COVID vaccine May 2024: I had my latest covid... - CLL Support

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COVID vaccine May 2024

Braveheart19 profile image
19 Replies

I had my latest covid vaccine on Saturday and it’s now Monday and my side effects as usual are horrible. Vomiting, thumping headache, stomach pain. The lymph node on the side of my neck is swollen much more than normal. I wondered is it just me?

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Braveheart19 profile image
Braveheart19
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19 Replies
Walkingtall62 profile image
Walkingtall62

I had Moderna this time and didn’t feel so good for a day or so

CoachVera55 profile image
CoachVera55

So sorry to hear about your side effects. Since Covid vaccines are no longer mandated I would not take any. I however stay masked & require anyone closer than 6 feets to also mask up. Anyone in my home or car must be masked also. I live alone & work virtually so my circumstances are unique. I am having major bone/joint side effects with Zanubrutinib myself tho. I hope it subsides soon & completely. #GODSPEED🙏🏾

cajunjeff profile image
cajunjeff in reply to CoachVera55

Covid vaccines where I live have never been mandated, so far as I know. I am aware that they were required in some situations, such as to fly or be in the military. But they have been recommended for us with cll by most Cll specialists.

I think that is still the case, my cll doctor still recommends I take covid boosters. I understand that is because catching covid without any protection from a booster creates a greater risk to me than the potential side effects of the vaccine, which side effects are mild and transient for most.

Since we are all so different with our cll, some doctors might want some of us to hold off on a covid booster, for any number of reasons.

So I wouldn’t advise anyone with cll to have, or not have, a Covid booster. I would rather advise them to find the best cll doctor they can and follow that doctors advice. I think most people with cll not taking a covid booster are doing so against their doctors advice, or just didn’t ask because they have decided they are not having a booster anyway. I say “most” because I am aware of some cases where people have been told to hold off a bit while the efficacy and side effect profile of new boosters is being evaluated.

Tingy profile image
Tingy

I had my Moderna vaccine a couple of weeks ago and felt nauseous, had pains in my stomach and with an arm that felt like lead where I had the vaccination. I felt unwell for around five days. This was my ninth vaccination and the first time I’ve felt poorly with it. I’ll keep having the vaccinations offered as I had Covid early on and was lucky that the antiviral became available just three weeks beforehand. Take care and I hope that you’ll soon be feeling brighter.

Edalv profile image
Edalv

I also have a strong reaction to the covid vaccine every time I take it, so I have decided to take it only once a year instead of the recommended 6 months booster. I am not advocating this approach in general, it’s a personal decision based on my personal experience… I had 6 shots in total and a strong reaction every single time, that’s why I decided to skip the 6 months booster and switched to a yearly timeline… I recognize that each of us is different and we need to assess our own personal situation and risk profile… 🙏

Spark_Plug profile image
Spark_Plug

I think to make the best choice for yourself you should discuss all the symptoms and how long they last with your doctor, see what he says.

That way, the person who knows your body second best, can advise you. It is often a case of yes, this unpleasantness is a bother but, if it leads you to a more dangerous position without it, it becomes an inconvenience. Ultimately, you still have the choice to accept or decline but why not have a doctor weigh in?

Kvb-texas profile image
Kvb-texas in reply to Spark_Plug

I have changed the way I ask my doctor for recommendations to make sure I don’t get the default, CYA, response. I now ask the doctor “if you were me… in the same exact condition… what would you do?” You may be surprised by their answer.

Kvb-Texas

Spark_Plug profile image
Spark_Plug in reply to Kvb-texas

Interesting phrasing, I never thought about that approach. You are still keeping it hypothetical. If they don't jump behind "ethics", it would probably come down to how comfortable they are sharing their opinion, some will, some won't.

Kvb-texas profile image
Kvb-texas in reply to Spark_Plug

You are so correct. In my very narrow frame of reference, I have 2 doctors that I believe open up with their personal opinions and 3 that will not. Interestingly, the 2 that will speak freely, are over 60. The other 3 might as well be AI. They sound like they are reading from a script.

opal11uk profile image
opal11uk

Hubby had a really bad reaction this time round, went to bed and slept for a day but then fine. I couldn't have mine at the same time due to a UTI but after seeing him decided not to have it!

Sorry to hear of your adverse reaction. Shows how diverse we are as a community. I am in the UK , 72 and on W&W since 2017 I am very fortunate that I have never had any adverse reaction to COVID or indeed any other vaccinations. So I always just get jabbed with whatever is being offered. As others have said probably best to follow the advice from your CLL consultant. Hope you feel better soon.

