1. < Autoimmune Diseases

Does autoimmune disease = immunocompromised?

Posted by ddwilliams @ddwilliams, Mar 12, 2020

Does having an autoimmune disease (PSC specifically) mean that you should avoid situations with other immunocompromised individuals? Yes, this is coming up because of coronavirus, but good to know for the future guidance anyway. The PSC'er has not had a transplant and is otherwise healthy. I'm just not clear if autoimmune = immunocompromised. Thank you in advance.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

ddwilliams | @ddwilliams | Mar 14, 2020
In reply to @rosemarya "@ddwilliams, I don't know either. This might be a good question for his liver doctor. By..." + (show)
@rosemarya

@ddwilliams, I don't know either. This might be a good question for his liver doctor.
By the way - How long has he had PSC? How is he being monitored? Any symptoms?

Jump to this post

I asked, but more in reference to travelling for Spring Break (we had plans to take the train from Chicago to DC and NYC). I asked before all of the shutdowns and isolation really started happening. I basically received the response to wash hands, etc., without a real answer to the immunocompromised piece. Now it doesn't really matter as everything is basically at a halt anyway.
He was diagnosed with PSC 6 months ago and is 10 years old, so very early stages. No symptoms, liver values stabilized with vancomycin, bloodwork every 6 months, and annual fibroscan. I'm just being a protective mom and new to this world.

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 14, 2020
In reply to @ddwilliams "I asked, but more in reference to travelling for Spring Break (we had plans to take..." + (show)
@ddwilliams

I asked, but more in reference to travelling for Spring Break (we had plans to take the train from Chicago to DC and NYC). I asked before all of the shutdowns and isolation really started happening. I basically received the response to wash hands, etc., without a real answer to the immunocompromised piece. Now it doesn't really matter as everything is basically at a halt anyway.
He was diagnosed with PSC 6 months ago and is 10 years old, so very early stages. No symptoms, liver values stabilized with vancomycin, bloodwork every 6 months, and annual fibroscan. I'm just being a protective mom and new to this world.

Jump to this post

@ddwilliams, PSC is a rare disease, and you are fortunate that your son was able to get a diagnosis early. Unfortunately there is no cure for PSC, and some patients progress to liver failure while others do not. My PSC was discovered when I was an adult. I do not have any experience with pediatric PSC, and I want you to be able to talk to others who are living with Pediatric PSC. Do you know about PSC Partners Seeking a Cure? - PSC Partners Seeking a Cure provides education and support to PSC patients, families and caregivers and raises funds to research causes, treatments and cures for primary sclerosing cholangitis.

Here is the Home Page. http://pscpartners.org/
and
Here is the link to PEDIATRIC PSC - http://pscpartners.org/pediatric-psc/

REPLY
1 reply
ddwilliams | @ddwilliams | Mar 18, 2020
In reply to @rosemarya "@ddwilliams, PSC is a rare disease, and you are fortunate that your son was able to..." + (show)
@rosemarya

@ddwilliams, PSC is a rare disease, and you are fortunate that your son was able to get a diagnosis early. Unfortunately there is no cure for PSC, and some patients progress to liver failure while others do not. My PSC was discovered when I was an adult. I do not have any experience with pediatric PSC, and I want you to be able to talk to others who are living with Pediatric PSC. Do you know about PSC Partners Seeking a Cure? - PSC Partners Seeking a Cure provides education and support to PSC patients, families and caregivers and raises funds to research causes, treatments and cures for primary sclerosing cholangitis.

Here is the Home Page. http://pscpartners.org/
and
Here is the link to PEDIATRIC PSC - http://pscpartners.org/pediatric-psc/

Jump to this post

Yes, they have been a fabulous resource!

REPLY
candrgonzalez | @candrgonzalez | Mar 21, 2020
In reply to @elmay "I have the very same question. Does having autoimmune disease mean that I am more susceptible..." + (show)
@elmay

I have the very same question. Does having autoimmune disease mean that I am more susceptible to illnesses? Do I need to be more careful than people without autoimmune issues?

Jump to this post

Yes. I have an autoimmune disease and because of the medications that I take I have to be very careful with colds, viruses and infections. I stay away from others as much as I can not only now with the Coronavirus but with flu season as well. Just keep your distance and practice good hand washing. In flu season I'm always disinfecting the surfaces around me.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Mar 21, 2020

I listened to the following informative podcast that may help answer some questions and hopefully help ease some anxiety.

Mayo Clinic Q&A podcast: Dr. Gregory Poland, a Mayo Clinic infectious diseases expert, answers COVID-19 questions:
-- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-qa-podcast-dr-gregory-poland-a-mayo-clinic-infectious-diseases-expert-answers-covid-19-questions/

REPLY
2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 21, 2020
In reply to @johnbishop "I listened to the following informative podcast that may help answer some questions and hopefully help..." + (show)
@johnbishop

I listened to the following informative podcast that may help answer some questions and hopefully help ease some anxiety.

Mayo Clinic Q&A podcast: Dr. Gregory Poland, a Mayo Clinic infectious diseases expert, answers COVID-19 questions:
-- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-qa-podcast-dr-gregory-poland-a-mayo-clinic-infectious-diseases-expert-answers-covid-19-questions/

Jump to this post

@johnbishop And all he would hoard is cheap yellow mustard and dark chocolate! Good podcast to listen to.
Ginger

REPLY
mader62 | @mader62 | Mar 21, 2020
In reply to @johnbishop "I listened to the following informative podcast that may help answer some questions and hopefully help..." + (show)
@johnbishop

I listened to the following informative podcast that may help answer some questions and hopefully help ease some anxiety.

Mayo Clinic Q&A podcast: Dr. Gregory Poland, a Mayo Clinic infectious diseases expert, answers COVID-19 questions:
-- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-qa-podcast-dr-gregory-poland-a-mayo-clinic-infectious-diseases-expert-answers-covid-19-questions/

Jump to this post

I thought this was a very interesting podcast. Calm down people & do what the advisers are telling us to do. If we work together we can beat this.

REPLY
fighter | @fighter | Mar 21, 2020
In reply to @elmay "I have the very same question. Does having autoimmune disease mean that I am more susceptible..." + (show)
@elmay

I have the very same question. Does having autoimmune disease mean that I am more susceptible to illnesses? Do I need to be more careful than people without autoimmune issues?

Jump to this post

Yes!

REPLY
Langold | @rarelybees2889 | Mar 23, 2020

I asked my hemotologist at Mayo and was told that those of us with autoimmune disease are NOT immunecompromised. Our immune system work well, too well!

REPLY
2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 23, 2020
In reply to @rarelybees2889 "I asked my hemotologist at Mayo and was told that those of us with autoimmune disease..." + (show)
@rarelybees2889

I asked my hemotologist at Mayo and was told that those of us with autoimmune disease are NOT immunecompromised. Our immune system work well, too well!

Jump to this post

@rarelybees2889 I will respectfully disagree. Immunocompromised indicates an impaired immune system. Which to me, means not working normally. I guess we can agree to disagree!
Ginger

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.