Should I get the second booster?: Considering my... - CLL Support

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Should I get the second booster?

StobiMan profile image
19 Replies

Considering my severe reactions after the first three jabs, I'm hesitating about the second booster jab. I'm curious what my fellow severe reactors are choosing to do has we enter another wave.

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StobiMan profile image
StobiMan
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19 Replies
neurodervish profile image
neurodervish

Hi Stobi, It may help if you lock your post (to give fellow responders online privacy) and also share a bit more info about your condition (whether you're on BTKIs & which vaccine you received). Your profile is empty, so people have to search thru all your posts to find the answers.

I didn't have a severe reaction, but my half-dose Moderna booster (4th jab) had no side effects at all (apart from a sore arm). The other shots hit me much harder.

Wishing you the best

StobiMan profile image
StobiMan in reply toneurodervish

Thanks for the information and suggestions. I'm still on the W and W mode, but my reactions to the Pfizer vaccinations have been progressively more severe than the previous vaccination. The booster kept me in bed for the better part of a week dealing with the majority of the side effects. My armpit lymph nodes, for example, swelled to 9 cm before returning to the 3 cm I have now.

Thanks again

Astro617 profile image
Astro617 in reply toStobiMan

I had three Pfizer shots. The third one was the worst in terms of side effects. Full body pain in every joint and muscle for about 12 hours. (I know nothing compared to what you experienced.) That said, for my booster (4th jab) I got the Moderna booster and I had very few side effects. The third shot was the shot that brought my antibodies up to a respectable level (>2500 on LabCorp test). The 4th jab is considered the first booster for immune compromised in the US. Good luck deciding.

PaulaS profile image
PaulaSVolunteer

Hi StobiMan, I'm sorry you've had such bad reactions to the first 3 jabs. :-(

I had a terrible reaction to 3rd jab and was dreading 4th. I delayed having it, due to my fear.

But I had it in the end and to my great surprise, had NO reaction at all. Not even a sore arm, which I accept as normal after any jab. I began to wonder if they'd injected me with sterile water/saline instead!

It was very encouraging to find out a few weeks later, that I had got a much better antibody response after that 4th jab than after the 3rd (which had given such extreme side effects).

I realize the antibody tests aren't perfect and there's much more to the immune system than counting antibodies, but it did make me glad I'd decided to go ahead with the 4th jab. I'll accept further boosters if I'm offered them in future.

Of course we're all different and your experience has already been tougher than mine and may well be bad again. Sadly no guarantee about anything. But I understand your hesitation about 4th jab and thought I'd share my experiences.

Hope you come to a decision that is best for you, re these jabs.

Best wishes,

Paula

LeoPa profile image
LeoPa

How much did the first three help you? What do you expect from the fourth one? Does the risk reward ratio seem favorable?

StobiMan profile image
StobiMan in reply toLeoPa

I have zero antibodies after the booster so I'm just wondering if the second booster is even worth the problems.

Astro617 profile image
Astro617 in reply toStobiMan

What about a monoclonal antibody treatment (Evusheld?) I'm sorry you've not had good luck with the vaccines.

StobiMan profile image
StobiMan in reply toAstro617

At this point it might be my only viable option.

LeoPa profile image
LeoPa in reply toStobiMan

There is probably no definite answer to your question so it's a tough decision.

PaulaS profile image
PaulaSVolunteer in reply toStobiMan

Sometimes people who had no antibodies after earlier jabs, then get good responses after further boosters. Very unpredictable though...

I agree that Evosheld seems a much better idea, but it's very hard to get in some parts of the world.

Paula

StobiMan profile image
StobiMan in reply toPaulaS

Thanks, Paula. I'm going to ask the docs about that one. The UC (University of California) hospitals have evusheld so I'll ask about that as well.

Ned1 profile image
Ned1

The second booster is now available for 60+ in Ontario, Canada where I reside. I have been considering taking a pass given my reaction to the 2nd and 3rd doses. I’m on W & W. My first dose was Astra Zeneca which resulted in very mild symptoms that lasted less than a day. The next two were Pfizer which in both instances left me unwell for 3 days (fever, body aches, nausea). Of course, I’ll take another 3 days of discomfort to avoid Covid.

