Acromegaly and the Coronavirus?

Please join the discussion if you wish to share about the pituitary condition Acromegaly

Acromegaly and the Coronavirus?

Postby member_46623 » Tue Mar 17, 2020 6:17 pm

Guidelines for those at ‘high risk’ include Neurological disorders. Had my Adenoma removed 4 years ago but currently under going close monitoring as my routine blood tests are showing raised Growth Hormone and Idf level’s. Am I in the high risk category?
member_46623
 
Posts: 3
Joined: Wed Feb 19, 2020 10:06 am

Re: Acromegaly and the Coronavirus?

Postby plum » Tue Mar 17, 2020 6:29 pm

Hi sorry I can't answer your question but I also wanted to ask for some clarification....
The guidance from the pituitary foundation website is linked to the use of steroid replacement.
If I am not on steroid then does that mean I am not at higher risk. ?
Thanks
Plum
plum
 
Posts: 322
Joined: Tue Nov 09, 2010 9:41 am

Re: Acromegaly and the Coronavirus?

Postby member_46623 » Tue Mar 17, 2020 8:09 pm

Hi plum, I’m not on steroids or any other medications either hence my question too!
member_46623
 
Posts: 3
Joined: Wed Feb 19, 2020 10:06 am

Re: Acromegaly and the Coronavirus?

Postby member_41389 » Tue Mar 17, 2020 8:33 pm

Hi
The only simple answer I've come across to this question is simply do you qualify for a free flu jab every year. If the answer is yes then you count as more vulnerable, along with more than 3 million others in this country.
The issue with steroid replacement is that there is a concern (much stirred by Twitter as usual) about high dose steroids, particularly prednisolone and dexamethasone, which are known to cause immune suppression. Prof Baldweg has said on twitter that they are sure replacement doses have little impact on immunity to getting an infection; there is however the concern that you must stress dose if you get an infection as the extra cortisol is needed to fuel the immune response, that's why the sick day rules are so important.
Take care
Tim
member_41389
 
Posts: 116
Joined: Mon Sep 08, 2014 8:37 am

Re: Acromegaly and the Coronavirus?

Postby Pat » Wed Mar 18, 2020 3:16 pm

we've updated our Q&A today which covers steroid replacing etc. Hope this is helpful - here https://www.pituitary.org.uk/news/2020/03/coronavirus-faqs/

been waiting on further endocrinology guidance for 2 days and should be with us any time & will be at the News link as soon as we get it.

take care everyone
Pat
 
Posts: 323
Joined: Tue Sep 07, 2010 2:25 pm

Re: Acromegaly and the Coronavirus?

Postby plum » Wed Mar 18, 2020 9:51 pm

Hi Pat
Thank you for this.
Can we assume that those NOT on steroid replacement are therefore not at higher risk?
I get the point made by member_41389 about annual flu jab but to be honest I've never discussed flu jab with my GP so I wouldn't know if I should be on that list or not!
thanks
plum
plum
 
Posts: 322
Joined: Tue Nov 09, 2010 9:41 am

Re: Acromegaly and the Coronavirus?

Postby plum » Mon Mar 23, 2020 11:14 am

hello

i have just spoken a lovely man on the pituitary foundation helpline.
he clarified that if NOT on replacement cortisol then still need to practice Social Distancing, Hygiene etc but not necessary to self isolate. This for people who are NOT adrenal insufficient. (for people who Are on replacement hydrocortisone they give advice on the website.)

Thank you to the Pit Foundation for extending helpline telephone hours and for the calm and clear advice I was given.

Plum
plum
 
Posts: 322
Joined: Tue Nov 09, 2010 9:41 am

Re: Acromegaly and the Coronavirus?

Postby Pat » Mon Mar 23, 2020 12:30 pm

bit more info here on the 'confusing' statements about rare diseases

Pituitary conditions as rare diseases

Yesterday’s Government advice https://www.gov.uk/government/publicati ... m-covid-19
will cause more confusion for our pituitary patients.

The Coronavirus Shielding Advice 22 March 2020 also referred to rare diseases:

“4. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).”

Pituitary conditions are rare diseases, however, pituitary conditions in general do not significantly increase the risk of infection, which means point 4 specifically does not apply to pituitary conditions. ‘Pituitary conditions’ mean those with hypopit, panhypopit, prolactinoma, diabetes insipidus, acromegaly, non-functioning adenoma etc
Pat
 
Posts: 323
Joined: Tue Sep 07, 2010 2:25 pm

Re: Acromegaly and the Coronavirus?

Postby plum » Fri Mar 27, 2020 5:54 pm

Thank you for this clarification.

Meanwhile.... does anyone have information on lanreotide ?
In particular how long can the injection be safely deferred ?
I've just had a phone call from the hospital to tell me that my injection due next week is deferred. Or I could inject myself.
I understand why and was expecting this somehow. I know that the injection doesn't have to be at exactly 28 days and that there is some flexibility. But how much ?
Has anyone else had their lanreotide deferred ? Is there another option ?
Thank you
Plum
plum
 
Posts: 322
Joined: Tue Nov 09, 2010 9:41 am


Return to Acromegaly

Who is online

Users browsing this forum: No registered users and 1 guest

cron