When I had my second Covid vaccine in May, I had immediate and dramatic side-effects: an enlarged lymph node the size of a tennis ball under my vaccinated arm, vomiting and diarrhoea. These side-effects disappeared in time, but the worst side-effect was neutropenia: my neutrophil count fell from over 4 to 0.06.
I was diagnosed with CLL in March 2019 and until my second Covid vaccination in May of this year, my condition had been stable and my neutrophil count always above 4.
Since May the highest my neutrophil count has got to without any treatment is 0.43. However, it has not remained at this level, falling back down again to 0.06. I am currently recovering from a 3-week stay in hospital to operate on and treat a perianal abscess (3 operations!), skin issues and abscesses being a common side-effect of neutropenia. To help me recover from the infection I am on a 6-week course of GCSF injections twice a week.
Has anyone else become neutropenic as a result of the Covid vaccinations? If so, what treatment have you received? Have you managed to recover from neutropenia and return to a non-neutropenic state?
As I have been severely neutropenic for 6 months now, I am losing hope of ever returning to my non-neutropenic former self.
Jackie
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JackieMcC
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Jackie, neutropenia can develop with CLL due to bone marrow infiltration and or an autoimmune complication of CLL. It's what led to my CLL being diagnosed. Interestingly, it is also a rare complication of a COVID-19 infection.
"In addition, some adverse events observed throughout the clinical trials are unique to specific vaccines, such as neutropenia with the AstraZeneca/Oxford vaccine."
My neutropenia improved during treatment, about the time I began obinutuzumab. I haven't needed a G-CSF shot in nearly 18 months, when at my worst, I was needing them daily.
Thanks for this information Neil. I’m glad to hear your neutropenia has improved. I think the next step for me will be a bone marrow biopsy - I expect you have had one at some stage. I’m extremely nervous of it.
It's good to hear that you are expecting a bone marrow biopsy to investigate why your neutropenia has developed. Neutrophils can also be destroyed in an autoimmune complication from CLL, but it is very rare.
I've had two bone marrow biopsies, but thankfully in Australia, it's standard practice to do them under light sedation, so you aren't aware of the procedure. I was tender for a while after both, with the tenderness more pronounced with the first one. From all the shared experiences here, the degree of discomfort really does depend on the skill of the person doing the sampling.
Thanks Neil - I am going to try and have some hypnotherapy to help deal with my fear of the biopsy, if I can. I wish they sedated patients here in the UK.Jackie
Hi JackieMcC, I had only topical numbing with lidocaine for my BMB. I utilized a similar deep breathing technique that is used in Lamaze for child birth. My Biopsy was difficult to perform due to high infiltration, but the breathing relaxed me and gave me something to focus on while they were performing the test. The practitioner told me that she thought I had fallen asleep because my breathing was so deep and regular. I was relaxed, but was definitely not asleep. Try to find something that works for you.
I haven't had neutropenia, just wanting to express sympathy for your situation. Sounds like a terrible reaction to the vaccine, Jackie, especially the abscess. I wish you a speedy recovery from that, and hope that your neutrophils will creep upwards again. If you eventually pluck up the courage to get a 3rd vaccine shot, no doubt you'll be able to get a different vaccine by then. Best of luck! Cheers. -Jim.
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