immunosuppressants and Covid vaccine

[MsAmyM]

I was told by my nephrologist that I should wait 3 months to get the current Covid vaccine until my immunosuppressive medication (rituximab) wears off because I won’t mount a good response if I get it now.

Has anyone been told similar advice?

[Bassetmommer NKF Ambassador]

Everyone is different. But I was told two weeks after and two before my infusion. I do Remicade, which is different than what you are on. they do not want you to take any of the shots for flu, Covid, RSV or others when you have just been infused and your immune system is shut down.

[MsAmyM in reply to Bassetmommer]

It’s weird because the doctor told me to go ahead and get the flu vaccination.

I have not seen anything in medical literature that confirms the doctors advice. He said since I had all the recommended previous Covid vaccines, I still have some protection, but I’m also reading that everyone’s protection wanes overtime.

[userotc in reply to MsAmyM]

Yes there's plenty (Govt etc) evidence that the mRNA vaccine wanes very quickly ie >65% in ~6 weeks. And vaccines only prompt immune systems, they don't boost them.

I'd simply ask for scientific evidence that they are beneficial whilst immunosuppressed.

[WYOAnne NKF Ambassador]

Listen to your doctor and go with his advice. I had a transplant friend in WI that got COVID early on and it wound up effecting her kidney function and she lost her transplant. She is back on the transplant wait list. After learning about her, I am scared to get COVID. At almost 24 years out, I will not take the chance and will get the COVID vaccine. Everyone has to do what they think is best for them!

[bestmom247 in reply to WYOAnne]

Thank you for reminding us that we need to do what is right and best for each individual. My body my decision. This is my motto and I research everything and try to make informed decisions that apply only to me and my body.

[WYOAnne NKF Ambassador in reply to bestmom247]

Yes that is what we should all be doing. ...research, research and then make your OWN decision. I rely a lot on my primary care doc and my nephrologist. They both know me well and my quirks etc.

You have to be your advocate, because no one else will. That has been my advice for people on this kidney journey. You know your body better than anyone. Do what you know is right for you!

[Chimama in reply to WYOAnne]

I’m so dissatisfied with our health care system. My primary retired and his office put me with another provider in that office. I’ve seen the Dr ONCE. Onetime the rest of the time I have been seen by PA ‘s seems like hardly the same one twice?? No communication about test results unless I look them up myself. Same with the Nephrologist I met him once. What do the Drs do if they have Assistants doing their patients visits. I can see for colds etc. But a assistant did my skin biopsy? Now assistant supposed to be checking out a new problem too. How close are patients monitored by the Drs themselves I wonder.

[WYOAnne NKF Ambassador in reply to Chimama]

Where do you live? I live in Wyoming and the healthcare is less than desirable since Banner Health took over our medical system. That being said, I do have a great primary care doctor. However, my great nephrologist left Banner Health and set up practice in Gillette, WY - 2 hours from here. Nephrology here used to have 4 doctors, and now have 1. I had an appointment in August that I cancelled because it was with a PA. I saw a PA in February and she couldn't even answer my questions.

You can "Google" "Find a doctor near me". You can refine the search with putting in Nephrology or Primary Care. You can even see reviews of the doctors.

You have to be your own advocate and find a doctor for you.

[Chimama in reply to WYOAnne]

I live in Missouri . Mercy Healthcare here. I’m so worried about the new health problem and upon searching and researching over and over all I feel is more anxiety than ever. The least they could do is explain a test result. Like a ct scan that found a lesion/ nodule in my parotid gland that was on Friday then Monday Eve I had waited all day for them to call or message me. When I called the nurse said O she is referring you to a ENT no explanation about the impression on test stating both benign and malignant should be considered? I’m so confused, tired dk what to do . I am grateful at least for the radiology report.

[WYOAnne NKF Ambassador in reply to Chimama]

My daughter lives in Missouri, Odessa.

You should see if your outpatient radiology department can share reports with you. I have a patient portal with mine, so I can see the actual report done by the radiologist. I usually have to wait 3 days till I can see it. A lot of times the actual report has more info in it than you get from the ordering doctor.

I have nodules on my thyroid and have an ultrasound done on both sides of my thyroid every year. I have had 2 biopsies of the nodules, but all has been OK. When the nodules get to be a certain size they surgically remove them.

From what I understand, it is pretty common to have issues with your parathyroid after kidney transplant. Every time I have labs done, they check my parathyroid hormones.

[Chimama in reply to WYOAnne]

This nodule is on the Parotid gland from what I’ve read even benign ones should be removed. Well it says to make sure your surgeon is very experienced because it involves removing tgat salivary gland and all our facial nerves are surrounding it. It sounds like a ver invasive procedure. I’m very concerned. With so many health problems already I’m overwhelmed.

[WYOAnne NKF Ambassador in reply to Chimama]

Google the surgeon that would do it. See about his credentials and patient reviews. You can always go to St. Louis or KC for surgery, if that is what has to be done. Where are you on the transplant list? Maybe your coordinator could help you with this?

[MsAmyM in reply to WYOAnne]

I think we should all be worried about Covid still. There’s so much they don’t yet know. It’s a game changer. And those who don’t have chronic illnesses and/or immunosuppression have totally forgotten about it. Leaving vulnerable people to figure it out

[Herewegoagain12]

My hepatologist wants me get any and all as long it's not a live virus (old shingles vaccine). I've had all covid shots and boosters, and flu vaccine. Next is the pneumonia shot(s). Without any symptoms. A little soreness at injection site

[Herewegoagain12]

I didn't mention. I'm almost 8 years post liver transplant.

[bestmom247 in reply to Herewegoagain12]

Congrats. My brother is is nearly 18 months post liver transplant. I on the other hand am still waiting for a kidney.

[Herewegoagain12 in reply to bestmom247]

My GFR 22, creatinine 1.9. Not quite ready to be listed but it won't be too long before I join you waiting for a kidney.

[bestmom247 in reply to Herewegoagain12]

No, get on a renal friendly diet. You can keep yourself off of dialysis. It is not hard. I wish I knew then what I know now. I too would not be on dialysis. It is your body, take care of it and it will take care of you. Here is a web site for renal friendly recipes: atlas-lifestyle.com/

[Herewegoagain12 in reply to bestmom247]

Very kind of you. My kidney can on stay the same ar get worse. The meds that are keeping my liver alive are also what's killing my kidney. Honestly, I decided when I was told about kidney at stage 4 that I wasn't interested in in dialysis or another transplant. The first one took me 8 months before I could walk with a walker. I do eat mostly kidney friendly, but I have a sweet tooth left from my alcohol battle, even after years sober. I'm at peace with my decision. Just can't tell my neph or he'll quit treating me. Anyways, good luck to you both!

[bestmom247 in reply to Herewegoagain12]

I am so proud of you for taking control of your own body. If dialysis and transplant are not for your personally, I respect that completely. It is truly quality versus quantity of life for me as well. May you ha ve the quality of life you deserve. I will keep you in my prayers. God is strange in that he takes care of all of us in the ways that we need, not the way wewant, he provides us with what we need.

[MsAmyM]

thank you all for your responses!