MAC and getting the COVID vaccine

Posted by cmi @cmi, Jan 6, 2021

This is a wonderful team...like a real cooperativa family...we are a band of patients that strategize together...amazing. All good dialogue for “rits”...I also believe the CAT scan would be a good step...it arms the doctor with evidence.

I have another question for the group...what are the feelings on “us” being candidates for the Covid vaccine? Has anyone yet vaccinated? I see my ID doc this afternoon...it is one of my concerns. Any feedback appreciated.
Regina

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@bluesplashgirl

My good friend died from covid in August. Just a few more months and he may have been helped by the vaccine. I have heard of several people reacting in different ways to the different vaccines; headache, nausea, aches, fever, exhaustions, but they always live to tell. How lucky are we to live in such an age that gallant women and men are willing to work around the clock for a year and more to find a vaccine for this very mysterious disease? The tired and beaten up health workers that continue to throw themselves into the ring everyday to care for the sick... people they don't even know. I am amazed and humbled from their enormity of character. I am so sad that I lost my good friend, Martin C. Warner, and for him, I dedicate my vaccine shots I receive starting next week. If I get sick, I will know that they are working and I will feel better in a few days. How lucky for me.... Miss you Marty.

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So sorry for your loss.
My niece's sister in law, an er nurse, died of covid just before Christmas. She treated covid patients. Just a few weeks after she was gone, front line health care workers were being vaccinated. Terrible to think about.

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@bluesplashgirl

My good friend died from covid in August. Just a few more months and he may have been helped by the vaccine. I have heard of several people reacting in different ways to the different vaccines; headache, nausea, aches, fever, exhaustions, but they always live to tell. How lucky are we to live in such an age that gallant women and men are willing to work around the clock for a year and more to find a vaccine for this very mysterious disease? The tired and beaten up health workers that continue to throw themselves into the ring everyday to care for the sick... people they don't even know. I am amazed and humbled from their enormity of character. I am so sad that I lost my good friend, Martin C. Warner, and for him, I dedicate my vaccine shots I receive starting next week. If I get sick, I will know that they are working and I will feel better in a few days. How lucky for me.... Miss you Marty.

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Amen.

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@sueinmn

@rits & @irene5 Here is the response I received from my go-to RN on the vaccine - she works in the ER and on the TeleMed & Covid lines for a major health care provider, and consults directly with the Covid specialists there. This is how they respond to vaccine questions:

"Some people don't have strong immune response to 1st or 2nd dose or both. Some people have strong response to 1st and not 2nd. Some people have strong response to 2nd and not first. Some people have strong reaction to both. The level of immune reaction that you can feel/see/measure has no impact on the vaccine's ability to protect you. Your body has received the info and build the antibodies.

Being tested for antibodies is not recommended. The test is expensive, and no medical decisions will be made from having it done no matter what the result is so most insurance companies will not pay for it."

That said, the vaccine manufacturers are also monitoring the early recipients to see when the immune response and/or antibodies begin to fade. That will be the key to determining if or when Covid vaccine boosters will be recommended, and whether they will need to "tweak" their formula to cover virus variants.

Based on all of the above, we need to realize that the world is not a perfect place, there is no perfect vaccine, nor any permanent preventative measure against all illness, disease and risk. I wear my seat belt because it reduces my risk of severe injury or death in a car accident, I clean, store & cook my food properly to reduce the risk of food-borne illness, I exercise to keep my body as strong as possible, I take prescribed meds to reduce the risk of my diseases progressing, I get preventative health screenings to reduce my risk of dying from cancer, and I get vaccines to reduce my risk of severe illness or death from infections. Is my life 100% risk free? No, but I still plan to live well & enjoy it.

Sue

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As always Sue, thanks for all your useful information and for caring. I am at a bad place medically with both my copd and my digestion causing serious problems since January. My qol is pretty low and I had hoped that with vaccination I would be able to put covid fear away. Of course everything is a risk. I guess I had hoped that the vaccine would do more to eliminate the risk for me than I now worry that it doesn't. I need to before careful than I have been for the last week or two. I can't venture out but I have allowed someone into my safe sanctuary.

It's still scary!

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@rits

Or he's bad to go like me. Joking! Thanks.

