The Light at the End of 2020
Here it is, the end of 2020, and what a year it has been. After so many dark and worrisome days in this pandemic, it is quite a relief to see a light at the end of the tunnel. I am overjoyed that COVID-19 vaccinations have begun in the U.S.
I have been self-quarantining since mid-March, mostly only going out for doctors’ appointments. In July, I tested the waters to see if I could handle going out in public. I was very disappointed to find that there were far too many people not wearing masks properly, or at all, and not social distancing. So, I have not ventured out since then.
The darkness for me reached its peak in June. I was horribly depressed. My employer was cutting my position, so I was going to lose my job at the end of the year. I had just lost my sweet cat, Leo, who I’d had since 2004. I was in a rut, basically only eating, working (remotely, thankfully), and sleeping.
Thankfully, I slapped myself out of it — figuratively, of course — and started making some big changes. I started dieting and exercising (I’ve lost 35 pounds), I got more involved in online activities and chat groups so I could be social, and I updated my résumé and set out to find a new job (I found one in October). I also was given the opportunity to write this column.
Then, to top all of that off, I saw the news of a COVID-19 vaccine. Not only that it exists, but also that it is a vaccine I can take. Due to my condition, granulomatosis with polyangiitis, I cannot take a live vaccine. None of the COVID-19 vaccines being developed are live, and I am thrilled about that.
I know I am not first in line by any means, and that is just fine with me. I work remotely, and after making those big changes in my life this year, my mental health is fine again. Healthcare workers and other essential personnel need to be first, with good reason. What’s another couple of months or more? I will gladly wait. Just knowing that there is a vaccine will keep me going.
I do look forward to the day when I can go out shopping again or even dine in at a restaurant. That seems so trivial in light of the circumstances these days, but I really do miss doing that. I am relieved to know that there will be a way for me to protect myself that is not as dependent on others.
I know I have been very lucky during this pandemic, and I hope to continue to be so until we win the war against COVID-19. It is devastating to know that this vaccine is too late for so many people. My heart breaks every day for the lives lost, and the lives forever impacted by tragedy or the long-term effects of the virus.
I am glad 2020 is wrapping up with some positive news. We all need it, and I am grateful for it. I hope the new year brings new hope. Cheers to 2021!
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Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
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Comments
Lori Drozd
Thanks Sandra for uplifting article. Same diagnosis since 2006 with other issues. Truly blessed to have Cleveland clinic for treatment.I only wish cdc and health department would vaccinate the high risk compromised patients asap. Quarantined grandma, mom and wife feeling incarcerated.
Marie Sookra
Thanks for sharing such positive news. I was diagnosed with Wegener's in 2009.
I get very ill with the flu shot and I'm a bit concerned about my reaction to the vaccine.
Christian jones
So is the vaccine safe for people with GPA?
Jo Ann Landon
I also have GPA. Struggling since 2003 with systemic arthritis, then since 2017 a cascade of most of the GPA symptoms. I feel real sorry for all of us. This is not a good time to need ongoing medications and doctor appointments. However I have not made decisions out of fear. As mental health is more important than a few more years, I have not spent the last few months in isolation. My health is not dependent on other people’s compliance to orders about masks, social distancing or “dead” vaccines.
We vaculitis folks are strong mentally, or we wouldn’t still be here after 17 years, but let us allow everyone the right to decide for themselves how to conduct themselves. “A dying person is not afraid of anything”. As for me, a person on immunosuppressant drugs, please just live today the best you can and stop telling other people to give up their freedom of oxygen and social activities because I might get sicker and pass a little earlier. I know I am in the minority in my views butI am grateful to have the chance of sharing one GPA sufferer’s choice.
Pam
Hate to be Debbie downer but Cdc info I read said” ppl with bleeding disorders should not get covid 19 vaccine. I am 61 have had wegners since I was 38. My symptoms are extreme exhaustion an bleeding lungs. This is controlled but I will not take a chance in creating an event with a vaccine.
