Has anyone with AIHA received the COVID vaccine? Reactions?
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I made the decision not to receive the COVID vaccine after reading that anymore with autoimmune or lung issues should not get the vaccine. FREE mRNA can signal danger to your immune system and drive inflammatory diseases. The mRNA is new technology, and they do not know what the short term or long term effects will be. Everyone has to decide for themselves what they think is best for them, and I have decided that the risks far outweighs the benefits of the vaccine for me. Kathryn
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I wish I would have known about it before the vaccine. I could have made a better decision honestly. Now I have to figure out what to do now.
Hello @catparker5, Welcome to Connect. So sorry to hear you had the bad reaction to the vaccine. It does seem a little strange that the reaction didn't occur until several months after the vaccine. Here's some information I found that discusses the topic:
A Case of Autoimmune Hemolytic Anemia Following COVID-19 Messenger Ribonucleic Acid Vaccination: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8200779/
Did you report the side effects to the Vaccine Adverse Event Reporting System (VAERS): https://vaers.hhs.gov/?
Thanks for the reply. I would say it mostly occurred within a month. I had some other medical issues going on during that time and was not getting any sleep so may have thought that was the issue, but its not. I have not reported anything, I just started doing research when my Dr could not figure out anything and just found articles on this and the connect page. I sure will report it. Any suggestions on where to start medical wise for treatment? I am at a loss on what to do.
I received the second dose of the vaccine the end of Feb. In early summer my mouth suddenly went completely dry and my knees and hands started hurting. I was recently diagnosed with RA. I know it was several months after the vaccine but I just wonder if I had some joint pain but just blamed it on old age. I have been wondering if the vaccine had anything to do with it. The RA doctors group they referred me to has yet to contact me after 3 weeks.
@catparker5 – Where to start medical wise is a good question. If it were an option and it was me, I think I woud seek help at a major teaching hospital or health facility like Mayo Clinic that uses a multidisplinary teamwork approach to healthcare and is patient centered. I would try and see if my doctor could provide a referral to a hematologist as a start. Do you have a major health facility close to you?
Hello @seneca, Welcome. I know it's no fun waiting in pain for 3 weeks with no followup. Have you tried calling the RA doctors they referred you to? Is there a possibility you can get an appointment with a different rheumatologist?
I have had 2 neurological illness in my life. Meningitis when 11 and Guillian-barre at 50. I'm not afraid reoccurring of either of those per statistics, I'm afraid of what else can happen so I live, if you want to call it that, in total isolation. I hope you find help.
Hi @lee7766, Welcome. There is another active discussion you might want to join to share your experiences with Autoimmune Hemolytic Anemia — CLL complicated by autoimmune hemolytic anemia (AIHA): https://connect.mayoclinic.org/discussion/cll-complicated-by-aiha/
Did your doctor advise you not to get the vaccine?
No. I decided not to get it on my own. I also have APS, which causes my blood to clot abnormally.
Thanks for your discussion about immune diseases and the COVID shot. I have an extremely rare Immune disease that currently has NO CURE … with drugs you can stay in remission. It is MYASTHENIA GRAVIS – OCULAR and GENERALIZED. I asked doctors before I got the two Moderna shots in April and May 2021. They told me that Moderna Covid shot was safe … as it was a DEAD VIRUS SHOT … so I was safe …. as my immune system is TOAST … with over 2000 mg of CELLCEPT drugs daily. (I can not risk getting any infections … already had November 2020 in hospital with SEPTIC BURSITIS of left arm)
They said to avoid SHINGLES and other similar shots as they use live viruses. The doctor was less certain if MODERNA shots would keep me safe from the COVID. I did not have a bad reaction to the two shots …. but he did not know for certain if they would work on me either to protect me. But so far … I have not had a MYASTHENIA GRAVIS CRISIS or been to the hospital in 2021.
The doctors in my area were totally CLUELESS and never could diagnose my MYASTHENIA GRAVIS for eight long, suffering months …. and three of them were HOSPITAL NEUROLOGISTS. I was diagnosed by an intelligent floor nurse at the second hospital …. who recognized my MG symptoms … as she had other patients at her hospital that had the 8 or 9 symptoms of MYASTHENIA GRAVIS … like I did and all the doctors ignored my troubles and guessed wrong ……. NO ONE can have all your symptoms and only one disease.
I was weaned off HIGH DOSES of PREDNISONE for my Myasthenia Gravis and Acute Respiratory Failure on November 27th of 2020. It was nasty. It… also with prescribed STATIN drugs …. gave me MEDICALLY INDUCED DIABETES II … and I never had diabetes ever in all my years. My blood meter scores with PREDNISONE and STATINS were 350, 400, and off my meter HIGH. My doctor finally tapered me off and killed the INSULIN LANTUS shots a month ago …. that the hospitals forced me to take for the last 18 months. Also PREDNISONE gave me weight gain and aggravated ONSET INSOMNIA that Myasthenia Gravis gave me and still prevents me from falling asleep in a timely manner ..like everyone else. I have been off PREDNISONE for a year now …. and my blood meter numbers dumped to 110 and under … once PREDNISONE cleared out of my body …. but they still will not kill off my Rosuvastatin. that replaced Atorvastatin.
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