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sarcoidosis

13

Comments

  • #102
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    Hi guys

    Has been a while but was waiting for some news, and TBH I dont really have any until tomorrow. Went back last week to hospital for the 3 month checkup, bloods,x-ray and PFT. Go to see the doc tomorrow for his opinions.
    Well Ciarachino, I spent a month in the sun after diagnosis ( pre booked holiday), spent a good bit of time under umbrellas etc, but also a bit of time in the sun. I had no adverse affects that I could see ( fingers crossed)

    Anyway so far not feeling to bad, still have a bit of a cough, but not so bad as originally.

    Will keep you all posted tomorrow

    Good luck all

    Jay


  • #103
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    lilminx wrote: »
    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

    HI there lilminx

    I hope all is going better for you soon, and hope the issues at home get better for ya.
    In relation to being diagnosed I suppose all I can say is you must be relieved to actually have a diagnosis.
    I would hope that now they know what it is it can be treated.
    You seem to have gone through the mill compared to some ( myself included)
    I would say speak to someone if you can as this thing is long lasting per say,and could be a year or 2, so having someone to chat too will help despite the bad times at home, a problem shared and all that.

    Be prepared for regular hospital visits and tests. Listen to what the doc says.
    Cut down on calcium and too much sunlight ( its ireland 2nd bit should be easy :-) )
    Hopefully this could be the beginning of the end of your ongoing condition.

    Ask lots of questions both of your doc and on here.
    Most importantly be positive, because to be honest this is managable.

    Keep us posted

    Jay


  • #104
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    chef wrote: »
    Hi guys

    Has been a while but was waiting for some news, and TBH I dont really have any until tomorrow. Went back last week to hospital for the 3 month checkup, bloods,x-ray and PFT. Go to see the doc tomorrow for his opinions.
    Well Ciarachino, I spent a month in the sun after diagnosis ( pre booked holiday), spent a good bit of time under umbrellas etc, but also a bit of time in the sun. I had no adverse affects that I could see ( fingers crossed)

    Anyway so far not feeling to bad, still have a bit of a cough, but not so bad as originally.

    Will keep you all posted tomorrow

    Good luck all

    Jay

    Ok So a Quick update

    Was back at the consultant this morning.
    Hes happy with the results, bloods are fine,pft normal,and the x-ray shows the lungs are improving.
    Was hoping to finish all the inhalers but alas the opposite.
    Have to continue on them and he has added another plus a saline nasal spray.
    Also have to get the flu jab.
    Basically he doesnt want me to get any major flu's/infections over the next 6 months as they can aggravate the sarc.

    So overall hes happy, so I am happy.

    So thats me for the moment, good luck all

    Jay


  • #105
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    hi would anybody know if i would get a medecal card as ihave sarcoidosis i never tried as i alway;s taught i would be refused 'thank;s


  • #106
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    kmulligan123@gmail.com wrote: »
    hi would anybody know if i would get a medecal card as ihave sarcoidosis i never tried as i alway;s taught i would be refused 'thank;s

    Hi

    A mediacal card is awarded based on your income and personal circumstances, and not on your ailment.

    Jay


  • #107
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    chef wrote: »
    Hi

    A mediacal card is awarded based on your income and personal circumstances, and not on your ailment.

    Jay

    Not 100% accurate. Some serious illnesses- such as various cancer diagnosis, automatically qualify for a medical card (I think they're processed automatically- you don't even apply).


  • #108
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    smccarrick wrote: »
    Not 100% accurate. Some serious illnesses- such as various cancer diagnosis, automatically qualify for a medical card (I think they're processed automatically- you don't even apply).

    Ok I gladly stand corrected :D
    However I cant imagine that you would qualify based on Sarcoidosis.


  • #109
    sethasaurus
    Registered Users Posts: 86 ✭✭sethasaurus


    I'd like to give my input, as I was diagnosed with sarc 3 years ago but refused steroids from the beginning. I am on a different treatment that is aimed at curing by re-enabling the body's ability to fight the cause of the disease, rather than treating symptoms (which is not a cure).

    If you get acute onset sarc, you are luckier and will most likely not suffer as much as those with the insidious type (like I have).

    Sarcies, on average, die 10-20 years beyond diagnosis (that is the number from WASOG, the sarc pulmonologists).

    Most experienced doctors are aware that steroids don't cure sarc in the long run. I have talked to several specialists who have admitted it, but they really don't have any other ammo to throw at this disease, apart from wheelchairs, oxygen tanks, and lung transplants.
    Apart from lung involvement, sarc can affect all parts of your body, organs, neurological systems, GI tract, everything.

    The steroids do give you short-term palliation by suppressing your immune system. This makes you feel good and stops the symptoms your body would normally experience (fatigue, pain, shortness of breath, edemas).

    If you take a look at the drug dosage information for prednisone, for example, the graph starts off with a high dose, then gradually lowers to the smallest dose, then nothing (which when the doc will be watching, fingers-crossed to see if you go into remission or not). The graph then continues and repeats itself.
    This is the rollercoaster a lot of people ride, sometimes for years, while (usually) their fat deposits build up, hormones are thrown out of balance and the immune system is suppressed, which leads to more vulnerability to pathogens.

