, I promise it will get better.

From my experience over the past year, I really think trying to stretch out the periods that you are off steroids as much as possible as they won't do any good long term, I know they do provide short term relief but a Specialist in St. James' said that they do not improve Sarcoid in the long term at all.

You poor thing, my thoughts are with you and I hope they manage to get your symptoms under control soon for you so you can start rebuilding your life. Yesterday was the first day in 2 years that I felt 90% myself again, I am delighted and you will feel like that too so keep in there all will work out.

Please let me know how you get on next week - I will ensure to give you an update on how I am getting on too - a problem shared is a problem halved as they say

Chat soon

x

Rmmb · 02-12-2011 6:22pm

Hi SSSM,
Thats mad how the specialist in St James said steroids are no good long term. I have been on them for 18 months in total and never off them over a week as my symptoms have returned so severe. A haemotologist in the Mater told me that the yo yo dosing of steroids i have been prescribed are not good for your health at all but here in Galway they don't seem to offer an alternative and if i am not taking them i can't walk...literally! I think the bio energy may be the way to go...so far but i'll keep you updated! I have had the lung biopsy, they send them to the uk for testing to confirm sarcoid, it is not a pleasant experience so make sure you are knocked out for it, i also have had numerous chest x ray's but sarcoid has never showed up on them. My lung function tests are always relatively normal as well. I am on a waiting list to see Anthony O'Regan a respiratory consultant in Galway who has a particular interest in sarcoid. it's great that you could keep working and that your employers are so understanding, although i am sure that there were days that adrenaline alone kept you going! Have a nice wkd and i'll keep you updated early next week, have bio energy Mon at 11am so will see how i feel after that!
Chat soon x

Ciarachino · 04-12-2011 10:52pm

Hi RmmB
You should ask about an inhaler. I was put on one after two years on steroids. Its easier on your system and goes straight to your lungs. Its tough going now but you will get there!!

KHL

Ciarachino

Rmmb · 05-12-2011 12:15am

Hi Ciarachino,
Thank you for your advice, i have seen several respiratory consultants and am on ventonlin and pulmicord, i have had asthma since i was 2 years old but it has not bothered me since i was a teenager, i have a constant dry cough especially at in the middle of the night and when i lie on my right side, sooo annoying more than anything! Have you sarcoidosis?
Thanks again

Ciarachino · 16-12-2011 1:33pm

Hello again Rmmb! Sorry I didnt get back to you sooner! I have sarcoid alright. Was diagnosed nearly 4 years ago now! I take pulmicord myself and it seems to be keeping my lungs clear. Had my dosage lowered on my last visit to hosp so will be interesting to see results after my next one!

KHL

Ciarachino!!

Raytown Rocks · 30-04-2012 5:06pm

Well though I would add my own part here

Was Told this morning I have Sarcoidosis. All quite surprising I must say. Have spent the day google bound and checking sites. Have an appointment with a specialist in Vincents tomorrow, not sure what to expect or how bad it is.
Not something I was expecting to happen to me but will wait to see what the doc says.
Fingers crossed its manageable

Chef

youcancallmeal · 30-04-2012 5:26pm

chef wrote: »

Well though I would add my own part here

Was Told this morning I have Sarcoidosis. All quite surprising I must say. Have spent the day google bound and checking sites. Have an appointment with a specialist in Vincents tomorrow, not sure what to expect or how bad it is.
Not something I was expecting to happen to me but will wait to see what the doc says.
Fingers crossed its manageable

Chef

What symptoms did you have?

Raytown Rocks · 01-05-2012 9:50am

youcancallmeal wrote: »

What symptoms did you have?

Still have them, haven't started treatment yet.
Dry cough for the last couple of months, and then last week began the painful ankle joints, swollen ankles, and lumps on my legs.

Jaffusmaximus · 02-05-2012 8:51am

chef wrote: »

youcancallmeal wrote: »

What symptoms did you have?

Still have them, haven't started treatment yet.
Dry cough for the last couple of months, and then last week began the painful ankle joints, swollen ankles, and lumps on my legs.

