After 4 or 5 covid vaccines with very minimal side effects , the most recent vaccine left me sick with fever and several lymph nodes swelling up within a few days.
2 nodes in armpit under the vaccine were extremely swollen and very painful. so much so, that I could not sleep on that side for weeks .
Fever did reach almost 101 for a few days, but I could not bear another hospital trip again at night, and have my wife sit in a plastic chair for 6,7 or 8 hours and then, maybe get admitted for observation.
Doc said do NOT take ibuprofen, even though it's the most effective way to lower a "high" temperature.
I don't understand this aversion to one or two Ibuprofen, when other treatments such as chemo, and Venetoclax,9which almost killed me), are much more toxic and go on for months if not years.
?? How many CLL patients have had strong reactions to a covid vaccines, and what's the general attitude around ibuprofen?
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If you have any problem with platelets, your doctor may not want you taking ibuprofen.
Not to mention, some theorize taking an *anti inflammatory* when you are *trying* to stimulate an inflammatory immune reaction may dampen the effect of a vaccine. There's no hard proof of this, but I can imagine a doctor may not want any chance of impairment of an immune compromised patient who has problems mounting an immune response.
FWIW ibuprofen is not considered "the most effective way to lower a temperature." Acetaminophen/paracetamol is considered overall to have fewer side effects than any NSAID. Ibuprofen may be more potent in a dose comparison, but taking into consideration it has a higher risk of side effects, acetaminophen is considered the winner lolol!
I had an ibuprofen drug induced autoimmune hemolytic anemia last year. 200mg 3-4 times a day, for a little over a month, brought it on. I was taking it to control pain and inflammation in a knee while awaiting surgery, the meniscus tears weren't severe enough to bump me up to emergency surgery.
There is still quite an amount of debate about stopping or riding out a fever in healthy people (within a reasonable time and range of temperature).
That being the case, we do know we are not normal people. Which doctor did you consult? It is a hard habit to break if you are used to contacting your GP/PCP rather than your Hemo/Onc.
So, one way a person could think of it is this way. My Hemo/Onc is probably the one encouraging me to get vaccinated because my immune system is not like a healthy person. Therefore, their guidance about fever reduction may have a rationale that a doctor who treats normal sick people may not be thinking about.
Perhaps someone else feels there is an alternate way to look at the problem, so don't rely on my opinion. However, I'm still in the process of retraining myself to route my inquiries in a different order that may be more inline with CLL.
Well, I've heard horror stories about ibuprofen abuse ie people taking it every single day ,in the range of 1200 mg and more. I don't know the maximum daily dose, because I have heeded all the warnings around ibuprofen. ANd there are a great many contraindications including deleterious effects on the heart. Unfortunately it seems to work better than narcotics for me. My oncologist stated emphatically, to me "I would never take an ibuprofen" I do think it's a badass drug but so many people get great relief from it. I'm a carpenter and I know so many men whose lunch boxes are never without ibuuprofen. It is VERY effective among the people who must abuse their bodies to make a living. Then there's the odd predicament of being told to go to hospital with fever over 100.4 and knowing that one single ibu' will alleviate a 6 or 8 hour emergency room visit for simple hydration and a shot or two of some I'V'narcotic and then get sent home after a long sleepless night and having to see my wife just sit there .It's a predicament .Thanks for your feedback. Sofia Deo mentioned the affect ibu' can have on platelets and that's news to me that I will have to check out because I'm hovering at a platelet count of 100 and a dip below for any extended period of time will be cause for a third line treatment in my case. I'm 7 years into CLL or Lymphoma depending on the oncology MD's opinion.Venetoclax almost put me 6 feet under, on two if not three occasions. So, naturally ,I'm putting off treatment as long as is possible. Thanks again for your input and good luck to you .Thanks Humaniquarian Robert. I like your handle " Spark_Plug, by the way.
The issue with NSAIDs like ibuprofen, is that they can adversely impact bone marrow production - which not what you want when CLL is also doing the same. My CLL specialists have accordingly recommended I take acetaminophen/paracetamol (marketed as Tylenol, Panadol or APAP depending on where you live), for fever or pain management.
The issue with acetaminophen/paracetamol, is that while it's very effective, there's very little margin between an effective and a toxic dose.
With respect to the platelet count trigger for starting treatment, the latest (2018) iwCLL guidelines allow for watch and wait to continue with a platelet count below 100, provided it is stable. My platelet counts gradually dropped into the low 50s prior to my first treatment and reached a nadir of 29 before responding to treatment. Ironically, I needed a couple of packed red blood cell transfusions to get me through the first month of treatment, despite my haemoglobin only dropping to 105 prior to commencing treatment. We are all different in how we tolerate treatment and treatment supportive drugs.
I hear you loud and clear! Acetaminophen doesn't do squat for me, in the headache department. I cannot take opiates, nor amitriptyline. (I guess I'm part horse with a tendency toward seizures).
The only thing I've been able to do (personally, not a suggestion to the public) is wait after a cup of coffee and see if it subsides. If it doesn't, I take one tablet and just hope I'm not messing up too badly.
I do want to ask about one medicine I've been researching but until I get the yea or nay from some doctors the jury is out.