    Some people are told to stay out of the sun, yet the doctors don't really know why this is (only from anecdotal evidence, that it helps people to feel less terrible).
    The reason behind the sun affecting sarcies is actually known, although the science is complex and disputed by anyone who thinks vitamin D is good for you.

    One thing that Vitamin D does is suppress your immune system, which makes you feel good. Some people are even addicted to the sun, and even sunbeds for the same reason. The rest of us are knocked flat by exposure to UV or Vitamin D because we have a particular disease process that is affected by it.

    If your eyes are affected, my advice is at least get yourself some sunglasses that block a good portion of UVA and UVB light. This won't cure you but it will help.

    The problem with chronic disease is that it is not like a flu or a broken leg. You may suffer the flu for a week and be back at work. You may catch some bacterial infection, go to the GP and get some antibiotics and be well within a month. You might break your leg, but in around 6 weeks you'll be back in action.

    With chronic diseases like sarc, ME, etc, the condition has been building in your system for many years - sometimes 10, 20, 30 years before you see symptoms. Understandably, these are diseases that are not curable in a week, a month or even a year. Chronic disease can be especially insidious and affect many parts of you and will take a long time to heal, given you can tip the balance back in your favour.

    Unfortunately, mostly, the medical community can supply a lot of "band-aids". Most drugs and treatments are useful for making people feel better while they battle something, but don't actually provide a cure. The human body, however is very good at healing itself, providing the healing mechanism hasn't been turned off. This is what happens in chronic disease.

    I'm losing my train of thought now, as it's 3:30am, but I hope that makes sense to some of you.

    After another round of steroids and relapse, will you be looking forward to doing it all again? I know people who have tried acupuncture, reiki, juicing (bad idea, btw), prayer, homeopathy and other options but they just won't work.
    Everyone knows that no amount of positive attitude will grow back an arm, for example. Neither will it cure chronic disease. You need to tip the balance back in your favour to recover.


  • #110
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    sethasaurus wrote: »
    I'd like to give my input, as I was diagnosed with sarc 3 years ago but refused steroids from the beginning. I am on a different treatment that is aimed at curing by re-enabling the body's ability to fight the cause of the disease, rather than treating symptoms (which is not a cure).

    If you get acute onset sarc, you are luckier and will most likely not suffer as much as those with the insidious type (like I have).

    Sarcies, on average, die 10-20 years beyond diagnosis (that is the number from WASOG, the sarc pulmonologists).
    Most experienced doctors are aware that steroids don't cure sarc in the long run. I have talked to several specialists who have admitted it, but they really don't have any other ammo to throw at this disease, apart from wheelchairs, oxygen tanks, and lung transplants.
    Apart from lung involvement, sarc can affect all parts of your body, organs, neurological systems, GI tract, everything.

    The steroids do give you short-term palliation by suppressing your immune system. This makes you feel good and stops the symptoms your body would normally experience (fatigue, pain, shortness of breath, edemas).

    If you take a look at the drug dosage information for prednisone, for example, the graph starts off with a high dose, then gradually lowers to the smallest dose, then nothing (which when the doc will be watching, fingers-crossed to see if you go into remission or not). The graph then continues and repeats itself.
    This is the rollercoaster a lot of people ride, sometimes for years, while (usually) their fat deposits build up, hormones are thrown out of balance and the immune system is suppressed, which leads to more vulnerability to pathogens.

    Some people are told to stay out of the sun, yet the doctors don't really know why this is (only from anecdotal evidence, that it helps people to feel less terrible).
    The reason behind the sun affecting sarcies is actually known, although the science is complex and disputed by anyone who thinks vitamin D is good for you.

    One thing that Vitamin D does is suppress your immune system, which makes you feel good. Some people are even addicted to the sun, and even sunbeds for the same reason. The rest of us are knocked flat by exposure to UV or Vitamin D because we have a particular disease process that is affected by it.

    If your eyes are affected, my advice is at least get yourself some sunglasses that block a good portion of UVA and UVB light. This won't cure you but it will help.

    The problem with chronic disease is that it is not like a flu or a broken leg. You may suffer the flu for a week and be back at work. You may catch some bacterial infection, go to the GP and get some antibiotics and be well within a month. You might break your leg, but in around 6 weeks you'll be back in action.

    With chronic diseases like sarc, ME, etc, the condition has been building in your system for many years - sometimes 10, 20, 30 years before you see symptoms. Understandably, these are diseases that are not curable in a week, a month or even a year. Chronic disease can be especially insidious and affect many parts of you and will take a long time to heal, given you can tip the balance back in your favour.

    Unfortunately, mostly, the medical community can supply a lot of "band-aids". Most drugs and treatments are useful for making people feel better while they battle something, but don't actually provide a cure. The human body, however is very good at healing itself, providing the healing mechanism hasn't been turned off. This is what happens in chronic disease.

