To vaccine or not to vaccine

[kbutton]

25 minutes ago, PeterPan said:

It's low enough that people are acting normal. Traffic is up when I drive each day into the big city and on weekends to shop. I think there's a general acceptance of the current numbers and a moving on. 

True, but that is not the same as actually being low. I like to be clear about this because people use many excuses to not be truthful with themselves.

[DoraBora]

29 minutes ago, Pam in CT said:

Re college mandates before vaccines come out of EUA

 

There's no knowing for sure how it would play out, but I personally doubt a court would uphold an exemption-free mandate under EUA.  Even though college is a choice/privilege etc.

I agree, and I appreciate that Rutgers is making this decision early on (before that May 1st decision date?), but I hate it that anyone is mandating it now.  I think it just adds fuel to the anti-vaccine fire for some folks.

[Pam in CT]

6 minutes ago, DoraBora said:

I agree, and I appreciate that Rutgers is making this decision early on (before that May 1st decision date?), but I hate it that anyone is mandating it now.  I think it just adds fuel to the anti-vaccine fire for some folks.

I can see that. Although otoh if the school is sure they want to mandate, it'd be irritating if they announced after deposits were in, or later in the summer. There's no timing that would NOT act as fuel for folks determined to find fuel, KWIM?

[kbutton]

27 minutes ago, DoraBora said:

Help me understand this.  I've seen so many people on this board dismiss the idea that someone died with Covid, not from Covid.  A person who had congestive heart failure/diabetes/cancer, etc., or who was just elderly and acquired Covid and died.  These same people seem to take the opposite tack on people who died following a vaccine (Well, he probably died as a result of... whatever).  

Btw, I know it can be difficult to read tone.  I'm not trying to be argumentative.  I really don't understand the difference, though it's probably obvious to everyone else. 🙃 

I'll take a stab. I appreciate your asking in a way that seems open.

First, I saw many of the early assertions of the with Covid vs. from Covid, and they were clearly from the same people and sources that very, very obvious conspiracy theories came from (including that people actually had flu or some other condition). It was asserted again later as a "This could be possible" way, sometimes far removed from the conspiracy theories, which then people turn into "Possible means probable" without thinking about how many people all around the world would have to be involved in unethical dealings to make it true. It was initially coupled with "So hospitals can get more money," and not in the way that indicates that Covid is more expensive to treat, so hospitals might be reimbursed more in the way that having a UTI go septic is more expensive to treat then a regular UTI that resolves with an antibiotic. (Most healthcare workers and systems are not out there fleecing the public.)

***ETA: I mention this first because information provenance is important--there have been articles out about people who disseminate conspiracy theories vs. amplifying them vs. consuming them, and that distinction is almost a timeline from what I've seen on social media among acquaintances. People who did not see the original stuff but are seeing amplification (especially when removed from the overtly crazy stuff), don't realize where it's coming from, and that gives it more credence in their mind. Like the story of Adam and Eve where Satan says something like, "Did God really say..."

People with heart failure, diabetes, and cancer are not all just sitting there vulnerable to death at any instant. They just aren't. Some are, but not all or even most. So, if they get Covid, they might be more likely to die than someone else who gets it, but that doesn't mean that Covid didn't kill them.

I think that Covid + pre-existing conditions equals death on a far wider scale than Vaccine + pre-existing condition because that's the case for other vaccines, including the yearly flu vaccine, so to me, the "with not of" argument, if it can be made for vaccination deaths, will prove to be too small to be significant. (Barring that, we'll have guidance on who is at higher risk, and it's very likely it will still be less risky to get a shot.) Also, I am not hearing about vaccination deaths so much in people who have pre-existing conditions--many of the assertions I am hearing are people who say they "know someone"/read about someone on the internet who was perfectly healthy, or the pre-existing condition is a guess because "they seemed so healthy, so there must've been a pre-existing condition," yet in neither case is anyone saying there was an investigation or autopsy. At least the people dying of Covid with a pre-existing condition, have confirmed diagnoses for both things. 

Edited March 28, 2021 by kbutton

[kbutton]

18 minutes ago, Pam in CT said:

I can see that. Although otoh if the school is sure they want to mandate, it'd be irritating if they announced after deposits were in, or later in the summer. There's no timing that would NOT act as fuel for folks determined to find fuel, KWIM?

If people are waiting for EUA to turn to permanent authorization, they might have a sudden bulge in the demand at the same time thousands of college kids need the shot to start school. There really is no perfect time even if people could be reassured.

[1234]

1 hour ago, kbutton said:

If you get data on shots for people with POTS, will you start a thread with a link? I know someone looking for this exact information. Even your experience would be helpful, but studies, recommendations from reputable doctors/organizations, etc. would help. I had hoped to find a statement from Dysautonomia International, but I haven't seen anything except about Covid itself.