I remember my consultant saying that what the alternative diagnosis to sarcoidosis would have been so serious that I should be glad I ended up with sarcoidosis. I view it as a nuisance more so then a disease that controls my life. Also if it hits hard and fast the outlook is good. If it progresses long and slow then prepare to adapt your life style. Best of luck.

swanangel · 02-05-2012 12:08pm

Been under investigation for sarcoid for a few months now when a biopsy of red bumps on my face and body showed granulomatous infiltrate.
Also seems to be effecting my eyes, the tear ducts just above my eyelid's is always swollen like I have little peas stuck under there and they were itchy and dry and sometimes stingy but not getting that now just the swelling.

My bloods and cat scan of chest came back clear, good pulmonary tests too just got that news from respiratory specialist in Vincent's which is good.
So the derm and GP still think it's sarcoid but cutaneous sarcoid which is the skin, they don't seem to think I need to go see an eye doctor but I thought that was odd as I hear sarcoid in the eyes can be bad.

They just want to put me on steroids, I don't want to go on them because my skin might not even get better and the side effects of steroids seem to be terrible so I'm told.
I don't want to gain excessive amounts of weight either, does everyone gain loads of weight on steroids? I don't want to sound shallow I'm a young girl and having things are over my face and gaining loads and loads of weight makes me upset. I'm worried about my eyes more of course and vision.

I have to go back in a few months to Vincent's to get tests repeated, I think they want to monitor me to make sure it doesn't start to effect my internal organs as sarc usually does.
I have the red bumps in various places mostly on face, under arms, on elbows, knees they rash looks different on different parts and is not covered by make-up on my face which makes me feel bad.

I asked my doctor to look into other treatments other then steroids because I have read about other treatments on line.

If anyone would like to share their experience of skin or eye sarcoid and other types and how steroids effected you side effect wise please do, I'm not looking for medical advice as the doctors will do that but it's just they don't have to live with it and I do and if they tell me I have to go on steroids I would like to know how other people felt about the side effects.

Best wishes to everyone I read about on the thread a lot of you are having an exceptionally hard time.

Raytown Rocks · 03-05-2012 10:39am

Currently on neurofen for a week.
Did a PFT yesterday.
Am going in for a ct scan and bronchoscphy ( spelling) in 10 days time.
If by next Tuesday symptoms have not changed on the neurofen then I start a one month dose of steroids.
The Doc told me I have the type of sarcoid he likes to see as its easiest treated.

@ Jaffusmaximus

Its more than a nuisence. I currently walk like a very old man
4 weeks ago I was jogging and playing soccer, this week I cant walk properly.
Also I have a persistent cough, and swollen lymph nodes on my lungs.
Like you I hope its hard and fast, if not time will tell I suppose

@ swanangel
Not sure on the steroids as to weight gain ( I hope not)
I dont hvae it inmy eyes ( that I am aware of).
I hope it all works out for you

zero19 · 06-05-2012 8:06pm

@swanangel I'm on steroids for 3 months now, I've gained a small bit of weight but not too much. Initially I felt I had much more energy on them but now as my dosage has lowered I'm not feeling quite as good as I did at first, but still feel better than when I wasn't taking them.

Raytown Rocks · 09-05-2012 11:31am

OK an update for me if anyone cares

After 1 week on Neurofen symptoms are the same if not a tad worse.
Ankles still huge abd very painful in the mornings.
Found an extra bump or two and the rash seems a bit worse.

Day 1 of tthe steroids began this morning. 20mg of prednisolone (sp)
20 mg for 10 days then
10 mg for 10 days then
5 mg for 10 days

so will see how I go.
Have a ct scan and scope next Monday too.

Best of luck to all currently going through treatment, thers light at the end of the tunnell I hope.

swanangel · 10-05-2012 3:44pm

Hi Chef,

I care!

Did you have an x-ray before this and was it found in your lungs?
What is your resp specialist like (don't know if we are allowed to name them) my guy was a Prof in the private hosp?