I did recently get an antibody test which showed a very strong antibody response (five months after receiving my last jab). I’m uncertain whether Pfizer and Moderna have updated the vaccine recipes to take account of the new variants.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toNed1

We are still waiting for any vaccine to be updated to cover newer variants. Thankfully booster shots are still reducing the risk of a more severe COVID-19 infection, but the period of protection has waned against the Omicron variants :( .

KirbyBH profile image
KirbyBH

I just had the 2nd booster. Reaction was similar to shot #3 but no fever. Lots of achy bones, tired and weak. Lasted 2 days. Shot #3 same but did have slight fever. Shot #2 I got what they call covid arm - red itchy hot for a week. Did not get this on other shots. I expected reaction so had shot when I could chill out for a couple of days. I am also 15 years W&W.Good luck! I thought reaction was worth it considering new strain seems to really be increasing here in US.

wizzard166 profile image
wizzard166

If you are having bad reactions, then I'm not sure what you should do.

I read a very recent news story out of Israel today, and they are saying the fourth shot is giving three times the protection still remaining from the first shots. They said that enhanced protection was only lasting about two months, and then it reduced to be only slightly better than that from the original shots without the fourth one.

On this related subject, I also read today that Sotorvamid monoclonal infusion is not working well on the new Omicron version B2; however, they said another one of the available monoclonal infusions is working well with it.

Carl

StobiMan profile image
StobiMan in reply towizzard166

Thanks, Carl. There's just a lot of info out there and I'm at a point where my family and friends are far more concerned than I am. Considering all the crazy things I've done in my life, I'm actually shocked I'm still here. Thanks again, Mike

wizzard166 profile image
wizzard166 in reply toStobiMan

Hey Stobi

Now that I've had enough information flow on things, I'd say we have a lot more to worry about from Covid than from CLL. Before too many of our group say I'm not taking our illness seriously enough, I'll explain myself.

CLL is a very serious illness, much more serious than any Flu. What I'm coming to understand however is that the new Novel Targeted Theraputic medications are working beautifully against the illness, and many of us will be able to live the same number of years that we might have without our illness. Granted there is a sad percentage of our group however who will have their lives ended prematurely. My Father had CLL and he went at age 71; I just celebrated my 75th on March 30th and have a goal of finishing the game (make it to 100) We'll see.

I've read that the major cause of death for those with CLL is Pneumonia, and I've had four of those illnesses lifetime. The reason Pneumonia is the leading cause of death with CLL patients is very clear of course; our immune systems are severely damaged by CLL. So this is why I put Covid really high on the list of danger to all of us.

I've put together all of the information flow I need to now see that Vaccines will not cut it for us. We need to have them however, to give us the best overall chance at not getting too ill from this upper respiratory infection. Vaccines however so far are failing, in terms of ending the dangers of the illness; unlike, the vaccines for Polio etc. The reason is that the common cold is a COVID virus, and of course we have never had (and never will have) a vaccine for the common cold. Flu Vaccines help a lot with the more serious version of the common cold called the Flu, so we should get the vaccine. The greater likelihood is that the Anti Viral drugs will provide the best answer to fight COVID, and used in combination with Monoclonal Antibody infusions will give us a good chance in this fight.

I don't claim to know everything, but this is what my senses are telling me.

Carl

hopefulbunny profile image
hopefulbunny

I had severe reactions to all 4 of my Covid jabs, 2 AZ & 2 pfizer, but am so very glad I had them all as now I have Covid which so far 🤞is pretty mild.

Pin57 profile image
Pin57

Hi StobiMan - My advice regarding second booster, since you’ve had rough go with previous shots, is discuss with your CLL doc on the need and when. An even more important discussion w/same doc is to get assurance that they will prescribe (right away) antiviral pills (Paxlovid) or a MABs infusion (best one available) should you get Covid.

This forum has posts from those on W&W like you (and I) are and that when they got covid they got a horrible runaround (or worse a turndown) to get one of those covid treatments per an incorrect reason they were not immune compromised ! We CLLers are ALL immune compromised no matter what our current CLL treatment status is (W&W or taking drugs).

So that’s my main advice is to have a plan in place so your not stressed out to get a potential life saving covid treatment within 5 days of symptoms.

Good luck on your decision about future boosters and avoiding covid.

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