    I'm losing my train of thought now, as it's 3:30am, but I hope that makes sense to some of you.

    After another round of steroids and relapse, will you be looking forward to doing it all again? I know people who have tried acupuncture, reiki, juicing (bad idea, btw), prayer, homeopathy and other options but they just won't work.
    Everyone knows that no amount of positive attitude will grow back an arm, for example. Neither will it cure chronic disease. You need to tip the balance back in your favour to recover.

    Hi

    Can I ask you to expand on this part, are you saying all sufferers or those with acute sarc.
    Thanks
    Jay


  • #111
    sethasaurus
    Registered Users Posts: 86 ✭✭sethasaurus


    Jay,

    I am writing with respect to chronic sarc.

    They (WASOG) say erethyma nodosum and fever remit spontaneously within about 6 weeks, lymphadenopathy may take a year or so to subside).
    You might want to read this:
    http://www.ildcare.eu/Downloads/artseninfo/Sarcoidosis_Statement_1999.pdf

    Acute onset sarc seems to remit much quicker. I can't find the original reference to that statistic right now, but I would say that it would be more relevant to chronic sufferers.

    The problem is that while sarc patients are followed up on every 6 months or 1-2 years, many of them relapse much later on (especially those on steroids!) and 10-20 years down the track may be seeing a different doctor, having relocated or whatever - so the long-term prognosis for this disease is not well known. In the short term, the doctor believes they have been successful (observing remission).

    I know mostly people with chronic sarc. A school friend of mine was diagnosed with the acute version and he told me after a short time (months), he was fine again.

    Chronic sarc, in most cases, is going to last years.

    There are untold numbers of diseases in the chronic disease spectrum, and what they call 'Sarcoidosis' is one of them, although one person's sarc will not be the same as the next. Similarly, there are around 300 different types of disease, which are all labelled as 'cancer'.

    Co-morbidities are very common also. Most people with one type of chronic disease are diagnosed with something else as well (ME, IBS, Chrohn's, Sarc, RA, Psychological/Neurological disorders, MS, diabetes, and many others).

    Some interesting reasearch has been done (note the graph of bacteria found in cigarettes..):
    http://mpkb.org/_media/home/publications/proal_hmrc2010.pdf

    Currently, most of the medical community would be of the view that there is a 'trigger' for Sarc and other chronic diseases like Lyme or CFS. The fact is, they cannot narrow it down in any case to any one particular trigger - not one thing in particular constitutes a cause (e.g. talc is listed as a factor for sarc, but seriously, talc on it's own does not cause sarc).

    A lifetime exposure to everything around us from even before birth (including pathogenic load from parents, via conception and childbirth), results in each person's own blend of bacteria, virii, fungi, heavy metals and other antigens. These are the things that form the recipe for your own particular disease.
    The 'trigger' that often occcurs after 30-40 years of life (and often sooner, especially in the case of childhood diabetes and obesity) is usually the scapegoat for a particular diagnosis.

    The head of the NIH has also admitted that genetic research into disease is almost useless (despite gene research being one of the most heavily funded realms of medicine). We have already picked the low-hanging apples from the tree, as far as curing a few types of disease. The majority of the remaining unexplained and 'incurable' diseases will have to be dealt with in a different way, although current medical knowledge is really behind the times with respect to modern research - the info just hasn't filtered through yet.


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  • #112
    alexjk
    Registered Users, Registered Users 2 Posts: 226 ✭✭alexjk


    Hi sethasaurus,

    What type of treatment are you following at the moment? Is it nutrition based?

    With regards to morbidity, my doctor has been relatively frank about what the reality is which I find more helpful than being told it'll spontaneously heal.

    I didn't know that talc was cited as a factor for sarc, I use it on a regular basis.

    I'm at the end of my 2nd course of steroids in 4 years of diagnosis, I think that my doctor is going to put me on Plaquenil next month as he's very keen to take me off prednisone (and I can't wait to stop taking it). I put a lot of weight on the first time I was on pred, between 3 and years ago but this time the weight gain was minimal as my diet is completely different. I don't eat grains or gluten, I instead eat vegetables and fruit in their place and it's made a huge difference.


  • #113
    sethasaurus
    Registered Users Posts: 86 ✭✭sethasaurus


    Hi Alex,

    The protocol I am on relies on taking a drug which reactivates the body's natural defence mechanism against the pathogens causing the problem. This particular drug also protects your system against fibrosis (what the pulmonologists are worried about when they look at your lungs). Also very important is avoidance of sunlight and various foods.

    When I say co-morbidities, I mean additional diseases (most people with one chronic disease are often diagnosed with others).
    I know that some doctors will say that the disease will 'burn itself out eventually', but this is just not true. Sarc never just goes away on its own, often relapsing several years further down the road.

    Most people I talk to are taking their doc's advice and using prednisone and similar immunosuppressants. Think about what that means for a moment - you are shutting off your immune system. When these drugs don't work, the doc steps you up to another, 'better' drug, which is just more immunosuppression.