 

It’s tough to find the information. The FB groups we’re in won’t even allow discussion about the vaccine right now due to things getting heated, but I’ll post if I find anything and I’ll definitely update what we decide and how it goes.

[Danae]

45 minutes ago, DoraBora said:

Help me understand this.  I've seen so many people on this board dismiss the idea that someone died with Covid, not from Covid.  A person who had congestive heart failure/diabetes/cancer, etc., or who was just elderly and acquired Covid and died.  These same people seem to take the opposite tack on people who died following a vaccine (Well, he probably died as a result of... whatever).  

Btw, I know it can be difficult to read tone.  I'm not trying to be argumentative.  I really don't understand the difference, though it's probably obvious to everyone else. 🙃 

For me it’s pretty simple.  Covid is known to cause death, and the mechanisms by which it does are known.  If someone has Covid and dies in the way that Covid is known to kill then Covid is a likely contributing factor to their death. This is supported by the fact that thousands more people are dying in the ways that Covid is known to kill than in past years.

Aside from rare immediate anaphylactic reactions there doesn’t seem to be any known mechanism by which vaccines are supposedly causing deaths.  And people don’t appear to be dying at a greater rate post vaccination than similar cohorts of unvaccinated people.  So absent either a known mechanism or a statistical increase it is unlikely that vaccines are causing deaths.
 

 

Edited March 28, 2021 by Danae

[DoraBora]

27 minutes ago, Pam in CT said:

I can see that. Although otoh if the school is sure they want to mandate, it'd be irritating if they announced after deposits were in, or later in the summer. There's no timing that would NOT act as fuel for folks determined to find fuel, KWIM?

You're probably right.  Sadly.

[ktgrok]

42 minutes ago, DoraBora said:

Help me understand this.  I've seen so many people on this board dismiss the idea that someone died with Covid, not from Covid.  A person who had congestive heart failure/diabetes/cancer, etc., or who was just elderly and acquired Covid and died.  These same people seem to take the opposite tack on people who died following a vaccine (Well, he probably died as a result of... whatever).  

Btw, I know it can be difficult to read tone.  I'm not trying to be argumentative.  I really don't understand the difference, though it's probably obvious to everyone else. 🙃 

Well, a lo of times it will be easy to see that the symptoms of Covid are present. So if someone has say, kidney disease, and gets Covid which is known to cause micro clotting, and has clotting, and the clotting further damages the kidney, it make total sense to say that the death was Covid related. 

Or if they have heart disease, and the breathing difficulties associated with Covid put even more strain on the heart, or they start having that coagulation/clotting problem seen in Covid and throw a clot that goes to the heart, etc etc. 

Saying the death was related to Covid in those cases is because Covid accelerated the death. 

And even if it wasn't a large factor in the death - most death certificates have room to put many factors. So all can be listed.

Now, If a person dies a week after a vaccine, but shows no signs of reaction, or autoimmune  complications associated with vaccine side effects, and was 85 yrs old with cancer...it's less than likely the vaccine killed them. I mean, if they ate macaroni and cheese 3 days before dying, we wouldn't say they died of macaroni complications unless they showed evidence of a reaction to the mac and cheese. Or if I take tyelnol, and die days from now - unless I show say liver issues, no reason to say the tylenol caused it. That's different from the Covid stuff because those people had symptoms or issues known to be related to covid. 

[Jann in TX]

On 3/27/2021 at 10:26 AM, Pawz4me said:

 

 My rheumatologist is like a million percent for getting the vaccine.

Ditto-- I have an autoimmune disorder and my rheumatologist was very serious about me getting vaccinated ASAP.

I had my 2nd shot today.

No side effects from first one and I feel fine so far today...

EDITED:-- bad vaccine reaction started a few hours after I posted this!  Bad chills, 101F fever, body aches and TERRIBLE headache at top of head... shot location became extra sensitive too... put me in bed for 15 hours!!!  Today (day 2) I'm feeling a bit better-- but still low grade fever with occasional chills- and I'm TIRED.

With the drug I'm taking for my AI disorder I cannot take a 'live' vaccine... the COVID vaccine is not 'live'.

Edited March 30, 2021 by Jann in TX

[PeterPan]

9 minutes ago, Jann in TX said:

Ditto-- I have an autoimmune disorder and my rheumatologist was very serious about me getting vaccinated ASAP.

I had my 2nd shot today.

No side effects from first one and I feel fine so far today...

With the drug I'm taking for my AI disorder I cannot take a 'live' vaccine... the COVID vaccine is not 'live'.

