Aplastic Anemia and vaccine influences

Hello @aeft, Welcome to Mayo Clinic Connect. I can appreciate your concern for having had a Matched Unrelated Donor (MUD) stem cell transplant and not wanting to take any chances with a relapse or recurrence of the original Aplastic Anemia, which you feel may have been caused by the covid vaccine.
There have been some cases reported where there has been a link between the vaccine and people developing Aplastic Anemia. It would be interesting to see the possible correlation between developing the disease within patients who have the Rag 1 mutation, if this was possibly a contributing factor.

You were very fortunate to have the bone marrow transplant which allows your body to get a fresh start with a new immune system. Your question about whether having the Rag 1 mutation will set you up for this to happen again, is really a complex question without a lot of research available to give you a definitive answer.

But nevertheless, whether or not to receive another mRNA delivered vaccine would be something to discuss with your transplant doctors. There is another vaccine on the market called Novavax which isn’t a mRNA product.

Have you discussed your research with the possible correlation of the Rag1 mutation and the vaccine with your doctor?

I am being treated for aplastic anemia and get blood and platelets every week. The doctor isn’t positive this is my problem , I have some symptoms of this but not enough to say this is my problem. Any suggestions?? My platelets have dropped as low as 7 and as high as 32 my blood is 10 .4 to 8.2. Any suggestions ???

I also have aplastic anemia after receiving the Maderna covid vaccine in january 2021 and booster in December 2021.
I am currently in the hospital undergoing the ATGAM (equine) treatment. Today is my second treatment of four. I won't know if it is going to work for 3-6 months.
I also get platelet transfusions and blood transfusions.
I had two bone marrow aspiration and biopsies.
I have no blasts, or mutations.
They say I'm too old (75) to get the stem cell transplant.
So I hope the treatment will put me in remission.

Have you had a bone marrow biopsy yet? Aplastic Anemia ranges in severity. The biopsy really is key to diagnosis. Take the first step . It can be scary but definitely worth it.

Thank you for sharing your vaccine history. What are you hearing from your doctors about continuing COVID vaccines?
I have read about positive outcomes from the Equine ATG treatment. Wishing you success 🙏.
Did you experience prior autoimmune issues prior to the Aplastic Anemia diagnosis??

Thanks for reply. Yes I’m considering the Novavax. However my doctors don’t seem to share my vaccine concern. Transplant doctors do not have experience with the Rag1 mutation since it so rare.
There is also the question Of whether I still have the mutation post transplant. My recent Chimerism is 98%. I cannot see the hospital genetics doctor until November 2023. I am searching the literature for any reference to heterozygous Rag 1 mutation and stem cell transplant or vaccines and have found nothing yet. Any suggestions?

I really don’t have any suggestions except the possibility of having another genetic test run to see if you still carry the Rag1 mutation. From my understanding, when we get an allogenic stem cell transplant, the goal is to give us a fresh start with a new immune system.
With my AML, I had 3 mutations which are no longer visible and haven’t returned after 3.5 years. Or, if they have, my new immune system has wiped them out before they got a foothold.
However, my chimerism is at 100%. With yours being 98% I’m not sure how much of a threat that 2 % is with containing the Rag 1 mutation.
Covid is so new yet that I’m guessing there isn’t much information out there for you to find, especially with your rare mutation. The data for us is also limited on how we will even respond to our routine vaccinations.
You’re still fairly new in your transplant so your immunity isn’t as strong as it will be ‘when you’re an adult’ in about 18 to 24 months. But even then, from my understanding, the new immune systems will never be as robust as our original.

Maybe your doctors aren’t as concerned because they feel you no longer have that mutated gene… If I run across any information I’ll let you know! Keep me posted on what you decide to do, ok?

Yes, two BMB one locally one at Mayo.

I can get no Vaccines of any kind at this time. But will not ever get another unproven Vaccine.
Aplastic anemia and MDS and other illnesses have been around long before Covid but
the correlation of how the Vaccine works on the T &B cells can certainly have a direct effect on the bone marrow .
I had noissues before the Covid vaccine. I have my Medical records showing all my blood work for 6 years. 2021 platelet count 325K to 395K avg each year before the Vaccine. All other blood tests were perfect. Got Booster in Dec 2021, By June 1st Platelet count 88K and has fallen since. I now get transfusions to keep me above 10K. CBC tested on Mon & Thursday each week.
Home today from ATGAM (equine) procedure (5days in Hospital)

Thank you for sharing your history post BMT. Congratulations on 3.5 years of a healthy new immune system. I'm wondering when you began with vaccinations, including childhood vaccines and whether you have chosen to continue flu, pneumonia, and Covid vaccines post-transplant? As you suggest there is limited data on how we will respond and there are so many variables to consider. I recently received the flu vaccine.
I will keep you posted.