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dispic1

Compromised immune system??

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dispic1

As 1.5 million people are getting letters next week I am still confused as to our situation with having a compromised immune system or not. So say we have, others say not. 

 

 

 

Is there a definitive answer?? 

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vsmith ADSHG Ops Manager

 

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dispic1

Vic, 

 

Thanks for the reply. Do we not have a Dr on the advisory panel who can say either way that taking hydrocortisone makes you or doesn't make you have a compromised immune system? 

 

 

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suep1954
Posted (edited)

Hi

 

As I understand it..... 

 

Being on replacement dose steroids does not mean you are immune suppressed on a day to day basis. 

 

Sensible, progressive updosing to fight infection does not cause immune suppression, you are just mimicking what your body would do naturally. 

 

The problem for us is that once we have an infection our immune system K (killer) cells are not as effective as they used to be pre Addison's .....eg it takes us much longer to shake off colds, UTIs, chest infections, etc. It therefore follows that Coronavirus has the potential to be a serious challenge....or worse. 

 

We may not be on the NHS list of the most vulnerable but we still need to be as isolated from this virus as possible. Take care out there. 

 

Sue

Edited by suep1954
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vsmith ADSHG Ops Manager

Hi both

 

You'll find answers to all this and more here..where we are updating forum members regularly:

https://forum.addisonsdisease.org.uk/forums/forum/89-keep-up-to-date-with-adshg-member-news-here/

 

Our medics responded to the question of immune repression in our sick day rules last week:

https://www.addisonsdisease.org.uk/newly-diagnosed-sick-day-rules

 

Please see Prof Arlts view on her work on those K cells:

https://www.addisonsdisease.org.uk/Blog/research-weibke-arlts

 

We may well be on the NHS list - please await the contacts/letters coming out before assuming you are not.

 

Hope this clarifies. Stick to official sources as social media is full of misleading information and articles without context.

 

Take care all :-)

 

Thanks

 

Vick

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alison63

Thank you Vick for your patience. You must feel like screaming "leave me alone!"

We are all going to need a good long holiday after this is over.

Alison x

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vsmith ADSHG Ops Manager
15 minutes ago, alison63 said:

Thank you Vick for your patience. You must feel like screaming "leave me alone!"

We are all going to need a good long holiday after this is over.

Alison x

 

Hi Alison

 

Thank you for thinking about me.

 

Although yes, its been very fast-changing and worrying for everyone, it's a pleasure to visit the forum and see people asking the important questions and sharing experiences. That's what it's all about.

 

Keep talking everyone!

Vick

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longmorn

Hi Sue,

I wish I had read this thread before posting on another thread.  Your answer, as always, is spot on.

 

Trisha

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suep1954

You are right Trish, we need the  NHS to advise whether they consider us to be  'very vulnerable' or 'vulnerable' or 'no more vulnerable than Joe Bloggs'. . 

 

 

We've been advised to stick to official sources, wait to see if we are 'on the list'........

 

So, I'm keeping quiet..... 

 

Messenger me if you like

 

Sue

 

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karkie

The advice on Addisons Org links to HMGOV. The implication that we are not in the extremely vulnerable category is somewhat surprising given the advice at the annual conference when faced with a crisis and hospital admission during normal times. Partners will presumably not be admitted during the epidemic to advocate on behalf of the patient for administering steroids. It is hard to believe in these times a partner doing this will receive much more than a polite request to get out, if they are even allowed admittance in the first place.  The situation is further compounded by the lack of awareness of the disease on a consistent basis across the country.
 

There should be clarity provided in respect of going to work.  How can going to work be consistent with stringent adherence to social distancing unless we are able to work in isolation from other members of staff.  The rational for not shielding needs justification.  We are a very small section of the population and the economy will not collapse if we are told to self isolate. 

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alison63

If you wish to self isolate that is entirely your choice. If your employer is not protecting you and/or making you go to work that is a different matter. There is guidance on here about Employee rights with regard to Addison's. 

Alison

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dom_hargreaves

Karkie

 

I understand why we are only in the "Vulnerable" group, my sister in law has just had AML and a full stem cell transplant from my wife in the last 8 weeks and has no immune system.  Officially our steroids mean that we have an effective immune system. I look at all the older people that live round me and they are more deserving than I am of High Risk status.

 

I believe that I and all of my family have had a Covid 19 type virus and have written about it on the Forum (sadly we cannot get a positive test).  It is survivable as someone with Addison's and what we as Trustees are seeing is that other people with Addison's are getting through Covid 19.  

 

Professor Simon Pierce has produced a very good video on how to manage Covid 19 with Addison's Disease, it is on the web site, watch it,  we have launched an on line questionnaire looking at membership preparedness.  As a Trustee that has had Covid 19 - all I can stress is PREPARATION, PREPARATION and PREPARATION.  You need a minimum of the following items to self manage your way through Covid 19, without ending up on your own in the local hospital, as you rightly say:

 

30 days reserve of your normal medication.

Injectable steroids x 2

Syringes x 2

Needles x 2

Supporting documentation in the event that you are hospitalised.

 

My advice is practise social distancing, and follow the Government guidelines about staying away from the NHS, unless it is essential.    

 

Sadly 10% of the respondents to the survey stated that they do not have all of the above items for a Covid 19 incident - we have issued guidance to our membership and we are currently working into the NHS and the Irish equivalent so that everyone gets emergency prescriptions in place with sufficient stocks of medication to self manage Covid 19 where possible.  Hopefully more to follow on this later in the week. 

 

Stay Safe, Stay At Home and protect the NHS - good luck

 

Dom

 

I note that the HSE have today declared that a COVID 19 work related incident is RIDDOR reportable which a lot of employers won't want. 

 

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vsmith ADSHG Ops Manager

Hi All

 

Note that the above recommendation for 2x the above items is an ideal I guess..in reality most people struggle get just 1 x. Simon gave 1X as his recommendation. Don't panic if you can't get 2x please!

 

Thanks

 

Vick

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rockville

I had two letters from my hospital one from the Diabetes team the other from Endocrinology both sstating I should stay home for 12 weeks to isolate. My GP told me the same I have other health issues.  In his opinion he said I should be shielded but, however I am not I am fine with this. Its a matter of being careful, wash hands and be mindful of others.

Take care everyone and keep smiling, Kate

 

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gill hall

alison63 could you please tell me where to find the 

'guidance on here about Employee rights with regard to Addison's.' 

Thanks, Gill

 

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annelben

Hi Gill

For the general information I look in the toolbar above About Addisons then choose publications or the Ato Z. Re the virus then look in the Covid 19 where it states we need to keep to stringent social distancing. 

Hope that helps.

Anne

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gill hall

Thanks Anne,

Not sure how I am going to manage that without an NHS letter - about to start teaching again!

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