Can I just ask, did you have to alter your medication routine for your AI to be able to take the vaccine?

I thought I had read that's what they were doing. I guess I'm just trying to see what they're thinking is happening with inflammation and the vaccine and preexisting conditions that involve inflammation and the vaccine.

[katilac]

5 hours ago, DoraBora said:

Help me understand this.  I've seen so many people on this board dismiss the idea that someone died with Covid, not from Covid.  A person who had congestive heart failure/diabetes/cancer, etc., or who was just elderly and acquired Covid and died.  These same people seem to take the opposite tack on people who died following a vaccine (Well, he probably died as a result of... whatever).  

Btw, I know it can be difficult to read tone.  I'm not trying to be argumentative.  I really don't understand the difference, though it's probably obvious to everyone else. 🙃 

You've received some good info in other answers, and I just wanted to add a link to the CDC guidelines. I found it pretty interesting, as a lot of the process applies generally, not just to Covid specifically. It's longish, a couple of pages, but if you just want to see how it works in real life: scroll down past the references and the appendix has several example scenarios: 

CDC Statistics Reporting Guidance

26 minutes ago, PeterPan said:

Can I just ask, did you have to alter your medication routine for your AI to be able to take the vaccine?

I'm not that poster, but I have four people in my extended family that I can answer for: none of them were advised to alter their medication routine. 

[*****]

On 3/27/2021 at 7:43 AM, Not_a_Number said:

I have a friend who isn't getting it because she has an auto-immune disorder. I don't personally know that she did that risk assessment correctly, but that's her reasoning. 

This is what I heard from a friend who has an auto-immune disorder (celiac and major sensitivities to many food, toothpaste and scents).  She has been told some of the covid vaccines have PEG's in them, polyethylene glycol.  She is staying away from Pfizer when she decides to get the shot.  (I see this was discussed in another recent thread about allergies and the vax, but I haven't read through it yet.)  PEG's are in many products, including many popular brands of toothpaste.  My friend once had a reaction so badly, that her gums were bleeding and so sore.  Anyway, it is just so sad companies continue to put junk like this in our products when we really don't need them...I just found a toothpaste called "Uncle Harry's Alkalizing toothpaste", just one of many out there that has no PEG's in them. 

[kiwik]

I would rather not have it.  I hate needles and would love more data.  But I will have it because I can see no way round the fact I have a moral obligation to do so.

[Pawz4me]

7 hours ago, PeterPan said:

Can I just ask, did you have to alter your medication routine for your AI to be able to take the vaccine?

I thought I had read that's what they were doing. I guess I'm just trying to see what they're thinking is happening with inflammation and the vaccine and preexisting conditions that involve inflammation and the vaccine.

This is a good summary of what AI rheumatology patients are being advised regarding medication. Currently my only medication is one of the biologic medications that doesn't have to be skipped. Many patients who are on multiple medications will likely need to skip some and not others.

Edited March 29, 2021 by Pawz4me

[Jann in TX]

9 hours ago, PeterPan said:

Can I just ask, did you have to alter your medication routine for your AI to be able to take the vaccine?

I thought I had read that's what they were doing. I guess I'm just trying to see what they're thinking is happening with inflammation and the vaccine and preexisting conditions that involve inflammation and the vaccine.

No need to alter medication schedule.

I travel internationally as much as I can-- I've only had to alter my medication schedule when taking a LIVE vaccine (like Yellow Fever--which I'm due for again this year...).

Not every Dr is a specialist in immunology.... sure they can give their opinion- but it would be similar to me (a math teacher) giving advice on the best Spanish course for a student to take.

[TCB]

16 hours ago, DoraBora said:

Help me understand this.  I've seen so many people on this board dismiss the idea that someone died with Covid, not from Covid.  A person who had congestive heart failure/diabetes/cancer, etc., or who was just elderly and acquired Covid and died.  These same people seem to take the opposite tack on people who died following a vaccine (Well, he probably died as a result of... whatever).  

Btw, I know it can be difficult to read tone.  I'm not trying to be argumentative.  I really don't understand the difference, though it's probably obvious to everyone else. 🙃 

Don’t know if this helps with your question but I have, unfortunately, seen many Covid deaths, and, although the people who died had other prior health problems, it was completely obvious to me that the reason for their death was that they had Covid. 

I don’t have any personal experience of a death after receiving the vaccine so I can’t speak to that. 

[melmichigan]

20 hours ago, Joker2 said:

It’s tough to find the information. The FB groups we’re in won’t even allow discussion about the vaccine right now due to things getting heated, but I’ll post if I find anything and I’ll definitely update what we decide and how it goes.

