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sarcoidosis

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    #152
    tom1ie
    Registered Users Posts: 10,036 ✭✭✭✭tom1ie


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

    Just got my diagnosis of sarc from my doc today after an EBUS I had a couple of weeks ago.
    He said he’d be seeing me at the end of April and has put my name down on the list for the vaccine, so I presume that means sarc is considered eligible for early vaccines?
    Also read something on the isarc Facebook page about some sarc patients getting on the list.
    As the above poster mentioned it might not mean much as supply of the vaccine isn’t the may west!


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    #153
    Noodles81
    Registered Users Posts: 296 ✭✭Noodles81


    tom1ie wrote: »
    Just got my diagnosis of sarc from my doc today after an EBUS I had a couple of weeks ago.
    He said he’d be seeing me at the end of April and has put my name down on the list for the vaccine, so I presume that means sarc is considered eligible for early vaccines?
    Also read something on the isarc Facebook page about some sarc patients getting on the list.
    As the above poster mentioned it might not mean much as supply of the vaccine isn’t the may west!

    I got mine last Friday. I'm in the very high risk category due to the medications I'm on. Think a few others are the same on Isarc.


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    #154
    Lu Tze
    Registered Users Posts: 3,495 ✭✭✭Lu Tze


    tom1ie wrote: »
    Just got my diagnosis of sarc from my doc today after an EBUS I had a couple of weeks ago.
    He said he’d be seeing me at the end of April and has put my name down on the list for the vaccine, so I presume that means sarc is considered eligible for early vaccines?
    Also read something on the isarc Facebook page about some sarc patients getting on the list.
    As the above poster mentioned it might not mean much as supply of the vaccine isn’t the may west!

    Got my first jab on Saturday, have neuro sarc if that makes it any different as regards potential impacts.


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    #155
    corollake35
    Registered Users Posts: 43 ✭corollake35


    Noodles81 wrote: »
    I got mine last Friday. I'm in the very high risk category due to the medications I'm on. Think a few others are the same on Isarc.

    Can I ask who contacted you, was it your GP or your hospital consultant?
    I expect things to be slow at this stage, but I get annoyed when I hear of people with the likes of arthritis having gotten theirs already.
    I don't blame these people and am not angry with them, it's the system for selection I'm annoyed with.
    I've been hibernating since last march due to my condition.

    Also, how does ISARC work? I haven't signed up because the website looks dormant for quite some time. Is it still active?


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    #156
    Lu Tze
    Registered Users Posts: 3,495 ✭✭✭Lu Tze


    corollake35 wrote: »
    Can I ask who contacted you, was it your GP or your hospital consultant?
    I expect things to be slow at this stage, but I get annoyed when I hear of people with the likes of arthritis having gotten theirs already.
    I don't blame these people and am not angry with them, it's the system for selection I'm annoyed with.
    I've been hibernating since last march due to my condition.

    Also, how does ISARC work? I haven't signed up because the website looks dormant for quite some time. Is it still active?

    I got a phonecall from the hospital, admin person I reckon.


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    #157
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,278 Mod ✭✭✭✭The_Conductor


    I have pulmonary sarcoidosis and Crohn's Disease- and am on an immune suppressant (Azathioprine) and a biologic (Stelara).
    I've not heard anything from anyone- and my GP says they are only giving out age related doses- and are still on the over 75s.

    I know some people can be crippled, literally, from arthritis- however, how/why do arthritis sufferers trump sarcoidosis and Crohns- or other combinations of chronic conditions?

    There seems to be zero thought given to anything- and some people are incredibly lucky to be getting vaccinations- based purely on their consultants- or GPs- when others, arguably in similar or worse positions- are hearing absolutely nothing.


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    #158
    tom1ie
    Registered Users Posts: 10,036 ✭✭✭✭tom1ie


    corollake35 wrote: »
    Can I ask who contacted you, was it your GP or your hospital consultant?
    I expect things to be slow at this stage, but I get annoyed when I hear of people with the likes of arthritis having gotten theirs already.
    I don't blame these people and am not angry with them, it's the system for selection I'm annoyed with.
    I've been hibernating since last march due to my condition.