They wouldn't start me on steroids before they had all my cat scans and all done in case they mask the symptoms and I don't seem to have it inside so far (fingers crossed).

What is your rash like, did anyone mention Erythema Nodosum to you? Is the scope where they go down through your nose or I am way off and is your CT a chest CT or what parts of your body did they say?

Best of luck, I hope the steroids make a big improvement for you!

Raytown Rocks · 10-05-2012 5:39pm

swanangel wrote: »

Hi Chef,

I care!

Did you have an x-ray before this and was it found in your lungs?
What is your resp specialist like (don't know if we are allowed to name them) my guy was a Prof in the private hosp?

They wouldn't start me on steroids before they had all my cat scans and all done in case they mask the symptoms and I don't seem to have it inside so far (fingers crossed).

What is your rash like, did anyone mention Erythema Nodosum to you? Is the scope where they go down through your nose or I am way off and is your CT a chest CT or what parts of your body did they say?

Best of luck, I hope the steroids make a big improvement for you!

Hi Swanangel
Had an x-ray 2 weeks ago
My lungs are defo affected, I have swollen lymph nodes ( as per the xray )
I am also seeing Professor gallagher in Vincents.
Doing the CT scan and Bronch test on Monday next. Bronch is indeed through the nose and into the lung. And yep CT is a chest CT.
The rash is not too bad, mainly on my feet and ankles.
Erythema Nodosum I am aware of. I have quite a few big bumps around my ankles and legs.
I have started my steroids as of yesterday.
I went 1 week on neurofen but it did no good.
Had my second set of tabs this morning. Already can see/feel a huge improvement in my ankles. As per previous post,yesterday morning I couldnt walk for 10 mins after I woke, this morning after 1 set of tabs,my ankles were far far better.

So roll on next week to complete tests and then results from the prof on 24th.

Hope your doing well swan angel, keep me posted.

SSSM · 13-05-2012 10:26am

Hi Rmmb

Just wanted to check in and see how you are feeling? I hope you are on the mend and starting to feel better and better each day.

All is ok with me - I am due to go back into St. James' tomorrow for my 3monthly check up (CT scan, Chest xray, lung function tests and meeting with consultant) but am feeling well. Still have weeks where I get swollen and very tired but I am ok.

I Hope you are feeling ok,

Chat soon

swanangel · 14-05-2012 11:29am

chef wrote: »

Hi Swanangel
Had an x-ray 2 weeks ago
My lungs are defo affected, I have swollen lymph nodes ( as per the xray )
I am also seeing Professor gallagher in Vincents.
Doing the CT scan and Bronch test on Monday next. Bronch is indeed through the nose and into the lung. And yep CT is a chest CT.
The rash is not too bad, mainly on my feet and ankles.
Erythema Nodosum I am aware of. I have quite a few big bumps around my ankles and legs.
I have started my steroids as of yesterday.
I went 1 week on neurofen but it did no good.
Had my second set of tabs this morning. Already can see/feel a huge improvement in my ankles. As per previous post,yesterday morning I couldnt walk for 10 mins after I woke, this morning after 1 set of tabs,my ankles were far far better.

So roll on next week to complete tests and then results from the prof on 24th.

Hope your doing well swan angel, keep me posted.

Hi chef,

Good luck today, well I suppose you have to wait two weeks to find out the results but you know what I mean. Hope the scope is not too uncomfortable.

I am waiting still on Prof G to dictate a letter of my results for his secretary, my docs won't treat till they get it, wish he would hurry up!
Had some aches the last couple of weeks from my elbow down the side of my arm, hope it is not the joint pains people speak of.

So happy the steroids are having a positive impact for you, let me know how the last few days on them have gone and how today goes.

Take care!

Raytown Rocks · 15-05-2012 11:16am

swanangel wrote: »

Hi chef,

Good luck today, well I suppose you have to wait two weeks to find out the results but you know what I mean. Hope the scope is not too uncomfortable.