We have spoken with our specialists. My child with POTS and MCAS will receive an mRNA vaccine on Wednesday (not sure which, although we're hoping for Pfizer).  The concern is similar to what my team mentioned, because of the concern of lower response, as being shown in what has been released in the ongoing COVaRiPAD study, we are going with the highest possible efficacy rate vaccines and 🤞for an immune response.  There are also some minimal concerns with the J&J vaccine and the MCAS, so we are avoiding that.  If you're just looking at severe disease and death, this may not impact you, but I have a younger sibling that won't be able to be vaccinated for some time.  My child has instructions for pre-medication, and we'll be carrying our own epi, although we are going to a monitored facility with doctors available.  If given Moderna we are anticipating some response even after the first shot based on our providers experiences.

ETA: Our health department called me back and they will be giving Pfizer. 

Edited March 29, 2021 by melmichigan

[PeterPan]

58 minutes ago, melmichigan said:

If given Moderna we are anticipating some response even after the first shot based on our providers experiences.

You mean side effects or ?

[melmichigan]

19 minutes ago, PeterPan said:

You mean side effects or ?

Side effects primarily, which the stress of can exacerbate symptoms, that's just the way it works, similar to my response with fever.  They have had one patient have an allergic response to Moderna, but not anaphylactic.  

Edited March 29, 2021 by melmichigan

[Janeway]

We did get the shots. BUT, I considered not. We do not do all vaccinations. Here were our cons.... 1) it is relatively new and not thoroughly tested. 2) There is a shortage and some of us should step aside and let those who are at higher risk get it first, or those around people who are at higher risk. 3) would not get the J&J one because it is embryo-derived.  

 

In the end, we all got them. But I would not fault someone else who chose not to. There are vaccinations our children have not been given and will not be doing.

[Scarlett]

On 3/27/2021 at 10:26 AM, Pawz4me said:

 

Interesting. My rheumatologist is like a million percent for getting the vaccine. The last time I saw him he walked in the exam room and the first thing out of his mouth was "So you need to get the vaccine as soon as you possibly can." And from what I'm reading on the medical boards I belong to almost all AI patients are being given the same advice by their rheumies, and cancer patients by their oncologists (DH's oncologist certainly wanted him to get it ASAP). I want it because I have AI issues. Long Covid sounds to me as if it may be at least partially AI in nature, and viruses have long been suspected of being triggers for AI illnesses. It seems more logical to me that the vaccine would protect me from that than it's likely to trigger something itself. If I didn't already have those AI things going on I wouldn't be nearly as concerned about it.

I know a few vaccine hesitant people. One person got the vaccine because she ultimately felt it was the right thing to do to help protect everyone, although I suspect she's already kind of wishing she hadn't gotten it (she's never been very consistent in her opinions, is easily swayed by the most recent person she talked to, etc.). One couple has decided to get it because they believe they won't be able to travel like they want to w/o it (and I'm guessing they're right about that, as they like to do lots of cruises).

I'd really, really like for us to reach herd immunity, but because I do try to hold myself to consistent positions I'm okay with people making their own choices about what to do with their bodies.

My friend who is very sick with psoriatic psoriasis got her second shot Saturday.  At first she was counseled by one of her doctors not to get it yet.....then the doctor abruptly changed his mind and told her to come to the office and get the shot.

[MotherGoose]

I have no risk factors. Zero. Neither do my children. Covid in all likelihood would not pose an emergency for us, so I don’t see the point in taking a vaccine that has emergency approval. If I had risk factors, I would take it. We are moving on with our lives and thankful for good health. 

[Spryte]

I was unsure about putting this here, but I’ve been very anxious about getting my second Pfizer.  To vaccine or not to vaccine is *the* question here.  

I have many autoimmune issues, but that’s not the reason.  And POTS, MCAS (waving hi to whoever posted about that above!), med allergies, and just boatloads of issues like that.  It’s a bummer.  My docs were all on board with the shot.

But, ugh, I have been sick for a while now.  We thought it was a UTI, I felt better long enough to get my first shot, had two days of side effects, better, then bam ... had to go back on abx.  And then my liver said, “Nope!” I ended up in the hospital for a few days, and I’m still in pain.  7 lbs down in a week.  Might be more than that.

Most of the docs have encouraged me to get the next shot.  On Wed.  But lemme tell you, I am nervous.  I’ve been assured over and over that this was happening before the shot, shot didn’t cause it, shot isn’t processed through liver so next one will be fine.  But, man, I’m a nervous wreck.

