Transplant: No or Few Antibodies after COVID Vaccination

@hello1234 My transplant department will not write a lab order for an antibody test but my PCP did for me last spring so I am hoping she will again. At that time I did have some antibodies - 13.83 was my measurement.

I am wondering if the immunosuppressant a person is on affects this and also if the level of immunosuppressant that you take does. I take sirolimus and my transplant department monitors my lab work every other month keeping my sirolimus level very close to the minimum level in the range. It would make sense to me that if a person is at a higher point on the range they would not get as many antibodies as a person on the lower end so I am hoping I will have acquired more.
JK

Hi @contentandwell 🙂 I agree with you. Were you originally on Tacronlimis and switched to sirolimus for a reason...or always on sirolimus?

@hello1234 I was on tacrolimus but my creatinine was higher than my transplant department was comfortable with. We tried combatting that first by my drinking 80 - 100 ounces of water a day. That helped but not enough so they switched me to sirolimus. I still need to drink a lot of water, about 70 ounces a day, but my creatinine and the other associated numbers are not far enough out of range for them to be unduly concerned.
JK

@hello1234 My transplant department will not write a lab order for an antibody test but my PCP did for me last spring so I am hoping she will again. At that time I did have some antibodies - 13.83 was my measurement.

I am wondering if the immunosuppressant a person is on affects this and also if the level of immunosuppressant that you take does. I take sirolimus and my transplant department monitors my lab work every other month keeping my sirolimus level very close to the minimum level in the range. It would make sense to me that if a person is at a higher point on the range they would not get as many antibodies as a person on the lower end so I am hoping I will have acquired more.
JK

Hey JK. The John Hopkins team has said that there is a direct inverse correlation between antibodies developing if a person had the Pfizer vaccine, is on Mycophenolate, is older, and more recent transplant recipient. So, I had Pfizer, am on Mycophenolate, 62, and just one year out….I figure I’m in the not very hopeful antibody development crowd.

@athenalee Well, I had Pfizer and am older but I am five years out from transplant - my transplantiversary is 09.23. I think it makes sense that new transplant recipients would have a lesser response since they are probably on a higher dose of immunosuppressant. As I said, my transplant department watches it carefully and I am just a tiny bit above the low end of the range.

I am definitely writing a message on the portal to ask my PCP to write a lab order for me. It's particularly important to me because my decision on whether or not to fly to Denver could hinge on that. Will your transplant center write a lab order of the antibody test, or have you not asked? Maybe I will try the transplant department first to see if they will.
JK

Happy five year anniversary! 🎉🎊🎈if your primary won’t order I’d definitely check with your team, maybe explain your circumstances. I’m not sure if I’ll get a booster as the first two increased my neuropathy. I see my neurologist next month so I’ll talk with him about it.

Let me know what the results are.

Happy five year anniversary! 🎉🎊🎈if your primary won’t order I’d definitely check with your team, maybe explain your circumstances. I’m not sure if I’ll get a booster as the first two increased my neuropathy. I see my neurologist next month so I’ll talk with him about it.

Let me know what the results are.

@athenalee So sorry to hear that your neuropathy was worse after vaccines. Has that continued to be worse or returned to your baseline? And how long is it since your last vaccine, if you don't mind sharing.
I had a third Moderna Aug 25 which produced no antibodies again. I'm late 60s, 3 yrs out from heart transplant. Taking Cyclosporine, Mycophenolate and low dose Prednisone (due to chronic AMR—antibody-mediated rejection). I've definitely had a rougher month symptom-wise, but am not sure if I can attribute it to the vaccine, since my body hasn't adjusted well to all the medications and side effects. Thankfully though my heart is functioning very well!

Hello. Glad your heart is doing well! My liver is, thankfully, one of the few things going well in my body these days. I have three autoimmune diseases, one of which caused liver cirrhosis. Sjogren’s came out a couple months after my transplant (around last November), I started having hand tremors, then numbness, tingling, pain, etc. in my extremities and back. My liver doctor said it wasn’t related to meds, so said to see a neurologist.

I had my first Pfizer shot in early February, my neuropathy symptoms increased somewhat, reduced back down a little, and leveled out at this new high. I figured I should go ahead and get the next shot, which I did in early March. The reaction that time was significantly worse and did not decline.

I had my first visit with my neurologist in late March. He suspected Sjogren’s Syndrome, labs confirmed this. He also said since my neuropathy is autoimmune disease caused he wasn’t surprised I had the reaction as my body reacted to the vaccine by developing antibodies in response and heightening my symptoms.

I’ve been on a strict no sugar, white flour, etc. diet, walk 2-3 miles/day, exercise, and, take recommended supplements for neuropathy (the ones that don’t conflict with Tac), and, 300 mgs. Gabapentin at night. Most symptoms have continued, the pain and numbness are worse. The sharp nerve pains have decreased.

Are your symptoms neuropathy related? There’s a good Connect discussion group on Covid vaccine and neuropathy, which also includes other reactions, if you haven’t checked it out. Some people report their symptoms go away or decline, some report continuing or worsening. Some had prior neuropathy, but interestingly many did not.