    When you get a disease, your body naturally fights it with the immune system, the antibodies are destroyed and filtered out through the normal process (lymphatic system, kidneys & liver). As this happens, you feel pain or discomfort - immunopathology. These are normal reactions. Remember the last time you had the flu? Did it made you ache and sneeze and cough and feel like your head was crushed in a vice? These are the symptoms. You know can't get a pill to cure it. You can take ibuprofen for your headaches and fever, for example, but you still have to wait it out while your body does it's job and clears out those nasty bugs.

    If we suppress the immune system, we don't get the symptoms, but neither do we cure the underlying problem. That is why steroids don't work in the long run.
    They give you short-term relief, switching off your body's normal defenses and making you feel better. In the meantime, you are open to any number of new infections, and also, the underlying disease process that occurs (e.g. in chronic disease) is allowed to progress unchecked.
    (Hence the steroids 'rollercoaster').

    I personally don't believe that shutting down the immune system is the way to cure disease, and there is a whole lot of new research that points the finger at pathogenic causes for chronic diseases.

    Many sarc sufferers do not die from sarc. Some die from pneumonia, some from c. difficile or other opportunistic infections.

    I know quite a few people who are on steroids, and I feel sorry for them, but they keep on getting worse, while I feel I am slowly, slowly improving.
    They choose to feel better right away, but then pay the price in side-effects shortly after. I am playing the long game - I'm not the best right now (I could be a lot worse, actually) but I know the future is more promising than what is in store for my friends. I have already seem people dead and buried because of sarc, and I don't think it's as low as the "1 to 5%" mortality rate that the docs will quote you..


  • #114
    alexjk
    Registered Users, Registered Users 2 Posts: 226 ✭✭alexjk


    Thanks for the detailed answer! I'm interested in finding out the name of the drug you are taking, I like doing research on treatments that are not steroid based. I don't believe the 1 to 5% mortality rate either. I don't know anyone in person with sarcoidosis but a few people I've talked to online have died and quite young as well.

    A medical student friend says nobody really knows for definite what causes it so it's about trying to treat symptoms rather than the underlying cause. My experiences so far go along with that.


  • #115
    sethasaurus
    Registered Users Posts: 86 ✭✭sethasaurus


    If you want info, you can check out www.mpkb.org
    Unfortunately, on the various sarcoidosis support forums and websites, they actively ignore anyone mentioning the Marshall Protocol.
    The truth is, it is not understood very well by a lot of people (including doctors, specialists, and research scientists) and people tend to rubbish things they do not understand.

    I have always been pretty critical and wary of anything that seems too good to be true, but on further examination, one finds the MP is based on some pretty solid research, not to mention the many people who have had their health restored since the online study began around 20002. 12 years of progress, and everyone I speak to would rather be on this track than taking steroids. Many of them swear wouldn't be here today (and some of them were VERY sick) if it wasn't for this treatment.

    There are any number of papers you can quote to support it, but as with many things, there are many papers you can quote to refute it. The fact is, there are people running on the beach with their families now, who, 5 or 6 years ago were unable to get out of bed. Too many people believe that 'it's all downhill from here', and choose to maintain, or put up with their suffering.

    Fortunately, you can make your own decisions on healthcare, not just blindly go where the medics point you.


  • #116
    Jaffusmaximus
    Closed Accounts Posts: 304 ✭✭Jaffusmaximus


    Hi hope everyone is well. I was just wondering that it has been 4 years since I was knocked for six with a really bad episode of sarc, could hardly move the pain was so severe. I had lung biopsy that came up positive but since then all has gone quite. My question is has anyone here had it bad then clear but come back again? It's always on my mind not knowing what control I have over my body! My feet still hurt from time to time and also aching joints. I'm 33 male so I have a lot of time left to be thinking about this aspect of my health!


  • #117
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    I am also on the Marshall protocol for the past 5 years. Before I started I was on a coctail of drugs because I had a lot of lung involvement. I also had other symptoms but didn't relate them to Sarc, however, now I know they were. I was initially diagnosed 25years ago and was on steroids a number of times up to 5 years ago. I decided mysely that I needed to stop and find a better way as I felt any benefits from steroids were wearing off and the symptoms were getting worse especially the involvement in my lungs. I have chronic (long term) sarc and marshall has been a real benefit to me. The only symptoms that I feel are still present is the lung involvement, however, this is always the slowest and last symptom to clear.


  • #118
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    Hi All

    Just a quick follow up, sorry its been a while.

    Been back for a 3 month check up and the prof tells me things are heading in the right direction.
    Lungs are improving ( so says the x ray) and generally he's happy with the way things are going.
    Next visit is in 6 months.
    Continue on the avamys and inhaler and nasal cleanser and see where we are in August or so.
    Hope your all keeping well

    Jay


  • #119
    JoeyJJ
    Registered Users, Registered Users 2 Posts: 3,663 ✭✭✭JoeyJJ


    Diagnosed recently, have to see how my lungs are tomorrow, also have done lots of breathing tests and eye tests. I am currently going private however vhi excesses and consultant fees are raking up. Hoping to find out what is the extent and may have to revert to public system.