 

[Not_a_Number]

2 minutes ago, kand said:

I'm sorry you're still not well! I don't blame you for not being eager to add more stress to your body right now. It doesn't seem unreasonable for you to wait until you're feeling better. We don't know exactly what the efficacy rate is when you space doses apart farther than recommended, but they are doing it that way in the UK. There was a very encouraging real world study of vaccinated essential workers in the US that was released today, that showed they had 80% protection from Covid19 infection (not just symptomatic infection, but any infection) after 1 shot. At least you have that protection at this point.

I'd personally wait if I were her, too. I think doctors are a little overconfident about corner cases like this one. 

[caayenne]

3 hours ago, melmichigan said:

We have spoken with our specialists. My child with POTS and MCAS will receive an mRNA vaccine on Wednesday (not sure which, although we're hoping for Pfizer).  The concern is similar to what my team mentioned, because of the concern of lower response, as being shown in what has been released in the ongoing COVaRiPAD study, we are going with the highest possible efficacy rate vaccines and 🤞for an immune response.  There are also some minimal concerns with the J&J vaccine and the MCAS, so we are avoiding that.  If you're just looking at severe disease and death, this may not impact you, but I have a younger sibling that won't be able to be vaccinated for some time.  My child has instructions for pre-medication, and we'll be carrying our own epi, although we are going to a monitored facility with doctors available.  If given Moderna we are anticipating some response even after the first shot based on our providers experiences.

ETA: Our health department called me back and they will be giving Pfizer. 

I saw that people were mentioning POTS, so I thought I would chime in with two anecdotal cases. My sister and I both have POTS (both cases thought to be "caused" by viruses. I may also have some mast-cell issues, as I had an episode 3 years ago which sounds awfully similar).

My sister got Moderna and has had both doses. She did fine and did not experience a major flare, although she did have the typical second-dose 24 hour flu feeling. She is over a month out now, and she feels great!

I have gotten my first dose of Pfizer two weeks ago, and I had no problems at all. I am very nervous of the second does, but based upon how my sister did, I am choosing to believe that all will be well!

Our doctors definitely feel like the benefit outweighs the risks.

[Katy]

16 minutes ago, Spryte said:

I was unsure about putting this here, but I’ve been very anxious about getting my second Pfizer.  To vaccine or not to vaccine is *the* question here.  

I have many autoimmune issues, but that’s not the reason.  And POTS, MCAS (waving hi to whoever posted about that above!), med allergies, and just boatloads of issues like that.  It’s a bummer.  My docs were all on board with the shot.

But, ugh, I have been sick for a while now.  We thought it was a UTI, I felt better long enough to get my first shot, had two days of side effects, better, then bam ... had to go back on abx.  And then my liver said, “Nope!” I ended up in the hospital for a few days, and I’m still in pain.  7 lbs down in a week.  Might be more than that.

Most of the docs have encouraged me to get the next shot.  On Wed.  But lemme tell you, I am nervous.  I’ve been assured over and over that this was happening before the shot, shot didn’t cause it, shot isn’t processed through liver so next one will be fine.  But, man, I’m a nervous wreck.

 

I’d probably wait until you’ve been feeling well for two full weeks, unless you have reason to think you won’t feel well for the foreseeable future. In which case I’d just get it.

[Spryte]

9 minutes ago, kand said:

I'm sorry you're still not well! I don't blame you for not being eager to add more stress to your body right now. It doesn't seem unreasonable for you to wait until you're feeling better. We don't know exactly what the efficacy rate is when you space doses apart farther than recommended, but they are doing it that way in the UK. There was a very encouraging real world study of vaccinated essential workers in the US that was released today, that showed they had 80% protection from Covid19 infection (not just symptomatic infection, but any infection) after 1 shot. At least you have that protection at this point.

Thanks.  Yes, I’m really considering postponing by at least a week.  One of the docs, who happens to volunteer at the vaccine clinic, suggested I go in, and if I’m not feeling tip top, talk to someone there about rescheduling it for a week or so.  That, somehow, seems like the sanest plan to me.  I want the shot, and have a lot of follow up testing so it would be nice to be vaccinated, but man, I’m really scared of adding more stress.  Also, I’m not taking anything like tylenol or Advil, so that’s not going to help with side effects.  Aaack.  

[caayenne]

10 minutes ago, Spryte said:

Thanks.  Yes, I’m really considering postponing by at least a week.  One of the docs, who happens to volunteer at the vaccine clinic, suggested I go in, and if I’m not feeling tip top, talk to someone there about rescheduling it for a week or so.  That, somehow, seems like the sanest plan to me.  I want the shot, and have a lot of follow up testing so it would be nice to be vaccinated, but man, I’m really scared of adding more stress.  Also, I’m not taking anything like tylenol or Advil, so that’s not going to help with side effects.  Aaack.  