I am waiting still on Prof G to dictate a letter of my results for his secretary, my docs won't treat till they get it, wish he would hurry up!
Had some aches the last couple of weeks from my elbow down the side of my arm, hope it is not the joint pains people speak of.

So happy the steroids are having a positive impact for you, let me know how the last few days on them have gone and how today goes.

Take care!

HI Again

Thanks for the comments.

Well finished the tests yesterday. Had the Bronch yesterday morning. Can't remember a thing about it. They brought me in and sedated me and then I woke up, was all very painless. Had the CT in the afternoon.
Back next week for results.
So far the steroids are working, still have a few bumps and lumps but they seem to be getting smaller. The cough is hanging around but still early days yet.
Back to see the prof next week and see where I go from there.

Chef

swanangel · 24-05-2012 10:18am

Hi chef,

Any updates with results? How have you been doing?

Raytown Rocks · 24-05-2012 4:04pm

swanangel wrote: »

Hi chef,

Any updates with results? How have you been doing?

Hi Swan Angel

Thaks for the comments.

Yeah seen the prof this morning and had Sarc confirmed.
He had the results of biopsy and CT which confirmed above. He was happy with the results of my PFT.
Basically I have the most common version and the one usually easily treated.
My hayfever is going bonkers so got a prescrition for a few tings for that.

Have to go back in 3 months for a new set of tests. Have to keep away from Calcium and Vitamin D ( no sunbathing....Arrrrgggggh)

Overall he was happy, with where I am. The steroids seem to be working, all joint pain gone, lumps almost gone, cough far better but hayfever not helping.

Just have to percevere for the next year or so until its completely under control ( fingers corssed).
Oh have to go for an eye test too, he recommended.

Hope your keeping well, keep me posted on your plights

chef

Ciarachino · 29-05-2012 12:55pm

Hi everyone!

Just wondering how you sarcies are getting on with the sunshine we have been having over the last few days??

Raytown Rocks · 29-05-2012 1:03pm

Ciarachino wrote: »

Hi everyone!

Just wondering how you sarcies are getting on with the sunshine we have been having over the last few days??

Hi there

Good question. I was infomed last week to stay out of it.
Spent the weekend sitting in the shade a lot, was a pain in the Bum as I am a bit of a sun worshipper.
Off on an extened holiday soon and not sure how I will cope not being in the sun. WIll be very warm abd sunny there boo hoo.

Can anyone tell me what affects it actually has on us. I will go google now but be nice to hear form real people.
In answer to the question I was ok over the weekend, Felt a bit under the weather yesterday evening though, not usre if its related.

Thanks

swanangel · 31-05-2012 10:37am

Hi Chef,

Sorry I replied to your last post few days ago but when I look now it's not there!

Hopefully all goes well for you in the next year and it goes into remission, what kind of dose steroids do they want you to stay on?

I was with the derm doc on Monday, couldn't wait any longer for the Prof to send out my test results so I just went in and told her I needed to get the ball rolling, it has been 21 business days and he still has not sent my letter of results to my GP or Derm doc. I'm not impressed by him at all besides this both times I saw him I'm in the middle of asking questions he decides to stand up and walk to the door as if to say 'consultation is over get out' while I'm there trying to find out what sarcoidosis means for me. I am meant to go back and see him in Oct for all the tests again, cat scan, PFT etc but I may ask my GP if I can be a public patient, it's not like paying private got me any special treatment bar a quicker appointment.

Anyway, rant over ha!

Derm doc put me tablets (Tetracyclines) & two creams (one of the creams cost around 100 euro, no new handbags for me ha!) if they don't work then I must go on anti-malarial drugs and if they don't work then steroids if she can't try something else. I have read about Tetracyclines & anti-malarial drugs being used for sarcoid, they are always trying to find alternatives for long term steroid use it seems.

What is funny is the derm doc is the only one to advise me to get my eyes checked when I told her I was having eye symptoms (not now but Jan, Feb, March & April.) You don't even have eye symptoms and they recommend it, how does that work? Hope your eyes are ok, I'd say you will be fine it's just a precaution. Mine don't hurt anymore, just a little pocket of swelling left. She said I have to be carful of uveitis.

