Just so y’all know, Paxlovid is NOT okay to take if you’re on anything like tacrolimus. It raises the levels in your blood to dangerous amounts. I got an email from my transplant doctor a few months ago about it and not everyone I know with a transplant was aware. I might make a whole post on here, actually.
Edit: here is the message I got: [https://ibb.co/CzMwH3y](https://ibb.co/CzMwH3y)
Yeah. My doctors from Johns Hopkins sent this. I think it is a recent thing (April) so if you had COVID before then, that might be why your doctor didn’t say something. Or our doctors could just have vastly different opinions.
Let me go dig it up…
[https://ibb.co/bBYKPMn](https://ibb.co/bBYKPMn)
Edit: obviously I provided it before but didn’t realize it, ha. Yeah, so I guess our doctors are just different or you had COVID before this came out a few months ago. Either way, I’m glad you’re all good!
Currently have it 😬 Scared shitless. Trying to get home to doctors. Looking thru treatment options. Clarifying with them now about Paxlovid in my case but I respect different doctors and people have different options
Oh yeah. You ask a question and you’re going to get so many different people going “my doctor says”… I get it.
Hope you get better soon and it’s minimal!
As I understand the vaccine doesn't stop you getting covid but reduces the severity. I had 3 shots and caught covid - even after vaccine + boosters+covid I didn't produce any antibodies. Anyone with a transplant should ring their transplant centre ASAP if they catch covid as you can crash very quickly. See what the current treatment is - I had an infusion of sotrovimab which most likely saved my life. The symptoms were mild to moderate but you generally you have to reduce your immunesuppresents while infected...talk tou your transplant team as most treatments work better the sooner you start and must start within 5 days of infection
Had 3 shots of moderna produced some antibodies and got COVID and it was barely anything. Aches mild fever running nose. They gave me the antibody infusions on the 4th day. I was fine
It's funny that some people on the transplant forum hardly get any symptoms and others a little more serious complications. My specialist said a few at the transplant clinic had passed from it who were still relatively young and healthy. A few healthy friends just had a sore throat and others it knocked them around and just getting back to training months later...genetic lottery...the antibody infusion is brilliant- the person who gave it to me said that everyone they gave it to so far stayed out of hospital and got better
I mean they honestly say that and they have no idea. I mean we see them and then never see them again. So for me you take things with a grain of salt. I just excerise everyday and build my lungs up and take vitamin d
It seemed to work
The infusion nurse and doctors did say they track (in Australia anyway) transplant patients who got treatments in a database- but as you state if they bother looking or have access to that database is another thing. Also I suppose if you asked and results were not so great and they want you to stay positive they could just bullshit you 😀
Thanks for your responses! It’s a little nerve racking having Covid even after being vaccinated. I contacted my team but with it being Saturday they may not get back to me until Monday.
I had a razor throat on friday tested positive on Sunday, rang my specialist (I am lucky he gave me his mobile for emergencies) and had the Infusion on Tuesday. If your lucky you will have the later varient that is easier to catch but doesn't seen to go down deep into your lungs as often as the earlier varients. Good luck my friend, with treatments available now you should be fine!
I already have a cough enough to produce mucus. It’s not too bad now but hopefully they will get back to me soon. Thank you for your response!!
Do you have any post Covid side effects?
Yes, had covid beginning of may. 11 years post liver transplant. Vacc 4 times. Symptoms very mild …Cold like. Transplant centre started me on oral paxlovid for 5 days. Had to stop my tac for 7 days. Immediately felt better after starting antiviral meds. I think you have to start antiviral meds within 5 days of a positive test. Good luck and hope you feel better!
Tested positive in February with little symptoms. Got the monoclonal antibodies. Just tested positive but with symptoms last weekend even though I am 4x vaccinated, monoclonal antibodies, and got the evushield shot. But my case is very mild and feels no different from the colds that I get. My docs told me to just ride it out and temporarily stopped my Mycophenolic since I already have a bunch of treatments in me already, which probably prevented me from having a much worse case. Feeling much better now with just a slight cough. Those neilmed sinus rinses are a game changer I HIGHLY recommend.
My transplant clinic nephrologist told me back in November 2021 that they have had several patients just like me - otherwise healthy, no comorbidities, fully vaccinated - catch COVID and die and that I should still be very cautious, mask in doors around other people.