I think that sounds like a good plan. If you're having a lot of pain right now, that stress can cause inflammation by itself. Since the Pfizer is scheduled for 3 weeks apart, you would only be at 4 weeks if you waited an extra week. I don't blame you one bit. When your immune symptoms are different every day, it's scary to think about intentionally introducing a major immune response to your body on purpose.

Out of curiosity, do you not take Advil because of the MCAS? My doctor doesn't know a lot about it, but I take it most days. Do you react to it, or is it just a precaution?

I'm super nervous, as I said above. I ended up in the hospital twice three years ago with possible mast-cell issues.  If I think about it too much, I start to get tightness in my throat and chest, and my heart starts racing. I won't say more, because I don't want to trigger your symptoms. The only thing I can say is that we are in God's hands, and although sometimes we feel like we're not going to make it to tomorrow, He's got this. We will be ok!

 

Edited March 29, 2021 by caayenne

[ktgrok]

31 minutes ago, MotherGoose said:

I have no risk factors. Zero. Neither do my children. Covid in all likelihood would not pose an emergency for us, so I don’t see the point in taking a vaccine that has emergency approval. If I had risk factors, I would take it. We are moving on with our lives and thankful for good health. 

You know your family, but I will say that in my county a full 1/3 of hospitalized patients are people under 45 years of age...I can't imagine all of them expected they were high risk. It seems to be a theme that they are seeing younger people sicker - in various places. Not sure if that is due to one of the variants or what. Something to look into, perhaps. 

[mathnerd]

I am waiting because I am not eligible yet in my state. But, even when I become eligible, I would like to choose which vaccine I get. I am not sure that we will be able to choose right now. But, later on, when the crowd lining up to get vaccinated has dwindled, I might be able to make a choice. 

Most of my social life revolves around my kid's friends, their families, his activities etc and since the vaccine is not approved for his age group, so my social interactions will be restricted due to that. I will get the vaccination when my child is able to get his.

I do work from home, my DH picks up groceries these days and I am so introverted that lockdowns had beneficial effects on my stress and anxiety levels, so I have those things guiding my decisions. No grandparents in the picture, so no worries on that front. But, my son does miss group activities with kids his age though he "sees" tons of them everyday on Zoom.

[Spryte]

29 minutes ago, caayenne said:

I think that sounds like a good plan. If you're having a lot of pain right now, that stress can cause inflammation by itself. Since the Pfizer is scheduled for 3 weeks apart, you would only be at 4 weeks if you waited an extra week. I don't blame you one bit. When your immune symptoms are different every day, it's scary to think about intentionally introducing a major immune response to your body on purpose.

Out of curiosity, do you not take Advil because of the MCAS? My doctor doesn't know a lot about it, but I take it most days. Do you react to it, or is it just a precaution?

I'm super nervous, as I said above. I ended up in the hospital twice three years ago with possible mast-cell issues.  If I think about it too much, I start to get tightness in my throat and chest, and my heart starts racing. I won't say more, because I don't want to trigger your symptoms. The only thing I can say is that we are in God's hands, and although sometimes we feel like we're not going to make it to tomorrow, He's got this. We will be ok!

 

On the Advil/Tylenol question - I normally take it.  But because my liver is terribly unhappy from a reaction to the meds right now, I’m not taking anything that’s processed through the liver till I get the go ahead from the doc.  So, I think it’s ok for MCAS unless you react to it.  Yikes, just thinking about it makes me feel hive-y!  🤣

[PeterPan]

1 hour ago, Scarlett said:

My friend who is very sick with psoriatic psoriasis got her second shot Saturday.  At first she was counseled by one of her doctors not to get it yet.....then the doctor abruptly changed his mind and told her to come to the office and get the shot.

Oh that's interesting. Do you think the recommendations are changing as they see the data from so many people getting it or was it more pressure on the doctor?

[caayenne]

Just now, Spryte said:

On the Advil/Tylenol question - I normally take it.  But because my liver is terribly unhappy from a reaction to the meds right now, I’m not taking anything that’s processed through the liver till I get the go ahead from the doc.  So, I think it’s ok for MCAS unless you react to it.  Yikes, just thinking about it makes me feel hive-y!  🤣

Ok, that's good to know! It sounds like it's good to wait a bit on that, too!

Isn't it weird how thinking about this stuff can make you feel like you're having a reaction? It makes me feel nuts, sometimes! 🤣

But so much of the POTS stuff, at least, is nervous system related, so I guess the nervous system triggers the stress, which triggers the inflammation, which triggers more stress.... 🙃

[Spryte]

13 minutes ago, Ordinary Shoes said:

If someone misses the second dose, can they get the second dose in the future or do they need to start over again with the first dose? 