TIFFANY VICKERY
Hi . I'm tiff. I was diagnosed with Wegeners Granulomatosis polyangitis with associated
VASCULITIS about 4 years ago now. I was undiagnosed for many years and finally diagnosed after being admitted to hospital with raising VASCULITIS n my left foot becoming necrotic with ulcerated legs. I was on plasma exchanges and blood transfusions after renal failure and having dialysis daily. I somehow survived against all odds with prior diagnosis of Ana positive And oedema and PCOS and hypothyroidism and asthma and rheumatics and degenerative bone disease n VASCULITIS. This included anxiety stress depression ulcers and so forth. I'm very concerned in view of the latest news about variant mutants on the immune system etc as to whether I should be having the covid19 vaccine. I'm registered disabled and only 47 years old. Please can you advise. I am deemed extremely clinically vulnerable.Thank you so much.
BIRVA PATEL
Have you been vaccinated yet? If so, please share your experience. My mother who was diagnosed in 2019 is getting the first dose in March and I am very concerned.
Sandra Ross
Hello. Unfortunately, I have not been vaccinated yet. I plan on writing about it when it happens, but it will not be before March.
Helen Sjoberg
I would really appreciate if you could also cover some general information and recommendation for MPA Vasculitis patients who are NOT on immunosuppressive drugs (got off Rituximab in 2018. Before that I've had 2 relapses). My concern with a vaccine is that - my immune system being very sensitive and that it easily reacts to anything, "normal things" as being "foreign" - my immune system will react to the vaccine as being "foreign" and that my immune system will go haywire and attack not only my kidneys but also other organs. I do realize that the virus could potentially be equally dangerous for me (actually causing autoimmune response in the body), but with no information so far on those of us who are NOT on immunossuppressive medication it feels like I'm stuck between a rock and a hard place... or is there now data and information enough to generally recommend NON- immunosuppressive MPA patients to get the vaccine and in that case which one is the preferred - Pfizer or Astra Seneca type?
Thanks very much! Kind regards, Helen
Michael Black
I realize that everyone is jockeying for the front of the vaccine line, but but going just by oldest leaves out a lot.
My GPA kicked in almost exactly 2 years ago (I was 59), I never got back to normal before the Pandemic hit. We may have a rare disease, but I gather lots of people have problems with their immune system. The expensive drug to keep it contained apparently makes me more vulnerable.
If I can't get vaccinated in early May, it won't happen till November, a window when the drug won't cancel the vaccine
Michael Smith
Did you get the vaccine?? I have GPA and in my early 70's and have been told I can take the vaccine, but am hesitant. Have you taken the vaccine and if so did you have side effects?
Sandra Ross
Hello! I just got my first dose, and the only side effect I had was a sore arm. I got the Pfizer vaccine, and I will get the second dose in three weeks.
michael austin
Hello,
Hope everyone doing well.
Diagnosed WG in 2006 and no problems since.
I did get first dose of the Pfizer vaccine and no problems.
Mike
Michael Hagans
Hello.. I just made an appointment to get my first dose of Pfizer vaccine on wed.march 31st. While I was researching weather or not I made a good decision to get the vaccine, I came across your column. I too was diagnosed with Wegners at age 19. I was in my first year of college. I took Cytoxan for 2 and 1/2 years also. I read all of your columns, and I can relate to most everything you wrote. I have never spoken or corresponded to another person who shares this condition, but felt compelled to write to you. I was diagnosed in 1981... forty years ago. Despite the challenges of the past year, life is pretty good as I head toward 60. I wish the same for you as you head for 60 and beyond.
Sandra Ross
I have never encountered anyone who went through the exact same thing as I did. I am very glad to hear that life is going well for you as you near 60. Knowing that certainly does help me and my outlook with this condition. Thank you!
Had I known...
