COVID-19 What do people with immune deficiency need to do?

Posted by chillywillie @chillywillie, Mar 21 6:26am

What do ivigg persons do with immune deficiency? What are symptoms of this corona 19 virus in immune deficiency patients?
Can we go
Out still to get our infusions?
Is gamma globulin tested for this?
Is the ivigg available? Will it help fight off this?
Fevers are not always present with ivigg patients is this same in covid 19?
What treatments do we do if we suspect this?
Is there supplements to take for us ivigg cid persons
That can help protect our health?

Liked by aljinma

@chillywillie, you are asking some really good questions. Can you still go out to get your infusions is really a question for your doctor or medical facility. Are you able to call them to discuss the risks?

Mayo Clinic has a dedicated page for COVID-19 where you can find helpful information and may be able to answer some of your questions.
https://newsnetwork.mayoclinic.org/category/covid-19/

You may also find the following podcast helpful. 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

@chillywillie Great questions. I'm tagging fellow member @sparshall @anniepie @sassykitten93 @xfirerose @ldestella to see how they are managing during this crisis with their primary immunodeficiency conditions and getting intravenous immunoglobulin (IVIG) infusions at this time.

Willie, as you know primary immunodeficiency disorders — also called primary immune disorders or primary immunodeficiency — weaken the immune system, allowing infections and other health problems to occur more easily. So you have to take all precautions and be vigilant about your health. Here is some advice from Mayo Clinic that will help:

– What to do if you suspect COVID-19 https://newsnetwork.mayoclinic.org/discussion/what-to-do-if-you-suspect-covid-19/
– 10 steps from Mayo Clinic’s Infection Prevention and Control team to minimize the spread of COVID-19 https://newsnetwork.mayoclinic.org/discussion/10-steps-from-mayo-clinics-infection-prevention-and-control-team-to-minimize-the-spread-of-covid-19/
– COVID-19: Symptoms that require emergency care https://newsnetwork.mayoclinic.org/discussion/covid-19-symptoms-that-require-emergency-care/

The best way you can protect yourself is to
– Wash your hands. Wash them often and properly (soap and warm water for a least 20 seconds and make sure you scrub all surfaces: the back of your hands, wrists and under the fingernails too.)
– Keep your distance from others, called social distancing.

To find out if you can continue to get infusions, please call your clinic or hospital where you get the infusions. They can tell you want you need to do to get treatment or if treatment is being suspended. I'd be interested to hear what you find out.

REPLY

Doesn’t seem anyplace knows what us cid
Patients should do to assist our system
In prevention other then lots vit c ? And no one seems to answer the gamma globulin questions on infusion if the ivigg has testing against ANY VIRUSES!
And if it’s bern radiated or what. We are all rare birds but science an medicine SHOULD KNOW ABOUT THE IVIGG SUPLY AND HOW SAFE IS IT!
What’s tested in it since it’s a blood source product !
With all the druggies our selling thier plasma who knows what tests are REALLY FONE! And how pure is it??
As pricey as this stuff is to get you would think this high priority need would be worthy of purring! It again is all about following the money trails!
Plus to prioritize the other humans with immune deficiency should be hi priority

REPLY
@chillywillie

Doesn’t seem anyplace knows what us cid
Patients should do to assist our system
In prevention other then lots vit c ? And no one seems to answer the gamma globulin questions on infusion if the ivigg has testing against ANY VIRUSES!
And if it’s bern radiated or what. We are all rare birds but science an medicine SHOULD KNOW ABOUT THE IVIGG SUPLY AND HOW SAFE IS IT!
What’s tested in it since it’s a blood source product !
With all the druggies our selling thier plasma who knows what tests are REALLY FONE! And how pure is it??
As pricey as this stuff is to get you would think this high priority need would be worthy of purring! It again is all about following the money trails!
Plus to prioritize the other humans with immune deficiency should be hi priority

Jump to this post

Hi @chillywillie, like you, I refer to trusted sources on the internet for information. Here's some information that I found from regarding COVID-19 and the safety of blood products:

– Coronavirus Disease 2019 (COVID-19) Frequently Asked Questions https://www.fda.gov/emergency-preparedness-and-response/mcm-issues/coronavirus-disease-2019-covid-19-frequently-asked-questions#biologics
See the section on Vaccines, Biologics, Human Tissues, and Blood Products

"Q: Does COVID-19 present a risk to the safety of the nation’s blood supply?
A: In general, respiratory viruses are not known to be transmitted by blood transfusion, and there have been no reported cases of transfusion-transmitted coronavirus.