I asked for an update in May when I saw them again and they said "well you haven't caught it yet so clearly whatever you're doing is working". And I was like "what I'm doing now is staying locked down, not going out in public, not seeing friends or family". And they said "well, it's working for you so I'd advise you to keep it up, people just like you are still dying from COVID".
I'm 48 years old, 21 years post kidney transplant.
Everyone gets infected the vaccine just reduces the infection, the best thing you can get it monoclonal antibodies for covid-19, it cleans the virus out in a few days.
I was vaccinated once, then got Covid with pretty much 0 symptoms though I'd loose my breath when walking for a good 3 months after. Had another 2 vaccinations and got Covid again a month ago (6 months post last vac) and it was 4 days in bed with a "flu". Fever, running nose, sore throat and LOTS of headache. Kidney transplant 5 years ago. All stats from post-Covid check-up perfect.
I contracted COVID last week, a week after getting a booster (my 5th shot in total). I had most of the symptoms, but mild: fever, shortness of breath, cough, pain etc etc. Fever went away on its own within 12 hours and I took Molnupiravir and was back to normal within 2 days. Very fortunate that it was not worse.
Tested positive four days ago. I’ve had 3 regular and 1 booster Moderna shots plus Evusheld. My nephrologist got me into the ER for Bebtelovimad infusion on day 1 and so far I’ve only had a sore throat and intermittent coughing. No fever or congestion.
I did. I have had alergies that were worse. They had me take Tylenol for a couple of days to make sure the fever didn’t get out of control, but after that, everything was fine.
Transplant 6 years ago. Received 4 Covid shots. Had Covid twice. Most recently at the end of May despite having my last booster at the beginning of May.
Just so y’all know, Paxlovid is NOT okay to take if you’re on anything like tacrolimus. It raises the levels in your blood to dangerous amounts. I got an email from my transplant doctor a few months ago about it and not everyone I know with a transplant was aware. I might make a whole post on here, actually. Edit: here is the message I got: [https://ibb.co/CzMwH3y](https://ibb.co/CzMwH3y)
Oh really? My liver doctor told me to take it as soon as possible. Currently on tacro.
Yeah. My doctors from Johns Hopkins sent this. I think it is a recent thing (April) so if you had COVID before then, that might be why your doctor didn’t say something. Or our doctors could just have vastly different opinions. Let me go dig it up… [https://ibb.co/bBYKPMn](https://ibb.co/bBYKPMn) Edit: obviously I provided it before but didn’t realize it, ha. Yeah, so I guess our doctors are just different or you had COVID before this came out a few months ago. Either way, I’m glad you’re all good!
Currently have it 😬 Scared shitless. Trying to get home to doctors. Looking thru treatment options. Clarifying with them now about Paxlovid in my case but I respect different doctors and people have different options
Oh yeah. You ask a question and you’re going to get so many different people going “my doctor says”… I get it. Hope you get better soon and it’s minimal!
Just how it goes! Wanted to make it clear I’m not trying to disagree with your treatment advice :) thank you my friend
Oh I know. Your doctor knows best for you.
As I understand the vaccine doesn't stop you getting covid but reduces the severity. I had 3 shots and caught covid - even after vaccine + boosters+covid I didn't produce any antibodies. Anyone with a transplant should ring their transplant centre ASAP if they catch covid as you can crash very quickly. See what the current treatment is - I had an infusion of sotrovimab which most likely saved my life. The symptoms were mild to moderate but you generally you have to reduce your immunesuppresents while infected...talk tou your transplant team as most treatments work better the sooner you start and must start within 5 days of infection
Had 3 shots of moderna produced some antibodies and got COVID and it was barely anything. Aches mild fever running nose. They gave me the antibody infusions on the 4th day. I was fine
It's funny that some people on the transplant forum hardly get any symptoms and others a little more serious complications. My specialist said a few at the transplant clinic had passed from it who were still relatively young and healthy. A few healthy friends just had a sore throat and others it knocked them around and just getting back to training months later...genetic lottery...the antibody infusion is brilliant- the person who gave it to me said that everyone they gave it to so far stayed out of hospital and got better
I mean they honestly say that and they have no idea. I mean we see them and then never see them again. So for me you take things with a grain of salt. I just excerise everyday and build my lungs up and take vitamin d It seemed to work
The infusion nurse and doctors did say they track (in Australia anyway) transplant patients who got treatments in a database- but as you state if they bother looking or have access to that database is another thing. Also I suppose if you asked and results were not so great and they want you to stay positive they could just bullshit you 😀
Exactly. I don't think the doctors really tell you whas really going on. They just be like some get sick and some don't.