  • #120
    Pepsie
    Registered Users, Registered Users 2 Posts: 109 ✭✭Pepsie


    Keep us updated of how you get on JoeyJJ, I wish you well.

    Actually this Ireland Sarcoidosis Group has not been to active in recent years.
    Perhaps we could all reactive this group & start with a basic Roll Call of our numbers here in Ireland, so that we can help one another with; Medical news, Sarcoidosis Specialists, Treatment, etc...

    I will get the ball rolling with myself;

    User name: Pepsie
    Sex: Male.
    Year of birth: 1967 - Present age: 48.
    Diagnosed year: 1996 aged 28 with 10cm brain tumour mass, partial removal of growth mass with brain surgery, later shown to be NeuroSarcoidosis.
    Current Treatment: Symptoms managed by local family doctor only. No available Specialist
    Based in: North Wicklow/South Dublin.


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  • #121
    CathyMoran
    Registered Users, Registered Users 2 Posts: 7,458 ✭✭✭CathyMoran


    Pepsie that is interesting that yours was diagnosed post surgery for what they initially thought was a tumor. Mine was diagnosed post a biopsy of my liver, I had been diagnosed and treated for oesophageal cancer when I was only 32 but the 18 month scan showed something in my liver but thankfully the biopsy showed that it was only scarcoidosis. I have not had any further treatment for it and am 41 at this stage and am a mother of a 4 and 5 year old.


  • #122
    Lu Tze
    Registered Users, Registered Users 2 Posts: 3,495 ✭✭✭Lu Tze


    User name: Lu Tze
    Sex: Male.
    Year of birth: 1984
    Diagnosed year: 2012 - NeuroSarcoidosis. Inflammation on the brain caused stroke like symptoms
    Current Treatment: Currently on Steroids (reducing), mycophenolate and infleximab. Previously on methotrexate.
    Based in: South Dublin

    The immuno-suppressants required do seem to be causing issues with picking up infections etc.


  • #123
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    User name: Chef
    Sex: Male.
    Year of birth: 1971 - Present age: 43.
    Diagnosed year:2 012 Sarcoidosis.
    Current Treatment: On nasal spray still to help with hay fever, also still using the nasal saline wash. Yearly visits to the Consultant, otherwise in good health


  • #124
    JoeyJJ
    Registered Users, Registered Users 2 Posts: 3,663 ✭✭✭JoeyJJ


    Good to see some updates on the thread. Just out of day unit after camera and biopsy down my lungs. Also done pulmonary stress test on thread mill with heart sensors and breathing mask yesterday.

    Sick of all the tests I have been through however hopefully near the end of them and will then understand the extent and future plans.

    Age 37, South Dublin


  • #125
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    JoeyJJ wrote: »
    Good to see some updates on the thread. Just out of day unit after camera and biopsy down my lungs. Also done pulmonary stress test on thread mill with heart sensors and breathing mask yesterday.

    Sick of all the tests I have been through however hopefully near the end of them and will then understand the extent and future plans.

    Age 37, South Dublin

    Chin up Joey, You could be lucky depending on the results, Personally I was lucky with my diagnosis, At first there's steroids and sprays and the like but if that all it is I think you would be happy with that. And as time goes by that lessens.
    Obviously this will depend on what your diagnosis is
    Fingers crossed for you.


  • #126
    JoeyJJ
    Registered Users, Registered Users 2 Posts: 3,663 ✭✭✭JoeyJJ


    Cheers Chief, not one for getting down too long my kids keep me motivated and happy along with my wife.

    Nice to hear it's manageable I have no real serious symptoms apart from an occasional cough and some marks on my skin and I ain't vain.

    Need to improve my fitness so this will give me a kick up the ass to achieve that.


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  • #127
    lilminx
    Registered Users Posts: 230 ✭✭lilminx


    I'm 37 and was diagnosed with sarcoidosis about 4 years ago.

    Marks on my face which had appeared about 3years previously were biopsied to confirm. Further tests showed active sarc in lungs, joints, eyes with neuro and cardiovascular systems clear, although checked annually.

    I have individual specialists for lungs, eyes, skin, joints, neurology and cardio.

    I also have arthritis and fibromyalgia. Currently on methotrexate, imuran, anti- inflammatories, pain meds, lyrics and cymbalta. Was doing better on low dose steroids and plaquenil added to the mix, but then my eyes showed signs of toxicity and my sight was beginning to be affected with vasculitis and macular degeneration diagnosed.

    I'm a crock


  • #128
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    lilminx wrote: »
    I'm 37 and was diagnosed with sarcoidosis about 4 years ago.