Also regarding the sun, I don't know how it works for each person I think it depends on the type of sarcoid you have. I have read of people being very tired (I'm always very tired on hols but I think it's cause I'm Irish and we can't take the heat).
I am not a sun worshipper I worry about skin cancer and stuff like that but I was out and about in it at the weekend and I didn't feel any different, one of the creams I will be using does not allow me out in the sun I have to put it on at night as it has an increased risk of skin cancer. To be honest I doubt these creams will work for my sarcoid face and body and the tablets take at least two months to get into your system so no quick fixes here if they do end up helping.

I read people saying that they discovered they had sarcoid after a sun holiday as it 'aggravated' their symptoms, it's such a weird disease you could drive yourself mad reading about it.
You should try the 'Inspire' website, mostly American people but a lot of sarcoidosis forums on there and you will find lots who have your type.

How does the sun effect you Ciarachino?

Ciarachino · 31-05-2012 11:29am

Hi Swanangel

I hope you are well at the moment! This last weekend was the worst I have felt after being in the sun!! It completely drained me - I was walking around like a Zombie!! I had stiffness in my ankles and all I wanted to do was sleep - not easy with two small kids who just want to be outside....Glad To See The Rain;)!! You said about your consultant looking like he wanted to kick you out of his office, I read a piece written by a doc explaining how doctors who dont know enough about whats going on tend to do that! I am a public patient attending the resp dept(aswell as Heamotology,Urology and Ophthalmology) in Blanchardstown and have to say that apart from delays in test results they are very good over there!! I also visit on different days sometimes so that I see a different consultant rather than the same one all the time to get a different look at things!

Ciarachino
KHL

Raytown Rocks · 31-05-2012 4:55pm

HI SwanAngel

Jesus you seem to have it worse than me, I feel for ya.
I had an eye test last week. Its free if your a PRSI worker from most opticians. Was told my eyes were fine no sign of anything wrong and I still have 20/20 vision. Not bad for a 40 year old. Basically have to go see him again in 18 months.
In relation to the prof, I was done and dusted very quickly I must say, from initial GP visit to CT and Broch was under 2 weeks ( and would have been quicker but for th BH). Then 1 week more for results.

I am still on prednisilone but am now only on 5mg a day for the next 10 days. I was not prescribed any more steroids. Think its a case of wait and see what happens when I come off them.
I was precribed a few things for my hayfever which seem to be working.

@ Ciarachino

Sorry to hear about the sun being so bad on ya, that sucks.I did read a few things about the Vitamin D adding to calcium build ups which in turn affect the kidneys. Although I read it online and the internet would lead me to believe I should never leave the house again.

Well folks I wish you both the very best with this, and will be on here for regular updates form you both, and to share any new stmptoms or any improvemets.

LizT · 31-05-2012 6:51pm

Hi everyone,

Just to let you know, there is a lot of information about sarcoidosis on isarc.ie with links to specialists etc.

I was at the AGM of ISARC a few months ago and there was a specialist over from America and he gave a very good presentation. It's available here.

There's a lot of medical information in it and it's a bit hard to understand but definitely worth a read if you want to understand a little bit more about sarcoidosis.

swanangel · 01-06-2012 10:34am

Ah no Chef I feel you got a worse deal with the Sarcoidosis and Ciarachino, I call you guys the proper sarcoiders!
I feel that if I was to go around moaning about how my face looks or that my eyes were sore and then in a few years I get hit with bad systematic sarcoidosis like I read about I would be crying for the old one to come back.

I do freak myself out reading on line about people going blind or that skin Sarcoid is a sign of chronic Sarcoid but then I think that Sarcoidosis doesn't seem to be a straight line for anyone, it seems to effect a lot of people so differently. My partner asked the derm if I will have to take medicine forever and she said ''Don't be so pessimistic'' I love how she dodged the question.
It's like when I ask my GP questions about it and he answers ''It's rare'' to them all.