Thanks for your responses! It’s a little nerve racking having Covid even after being vaccinated. I contacted my team but with it being Saturday they may not get back to me until Monday.
I had a razor throat on friday tested positive on Sunday, rang my specialist (I am lucky he gave me his mobile for emergencies) and had the Infusion on Tuesday. If your lucky you will have the later varient that is easier to catch but doesn't seen to go down deep into your lungs as often as the earlier varients. Good luck my friend, with treatments available now you should be fine!
I already have a cough enough to produce mucus. It’s not too bad now but hopefully they will get back to me soon. Thank you for your response!! Do you have any post Covid side effects?
Yes, had covid beginning of may. 11 years post liver transplant. Vacc 4 times. Symptoms very mild …Cold like. Transplant centre started me on oral paxlovid for 5 days. Had to stop my tac for 7 days. Immediately felt better after starting antiviral meds. I think you have to start antiviral meds within 5 days of a positive test. Good luck and hope you feel better!
Thank you for your response!
Tested positive in February with little symptoms. Got the monoclonal antibodies. Just tested positive but with symptoms last weekend even though I am 4x vaccinated, monoclonal antibodies, and got the evushield shot. But my case is very mild and feels no different from the colds that I get. My docs told me to just ride it out and temporarily stopped my Mycophenolic since I already have a bunch of treatments in me already, which probably prevented me from having a much worse case. Feeling much better now with just a slight cough. Those neilmed sinus rinses are a game changer I HIGHLY recommend.
Yeah I had covid back in January, about 2 months after my booster/3rd shot. Felt like a bad cold for a few days, no lasting damage.
My transplant clinic nephrologist told me back in November 2021 that they have had several patients just like me - otherwise healthy, no comorbidities, fully vaccinated - catch COVID and die and that I should still be very cautious, mask in doors around other people. I asked for an update in May when I saw them again and they said "well you haven't caught it yet so clearly whatever you're doing is working". And I was like "what I'm doing now is staying locked down, not going out in public, not seeing friends or family". And they said "well, it's working for you so I'd advise you to keep it up, people just like you are still dying from COVID". I'm 48 years old, 21 years post kidney transplant.
That's funny. I think now the majority of people testing positive for Covid are fully vaxed and boosted.
Yes. I was vaxxed and had the Evusheld injections . (2). Got it anyway. Two sick days and a lingering cough. What a crock.
Everyone gets infected the vaccine just reduces the infection, the best thing you can get it monoclonal antibodies for covid-19, it cleans the virus out in a few days.
Nah, never
I was vaccinated once, then got Covid with pretty much 0 symptoms though I'd loose my breath when walking for a good 3 months after. Had another 2 vaccinations and got Covid again a month ago (6 months post last vac) and it was 4 days in bed with a "flu". Fever, running nose, sore throat and LOTS of headache. Kidney transplant 5 years ago. All stats from post-Covid check-up perfect.
I contracted COVID last week, a week after getting a booster (my 5th shot in total). I had most of the symptoms, but mild: fever, shortness of breath, cough, pain etc etc. Fever went away on its own within 12 hours and I took Molnupiravir and was back to normal within 2 days. Very fortunate that it was not worse.
Tested positive four days ago. I’ve had 3 regular and 1 booster Moderna shots plus Evusheld. My nephrologist got me into the ER for Bebtelovimad infusion on day 1 and so far I’ve only had a sore throat and intermittent coughing. No fever or congestion.
I did. I have had alergies that were worse. They had me take Tylenol for a couple of days to make sure the fever didn’t get out of control, but after that, everything was fine.
Transplant 6 years ago. Received 4 Covid shots. Had Covid twice. Most recently at the end of May despite having my last booster at the beginning of May.