Q: What steps are being taken to protect the U.S. blood supply from SARS-CoV-2, the virus that causes COVID-19?
A: Blood donors must be healthy and feel well on the day of donation. Routine blood donor screening measures that are already in place should prevent individuals with respiratory infections from donating blood. For example, blood donors must be in good health and have a normal temperature on the day of donation.

Donors are instructed to contact the donor center if they become ill after donation, so that their blood or plasma will not be used. Even when a donor develops COVID-19 after donation, however, there have been no cases of COVID-19 linked to donor blood or products made from blood."

There's more information on the website. Additionally, you can ask your hospital about the measures they take. Ensuring that blood products are safe is a top priority.

REPLY

Hello!!! may i first say pls take a deep breath n breathe. I was just released from a 4-day quarantine in my local hospital. I am just over one week till my next infusion…when i feel my worst, and am fine now. originally went to my PCP for upper respiratory infection n he suggested i go to ED on this past Monday. I did n while waiting, my daughter text me stating she was exposed to ppl whom were positive. I told the hospital that and they swept me away into protocol n did a great job. I myself am also a RN disabled n have a master's public health. n watched from the inside. So, stay home, listen to ur body first a foremost…u know it better than the docs. if u feel u need meds..call ur doc, but otherwise stay home n do ur best…that's all we can do…n pray xo

REPLY
@ldestella

Hello!!! may i first say pls take a deep breath n breathe. I was just released from a 4-day quarantine in my local hospital. I am just over one week till my next infusion…when i feel my worst, and am fine now. originally went to my PCP for upper respiratory infection n he suggested i go to ED on this past Monday. I did n while waiting, my daughter text me stating she was exposed to ppl whom were positive. I told the hospital that and they swept me away into protocol n did a great job. I myself am also a RN disabled n have a master's public health. n watched from the inside. So, stay home, listen to ur body first a foremost…u know it better than the docs. if u feel u need meds..call ur doc, but otherwise stay home n do ur best…that's all we can do…n pray xo

Jump to this post

Such a great, common sense post, Idestella! Thanks for sharing and also your hospital experience. Glad they were quickly responsive when you described your situation! Our healthcare workers so deserve our thanks and praise and prayers for their continuing bravery and care as they daily expose themselves to very ill people.

REPLY

I am a liver transplant patient from Nevada and have concerns getting my weekly labs. I have been using LabCorp. I self quarantine in my truck until they call me on my phone to do my blood draws. I wear a face mask and open the door with a Clorox wipe and wear eye protection. I disinfect my shoes at home and wash my hands and clothes. My mail is disinfected before I touch it. Am I over reacting or is there anything else I can do besides staying at home?

REPLY

I don't think you are being over reacting. It's better safe than sorry. Does your doctor need you to do lab work every week? Can you do it twice a month? Discuss your concern with your doctor.

REPLY

I kinda think you're getting a little too carried away with fear. Yes it's good to be cautious, but I am six months out from my TP. I think wearing eye protection isn't giving you much a d disinfecting your mail. While I wouldn't discourage from doing whatever you feel comfortable doing, I think keeping your distance is more important. Also find how many cases have been confirmed in your area. If there hasn't been many, decrease your concern a little. if there has been a lot, be more careful.

REPLY
@jdlogan65

I am a liver transplant patient from Nevada and have concerns getting my weekly labs. I have been using LabCorp. I self quarantine in my truck until they call me on my phone to do my blood draws. I wear a face mask and open the door with a Clorox wipe and wear eye protection. I disinfect my shoes at home and wash my hands and clothes. My mail is disinfected before I touch it. Am I over reacting or is there anything else I can do besides staying at home?

Jump to this post

@jdlogan65 Good morning. I don’t think you’re being over cautious. Maybe sterilizing the mail is a bit much, but…. When did you have your transplant? Maybe @rosemarya can advise you. She is also a liver transplant patient

REPLY
@jdlogan65

I am a liver transplant patient from Nevada and have concerns getting my weekly labs. I have been using LabCorp. I self quarantine in my truck until they call me on my phone to do my blood draws. I wear a face mask and open the door with a Clorox wipe and wear eye protection. I disinfect my shoes at home and wash my hands and clothes. My mail is disinfected before I touch it. Am I over reacting or is there anything else I can do besides staying at home?

Jump to this post

@jdlogan65– I agree with @becsbuddy I think that sanitizing your mail is a bit overboard. Why not just wear gloves when you open it? Then you can use hand sanitizer after you read what you need to? By the way, how do you sanitize your mail?

REPLY
@becsbuddy

@jdlogan65 Good morning. I don’t think you’re being over cautious. Maybe sterilizing the mail is a bit much, but…. When did you have your transplant? Maybe @rosemarya can advise you. She is also a liver transplant patient

Jump to this post

Thank you @becsbuddy, for inviting me to this conversation.

