Will You Be Getting the Covid Vaccine?
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ljimbo423
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I get temporary tinnitus when I take anything that boosts my immune system. It's always temporary but can be really annoying and sometimes scary loud.
I wonder if that might be what's causing some of the tinnitus in people getting the vaccine. The vaccine boosts the immune system temporarily.
Gingergrrl
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What autoimmune issues do you have (and I apologize if you have explained it and I missed it or am forgetting)! I am very interested in how people with autoimmunity react to the various vaccines. Thanks!
I don't want to discourage anyone from getting the vaccine, but I want to report that I had severe side effects from my second dose of the Moderna vaccine over the first 30 or so hours after getting it. I ran a fever over 102 F with night sweats. I also developed severe muscle cramps and pain, along with joint pain, and a burning sensation on my skin over my entire body...from scalp to toes. My normal ME/CFS pain is bad, and this was way beyond that. I just think this is something people should know about if they have a choice about which vaccine they receive. I also have a swollen lymph node on my left clavicle--which my doctor informed me was a normal side effect of vaccines. My arm remains sore, but this was my only noticeable side effect that I had with the first vaccine.
Thanks for sharing. Sorry you had such magnified side effects. When did you have the second shot?
Has everything other than the sore arm cleared up?
Still experiencing joints that are more sore than usual, my temperature is 100.8, and I have the swollen lymph node. But given my general ME/CFS state, I'm feeling much better than I was yesterday. I heard "normal" people complaining about the second dose of Moderna and was expecting a crash-like situation, but this exceeded that...I was truly shocked at how intense it was. We have weird immune systems...
I'm at 59 hours. It was the first 30 that were hell, but to be fair they symptoms began about 12 hours after the injection. My body was so sore and sensitive everywhere, it hurt to breath. Not trying to be dramatic, it was intense and makes me think about the poor folks that have endured the "cytokine storms" after contracting Covid-19.
Aww...thank you!
PisForPerseverance
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Has waiting longer to get the second dose as something that might reduce severity of response to second one been talked about? @Diwi9 awful. Was all of that manageable enough for you to sleep? I'm sorry. I'm so nervous for tomorrow. But I guess much more nervous for second shot. Tomorrow's first. I don't know the last time I've had a high fever and I'm a little afraid of what it would be like if I do considering what I get system wide when I'm in a particular flu like flare and less than 100F (super intense neurological and emotional symptoms, mcas and dysautonomia flare, in addition to burning hot and shaky and increased weakness). Now I kind of want an 100 degree fever to maybe show me I can handle a 102 the second time around. I hope high doses of Tylenol would be enough to keep me from serious distress. I've got boswellia and curcumin lined up but I just got new forms so I don't know how they work yet. Extra antihistamines. Extra antioxidants. In case people might find these strategies useful.
In case people didn't see, Nancy klimas is recommending antihistamines day of and several days after (she actually said strongest one you can get aka Benadryl, but I'm just doing my regular ones) for all mecfs people and didn't specify only people with mcas but just out of concern for mast cell involvement in potential inflammation to help prevent a bad response or a worsening of disease. So if you know you tolerate antihistamines, might be something to think about
In case people didn't see, Nancy klimas is recommending antihistamines day of and several days after (she actually said strongest one you can get aka Benadryl, but I'm just doing my regular ones) for all mecfs people and didn't specify only people with mcas but just out of concern for mast cell involvement in potential inflammation to help prevent a bad response or a worsening of disease. So if you know you tolerate antihistamines, might be something to think about
Good luck tomorrow!
Let us know how it goes.
I too have been thinking about, "What does a 101 degree fever feel like?"
I think we have to just let ourselves feel however we feel. The few days should go by quickly.
As my husband likes to tell me, "Brave and courageous!"
PS. To clarify, it's not recommended to take the antihistamines BEFORE you receive the vaccine.
I'm getting my courage up to go for the Pfizer. I had been waiting on J&J and was getting ready to sign up but knowing my history with little blood bleeds/clots of capillaries in skin post-viruses (petechiae, pupura, cherry angiomas) I just don't want to risk it, even though chance of a bad event is so slim. I know my own body better than anyone who tells me not to worry about it. I do think adenovirus plus covid-19 spike proteins is too much considering my reaction to adenovirus alone.
For Pfizer I was hesitant for the allergic reactions but that seems a lot more manageable condition should something go wrong. I'm allergic to shellfish and contrast dye. I had a reaction to a cosmetic product that had PEG but that was a skin reaction so maybe different from internal? Who knows.
I'm going to try and wait a little longer than the 30 minutes since I live so far away from the hospital. That's the part that makes me nervous. I don't have an epi-pen and I'd be nervous to inject one myself if I did!
Luckily I have time to wait. No virus in my area and I haven't been inside a public place since this began, and I don't plan to til it's over. So even once I get the vaccine it's kind of wasted on me!
