Addisons , SLE, Sjogrens and this covid19 !affects

[Loopyloo43]

Having Addisons ssojrens and lupus . It worrying time when getting ill in he past and having to have I’v steroids due to nit being able to get the hydrocortisol in me quick enough it’s a tricky situation with this covid 19 and knowing soon enough to implement what’s needed ? Any one else with Addisons on here also ?

[whisperit]

Hello Loopyloo43

It should be the same as normal. I'm assuming you have an emergency IM hydrocortisone injection pack? If you are feeling unwell but not actually on the point of collapse, the Addisons Disease Support Group "sick day rules" are to take double your normal dose of hydrocortisone. That should be enough for you to sort some assistance as required. I've just asked my GP pharmacist to dispense me an extra box of hydrocortisone 10mg tablets just to cover this period of uncertainty. Here's a link to the ADSG advice addisonsdisease.org.uk/news...

[Melba1]

Hi, I don’t have primary addisons but I have complete adrenal suppression from the years of high steroids so it’s the same treatment/ procedures.

Do you have the injection kit for hydrocortisone if too sick? My family and friends have all been taught to inject me and we know to get to hospital quickly if I go into adrenal crisis (usually from vomiting with me). It’s not nice when it happens 😬

The other thing I’ve done is written out a one page ‘emergency admission instructions’. I’ve made it look very medical as if it’s from my rheumy (he’s supposed to be doing it but got distracted!) with arrows leading to boxes saying what to do if I present to A&E in various states (as I often do 🙄🤣).

So the very first point is to immediately give IV hydrocortisone if any signs of adrenal crisis (low BP, high HR, confusion, pain, vomiting, loss of consciousness etc). As I sometimes get those in a lupus flare it is hard for them but my endocrinologist and neurologist said always treat the adrenal crisis FIRST as that’s the most dangerous.

However, I was in hospital recently with an adrenal crisis and, despite my clearly written guidance, it still took 5 hours of then flapping and testing me/ injecting me with all sorts of unnecessary things (potassium, antibiotics etc) before the hydrocortisone. They weren’t busy at that stage, just a very young dr who didn’t understand. I was unconscious so couldn’t give instructions like I normally would so briefing a family member to be very demanding that you need the injection/ IV Immediately would be a good idea too x

[TM1970]

Hi LL, I have Addison’s but don’t really have anything useful to say except best wishes xxxx

[KirstyW1999]

Hi Please read addisonsdisease.org.uk/novel-coronavirus-covid-19.

they recommend local ambulance service and they also advice keeping medical information re adrenal insufficiency or addisons with you

Medication list and emergency hydrocortisone kit .

So pleased I found this information. I called my ambulance service and it was easy to register.

[MissusTee]

I'm worrying as my daughter has a hospital appointment coming to have tests for Addison's as she has had low cortisol levels. I'm worrying that the hospital appointment will be cancelle.

[KirstyW1999]

I suggest you call endocrine nurse .They are very helpful and will give you all the information you need.

Ps ask reception to transfer you to them

X

[Loopyloo43]

Well after trying to get bikes of cortisol we have come to a halt and now without I really just hope I don’t pick the virus up it’s rather scary nit having this to hand in this current pandemic ?!

[sloppydog]

Yes I have Addison's, SLE, Sjogrens, APS and Hashimoto's I am on the Cortisol pump