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Hi Sue & everyone. 2 things: I agree, this is not heaven, but we are still blessed in innumerable ways. I have PMR, am on 10mg Prednisone, will start long term 1/2 pill in 3 days. Tip: I use store brand liquid acetaminophen (Tylenol) in the morning, when PMR is worst, and at bedtime. I turn age 80 this year, have had asthma since age 2, have never smoked or used alcohol. I can’t get the Covid vaccine due to 2 episodes of anaphylaxis, reactions to doxycycline (Lyme disease) and blood thinners (but the ambulance trips were fun!). I had one flu shot about 20 years ago, have not had another, and never get the flu anyway. Perhaps my inhaled asthma meds (albuterol) 4 times per day are the reason? I’ve been vegetarian since 2010, eat no fish/seafood/chicken/beef but do eat eggs & dairy. Except for morning PMR pain until the pred kicks in, I have enough energy for 3 people. Maybe it’s because of my daily dose of dark chocolate? Don’t know if my experiences will be helpful to you fellow PMR pals, just sharing. 😊

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@fdixon63

Hi Sue, I had my first Pfizer shot on the 17th of April. Day 2, felt fine. Day 3, In AM felt fatigued which got worse. Also had pain across upper back. Day 4 Felt fine. Day 5 - After getting up experienced some mild confusion, slight dizziness, and some fatigue. After lunch more fatigue, dizziness, queasiness, fog brain, odd feeling in my middle chest. (I have A-fib) Just sat in the recliner for about 2 hours. Day 7 – Felt OK in the morning but after lunch, felt pretty tired the rest of the afternoon. Also felt chilled (took Tylenol) and was unsteady walking. Day 8 - My lichen planus--an autoimmune condition--(which had been doing better) flared and gums bled and a rash appeared across my upper back. That is also a symptom of lichen planus. Yesterday and today I feel OK, but having to put topical ointment on my lichen planus places.
Because of these side effects I began to read about the effectiveness after the first shot. For the last couple of days I've read about that subject on healthline, scitechdaily and businessinsider. They provide the efficacy numbers after 15-21 days of receiving the first shot. It was really impressive. What is not known is ,"does the efficacy fade away quickly if we don't get the 2nd shot?" Those studies have not been done--that I could find.
I guess my concern is, if the second shot is more "potent" what reaction can I expect. As I have A-fib, MAC, bronchiectasis and lichen planus, is the side effects potential harmful. Gosh. Who knows anyway. The reactions or non reactions are all over the place. Just hoping you have a source that may shed some light on this question. I've been batting this around for 3-4 days. Will need to decide by April 7th. Thanks so much Sue.

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Try to look at the Pfizer testing to see if there is any info - they were originally doing some comparisons between one and two doses, and found much better immunity with a second dose. I don't know if they continued that test or abandoned it.
Sue

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@bluesplashgirl

You're so kind for saying. Thank you Toni.

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You're so welcome, Carolyn. Toni

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@barbq

Hi Sue & everyone. 2 things: I agree, this is not heaven, but we are still blessed in innumerable ways. I have PMR, am on 10mg Prednisone, will start long term 1/2 pill in 3 days. Tip: I use store brand liquid acetaminophen (Tylenol) in the morning, when PMR is worst, and at bedtime. I turn age 80 this year, have had asthma since age 2, have never smoked or used alcohol. I can’t get the Covid vaccine due to 2 episodes of anaphylaxis, reactions to doxycycline (Lyme disease) and blood thinners (but the ambulance trips were fun!). I had one flu shot about 20 years ago, have not had another, and never get the flu anyway. Perhaps my inhaled asthma meds (albuterol) 4 times per day are the reason? I’ve been vegetarian since 2010, eat no fish/seafood/chicken/beef but do eat eggs & dairy. Except for morning PMR pain until the pred kicks in, I have enough energy for 3 people. Maybe it’s because of my daily dose of dark chocolate? Don’t know if my experiences will be helpful to you fellow PMR pals, just sharing. 😊

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Yeah YOU! Love the spirit!

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I had a scary reaction to my first and only Pfizer vaccine in late August. It didn't start until later in the day, went all night, then started lessening during the following day. My heart was going BOOM! BOOM! BOOM! really hard and skipping every 3 or 4 beats. The odd thing is that I had exactly that reaction earlier in the summer when I found out that I was allergic to tart cherries. I have several other allergies, including shellfish, latex, and some pollens. I'm trying to think of alternative ways I can get immunized. Wasn't crazy about what I read about the J&J one. If I could I would try the children's one, which is a third the dose of the regular adult Pfizer one. as a test.

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@egayle187

@cmi... I am looking forward to the vaccine. I am not afraid of the scientific breakthrough that led to these new types of vaccines. The old technique using eggs was problematic to many people and takes a long time to prepare. Ask yourself, "what am I afraid of?" If you've had extreme allergic reactions, then do not take it yet. The danger of COVID is far more severe than the side effects for those of us with lung problems.

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October 8th I’ll be 13 weeks beyond the date of my first two shots. Convinced this stuff can kill people, even those who have “good” lungs, I’ll be be there with bells on for the “booster.”

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I agree with Thumperguy. I was early in line to get my first and second shots and will get the booster when it is available to me.

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