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sarcoidosis

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  • #2


    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.


  • #2


    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


  • #2


    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


  • #2


    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.


  • #2


    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.


  • #2


    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


  • #2


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


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


  • #2


    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


  • #2


    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.


  • #2


    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 -


  • #2


    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.


  • #2


    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.


  • #2


    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


  • #2


    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.


  • #2


    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.


  • #2


    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.


  • #2


    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.


  • #2


    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


  • #2


    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


  • #2


    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


  • #2


    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!


  • #2


    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.


  • #2


    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?


  • #2


    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.


  • #2


    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.


  • #2
    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.


  • #2
    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.


  • #2


    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


  • #2


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


  • #2


    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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