@jdlogan65, Believe me when I say that I understand your concern. Here is what Mayo Clinic has posted for transplant patients – It will give you most of the answere that you are looking for. -Specific questions and answers about COVID-19 for transplant patients –
https://www.mayoclinic.org/patient-visitor-guide/covid-19-faqs/transplant
I applaud you for being extra careful to take care of yourself because you have been down a long frightening journey to get where you are today. I don't think that we can be too careful after transplant surgery, and I don't know whether you need to take all of the precautions that you mentioned. I do think it depends on your comfort level and also any other health issues that you might have, Only you and your transplant team can best answer your specific. Why don't you call them. (PS-I have, in the past, met other recipients who waited in their vehicle like you are doing during seasonal flu season)

Please post your question in the COVID-19 in Transplant Patients discussion where other transplantees will be able to see it and to respond. Another piece of advice from me (10+ years post liver and kidney transplant) is to read thru all of the responses in that particular conversation. I find great comfort and encouragement by knowing that I am not alone with some of the same fears as you have during this pandemic. https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/

Will you let me know what you learn about labs? I am due in 3 weeks and am beginning to wonder about that,too.

REPLY
@colleenyoung

@chillywillie Great questions. I'm tagging fellow member @sparshall @anniepie @sassykitten93 @xfirerose @ldestella to see how they are managing during this crisis with their primary immunodeficiency conditions and getting intravenous immunoglobulin (IVIG) infusions at this time.

Willie, as you know primary immunodeficiency disorders — also called primary immune disorders or primary immunodeficiency — weaken the immune system, allowing infections and other health problems to occur more easily. So you have to take all precautions and be vigilant about your health. Here is some advice from Mayo Clinic that will help:

– What to do if you suspect COVID-19 https://newsnetwork.mayoclinic.org/discussion/what-to-do-if-you-suspect-covid-19/
– 10 steps from Mayo Clinic’s Infection Prevention and Control team to minimize the spread of COVID-19 https://newsnetwork.mayoclinic.org/discussion/10-steps-from-mayo-clinics-infection-prevention-and-control-team-to-minimize-the-spread-of-covid-19/
– COVID-19: Symptoms that require emergency care https://newsnetwork.mayoclinic.org/discussion/covid-19-symptoms-that-require-emergency-care/

The best way you can protect yourself is to
– Wash your hands. Wash them often and properly (soap and warm water for a least 20 seconds and make sure you scrub all surfaces: the back of your hands, wrists and under the fingernails too.)
– Keep your distance from others, called social distancing.

To find out if you can continue to get infusions, please call your clinic or hospital where you get the infusions. They can tell you want you need to do to get treatment or if treatment is being suspended. I'd be interested to hear what you find out.

Jump to this post

this is really a question—I had malaria for 23 years–will that help protect me from the caronavirus

REPLY
@sumtoi

this is really a question—I had malaria for 23 years–will that help protect me from the caronavirus

Jump to this post

@sumtoi Welcome to Connect. We are a group of groups of people dealing with a variety of medical conditions and the challenges that accompany them. We are not medical professionals so we can only offer opinions based on our studies and experience.
But I think we can tell you that nothing published to date suggests that having malaria will protect you from Covid-19, which is caused by a new-to-humans virus.
Have you read or heard something that led you to ask this question?
Sue

REPLY

I thought since an antimalarial pill has been shown to be helpful in turning around the recovery for a few individuals that perhaps it produces a response in the body that also affects the virus. Since my course with the disease has run, perhaps my body now has the means to kill the virus. I know the pills attack the larva stage as it tries to get into the red blood cells but I was hoping battling the disease for 23 years has caused my body to develop a killing mechanism of its own that could affect the virus. My father was in the pacific islands during WWII and came home with the disease and his attacks lasted for 22 years. The disease usually quits with attacks in 20-25 years. I acquired the disease in Africa while on antimalarial pills and my attacks lasted 23 years. I don't know what is left in the body after those years, if anything. The disease damages the alveoli in the lungs but mine is relatively minimal and restricted to my right lung. However, I was hoping it engenders antibodies or something that would attack the virus. Something in my body does not do well with vaccines. I wound up in the hospital after the flu vaccine and the same thing happened after the pneumonia vaccine and I was taking antimalarial pills when I caught malaria, so I would not be keen to get a Coronavirus vaccine and was hoping my years with malaria would have stimulated a response in my body that would accomplish what the pills have shown to do on the few people so far. Thanks, Jill

REPLY
Please login or register to post a reply.