The doc that recommended I speak to someone at the clinic on the day of my second appt seems to think Pfizer can be postponed by a week or so.  I will find out more on Wed and report back. 

Edited March 29, 2021 by Spryte

[Katy]

6 minutes ago, PeterPan said:

Oh that's interesting. Do you think the recommendations are changing as they see the data from so many people getting it or was it more pressure on the doctor?

A couple studies came out that showed less than expected side effects in autoimmune patients and the population of autoimmune patients are generally more genetically inclined to get the inflammation reaction to the infection thar can kill you. 

4 minutes ago, Spryte said:

The doc that recommended I speak to someone at the clinic on the day of my second appt seems to think Pfizer can be postponed by a week or so.  I will find out more on Wed and report back. 

I think Dr Fauci said it hadn’t been studied enough to know but there was no reason to think it would hurt to give it a few weeks off schedule. I think he said it needed to be at least two weeks after the first dose. But that was probably 2 months ago now, there may be newer science. 

[mlktwins]

I actually would prefer to wait awhile to get the vaccine, but because we are caring for 3 elderly parents and my 15 year old boys have been fully locked down for year to try and protect them, we are going to get it done.  My in-laws are just this week requiring care to come in their home and there will be a live in person with them.  We are getting more exposed by the minute.  And....I would like to get my boys back in the pool for swim team because they have missed an entire year and they love it so much.  I am overweight and not in the best of shape and feel I probably wouldn't do too well if I got Covid, so that is a factor as well.  Plus I need a biopsy and depending on the results, I may need a surgery.  So...here we go.  For better or worse getting the 1st dose next week.

My sister works in a hospital with direct patient contact and she has researched and decided not to get it.  I'm not telling her I am 😁!

[Pawz4me]

42 minutes ago, Spryte said:

On the Advil/Tylenol question - I normally take it.  But because my liver is terribly unhappy from a reaction to the meds right now, I’m not taking anything that’s processed through the liver till I get the go ahead from the doc.  So, I think it’s ok for MCAS unless you react to it.  Yikes, just thinking about it makes me feel hive-y!  🤣

FWIW -- Acetaminophen (Tylenol) is processed through the liver and ibuprofen (Motrin, Advil) through the kidneys.

[MotherGoose]

1 hour ago, ktgrok said:

You know your family, but I will say that in my county a full 1/3 of hospitalized patients are people under 45 years of age...I can't imagine all of them expected they were high risk. It seems to be a theme that they are seeing younger people sicker - in various places. Not sure if that is due to one of the variants or what. Something to look into, perhaps. 

What country? Curious. There are no guarantees about anything, I realize that. I personally know many people who have had it at this point, who have my same demographics, and  are completely fine. I’m not saying I’ll never take it, but I’m waiting and seeing. 

[wathe]

52 minutes ago, Spryte said:

The doc that recommended I speak to someone at the clinic on the day of my second appt seems to think Pfizer can be postponed by a week or so.  I will find out more on Wed and report back. 

Well, my entire country is delaying the second dose, with an interval of up to four months.  So, you won't be alone in getting a delayed second dose.

ETA that's for both Moderna and Pfizer

Edited March 29, 2021 by wathe

[ktgrok]

34 minutes ago, MotherGoose said:

What country? Curious. There are no guarantees about anything, I realize that. I personally know many people who have had it at this point, who have my same demographics, and  are completely fine. I’m not saying I’ll never take it, but I’m waiting and seeing. 

Orange County, Florida - the county Orlando is in. There is some thought the newer strains may be harder on young people, but that's just a guess. Brazil has seen the same thing - going from old frail people in ICU to younger, healthier people. 

Found this from today, in France: https://www.euronews.com/2021/03/25/covid-19-now-killing-younger-people-french-doctor-tells-euronews

So yeah, the trend for younger patients seems to be happening in a lot of places. The new variant was found in 90 percent of those cases in France. 

Edited March 29, 2021 by ktgrok

[Spryte]

58 minutes ago, Pawz4me said:

FWIW -- Acetaminophen (Tylenol) is processed through the liver and ibuprofen (Motrin, Advil) through the kidneys.

Thanks!  That’s what I thought, too.  I figured Advil would be fine. But for whatever reason, the specialist says absolutely no NSAIDS, no Advil, but I might be able to take a low dose of Tylenol, depending on blood work.  Isn’t that odd?  I’m erring on the side of nothing.  Because ouch.  😊

Edited March 30, 2021 by Spryte

[DoraBora]

Research released by CDC today about real-world effectiveness of a single dose of Pfizer and Moderna:

https://www.yahoo.com/lifestyle/1-dose-moderna-pfizer-vaccines-effective-covid-19-get-second-dose-experts-192823135.html

[DoraBora]

So, historically, how long has it usually taken for adverse reactions to show up in vaccines?  People worrying out loud about long-term issues that could arise from mRNA  have me feeling jumpy. 