    I'm a crock
    Bet your still a lilminx though :-)


  • #129
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    Joking aside lilminx I wish you well
    you are in good company on this page
    Some have it worse than others, you sure have compared to others
    I wish you well and feel free to keep us updated and maybe problem
    s shared and all hat


  • #130
    JoeyJJ
    Registered Users, Registered Users 2 Posts: 3,663 ✭✭✭JoeyJJ


    Had a lung biopsy and numerous other tests will be back in with the consultant next week to see the extent the sarc has had on my lungs.


  • #131
    Pretzill
    Registered Users, Registered Users 2 Posts: 4,696 ✭✭✭Pretzill


    Pretzill here, I was diagnosed pulmonary sarc aged 34 - over ten years ago now - after needle biopsy on lung - wasn't given any treatment - follow up broncoscopy 4 years later was clear.

    I have chronic asthma over twenty years - and take meds for that. They initially thought lung cancer hence the biopsy -


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  • #132
    sparkthatbled
    Registered Users Posts: 629 ✭✭✭sparkthatbled


    I was diagnosed a year ago after a scary series of tests (probably most of you have gone through the ringer with biopsies) because they thought I had Lymphoma. Now I see a consultant every 2-3 months with a slew of tests each time. I'm worried that it's taking too long to get off the steroids, especially because I developed steroid-induced diabetes and I'm really worried about it becoming permanent. Anyone got experience with this? How long did it take to get off the steroids your first time? Did you develop the diabetes? If so, did it go away eventually?

    Anyway, to the main reason why I'm posting I just moved to south-east Dublin. Could anyone recommend a good GP in the area for someone with Sarc? Also, can I request to have my treatment moved to Vincent's? I can't really afford to go up to the usual place every 3 months and I also read there is a Sarc specialist in Vincents. I'm on a medical card if that makes a difference to any of these requests.


  • #133
    Pretzill
    Registered Users, Registered Users 2 Posts: 4,696 ✭✭✭Pretzill


    sparkthatbled wrote: »
    I was diagnosed a year ago after a scary series of tests (probably most of you have gone through the ringer with biopsies) because they thought I had Lymphoma. Now I see a consultant every 2-3 months with a slew of tests each time. I'm worried that it's taking too long to get off the steroids, especially because I developed steroid-induced diabetes and I'm really worried about it becoming permanent. Anyone got experience with this? How long did it take to get off the steroids your first time? Did you develop the diabetes? If so, did it go away eventually?

    Anyway, to the main reason why I'm posting I just moved to south-east Dublin. Could anyone recommend a good GP in the area for someone with Sarc? Also, can I request to have my treatment moved to Vincent's? I can't really afford to go up to the usual place every 3 months and I also read there is a Sarc specialist in Vincents. I'm on a medical card if that makes a difference to any of these requests.

    There was/is ( it's nearly ten years since I have seen him) both a sarc clinic and great consultant in St Vincent's. I was referred there from another country. Regarding the steriods I was lucky not to have to take them all the time ( still take a steriod inhaler) so I don't have any experience of problems there.


  • #134
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    sparkthatbled wrote: »
    I was diagnosed a year ago after a scary series of tests (probably most of you have gone through the ringer with biopsies) because they thought I had Lymphoma. Now I see a consultant every 2-3 months with a slew of tests each time. I'm worried that it's taking too long to get off the steroids, especially because I developed steroid-induced diabetes and I'm really worried about it becoming permanent. Anyone got experience with this? How long did it take to get off the steroids your first time? Did you develop the diabetes? If so, did it go away eventually?

    Anyway, to the main reason why I'm posting I just moved to south-east Dublin. Could anyone recommend a good GP in the area for someone with Sarc? Also, can I request to have my treatment moved to Vincent's? I can't really afford to go up to the usual place every 3 months and I also read there is a Sarc specialist in Vincents. I'm on a medical card if that makes a difference to any of these requests.


    I use Prof Gallagher in Vincent's, however I see him privately through my health insurance. He is the man when it comes to sarc.
    In relation to steroids I was on a high dose at first to ease the symptoms but slowly weaned off them, definitely wasn't on the too long
    Luckily picked up no other issues from their use.

    Best bet is make an appointment for Vincent's and see about the waiting list to see the prof. Hope you get sorted soon


  • #135
    JoeyJJ
    Registered Users, Registered Users 2 Posts: 3,663 ✭✭✭JoeyJJ


    Must try to get to see that guy in Vincents once I have results together for the initial tests my consultants in Blackrock have me on. I am waiting to go back for a Lung biopsy after the Camera down tests were inconclusive.


  • #136
    neil_hosey
    Registered Users, Registered Users 2 Posts: 1,712 ✭✭✭neil_hosey


    JoeyJJ wrote: »
    Must try to get to see that guy in Vincents once I have results together for the initial tests my consultants in Blackrock have me on. I am waiting to go back for a Lung biopsy after the Camera down tests were inconclusive.

    Professor Donnelly in vincents aswell is very good, he looks after me.

    Diagnosed last June. Was having problems with arrythmias with my heart, and an xray showed swollen lymph nodes.

    They say my heart is fine, but was diagnosed with sarc. Not on tabs or anything, but go back every 3 months for a check.

    The mediastinoscopy was not pleasant.