    Also, how does ISARC work? I haven't signed up because the website looks dormant for quite some time. Is it still active?

    The website doesn’t seem to have much activity going on but the Facebook page is full of info and has active discussions.
    I only joined it last week.


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    #159
    koppy
    Registered Users Posts: 433 ✭✭koppy


    Had lung sarcoid 10 yrs or so ago. No medication and have been having yearly checkups for the last 5 yrs.

    Have had 3 calls in the last week offering me the jab. Would not consider myself to be high risk as over 5 yrs free from sarcoid. Bit surprised to get the calls to be honest


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    #160
    corollake35
    Registered Users Posts: 43 ✭corollake35


    koppy wrote: »
    Had lung sarcoid 10 yrs or so ago. No medication and have been having yearly checkups for the last 5 yrs.

    Have had 3 calls in the last week offering me the jab. Would not consider myself to be high risk as over 5 yrs free from sarcoid. Bit surprised to get the calls to be honest

    If I were you I'd take it as soon as possible, God knows when your next opportunity will be.
    I eventually got through to my respiratory consultants secretary (had to ring hospital number and get them to patch me through) and was told I would be on their list, expect a call, but couldn't say when.
    At least I know now who is dealing with the vaccine for me and I wont bother my GP again.
    The sooner I can get vaccinated the sooner my good wife and kids can ease up a bit. My wife feels a huge responsibility as she or the kids would be the only way I could contract the virus. From the outside looking in she's overkill to the max., so I'd like to ease that burden off her too.


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    #161
    Noodles81
    Registered Users Posts: 296 ✭✭Noodles81


    corollake35 wrote: »
    Can I ask who contacted you, was it your GP or your hospital consultant?
    I expect things to be slow at this stage, but I get annoyed when I hear of people with the likes of arthritis having gotten theirs already.
    I don't blame these people and am not angry with them, it's the system for selection I'm annoyed with.
    I've been hibernating since last march due to my condition.

    I got a text message from the hospital my consultant works in.

    My parents are waiting as my mother is very high risk too. She got word 4 weeks ago but still hasn't gotten the jab, that was her own GP who contacted her.

    Also, how does ISARC work? I haven't signed up because the website looks dormant for quite some time. Is it still active?

    Isarc is more active in Facebook. They have a private chat page and a general page.


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    #162
    Noodles81
    Registered Users Posts: 296 ✭✭Noodles81


    corollake35 wrote: »
    Can I ask who contacted you, was it your GP or your hospital consultant?
    I expect things to be slow at this stage, but I get annoyed when I hear of people with the likes of arthritis having gotten theirs already.
    I don't blame these people and am not angry with them, it's the system for selection I'm annoyed with.
    I've been hibernating since last march due to my condition.



    I got a text message from the hospital my consultant works in.

    My parents are waiting as my mother is very high risk too. She got word 4 weeks ago but still hasn't gotten the jab, that was her own GP who contacted her.


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    #163
    corollake35
    Registered Users Posts: 43 ✭corollake35


    I got the moderna vaccine earlier today. I received a text last week and a follow up text with exact time to attend vaccination centre 2 days ago. I have a bit of a dead arm, similar to flu jab, but no other side effects. The needle itself was painless. It's great to have the process started.


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    #164
    IrishPhoenix
    Registered Users Posts: 634 ✭✭✭IrishPhoenix


    Does anyone have any recommendations for neurologists and neurosurgeons that that are good with neurosarcoidosis please?


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    #165
    tom1ie
    Registered Users Posts: 10,036 ✭✭✭✭tom1ie


    IrishPhoenix wrote: »
    Does anyone have any recommendations for neurologists and neurosurgeons that that are good with neurosarcoidosis please?

    Try the Isarc Facebook page. They are quite active and may be able to point you in the right direction.


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