COVID Jab Reaction: Hi I have CLL, diagnosed... - CLL Support

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COVID Jab Reaction

K6Sailor profile image
16 Replies

Hi

I have CLL, diagnosed some 3 years ago. I've just had my COVID Summer booster jab and as a result have been in bed for 2 days totally wiped out, I'm still recovering today, the third day. The reaction starts with shivering and a total lack of energy, like severe flu. This happens every time I have the jab.

Does anyone else experience this reaction? The consultant I see says it's a great sign that my immune system is functioning but is it worth continuing to have the jab?

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K6Sailor profile image
K6Sailor
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16 Replies
mdsp7 profile image
mdsp7

I have been sick in bed for one day with body aches and chills after 4 of 7 covid immunizations. I had a similar reaction after my second Shingrix shot.

HJ_2 profile image
HJ_2

Hi, I have been ill after each Covid vaccine. Originally it was similar to my reaction to the flu jab…. shivers, mild temperature, pounding headache, feeling of nausea for two or three days. Unfortunately with each Covid jab, the length of time for symptoms has increased as has the severity. The last jab in November floored me for a week in bed with awful rigours, flu symptoms and sickness and diarrhoea! This was the the first vaccine I’d had since starting Venetoclax treatment so I don’t know if the severe side effects were due to this or because it was the new bivalent vaccine. I’m having my booster on Saturday and I’m dreading it!!! I have seriously considered not having it because of the serious reaction.

Tabbytabby profile image
Tabbytabby in reply toHJ_2

I dread getting the new bivalent vaccine, too! I finished Gazyva in July and am currently taking 400 mg Venetoclax. I have had terrible side effects from the vaccine boosters in the past and I was not on treatment then. Now, I am very nervous about getting the new vaccine and dread it, too! Good luck for a mild reaction.

SofiaDeo profile image
SofiaDeo in reply toTabbytabby

If one brand causes a reaction, see if a different one is possible. The " inert ingredient" excipients and adjuvants are different, and it's possible one is reacting to that. I am not reacting to the Pfizer and plan on continuing with it if possible; my partner has done the Moderna & he is happy with that. I want to be in a more stringently controlled room instead of the local pharmacy, so I drive further to go to a facility that fortunately uses a brand I don't get side effects from.

Here's a list of excipients for the various formulations.

pharmaexcipients.com/news/c...

I like to avoid Polysorbate 80 since people have occasionally had allergic type reactions to it.

link.springer.com/article/1...

The amounts used in the vaccines are small, but people have reacted. If you are having reactions to Covid boosters, consider checking the brand, and if it contains Polysorbate 80 see if another brand that doesn't have it is available, and if you also react to the different brand.

Tabbytabby profile image
Tabbytabby in reply toSofiaDeo

Thank you for the information. I have had both the Moderna and Pfizer vaccine with the same reaction to both. Looking at the charts you sent, I appears neither contain Polysorbate 80. Now that I am taking Venetoclax, I am worried if my reaction will be even worse. I will have to make a decision soon whether I take the leap and get the booster or pass this time. Thanks again for your response.

noeagaman profile image
noeagaman

I guess that I am lucky. I have not had any reactions to the vaccine besides a mild headache after a few of them. I hope this clears up for you.

Poodle2 profile image
Poodle2

I'm sorry to hear about your reactions but to put it blantly - it's better than getting covid and ending up in the hospital on a ventilator. You just have to look at it this way. Hope you feel better soon.

Kvb-texas profile image
Kvb-texas

hmmm. According to a study by Journal of the American Medical Association, JAMA Network…. protection drops by 52.8% the first month! And then continues to drop to only 14% after six months.

abcnews.go.com/Health/covid...

This was before the new variants… but, it’s always going to be a moving target.

To me…. the waning benefit doesn’t outweigh the risk and the severe side effects that many of us have experienced. After experiencing Covid, I am a lot less frightened by it… plus I have the added protection of natural immunity for a while. I am more frightened by my reaction to the one shot I did get. As someone with CLL… Covid is way down on my list of worries. With inflation the way it is, I am more concerned about outliving my retirement at this point. Hope you get to feeling better soon!

Kvbtexas

dandodex profile image
dandodex in reply toKvb-texas

Protection against infection does drop off rapidly, yes, we have known about that for a long time. The article also states that protection against severe illness, hospitalizations and death remains high. Any reason why you ommited that?

Kvb-texas profile image
Kvb-texas in reply todandodex

That is a good point. And the most recent data shows that this is mostly true for those who have multiple comorbidities and the riskiest comorbidities such as obesity. I was speaking for myself. I had a severe reaction to the first shot and didn’t receive any others. My CLL specialist no longer even recommends boosters and shared with me that he didn’t lose any patients to Covid who weren’t severely overweight. But, with CLL, we know that we all have unique experiences and need to do our own evaluation with people we trust without being intimidated into something that may not be right for our situation. I think it is smart and healthy to be our own advocates and have a healthy sense of skepticism. I wish you well.

Kvbtexas

Suzie42 profile image
Suzie42

I had my 7th vaccine in May and had a bad reaction, flu symptoms etc lasting 3 days. My 3rd vaccine had a bad reaction, vomiting for 24hrs. All the other ones just had a sore arm. I have CLL and IPF (lung fibrosis) and these vaccines have saved my life. I had covid last Oct and only suffered a sore throat. My chest and haematology consultants both said I'm really lucky. Sensible to keep having jabs I think.

claree_ford profile image
claree_ford

I had my seventh jab last month, felt grotty for three days including finding a lymph node (which went down again a bit later). A few weeks before that I caught a cold - just a common cold - there was “a lot of it about” - people were feeling grotty for two or three days. Took me a fortnight to shake it off and another to get rid of the cough.

Everyone’s personal decision, but I’m going to go on having every booster they offer. Bit like going to the dentist really (I have a root canal coming up), short term known pain to try and avoid something worse in the future.

Best wishes to you. Clare

Ruduo21 profile image
Ruduo21

I’m having very bad reactions after each vaccine, last one I had 3 weeks ago, was shivering and temperature, feeling sick and headaches with pain moving to my eyes and eyes teeth. My arm still tender, don’t know if I want to do any more.

Bubnojay profile image
Bubnojay

Thirteen years of CLL and watch and wait, I have yet to experience any effect from the covid vaccine jabs. One has to wonder if any protection has been afforded me from the vaccines. I consider being 80+ makes me more at risk. So I continue to be an assiduous FFP3 mask wearer and live a limited life.

Bubnojay

NaturalWaze profile image
NaturalWaze

Yes! Every single Covid shot, and flu too. Low grade fever, chills, achiness, bed for at least 2 days.

Qualicum profile image
Qualicum

yes I have reactions also just had my 6 th and lethargic not well at all but mainly swollen lymph nodes under the arm and below my ear. They go down after a week. But about 3 days I feel extremely ordinary. But I fall into the overweight category and type 2 diabetes. I did get covid last December and got through that with a supposed good antibodies from the vaccination so I don’t know how sick I would have been without those antibodies. Got another shot two weeks ago because my antibodies had dropped right down.

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