  • #137
    JoeyJJ
    Registered Users, Registered Users 2 Posts: 3,663 ✭✭✭JoeyJJ


    Had my lymph nodes checked in the neck and lungs, all clear, only sign so far was on skin. waiting to see my lung consultant next week (one last check on lungs) she is talking to other consultants that seen me to see where I should go from here. I will prob get my GP to refer me to Professor Donnelly if possible and see what he thinks if I am sent around the houses much more.


  • #138
    JoeyJJ
    Registered Users, Registered Users 2 Posts: 3,663 ✭✭✭JoeyJJ


    Lymph nodes were worrying for surgeon thankfully pathology said no lymphoma but sarc granuloma visible. So back in a few weeks to see what they are gonna do next, This is never ending.


  • #139
    Raytown Rocks
    Registered Users, Registered Users 2 Posts: 814 ✭✭✭Raytown Rocks


    JoeyJJ wrote: »
    Lymph nodes were worrying for surgeon thankfully pathology said no lymphoma but sarc granuloma visible. So back in a few weeks to see what they are gonna do next, This is never ending.

    Head up JoeyJJ, hopefully things get sorted
    Its all very worrying until you get things confirmed


  • #140
    koppy
    Registered Users Posts: 433 ✭✭koppy


    Had sarc on the lungs about 5 yrs ago. Never had any medication or anything was just monitored closely. Been clear for last few yrs.
    My last check up was about 3 weeks ago and I had a bad breathing test and have been noticing a bit of a decline in my breathing. The doc mentioned steroids if it is back.
    Just wondering if anyone has a good experience of been on them. Only hear the badd stories, weight gain etc.Very nervous of been givwn steroids. Might be lucky and not have to but a bit worried at the minute


  • #141
    legallyblonde86
    Registered Users Posts: 75 ✭✭legallyblonde86


    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 ;-)

    I was diagnosed in January, the exact same as this man. Couldn't walk or anything. Am on 40mg Prednisolone a day to be reduced by 10mg each month. All symptoms have cleared up completely but the steroids have side effects because the dosage is so high. Went to a nutritionist and am managing the side affects with diet and have managed to lose weight instead of gain which is a plus. The only thing is if I walk for any long distance my joints ache a bit


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  • #142
    MadamX
    Registered Users, Registered Users 2 Posts: 194 ✭✭MadamX


    Hi fellow sarcies, glad to have found this thread. Diagnosed with sarcoidosis in the lungs, lymph nodes and bones in past months following biopsies and years and years of chronic pain and fatigue. Initial reaction was 'great, now I know what's wrong, a name for it' ... how wrong can you get?!

    On prednisone two months now. Due back to consultant in a few weeks with a plan in place to start reducing steroids very, very slowly. Problem is, not sure I can hack the side effects much longer. Swelling, sweating, total change of character into an absolute demon ... the list goes on. No real improvement in pain levels and if anything I think my breathing has disimproved. Probably a silly question but does it get any better? And if not the steroids, what's the long term prognosis without them. I know I can ask my consultant all these questions, just looking for the perspective of someone who's been through all this and survived to tell the tale!


  • #143
    Lu Tze
    Registered Users, Registered Users 2 Posts: 3,495 ✭✭✭Lu Tze


    MadamX wrote: »
    Hi fellow sarcies, glad to have found this thread. Diagnosed with sarcoidosis in the lungs, lymph nodes and bones in past months following biopsies and years and years of chronic pain and fatigue. Initial reaction was 'great, now I know what's wrong, a name for it' ... how wrong can you get?!

    On prednisone two months now. Due back to consultant in a few weeks with a plan in place to start reducing steroids very, very slowly. Problem is, not sure I can hack the side effects much longer. Swelling, sweating, total change of character into an absolute demon ... the list goes on. No real improvement in pain levels and if anything I think my breathing has disimproved. Probably a silly question but does it get any better? And if not the steroids, what's the long term prognosis without them. I know I can ask my consultant all these questions, just looking for the perspective of someone who's been through all this and survived to tell the tale!

    Not sure if it is always the case, but they usually (with me) try and get you off the steroids and on to something else once its under control, and dropping the steroids gradually.

    It takes a while. The side effects can be bad, but the worst for me was the weight gain, and the proneness to infection. Took over a year to come off the steroids last time, but the weight just fell away when the dose dropped to 5mg and below. I peaked at about 17 stone, and had dropped back down to 13 stone (less than half a stone off my normal weight) by the time i had a relapse last year.

    Back on them again and dropping slowly, knew a bit better what i was in for this time, seem to have peaked above 15 stone, and holding steady at that. Its not too bad if you manage expectations, this isnt something that will clear up over night, or a definitive effective treatment which will shorten the duration. So long as you accept it will take a while, its much easier to deal with.