I really appreciate this page. Thank you for all of the sharing. I was diagnosed 2018 at age 35. I am still actively on rituximab every 6 months. I like most on this blog am waiting for the COVID-19 my issue is I didn't do much research before my last infusion in Feb 2021. I found out after the fact that If I was to get the vaccine I have to wait until the end of my dosing cycle (which will be July. August time frame) so crappy being I got the call to get scheduled and had to decline being the Vaccine would not be effective due to the recent infusion. I am sharing this information for anyone in the same boat. Do you research and talk to your doctor if you want the vaccine but are in a series or infusions.
Hella Dresdner
Just for information.
I have been in remission since 2006 without meds. I am extremely lucky. I received the first dose of the pfizer vaccine two weeks ago.
It set off a string of side effects and I am now concerned about the second dose.
The damage from GPA left me with Trigeminal Neuralgia and some hearing loss. Stopped my 20 year career as a Pilot. My TN had been managed without meds since 2012.
Pfizer doze one side effects:
Nausea
Shivers
Slight fever
Body aches especially lower back.
Neurological pain in one leg.
Several strong attacks of TN day 2.
Moderate to severe fatique.
BUT! I am almost back to normal and the TN was only bad for one day. I believe getting the virus would have brought me out of remission or would have killed me. So I am thankful for the vaccine.
Now I am slightly concerned about the second dose ...
Stay safe!
Shirley Lindemann
I am very thankful to have come across your article (and am looking forward to find and read more)
My diagnosis was done in 2016 when I had server Hemoptysis. Looking back I was very sick with Wegener's Granulomatosis already about 3 years before that and had more and more massive lung bleeding as well as ear and nose bleedings. After 6 months of cyclophosphamide chemotherapy my body seemed to had calmed down and the bleedings had stopped. I am off all medications and try to keep my immune system under control by a strict diet and water fasting for between 4 to 7 days straight every months. But I am supposed to get my covid vaccination now and I am seriously scared how it will effect my health situation. If any of you have more information on how your body has reacted to any covid vaccination please share. THANK YOU !!
Ahmed
I have had my worries for my brother, since he has the same disease, he was infected by covid-19 and was in ICU for 3 months, after that took him one month to walk around, I had done some research finding Pfizer to be more suitable for his condition, both my father and my brother have this disease.
I'm glad I fond ur article, this gives me more confidents this will help him, I do not recommend walking without a mask even after being vaccinated, it's not a pretty thing for those who has GPA to be infected with covid-19.
enough I lost a mother thanks to covid-19...
James
I was diagnosed with Wegener's granulomatosis in 1995, and have been in remission since around 2003. I was diagnosed as having Covid following a test on Dec 31, 2020. I had very minimal symptoms and wondered if it was a false positive. An antibodies test three months later confirmed I did actually have it, and I still had some antibodies in mid July 2021. I am concerned about getting the vaccine and risking having my GPA flare up. But, even though symptoms the first time around with Covid were minimal, I'm concerned about how a second bout would go. Has anyone gotten any info either way on the risks of a flare up out of remission?
Maria Trifonova
Hello :) My father was diagnosed 9 years ago with Wegener's granulomatosis and we are considering the covid-19 vaccination. Have you found any new information if it is safe? Thank you!
Karen smith
Hi sandy, I can see here you had your first Pfizer shot was your reaction after the second and on going since? I believe my GPA newly diagnosed after double Pfizer, was in fact caused by the vaccine. I have a long list of autoimmune conditions, what’s another to the list thanks in advance.
Ronald Thompson
I am currently 30 and was diagnosed with Wegners 3 years ago when I was active duty military. I have not done anything for my Wegners condition since I was notified about it because the Military has denied any involvement with it from day one. I have 45 days left in the military since they are kicking me out due to me refusing the vaccine (which I refuse to get due to the condition). Hopefully I can get answers and started down the path of some normalcy once I am out.