None of us have any autoimmune issues, and feeling poorly for a few days (if it even comes to that) is a worthwhile trade off for me, but the threat of long-term issues is scary. 

Edited March 30, 2021 by DoraBora

[Pawz4me]

26 minutes ago, Spryte said:

Thanks!  That’s what I thought, too.  I figured Advil would be fine. But for whatever reason, the specialist says absolutely no NSAIDS, no Advil, but I might be able to take a low dose of Tylenol, depending on blood work.  Isn’t that odd?  I’m erring on the side of nothing.  Because ouch.  😊

I wonder if he's watching something in addition to your liver? Or possibly (grasping here) he doesn't want to risk NSAIDs messing up any of your numbers while he's trying to figure out what's going on??

DH only has one kidney, so he has to protect it, and that means no ibuprofen if he can possibly do w/o it. But his cancer medications sometimes cause his liver counts to soar, which means no acetaminophen. So he's often in a no-man's-land for easy pain control, and always juggling what to take (or not) based on most recent blood work. Thankfully (??) we've learned that oncologists don't get overly concerned about liver counts until they're around five times higher than normal.

Edited March 30, 2021 by Pawz4me

[Pawz4me]

16 minutes ago, DoraBora said:

 

None of us have any autoimmune issues, and feeling poorly for a few days (if it even comes to that) is a worthwhile trade off for me, but the threat of long-term issues is scary. 

Well, I've posted this before so I'll say it again, even though I could absolutely be wrong --

Long Covid sounds to me as if it has a lot in common with many autoimmune diseases. And viruses have long been suspected to be triggers for some AI diseases. So I think anyone worried about the vaccine triggering something AI should weigh that against the risk of Long Covid being an AI disease. Personally, given that I already have two AI diseases and want to lessen my chance of getting any more -- I'm betting the vaccine is the far safer choice. But (obviously) that's just my layperson's opinion.

[Katy]

NSAIDS are hard on your liver too. I was prescribed aleve as a kid, before it was over the counter. I remember talking about it with the pharmacist in the family, and she cracked a joke  about it being fine except for the people that it caused liver failure in.  I think the prescription doses may have been higher though. 

[Spryte]

56 minutes ago, Pawz4me said:

I wonder if he's watching something in addition to your liver? Or possibly (grasping here) he doesn't want to risk NSAIDs messing up any of your numbers while he's trying to figure out what's going on??

DH only has one kidney, so he has to protect it, and that means no ibuprofen if he can possibly do w/o it. But his cancer medications sometimes cause his liver counts to soar, which means no acetaminophen. So he's often in a no-man's-land for easy pain control, and always juggling what to take (or not) based on most recent blood work. Thankfully (??) we've learned that oncologists don't get overly concerned about liver counts until they're around five times higher than normal.

We think that my liver was struggling from a med reaction to the abx, and then they sent me home from the ER with Toradol - an NSAID.  And my numbers went sky high and I had to go back.  Really scary high.  So maybe doc is thinking I just can’t tolerate NSAIDS anymore.  
 

ETA:  oops!  It was Tramadol!  Tramadol was the one, but Toradol. It’s been a long week, I’m mixing up meds.  Oops.

Edited March 30, 2021 by Spryte

[Spryte]

27 minutes ago, Katy said:

NSAIDS are hard on your liver too. I was prescribed aleve as a kid, before it was over the counter. I remember talking about it with the pharmacist in the family, and she cracked a joke  about it being fine except for the people that it caused liver failure in.  I think the prescription doses may have been higher though. 

Oh, ouch.  That was almost me.  The final straw for my liver was an NSAID.  I’m completely scared off of them for now.

[Spryte]

2 minutes ago, kand said:

 

Yikes. I have a kid with a lot of headaches and several days of severe cramps each month. I worry about how much ibuprofen she uses, and now I don’t feel any better! On the other hand, I was given toradol when I had a kidney stone, and it was amazing! I had never had it before, but boy did it work well, with none of the narcotic loopiness (they wanted to give me morphine, but I declined because I had had to drive myself to ER with my kids, so they were there with me). 

 

Oh wait!  Hold on.  Sorry.  Too many meds!  It was Tramadol.  Gaaaah.  Tramadol gave me the big scary reaction.  Yeesh.  You’d think I could keep this stuff straight.   How embarrassing.
 

Toradol rocks.  I’m allergic to almost all the narcotics, it’s a real problem.  Toradol and Tramadol were my go-tos.  Now I’m down to Toradol, I think.  If that one’s still ok.  Eek.