For Pfizer I was hesitant for the allergic reactions but that seems a lot more manageable condition should something go wrong. I'm allergic to shellfish and contrast dye. I had a reaction to a cosmetic product that had PEG but that was a skin reaction so maybe different from internal? Who knows.
I'm going to try and wait a little longer than the 30 minutes since I live so far away from the hospital. That's the part that makes me nervous. I don't have an epi-pen and I'd be nervous to inject one myself if I did!
Luckily I have time to wait. No virus in my area and I haven't been inside a public place since this began, and I don't plan to til it's over. So even once I get the vaccine it's kind of wasted on me!
Here they are spacing out the second shot to get a first shot for more people, but I also wonder if leaving the second shot for a longer period would lessen side effects for the second one. They are waiting four months to give a second shot in my province, but as far as I know we are the only place doing that. It seems most of the immunity comes form the first shot and the worst side effects come from the second. I plan to get the first one but if I have much of a reaction at all I would be inclined not to get the second. The latest stats were something like 80% after the first shot and 90% after the second(only 10% more) so the cost/benefit ratio changes quite a bit.
@Diwi9 I hope you are feeling better. Thanks for telling us about happened to you.
@Diwi9 I hope you are feeling better. Thanks for telling us about happened to you.
@PisForPerseverance - Oddly, I didn't even notice the fever, just the pain. But, I realized it was probably a reaction and so I took my temperature and that let me know this was a reaction to the vaccine. Based on all I've read, Moderna is throwing the worst side effects. The first dose wasn't an issue, but I would research/talk to a specialist (if you have one) prior to the second dose. If Nancy Klimas is giving that advice, she's aware that with our wonky immune systems, the booster is hitting some of us hard. I'd rather go through what I did than a Covid infection, but I would have liked to know what to expect and maybe prepare, especially with some meds if available to help.
Best wishes to you.
Best wishes to you.
Also, sorry to fail to respond...spacing wasn't an option here. We are assigned date frames, nothing has been done to accommodate or consider my illness. And, no, I wasn't able to sleep the first night, too much pain.
I've been thinking the same on the second shot. It looks like they have to do the second shots because that is what was approved via the trials. J&J did their trials with 1 shot so that is what they got approved for.
I think the one shot Pfizer and Moderna likely protect against hospitalization and death to the same degree as the 1 shot J&J.
The other concern was that if the vaccines didn't confer enough immunity that it would facilitate variants. But with 82% effectiveness with 1 shot I don't think that's going to be the case.
The initial time frame and need for double doses was a best estimate at the time, based on very new science. It's all changing as the situation evolves and those guidelines can always be revised. There no guarantee of effectiveness anyway so it's not like changing the schedule of a medication that is proven to need a certain timing. Forcing people to adhere to a rigid dosing schedule certainly isn't going to encourage uptake of the vaccines.
PisForPerseverance
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@Booble thanks I wish you luck too. If you think you might ever need an EpiPen for anything, it's good to have one. But very scary to think about injecting yes! Luckily mine hasn't been used ever. Premedication is an important part of mcas management. The Mast Cell Society's guidance is take an h1 one hour before vaccine. An h2 and Tylenol are part of my premedication protocol as well. Are you saying you know of a recommendation to specifically not take them before for non mcas folks or are you reading Nancy klimas' mecfs recommendation and she says the word "after" ? I know you're scared of the vaccine and I think that your plan sounds like a good one. This is such scary stuff. Courageous!
PisForPerseverance
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@Diwi9 are you saying that response was from your second dose? I thought it was from your first. Which is why I got more nervous about today. Haven't had it yet. I can do the second at 6 weeks if I don't want to do 3 and I'm sure I can after that too so I'll look into it. I wonder about other therapies that might be helpful after besides medications and supplements. Vitamin c iv, ozone iv... Since these are accessible to me and part of my treatment anyway (vitamin c is not currently) then I wonder about doing these stronger therapies the day after or even same day and whether it would mess with the intended vaccine response. I doubt it but I wonder about vitamin c. I'll ask my doctor. As part of reducing strain on the body both for short term and the potential long term impacts of strains and insults to our system. Even strains and insults that aren't obviously or dramatically making us worse can potentially still be cumulative and delayed and make us worse I believe. I'm understanding more that to the extent that one can reduce any source of strain or difficulty on/in the body, not just from exertion, the better we do. While I've always been trying to get better, I'm now placing more importance on reducing my load on a daily moment to moment basis, not just learning how to pace better but with everything I have some degree of control of, which obviously that window of what a person has any control or management of or access to treatments for, varies from person to person. Some already know and practice this concept deeply, some are learning this, and many obviously still have no idea of the concept of pacing and the long term effects of exertion and other strains.
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