Aplastic Anemia and vaccine influences

Posted by aeft @aeft, Feb 1, 2023

As a recent (12 mo) MUD stem cell transplant recipient I am faced with making a decision on pursuing a COVId vaccine. Prior to diagnosis with severe Aplastic Anemia in November 2021 , I had a mRNA vaccine series in June 2021.
During the last year I have heard from individuals including MDs , anecdotal concerns about the rise in Aplastic Anemia post COVId vaccines, particularly mRNA .
I also recently learned I have a recessive genetic pathology, a heterozygous Ragg 1 gene.
There appears to be growing anecdotal concern regarding the impacts of this on immune system functioning and specific vaccine response .
I am hoping this community may have members who can share similar experiences or concerns. I am also seeking MDs with specific expertise re rare Ragg 1 pathology and Aplastic Anemia and the influence of vaccines. Thank you .

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@rockitman

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)

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I appreciate your candor. Given the lack of data in this area personal history is a vital part of uncovering potential risks. Did your treating hospital perform any extended gene analysis when your bone marrow studies were done? Mine produced more questions that may or may not impact treatment plans. It did provide an opportunity to participate in further clinical study that may someday assist others faced with these health challenges.

Hoping you respond well to the ATG treatments.

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@rockitman

Yes, two BMB one locally one at Mayo.

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Are you a candidate for a bone marrow transplant or have your doctors discussed possible alternate immune suppression treatment? Having an Extended Gene analysis also might provide insight if not already done.

Have you been vaccinated for COVID or had COVID at all over the past few years?

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@aeft

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.

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Our post-BMT immunization schedule generally commences after the first year. In my case it was 1yr 4mo. At that point I had the first round of 9 vaccines in 6 injections October 2020. 3 months later, Jan 21 the same were repeated and finalized in July 21. Oct 21 there was one more with the addition of the PCV23 pneumonia shot.
Along with those, I’ve had all of the Covid vaccinations and boosters, as well as influenza Quadrivalent annual vaccines. No issues with any of them except for both arms feeling like I’d been pummeled with baseball bats for a few days after. Ice packs helped the most.
All of your vaccines from infancy to adulthood will be covered. The only one you probably won’t receive is the MMR which contains live virus so that one has to wait. I’m guessing that one will be discussed with my transplant doctor at my visit in April.
You’re over the one year point if I remember. When’s your next followup?

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@aeft

I appreciate your candor. Given the lack of data in this area personal history is a vital part of uncovering potential risks. Did your treating hospital perform any extended gene analysis when your bone marrow studies were done? Mine produced more questions that may or may not impact treatment plans. It did provide an opportunity to participate in further clinical study that may someday assist others faced with these health challenges.

Hoping you respond well to the ATG treatments.

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Yes, I had the extended gene analysis, 3 total gene analysis done, two short & one 94 gene analysis with No mutations, also three Chromosome tests. No markers for Cancer.
Just completed the ATGAM treatment at Moffitt Cancer Ctr. Tampa Fl., this week. Takes 3-6 months to see if it will work for a remission.

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@aeft

Are you a candidate for a bone marrow transplant or have your doctors discussed possible alternate immune suppression treatment? Having an Extended Gene analysis also might provide insight if not already done.

Have you been vaccinated for COVID or had COVID at all over the past few years?

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I am too old (75) Drs say I would most likely not survive the Bone Marrow transplant.
This all started after my Covid Vaccine & Booster shot (Maderna).
I just finished the Treatment for Aplastic Anemia, ATGAM treatment.
Will not know anything for 3-6 months. Hopefullu sooner but Drs say be patient, this treatment takes time. Meanwhile I take Promacta, Prednisone, Cyclosporine and two anti biotics due to low WBC, RBC and very low platelets (7-40 avg.)

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@rockitman

I am too old (75) Drs say I would most likely not survive the Bone Marrow transplant.
This all started after my Covid Vaccine & Booster shot (Maderna).
I just finished the Treatment for Aplastic Anemia, ATGAM treatment.
Will not know anything for 3-6 months. Hopefullu sooner but Drs say be patient, this treatment takes time. Meanwhile I take Promacta, Prednisone, Cyclosporine and two anti biotics due to low WBC, RBC and very low platelets (7-40 avg.)

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@rockitman, can you get a second opinion on that verdict of not having a bone marrow transplant? An acquaintance I’m mentoring through my local Cancer center had his BMT at the age of 75, 6 months ago. He’s doing amazingly well.
He had acute myeloid leukemia, which is a very aggressive disease and his only option for a longevity was a BMT.
If you have no other co-morbidities and are in otherwise good health it would really be worth asking. What do you have to lose??

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Wow , yes if my treatments don't work, I'll definitely talk to another Dr. Thank you for the information. I am in extremely good health with no other issues.
Thanks again

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@loribmt

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?

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Hello. I have aplastic anemia post COVID vaccine. I was healthy before all this happened. I got my booster end of September 2021. Blood counts were down as of my blood work Jan 2022. It took awhile to diagnose. I had a bone marrow biopsy in feb 2022, came back fine. I was treated with prednisone which did nothing. I had another bone marrow biopsy in may which came back saying I had PNH. My doctor was not convinced this was the case. I went for a third opinion in august of 2022 and this doctor said I have aplastic anemia and it was evident back in may. I received my ATG treatment in sept 2022 and am on a treatment consisting of cyclosporine and promacta. I am currently 6 months transfusion free. My numbers are still improving and are much better than before. I am grateful for the excellent medical care I received from Rush university in Chicago IL. I was a healthy individual before I received the COVID vaccine, I was looking forward to turning 40 and all the new life experiences I was going to have and then this happened. I can say I’m doing much better and I’m so grateful. I believe this COVID vaccine has done more harm than good. I hope they can link this at some point . I have had a hard time getting people to believe me that this is what it’s from. No one can give me any answers. Like I said I was healthy before all of this took place. I’m just looking forward to some answers in the near future. I wish everyone who reads this who may have suffered like me be glad there is treatment and just hang in there and pray, lean on your family and you can get through anything.

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Hi. I’m sorry this happened. Very frustrating that Covid vaccine isn’t looked at seriously as a cause. There is a group in here that has iron deficiency anemia believed to be from Covid/vaccine. In your case, has it affected your iron/ferritin levels? When you say your blood count was affected, your wbc and plts are also low?

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@debdebkrz

Hi. I’m sorry this happened. Very frustrating that Covid vaccine isn’t looked at seriously as a cause. There is a group in here that has iron deficiency anemia believed to be from Covid/vaccine. In your case, has it affected your iron/ferritin levels? When you say your blood count was affected, your wbc and plts are also low?

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I agree the Covid vaccine has caused a lot of harm but it is hard to get Drs. to agree. My husband and I were very healthy until we took the vaccine. A month after my third shot I had a PE in both lungs, a DVT in my leg, and was diagnosed with celiac disease. My husband has been diagnosed with multiple myeloma. We should have taken our chances with getting Covid.

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