Transplant: Vaccines: Covid, Flu, RSV

Charlie5454s, thanks for your info. Are you taking Sirolimus as a form of Tacrolimus? I am having such difficulty with Envarsus XR (another form of Tacrolimus). The levels are either too high or too low. Now they tested too low so I get my dose increased which causes havoc with my anxiety and shaking. Were you put on Sirolimus due to troubles with Envarsus or Tacrolimus? My TC doc told me any med other than Envarsus XR or Tacrolimus is high risk for kidney rejection. Got me too scared to try anything else. Thx, BB

Hi @blbird33 😊
It is great to hear from you! As we wait for @charlie5454s to respond to your question about Sirolimus, I want to let you know that I have been having the same challenge keeping my Envarsus XR (Tacrolimis) level in range too. I was doing great for about a year, but now all of the sudden the level is bouncing around a little bit out of range on both sides (too high one week and then and too low the next). I am supposed to keep in range between 6 and 8. I thought maybe eating high potassium foods like sweet potatoes, bananas, and spinach may be causing it or maybe a fast or slow digestion on different days. Do you have the same target range of 6 to 8? Do you always take your pills at the same time and have your blood drawn about the same time when you go to the lab? I know how frustrating it can be to try and figure out why it's bouncing around, but I do like the long acting Envarsus medication.

Hi. I've been on Sirolimus since day 1 of my transplant in 2005. It's tricky to keep the level where my team wants it...labs often show it's too low or high and then my dose gets bumped up (or down) a mg. until next lab check. But currently it seems steady at 3mg, once a day. I don't know how much it differs from Tacrolimus, but Sirolimus has a possible side effect of AVN, which I've been "fortunate" (not) to experience. Hence, over the past 17 years, I have had both hips, a knee and a shoulder replaced. People wonder wouldn't it have been easier to switch meds rather than switch out joints. Nope...because evidently Sirolimus is doing what it should be doing for my kidney and that isn't as easily replaced as a hip or knee is, as we all know. And being that Dr. Mabry (ortho-surgeon at Mayo) is awesome, these shiny parts are working just fine. Good luck!

@sg3 @cehunt57
I just got my RSV shot. So, now I have completed all three!
My choice was to do each one separately, and that is easy for me since my pharmacy is nearby. Interestingly, I did have to use 2 different pharmacies. The pharmacist at my regular pharmacy said that she does not give more than one at a time so that patient knows which one causes a possible reaction. At the larger chain pharmacy where I had to schedule my Covid shot, the pharmacist offered to add my other shots, but I declined.

@sg3 -As I read your schedule, I remembered when I had my Shingrix several years ago, that it had a real 'kick' to it. I'm extending my hand, virtually if you need one to hold.
Have you already had your shots? Did the pharmacist give all to you at once? How are you doing?

Thank you.

I'm 2 years post-transplant. 67M. My transplant hospital wants all the mentioned shots performed. But I also had monoclonal antibodies injections twice, at their orders, then CDC decided it didn't work. Hmmm. 2-400 mile round trips to my hospital, with lodging, for shots that didn't work. I've had 3 COVID boosters, the last being April 2022. The first 2 were Pfizer, the 3rd was Moderna. 7 days after the Moderna shot, I had a Type II myocardial infarction. That's any heart attack not caused by a clot, I was told in ICU. Nobody mentioned a connection from my heart attack to the COVID shot, but I sure thought about it because that sort of thing was on the news at the time. Right now, I'm refusing the new booster. I've read it has little to no human testing before approval. From Microsoft's website: https://www.msn.com/en-us/health/medical/new-covid-boosters-not-widely-tested-in-humans-how-do-we-know-they-work/ar-AA1h0Gjy. Far as I know, Microsoft supports the vax, and they aren't anti-vaxxers. Do I really want a vaccine that hasn't been properly tested? BTW, 3 months after the Moderna shot/heart attack, I caught COVID. It wasn't much, sniffles, really. That could be due to the vax or not. Could be due to natural immunization. I don't know. I know I respect the opinions of the people on the board, the volunteers, and the Mayo people standing up this forum. No other transplant forums exist better than Mayo. I may be pummeled at bit with this since I'm not on the "give me all the shots" team.

Ultimately yes, after being on Cellcept for 18 years (originally at 500mg. twice a day and then for the last 8 years of it on 250mg. twice daily, I was switched to Myfortic 180mg. twice daily. for the last 5 months. But it wasn't just the gastrointestinal issues....it was chronic, rotten diarrhea which eventually caused a total rectal prolapse and a tear along the uterine wall. This was all surgically repaired 2 months ago and things are so much better...and I don't seem to be having any issues (so far) with the Myfortic.

Hi @charlie5454s 😊
All I can say is you are amazing! It sounds like you have been through many challenges during your 18 plus post transplant journey, but you have not lost your cheerful, grateful, optimistic attitude towards life.... I love it! Do you have any tips for how you approach and handle these challenges as they arise? Any daily rituals? I want to know your secret sauce!

Hi @johnnoregon 😊
I am so happy you joined into this discussion! You are correct. Trying to vaccinate against a coronavirus is unbelievably challenging. I think it is why we never had a vaccine for the common cold.
The mutations and variants of the flu and covid are so difficult to predict and protect against.
The vaccines and monoclonal antibodies that work beautifully one week, quickly become ineffective and obsolete the following week against the new variants.
When I caught covid, I went to the ER and was given an infusion of monoclonal antibodies that worked beautifully. Then 60 days later, a good friend caught covid and I suggested she go to the ER for the same infusion.
But only 60 days later, the virus had mutated and the new variant caused the antibodies that I received to be ineffective and unavailable to her.
We are very lucky that the virus is mutating to be more highly contagious, but less life-threatening when you get it.
I was always scared that the covid virus may mutate to a more lethal variant.
I hope the virus continues to be on the mild side if we catch it.
Thank you again for sharing your excellent thoughts and experience on this topic John. I love to hear different viewpoints so keep it up!

Exact same with me plus got Shingrix vac. I’m only 5 months post transplant. No issues. I take no chances either.