  • #144
    Reamonnt
    Registered Users Posts: 8 ✭Reamonnt


    Had it nearly 14 years ago, got biopsy and then high doses of prednisole steriods, causing necrosis of hips, had to have both replaced but it was bad case they said so I was saved a worse fate!
    Tired all the time again now, pains in neck and shoulders and now eye all the time. Afraid to go back to Beaumont given what happened before and lenght of time elapsed but have private insurance so might go to guy in Tallaght Prof Donnelly?


  • #145
    sparkthatbled
    Registered Users Posts: 629 ✭✭✭sparkthatbled


    Thought I'd post an update... After languishing on 7.5mg Pred for about a year, I moved to Vincent's as suggested and they've beat great. Down to 2.5 now and should be off them by may. I think the diabetes will remain until I lose a decent amount of weight.


  • #146
    Lu Tze
    Registered Users, Registered Users 2 Posts: 3,495 ✭✭✭Lu Tze


    sparkthatbled wrote: »
    Thought I'd post an update... After languishing on 7.5mg Pred for about a year, I moved to Vincent's as suggested and they've beat great. Down to 2.5 now and should be off them by may. I think the diabetes will remain until I lose a decent amount of weight.

    That's good to hear, it helps knowing when there are targets, and meeting eventually over time. Was in for my sinactin test, so waiting to hear back to get the OK to continue dropping the steroids below 5mg. Best of luck to everybody.


  • #147
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    I was diagnosed with sarcoidosis yesterday by a rheumatologist. I've had erthyma nodosum on and off for over 10 years. A barrage of blood tests with flares and even chest xrays. All came back negative over the years.
    Then this month I had awful joint pain and was told it was sacriolitis. I was referred onto the rheumatologist and he diagnosed me with sarcoidosis. I've had no further treating besides the mri they did to find that sacriolitis.
    It seems like just a clinical diagnosis. Can they just tell from symptoms and an mri? I got two steroid shots into my joints and told to come back in a few months.
    Should I be referred onto a specialist? I don't know if this is the normal course of action or if my symptoms are just being treated and I'm being fobbed off.
    Opinions/advise please.


  • #148
    Salvation Tambourine
    Registered Users Posts: 933 ✭✭✭Salvation Tambourine


    Feel so stuck wrote: »
    I was diagnosed with sarcoidosis yesterday by a rheumatologist. I've had erthyma nodosum on and off for over 10 years. A barrage of blood tests with flares and even chest xrays. All came back negative over the years.
    Then this month I had awful joint pain and was told it was sacriolitis. I was referred onto the rheumatologist and he diagnosed me with sarcoidosis. I've had no further treating besides the mri they did to find that sacriolitis.
    It seems like just a clinical diagnosis. Can they just tell from symptoms and an mri? I got two steroid shots into my joints and told to come back in a few months.
    Should I be referred onto a specialist? I don't know if this is the normal course of action or if my symptoms are just being treated and I'm being fobbed off.
    Opinions/advise please.


    Obviously I'm not a doctor so just telling you of my recent experience.

    I was recently in hospital with suspected sarcoidosis, was released on Monday 15th but still suffering pain and discomfort. The MRI can help inform them of the diagnosis but I've since had an EBUS biopsy to get a sample from the lymph nodes. I wasn't given a steroid injection and was encouraged not to go down the steroid route. That said, when I was leaving hospital my swelling had gone down and I was much better than I had been days before.

    My doctor said that without the EBUS they were 90% sure it was sarcoidosis so I'd say they can make a fairly certain diagnosis without being 100% sure.

    If you're symptoms continue get in touch with your doctor again, I was in the hospital for the EBUS on Tuesday and just waited in the ward I was in until I could see my doctor to raise some concerns I had with my recovery, it certainly eased my mind.


  • #149
    Skaterguy69
    Registered Users Posts: 1 ✭Skaterguy69


    Hi all ,I've been wanting to post on here for ages but it wouldn't let me create an account for some reason anyway I have one now
    It's been a rough few months for me I've been in and out of hospital since the summer and was diagnosed with sarcoidosis in my lungs.
    But I am having all sorts of other symptoms my throat is really inflammed I have weakness in my hands and legs and have a constant sharp pain in my heart is hope it's costochondritis but I had a sneak peak at the ecg machine and it said "nonspecific tvalve abnormality " what could that mean? Cardiac sarcoidosis? I'm really worried about all this is might have nuerosarc I've all the symptoms and nobody believes me
    A few months ago I was fine it's just not fair I'm off prednisolone now as it was making my throat and the weakness worse so I'm just in limbo at the moment


  • #150
    JoeyJJ
    Registered Users, Registered Users 2 Posts: 3,663 ✭✭✭JoeyJJ


    Anyone know if vaccine rollout will consider sarc for early vaccines.


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  • #151
    corollake35
    Registered Users Posts: 46 ✭corollake35


    JoeyJJ wrote: »
    Anyone know if vaccine rollout will consider sarc for early vaccines.

    I don't think the left hand knows what the right hand is doing here.
    GP can't tell me and HSE give a generic answer.
    Can't get through to consultant.
    Wait and see, cross your fingers, toes and whatever else you can because this vaccine rollout is a bit of a mess at the moment.


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