BeckyLUSA profile image
BeckyLUSA

I don’t want to get it, as I normally have had rather strong reactions, but my reactions tend to get less strong with each jab. Doc said get it so I will .

Pearlpink profile image
Pearlpink

my own experience is that I used to get a tennis ball size lymph node in my armpit and my last one before treatment made me really unwell for three weeks. Without fail, I would go completely back to normal after 1-3 weeks.

However, after treatment and remission I virtually got no reaction when I had the vaccine!

When I couldn’t have the vaccine for my year of treatment, and Covid was still common, I was so frightened! I was so glad to get back to them.

My illness had progressed before my first vaccine, so it had nothing to do with when I had a vaccine.

I used to think that at least I was having some immune response.

We are all different. feel very vulnerable to Covid and three members of my family.

If you get terrible side effects like I did, then I would always chat to my consultant about it if I had any doubts.

ChristyAnne_UK profile image
ChristyAnne_UK

I was fully vaxxed up until the Pfizer bivalent in Autumn '22, and I was off colour for a week. Then I skipped the next two because they clashed with doses of "Evusheld2" on the Supernova trial.

Restarted with boosters a couple of weeks ago, with Moderna. Apart from a 10 pence coin size hard, pink, sore patch on my leg for a week (I have them in my thigh muscle), I had no other side effects.

Personally, I have more faith in the protective qualities of my FFP3 masks than vaccines for us CLLers, but every layer helps, and I'd rather prevent an acute infection than take the risk of catching one.

I hope you recover from the side-effects quickly.

JustAGuy profile image
JustAGuy

I just had a Phizer vaccine. Every COVID vaccine I have had gives me a strong reaction for about 2 days. It doesn’t matter if it was Moderna or Phizer, I get the same reaction, about 12 hours post vaccination body aches and pretty high fever the first night. This time was no different, my fever was 40° C (104° F) for about 3 hours in the night. One very achy feverish night, shivering and sometimes nausea (but no vomiting). I use paracetamol (Tylenol) but doesn’t bring it down much. It’s only 1.5 or 2 days of discomfort, so I have thought that’s better than getting COVID. I know if we have that high fever we’re supposed to go to A&E (ER), but it seems like after a COVID vaccine it wouldn’t be necessary since it’s not fever from infection, just my reaction to the vaccination. I do not react like this to other vaccinations like seasonal flu. I have mentioned it to my doctor in the past, but I intend to do so again before the next COVID vaccine is rolled out…

Jiangnanreninusa profile image
Jiangnanreninusa

I haven't had covid vaccine for 19 months due to treatment . After it finished the end of April , I hesitated if I should get the shot due to my daughter's wedding of 200 people on June 1st ( not proper for me to wear a mask ) , I finally rushed to get the vaccine 5/16 (takes 2 weeks to be effective?). I got a fever and bodyache for 2 days. Hope it will give me some protection.

Gradyboy profile image
Gradyboy

I had the initial 2 COVID vaccine no issues. Then I had the booster and my lymph nodes when nuts along with my labs and I had to start treatment. My specialist said no more more COVID vaccines for me. My infusion nurse has the same reaction after the booster he had to start treatment. I'm not advocating against the vaccine but for me I would never be comfortable taking another. I did end up testing positive a year COVID and had zero symptoms. I only tested because my husband was positive. Everyone has to make your own decisions on these things.

New-bee-cell profile image
New-bee-cell

You are not alone. I had a similar response to my booster a few weeks ago. I comfort myself with the thought that (along with masking and avoiding indoor crowds) it is one of the best things that I can do for myself to avoid infection. I figure that if I respond so vehemently to a little bit of the vaccine, then I don’t want to find out what the full virus does to me!🙂

Txkate profile image
Txkate

Sorry to read about your reactions. I got another booster last week, along with my first Shingrex vaccine and Pneumonia shot. I always plan to be down for a few days when I get the Covid vax. but this time my main complaint was “frog in the arm” (remember that terrible punching game in the 60’s, lol) and as I had 2 shots in the left and 1 in the right, the other guy won the contest! Slept off and on for 2 days, a short bout of chills, (first Covid shot that part was horrible!) and some loss of appetite. Each time I feel like I prepare better with lots of hydration. I will get the 2nd leg of the Shingrex in July. My Onco wanted all my vax’s up to date in case we begin treatment in Aug. I have a bone biopsy set, blood work, and a Cat to see (hopefully none) if there is any more progression. It will be interesting to see if the vaccines change the bloodwork. It has in the past. I also had lymph nodes increase in my underarms, which any response is a good sign, I’d say. Hope you feel better!

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