That's extremely interesting about the coffee. Aside from loving coffee what do you think may be the cause for a caffeine intervention??? and particularly with regard to headaches. It may be something I want to try sometime. It certainly is harmless enough. wouldn't it be grand if "Oh, you have severe migraines , drink 3 cups of coffee , and you'll be cured"
So how does caffeine help with headaches? First of all, it helps reduce inflammation. When you have a headache, changes to your blood vessels lead to increased blood flow around your brain. This puts pressures on nerves in the area, leading to head pain. But caffeine narrows the blood vessels, which decreases the pressure and eases pain. This effect is stronger in people who use caffeine only once in awhile.
Caffeine gives a boost to common headache remedies in part by helping your body to absorb them. Whether you use aspirin, ibuprofen, or acetaminophen, they work faster and better and keep the pain away longer when combined with caffeine.
The two are not related just not viable for pain relief in my case.
Opiates do not truly ease pain only dull the emotions and perception of pain, one cannot really be very productive in many areas on opiates, finally, perhaps you've heard heroin called "horse". That is because when administered to horses before a race, their flight response would kick in to high gear. I do not sleep when I've been prescribed them over the years. So, prolonged lack of sleep, hypervigilance, and the return to normal makes for something only reserved for post-op issues.
With regard to amitriptyline, an anti-seizure medicine used off label for migraines, actually triggered seizures in my sleep so they were discontinued.
I've discussed fever with my MD from a general point of view . There is, among parents in particular, "Fever Phobia". The inclination to knock down a fever before the immune system has a chance to do what it does so perfectly: fight infection. I had 104 during a bout of stomach infection and was in severe shake and bake mode, complete with some hallucinating. I remember shaking&shivering so severely that I was bouncing up and down in the hospital bed, the fever broke suddenly as if a switch had been turned off.I had not been given any medication at all , and calmed in to a blissful sleep.
Latest COVID jab (number 8 I think, Moderna) left me feeling as though I'd been run over by a truck. Last few jabs had been non eventful, so a bit of a surprise. 48 hours on, I've got a very sore arm but other symptoms are abating. Paracetamol didn't really help much, but I don't take NSAIDs as they drill holes in my stomach. I had Covid in February, so perhaps that made some difference?
Had my 9th jab on Tuesday (felt fine), Wednesday (yesterday) by midday I felt incredibly cold and couldn’t warm up. Temperature went up to 100.5c and stayed in bed most of the day. Today I feel wiped out but I’m out the other side. Still better than getting Covid.
I recently got the Moderna booster, (7th Moderna). By the next day I had quite a sore arm and an elevated temp up to 102.8F. Stayed in bed mostly that second day after the shot and woke up into day 3 feeling fine again.
This my common pattern after covid shots. I lose one day to fever and malaise then fine. I do not take acetaminophen or any fever reducers.
I've had a reaction to every Covid shot I have had (6 now). The last one was the worst, 5 days in bed, fever, headache, aches, nausea. My hem/onc suggested perhaps I should not continue to get them since each reaction seemed progressively worse. I'm still debating it.
When I first noticed swelling under my arm before being diagnosed with SLL, my doctor asked if I had had a Covid shot recently. Another reason I won’t get get the Covid vaccine. When I started taking Acalabrutinib I was told not to take ibuprofen because it thins the blood as does the acalabrutinib. I was taken to the emergency room for severe headaches that would not go away. In fact I passed out from it. Since nothing else worked, the doctors wanted to give me a massive dose of ibuprofen. My oncologist told them to go ahead as this one time should be ok. That did the trick.
With respect to swelling under your arm after a COVID-19 vaccination, this should be seen as a positive indicator that your body most likely received an immunity boost from your vaccination. That's because vaccinations work through dendritic cells taking the vaccine proteins injected in the muscle to the nodes in your armpit. It's in the germinal centres of those nodes, where B and T cells multiply, causing the temporary swelling, as they try to find the best matching cells to identify and fight the virus if we are subsequently exposed. The nodes gradually shrink back to normal as the unmatched B and T cells undergo apoptosis, while the mature matched B plasma cells migrate to the bone marrow and churn out antibodies/immunoglobulins.
It's the resulting immunoglobulins and memory B and T cells which continually circulate in your blood, which are ever on the alert to protect you from viral exposure. If you have enough immunoglobulins to neutralise any viruses that get through your defences (masking, neutrophils, etc), you won't even know you were exposed. If enough viruses get by your defenses to invade cells and turn them into virus factories, you need those T cells to recognise and destroy the invaded cells and memory B cells to quickly switch to plasma cells, churning out more neutralising antibodies.
Nodes temporarily swelling are a recognised side effect of vaccinations in healthy folk. This is also why nodes in your neck swell in response to respiratory infections.
My CLL began as SLL and I had low immunoglobulin counts at diagnosis, which further worsened over time, as CLL/SLL impacted my ability to respond to infections and vaccinations. My armpit nodes don't swell after vaccinations. Be thankful that yours do.
The thing is that it wasn’t caused by a vaccine as I haven’t been vaccinated against anything in a few years. I’ve been a very healthy person until I noticed the swelling under my arm. Other than my SLL, I’ve remained healthy. I’m on one Acalabrutinib a day and feel like my old self again. I’ll know better in a couple of months after a Pet Scan if things are hopefully improving lymph node wise.
I've never had a reaction to COVID vaccine (previous 7 came from AstraZenica, Pfizer and Moderna) but missed last autumn's shot as it didn't seem necessary as I went down with COVID just before it was due... However, this week's Moderna Spikevax XBB.1.5 COVID-19 mRNA Vaccine has hit me with a sore / swollen arm still showing days later. I hope this isn't significant, as my annual consultation and associated blood tests due at the beginning of this month has been postponed to the end of August. 🤔
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