Ciarachino - How long would you wait on test results on average?
My GP originally said go public but then said if I can go private go because I was getting quite nervous about my lungs and stuff, I freaked myself out mentally you see because I have suffered with panic issues in the past.

I feel awful for you that the sun makes you so tired and stiff and you have two babies to look after so no rest for you! It's funny the first thing I asked when the GP said they thought I might have something called Sarcoidosis was ''Can I have babies if I have that?''

Chef I hope you are good as new when you come off the steroids, let us know! Glad your hay fever is getting better too, I used to have that it's so frigging annoying.

Ciarachino · 24-06-2012 11:36pm

Hey folks

How you all doin?? I hope you guys are all well! After my last post I thought I would be a glutton for punishment and head off with the clan on a sun holiday and thanks to my wife covering me in factor 50 and insisting on me wearing the largest hat she could find we had a great time with no issues(touchwood)!

Swanangel you were asking the last day about how long it took for me to get test results? I think I was venting that day as I had been back to the hospital that afternoon for results on tests that they had done a week earlier and they hadnt got them. I had gone to my gp the previous week as I woke one morning with a brand new jawline and he suspected I had mumps!! Told him I had them as a kid and after some head-scratching he decided to send me to see my consultant!! Some more head-scratching later by them they decided on doing a couple of tests to definetly rule out mumps!! 7 days later no results!! Back with them this week so hopefully they will have a plan for me! Mumps never arrived but swelling still there! Cant wait till wednesday!!

lilminx · 29-06-2012 5:59pm

Hey all

Just got off the phone and got the results of biopsy taken 4 weeks ago and you guessed it, I have sarcoidosis. Not sure of the condition as I've ever only heard it mentioned on House.

Bit of a background

When I was 15 I got glandular fever and a few months later, my knees swelled up to the size of footballs and my back locked. Was in a wheelchair for a few weeks until the swelling subsided; after getting them drained and on a load of drugs. I was apparently quite a phenomenon as they couldn't figure out what it was that caused it... mentioned all the usual suspects... it's never lupus..

Carry on to when i was 19 and I was given the diagnosis of non-rheumatoid arthritis and fibromyalgia. I wasn't too happy with either of these to be honest as I felt they just couldn't find a box to put me in so threw me in there - wasn't much know about fibro I guess.

So on and off over the intervening years, I have had numerous periods where i'd flare up; chest infection followed by total muscle and joint inflammation and spasms with chronic pain and insomnia. Was out of work and on disability the whole shebang. In between times, I'd have the pain and the chronic fatigue but could fight through it well enough to have some kind of life..

Fastforward to about 2 years ago, my last full flare-up, this mark appeared on my face. Asked GP and was told it was just an auto-immune response to my flare up and it would go in time. Numerous times mentioned to a few different docs and a few scrapings taken for tests etc and steroidal cream given. No effect, in fact it spread.

Now, having been on steroids quite frequently which have added weight, finding it hard to exercise yada yada, not having much of a life, chronic pain and fatigue, I'd been dealing with since i was 15, nigh on 20 years, but these marks on my face really got to me. I always had perfect skin dammit!

so anywhoo... another GP sent me to a specialist and he came up with the sarcoidosis piece of the puzzle - first thing he said when he saw the marks.

Biopsy came back today confirming. I just wanted to get it out of my head and onto a page to be honest. Can't really talk to my family at the moment as we are pretty much living through the greatest tragedy to befall us all in my lifetime. I feel selfish even talking about it. But I'm worried, if not a little relieved and I needed to share.

Any advice appreciated.

TL/DR Newly diagnosed. Help

Ciarachino · 21-08-2012 9:40pm

Evening everybody! How you all doin? Lilminx how you getting on? I hope things have settled down a bit for you now! As for myself I got put back onto steroids after two years!! Sarc active again and pred required! This time my parotid gland wanted in on the action!! Struggling on the steroids this time!! Appettite and brain fog driving me mad!! Hopefully will only be a short time back on the steroids!

KHL

Ciarachino

sarcoidosis

Comments