Does autoimmune disease = immunocompromised?

Posted by ddwilliams @ddwilliams, Mar 12 1:01pm

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.

Hello @ddwilliams, Welcome to Connect. I have no medical background or training but do think there is probably a relationship between an autoimmune disease and immunodeficiency or immunocompromised individuals. Here's some information I found:

The Association Between Immunodeficiency and the Development of Autoimmune Disease
https://pubmed.ncbi.nlm.nih.gov/8934926-the-association-between-immunodeficiency-and-the-development-of-autoimmune-disease/

There is also another discussion you may be interested in following here:
> Groups > Lung Health > COVID-19 Coronavirus — https://connect.mayoclinic.org/discussion/covid-19-coronovirus/

@rosemarya may have some thoughts for future guidance.

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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?

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@elmay I have an autoimmune condition and I’m in my mid 70s so I think I need to be more careful for what it’s worth.

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@ddwilliams Great question! @johnbishop s articles are very interesting, but I would also say to check with the doctor, just to be safe. Many people with autoimmune diseases are treated with steroids and/or chemotherapy drugs. These make us very immunocompromised. Your doctor will know the medications that you’re on and what your lab values are so they will have the best answer for you. All the best to you!

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@ddwilliams, Welcome to Connect. I was diagnosed with Primary Sclerosing Cholangitis (PSC) that progressed to to end stage liver disease, and the need for a liver transplant. There is some research that indicates that there may be some autoimmune connection and that a person with PSC might have other autoimmune conditions. Having an autoimmune disease means that a person's own immune system has turned to attacking a part of his/her own body. He/She is not a risk to anyone.

Immunocompromised – I am now immunocompromised because I take antirejection medicines to suppress my immune system. This is so that my body's natural defense system (immune response) does not attack my transpanted organ, that it thinks is a foreign object . Now, since my natural defense is suppressed, I have to be extra careful to avoid germs, even the common cold.

As long as your friend is healthy, I would feel comfortable being around him. I have my own post transplant rules that I follow all the time. These include: Wash hands, Avoid people who are sick, Avoid crowds during flu season, Don't shake hands. A person who is immunocomprised should be proactive in taking the necessary precautions.

@ddwilliams, Mayo Clinic Rochester MN is the global leader in research and search for a cure for Primary Sclerosing Cholangitis (PSC). I invite you tos hare this with your friend. Pages.Primary Sclerosing Cholangitis (PSC).Newsfeed
https://connect.mayoclinic.org/page/psc/

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I guess my thought was – if it was an environmental trigger that caused the body to turn on itself and develop PSC, is he more susceptible to another environmental trigger? I don't know.

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@ddwilliams Like was mentioned earlier, a great question! The definition of immunocompromised is "having an impaired immune system". To my line of thinking, that includes those who may be taking anti-rejection medications that suppress the immune system. It also, to my thinking, means someone who has a condition that involves their immune system not functioning in a healthy manner, who may or may not be taking medication. Similar to @johnbishop I have several autoimmune conditions, consider myself to be immunocompromised, and take appropriate steps these days.
Ginger

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I am diagnosed with alpha anti tripsyn dificency. As a result of I developed enphasizma and atrophy of my pancreas resulted in acute pancreatitis and gastroparesis.
Which may be my next question could my alpha 1 have a correlation with the atrophy of other organ s e.g. so far cerebellum and pancreas without use of alcohol healthy life style. Thank you.☺

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@ddwilliams

I guess my thought was – if it was an environmental trigger that caused the body to turn on itself and develop PSC, is he more susceptible to another environmental trigger? I don't know.

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@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?

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@marty1996

I am diagnosed with alpha anti tripsyn dificency. As a result of I developed enphasizma and atrophy of my pancreas resulted in acute pancreatitis and gastroparesis.
Which may be my next question could my alpha 1 have a correlation with the atrophy of other organ s e.g. so far cerebellum and pancreas without use of alcohol healthy life style. Thank you.☺

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@marty1996 Wow, the name of your disease is a mouthful. It must be very difficult dealing with all these changes at once. When we’re you diagnosed? What symptoms are you experiencing? And, mostly, what has the doctor said about a correlation to other organs? Id like to invite @waterboy to get involved in this discussion

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@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?

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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.

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@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.

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@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/

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@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/

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Yes, they have been a fabulous resource!

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@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?

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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.

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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/

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