What to do if you test positive for Covid and are immunosuppressed

Posted by joko @joko, Jan 30, 2022

Good advice from PBS on a positive test results action steps. Essentially, time is critical. Contact your PCP or local health department. (I'd be in contact with the transplant team simultaneously.) Anyone had much experience with this subject? https://www.pbs.org/newshour/health/what-vulnerable-patients-need-to-know-about-seeking-covid-care-during-the-omicron-surge

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

@joko My husband is a kidney recipient [10/1/2016]. He has had two vaccinations plus the booster. So, for him, a positive case would be a breakthrough issue. He has told me he is going to contact his transplant team about a fourth dose of Pfizer as a second booster. At this time, he is nearing the end of a 4 week solo road trip. Exposure to lots of people, many not wearing masks, and probably not vaccinated. I put my foot down, and have a rule he must come home showing me a negative COVID test before he can come in the house. Like you, a positive case would be reported to his transplant team, as they know his medical history, then to county health officials and primary care.

As for me, I am immunocompromised due to health issues and current cancer treatments. My oncologist was very adamant at my January appointment, that I get ahold of him if I test positive at any time, to start a monoclonal regimen immediately and tweak my treatment plan.
Ginger

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@gingerw

@joko My husband is a kidney recipient [10/1/2016]. He has had two vaccinations plus the booster. So, for him, a positive case would be a breakthrough issue. He has told me he is going to contact his transplant team about a fourth dose of Pfizer as a second booster. At this time, he is nearing the end of a 4 week solo road trip. Exposure to lots of people, many not wearing masks, and probably not vaccinated. I put my foot down, and have a rule he must come home showing me a negative COVID test before he can come in the house. Like you, a positive case would be reported to his transplant team, as they know his medical history, then to county health officials and primary care.

As for me, I am immunocompromised due to health issues and current cancer treatments. My oncologist was very adamant at my January appointment, that I get ahold of him if I test positive at any time, to start a monoclonal regimen immediately and tweak my treatment plan.
Ginger

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I get my fourth shot (booster) in February. I've been easing back into settings very carefully. But got nervous when I signed up for a Yoga class and no one. Not one other person. Wore a mask. We have among the highest incidence in the state of WI despite our high vaccination rate. I cancelled the yoga course and told the instructor why.

We are all on the wire each and every day with these situations. I hope your husband comes home with a negative test. We are to see my son and daughter-in-law this weekend and they test each time they meet, but just recently began the vaccination process.

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@joko

I get my fourth shot (booster) in February. I've been easing back into settings very carefully. But got nervous when I signed up for a Yoga class and no one. Not one other person. Wore a mask. We have among the highest incidence in the state of WI despite our high vaccination rate. I cancelled the yoga course and told the instructor why.

We are all on the wire each and every day with these situations. I hope your husband comes home with a negative test. We are to see my son and daughter-in-law this weekend and they test each time they meet, but just recently began the vaccination process.

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@joko When chemotherapy was imminent, I got vaccinated in late Jan/early Feb 2021, long before the general population where we live did. I walked in with front line workers and school teachers, and had to explain myself to the medical director there. He had to personally approve my vaccination. The chemo was put off for a few months as we grappled with the "once you start, you're on medication rest of your life" issue. [My case is a blood cancer, not curable by surgery!] I started chemo Aug 2021, same week as boosters were announced, and again I went in and got one of the first booster shots in the county, a day before starting chemo.

Around here, most people are not vaccinated, nor do they mask. We are very careful, like you, and limit any exposure to stores and social things, even outside events. Thank you for the support of a negative test for him! He'll be staying in the motorhome if he is positive!
Ginger

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@joko, I contacted my primary doctor right after I got the PCR results from the health department. She called around that morning to see which hospitals in the region had monoclonal antibodies. None had them in stock, but two were expecting them within two days and the other within four. She got me on all three lists. I was called by one of the hospitals the next day for an appointment the following day.

I also called my transplant team, just in case I couldn’t get treatment locally. They also took me off Mycophenolate temporarily.

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@athenalee

@joko, I contacted my primary doctor right after I got the PCR results from the health department. She called around that morning to see which hospitals in the region had monoclonal antibodies. None had them in stock, but two were expecting them within two days and the other within four. She got me on all three lists. I was called by one of the hospitals the next day for an appointment the following day.

I also called my transplant team, just in case I couldn’t get treatment locally. They also took me off Mycophenolate temporarily.

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Taking you off Mycophenalte was a big step. That surprised me. I can't imagine UWMad touching the drug regimen. I have never been able to get them to adjust practically anything over the years. But i suppose each patient has conditions that require unique medical care. I'm taking 750 mg daily so I am interested. How long were you off the drug? Thanks for sharing. P. S. Did you have any reactions to the monoclonal antibodies?

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@joko

Taking you off Mycophenalte was a big step. That surprised me. I can't imagine UWMad touching the drug regimen. I have never been able to get them to adjust practically anything over the years. But i suppose each patient has conditions that require unique medical care. I'm taking 750 mg daily so I am interested. How long were you off the drug? Thanks for sharing. P. S. Did you have any reactions to the monoclonal antibodies?

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Mycophenolate is known for having the potential for aggravating infections. So, a precautionary measure. I started taking it again yesterday, 1,000 mgs. I was off it 12 days. I’m getting labs done tomorrow…fingers crossed!

I have Sjogren’s Syndrome which causes neuropathy, muscle pain, and some other symptoms in me. A couple hours after I returned home from the treatment, my left foot started itching intensely and it became covered in hives. That went away after a couple hours, followed by both of my feet turning bright red…which is something that happens fairly regularly. The itching and hives was new though.

And, the numbness, tingling, and discomfort in my feet have increased. I also developed new numbness on my face. A similar thing happened after I was vaccinated. My neurologist says it’s a flare caused by my body’s reaction to the immune system boost.

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@athenalee

Mycophenolate is known for having the potential for aggravating infections. So, a precautionary measure. I started taking it again yesterday, 1,000 mgs. I was off it 12 days. I’m getting labs done tomorrow…fingers crossed!

I have Sjogren’s Syndrome which causes neuropathy, muscle pain, and some other symptoms in me. A couple hours after I returned home from the treatment, my left foot started itching intensely and it became covered in hives. That went away after a couple hours, followed by both of my feet turning bright red…which is something that happens fairly regularly. The itching and hives was new though.

And, the numbness, tingling, and discomfort in my feet have increased. I also developed new numbness on my face. A similar thing happened after I was vaccinated. My neurologist says it’s a flare caused by my body’s reaction to the immune system boost.

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Good luck on the labs. Didn't know that about infections and Mycophenolate. These "wonder drugs" have all kinds of side effects, but we endure to keep the organs. There's always a price to pay for everything in life, I guess. Sounds like you've had a rough time. Here's hoping for improvements ahead.

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Hope you’re feeling better Athena, I have you in my thoughts.

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I was wondering if anyone has seemed to have more health problems after receiving the monoclonals and vaccine.

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@lizzy102

Hope you’re feeling better Athena, I have you in my thoughts.

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Yes! Slight sore throat and fatigue lingering. Thank you!

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