• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The 1/10th rule and vaccines

vision blue

Senior Member
Messages
1,877
The rule in MCAS to use/try things at 1/10th the regular dosage is one that has helped me and seems about right- i can often get away with that small of a dose of meds.

i posted this elswhere but walgreens is now scheudling pediatric doses of pfizer vaccine., I wonder if theyd give it to an adult and if its somesthing is hould puruse. i am not yet vaccinated. I think one child size dose of pfizer would be the most my mcas could tolerate.
 

Rufous McKinney

Senior Member
Messages
13,249
I suspect there would be push back because technically you'd be still considered unvaccinated. Maybe they might agree to do it butwould not fill out the vaccine card.

Could you get a GP to wr ite you an RX that indicates the low dose (I wonder).

would you get multiple small doses over time?

Some new info came out yesterday, vaccine effectiveness seems to be dropping significantly, so thats another consideration.
 

Booble

Senior Member
Messages
1,390
I originally was hoping for that too. But thinking more about it I decided that when we pick up a virus from someone, we get a "full dose" of their cough or sneeze.

I finally bucked up courage to get the Pfizer (which is a less dose than Moderna and recommended by my doctor for me) and had very little reaction -- except for a ton of fear and some fatigue.
The virus I got in Dec 2019 pre-Covid was 100x worse and lasted forever.
The vaccine was surprisingly just a few days of tiredness.
We've all built up so much fear of the vaccine.
 

Rufous McKinney

Senior Member
Messages
13,249
We've all built up so much fear of the vaccine.

I"m not terribly convinced I even mounted an immune reaction, and my hubby who goes out is a one shot of J and J , and possibly rapidly declining effectiveness.

Glad the Pfizer didn't give you too much trouble, and mine was also OK. I'm considering if I should check for antibodies.
 

Booble

Senior Member
Messages
1,390
I"m not terribly convinced I even mounted an immune reaction, and my hubby who goes out is a one shot of J and J , and possibly rapidly declining effectiveness.

Glad the Pfizer didn't give you too much trouble, and mine was also OK. I'm considering if I should check for antibodies.

Same situation here, Ruffie. The hubby that goes out also on the J&J (and 6 mo out). I told him, "I guess I have to start doing the shopping now." He said, "Only if you want to --I like doing it." My response "OK! - I like not doing it!"
But he really needs to get a booster.
 

Rufous McKinney

Senior Member
Messages
13,249
Same situation here, Ruffie. The hubby that goes out also on the J&J (and 6 mo out). I told him, "I guess I have to start doing the shopping now." He said, "Only if you want to --I like doing it." My response "OK! - I like not doing it!"
But he really needs to get a booster.

very similar here. Mine hubby is considering a booster-he got just the one shot in early Aug I think.

Yesterday I left with him driving, and conducted a series of field trips to do some errands I'd put off for- six months to two years. This disorienting experieice called: Ruff Went Out Into the World- did not go very smoothly.

And I became sure enough paralyzed somewhere long the line, unable to stand for one more minute.

I may do a short story on: Rufous' Wonderful Adventure.

My husband must have his field trips and I seem to have no such requirements.
 

Booble

Senior Member
Messages
1,390
Good on you for your attempt out in the world!!

Write that short story!

I'm sure you'll have many fans who can relate.
 

vision blue

Senior Member
Messages
1,877
I originally was hoping for that too. But thinking more about it I decided that when we pick up a virus from someone, we get a "full dose" of their cough or sneeze.

I finally bucked up courage to get the Pfizer (which is a less dose than Moderna and recommended by my doctor for me) and had very little reaction -- except for a ton of fear and some fatigue.
The virus I got in Dec 2019 pre-Covid was 100x worse and lasted forever.
The vaccine was surprisingly just a few days of tiredness.
We've all built up so much fear of the vaccine.


Kind of unfair though- since you didn't have a reaction (congrats! really am happy for you), it's like you're implying that anyone with concern has "built up so much fear of the vaccine". Don't know about you, but in my case the fear is warranted. If it workds out well, nothing could be more awesome but that doesn't change the legitimacy of the concern in the first place after the fact.
 

vision blue

Senior Member
Messages
1,877
I suspect there would be push back because technically you'd be still considered unvaccinated. Maybe they might agree to do it butwould not fill out the vaccine card.

Could you get a GP to wr ite you an RX that indicates the low dose (I wonder).

would you get multiple small doses over time?

Some new info came out yesterday, vaccine effectiveness seems to be dropping significantly, so thats another consideration.

Interesting. What i'd do over mul,itple doses is have to play it by ear. so some scenarios would be zero reaction to small vax. In that case, would suggest was not effective, so i'd get another small dose in 3-4 weeks. If STILL had no reaction, and did not get an MCAS or other reaction to vax, i'd wait and then get an adult size dose, though not sure how long i'd wait (since not sure how delayed my worse reactions will be. my concern with vax is that the real problem with it will kick in at least 4-6 weeks after i have vax).

if i had a medium normal reaction to small dose, then i'd have to decide if i'd risk repeating in 3-4 weeks, so one step at a time.

i'd be ok with not having a vax card; i don't go anywhere anyway. and if i had to, getting a doc note on lower dose, seems like a good idea. thanks.

can you say more on the decrease in effectivenss? how measured? and is this the 6 months data, or are there new arguements like its not working on new strains. interesting.
 

Booble

Senior Member
Messages
1,390
Kind of unfair though- since you didn't have a reaction (congrats! really am happy for you), it's like you're implying that anyone with concern has "built up so much fear of the vaccine". Don't know about you, but in my case the fear is warranted. If it workds out well, nothing could be more awesome but that doesn't change the legitimacy of the concern in the first place after the fact.

Clearly you haven't been reading my posts. I had a HUGELY legitimate concern as well.
But I still think our fear has been heightened.
 

5vforest

Senior Member
Messages
273
I mean, is anyone actually going to administer a smaller dose to a ME/CFS patient just because we ask for it? Seems like the only way that could even have a chance of happening is in your GP's office, if they are still stocking vaccines, and if they have a good awareness of our condition.
 

Booble

Senior Member
Messages
1,390
I mean, is anyone actually going to administer a smaller dose to a ME/CFS patient just because we ask for it? Seems like the only way that could even have a chance of happening is in your GP's office, if they are still stocking vaccines, and if they have a good awareness of our condition.

That's not going to happen. They would have to have conducted research and studied the consequences.
And frankly, rightly so. What we should be advocating for is for the drug companies to consider outlier people with conditions that might require a different dosage. For a random doctor to make that decision could have unexpected consequences that could be deadly.