SMA News Forums › Forums › Coronavirus (COVID-19) and SMA › To be vaccinated or not to be
To be vaccinated or not to bePosted by Angela J. on October 18, 2021 at 4:09 pm
Hey everyone! So I’m really in need of advice regarding the vaccine. I really don’t want to get it in fear of how my body will react to it, especially considering that a vaccine is literally a small dose of the actual virus. I’m worried I could get really sick from the vaccine since my immune system isn’t really strong. I’m afraid of getting bad congestion or shortness of breath (since those are symptoms of covid, and the vaccine is a small dose of the virus), and my lungs are very small so it’s hard for me to cough and breathe deeply. I’m just really worried about how my body will react and tolerate the vaccine. I read some posts on here and I know some of you guys said you didn’t really get any symptoms but everyone’s body is different in terms of their SMA. I really don’t want the vaccine, but I also don’t wanna have to worry about getting covid for the rest of my life, and I certainly don’t wanna stay in the house and not go anywhere for the rest of my life. I also can’t wear a mask because it’s very difficult for me to breathe with it on since my lungs are very weak, so I wear this thick wheelchair poncho over my chair to cover me up whenever I have to go somewhere with my parents. Of course the poncho isn’t as protective as a mask because it’s not completely enclosed around me, so I’m still at risk of getting covid whenever I have to go somewhere with my parents. I’m really not sure what to do because I’m really worried about how my body will react to the vaccine, but I also know I’d be a lot more protected from covid and I would be able to go places again. Could you guys please give me advice on what I should do, and maybe share all your symptoms from the vaccine? Has anyone gotten very sick from it, like bad congestion or shortness of breath?Tammy replied 1 year, 7 months ago 10 Members · 19 Replies
Alyssa SilvaMemberOctober 18, 2021 at 4:24 pm
Hey Angela. I strongly recommend talking to a doctor to help you arrive at your decision. I had similar fears that were communicated well to my doctors even though I knew I was going to get it regardless. They helped ease my fears.
For me, I had no symptoms after the first shot but did after the second. I was really run down and had a mild fever for about 24 hours. After that, I was right back to my baseline!
Today, I’m planning to get my booster. Like yourself, I can’t wear masks (which limits me a lot), so having that vaccine protection is important to me.
TammyMemberOctober 18, 2021 at 4:30 pm
If I were you I would talk to your pulmonologist about it. Voice your concerns. Also do you have a BiPAP machine or cough assist? Reason I ask is because those machines could come in handy if you are worried about having trouble breathing because of a reaction. I personally suggest getting it but I’m also not a doctor so don’t just go by me. I got the Pfizer vaccine and I know other people with sma who got vaccinated as well. I had no issues other than a sore arm after the second dose and a feeling of extreme exhaustion the next day which was no big deal because I had a few shots of espresso and felt immensely better about 30 minutes after drinking the espresso LOL. It’s hard to say because like you said, we are all different. But I personally don’t know anyone who had breathing issues after receiving the vaccine. But I am also reasonably healthy in the lung department and don’t have any issues breathing with or without a mask so like I said, it’s hard for me to say. But I would definitely speak to your doctor and ask his or her advice. I personally feel that the benefits outweigh the risks because nobody wants to stay locked up forever and this stuff is not going away anytime soon. And it’s also better than getting the actual virus. The most I’ve heard from anyone is that they get headaches, fevers, chills and feel tired. That’s about all I’ve heard from everyone
JeremyMemberOctober 18, 2021 at 4:55 pm
My arm was a little sore for a few days after the 2nd shot. I also had a mild headache for about 12hrs but I get those occasionally and don’t even know that was related to the vaccine. The risks of the vaccine are small compared to that of getting COVID while unvaccinated. Unless you’re unable to get vaccinated because of allergies to it’s constituent parts or something along those lines I can’t imagine the vaccine being the bigger risk. But as Alyssa already mentioned, you should talk to your doctor.
mRNA vaccines don’t use an actual virus BTW. Even vaccines that do use a weak or inactive virus are much safer than catching the actual virus while being unvaccinated.
Yvette HaasMemberOctober 18, 2021 at 6:26 pm
Okay… I’ll be the outcast here who says that I did not get it and have no plans to do so. Disclaimer: I’m NOT an anti-vaxxer, and I have never been strongly against any injection before this year. Personally, I’m not getting this one because I don’t recommend it to anyone. Yes, I understand the risks… I have been researching it for 11 months. That is why I’m so firm in my decision. That said, I believe everyone should make their own choice after doing their own research. I would not tell you to not take it, but I wanted you to know that not all of us have had it.
DeAnn RMemberOctober 18, 2021 at 7:59 pm
Yvette, I’m just curious as to why you’re against this vaccine. I always find it interesting to hear the reasoning behind the choices.
Yvette HaasMemberOctober 18, 2021 at 11:28 pm
Some of my biggest concerns revolve around their mechanisms of action, the fact that they do nothing to stop transmission, their ingredients, the likelihood that they are pushing variants, the risk of ADE, the numbers coming from the countries with the highest rates of injections, increased viral loads, and their effect on one’s overall immune system. I’d be happy to share information on any of these if you would like specifics.
DeAnn RMemberOctober 19, 2021 at 10:59 am
Thank you for your perspective.
DeAnn RMemberOctober 18, 2021 at 7:54 pm
It’s a very personal decision. You should certainly consult your doctor regarding your concerns. Maybe you could do a video consultation to talk about it. Personally I’ve had my initial two shots and got the booster almost two weeks ago. I didn’t have any adverse reactions. I tend to tolerate vaccines well. So far I haven’t personally heard from anyone who has been vaccinated and wishes they hadn’t gotten the vaccine. I do know of some breakthrough Covid cases though, so that’s disappointing. Since I can’t control what other people do (I wish more around me would be vaccinated) getting the vaccine myself just gives me a little piece of mind.
Dennis TurnerMemberOctober 18, 2021 at 8:13 pm
I would agree with Alyssa. Talk to your doctor.
As Jeremy said if you can get either the Pfizer or Moderna, there is NO actual virus involved. Still check with your doctor. He or she knows you best.
If I were you I’d talk to your pulmonologist about it. Voice your concerns. Also do you have a BiPAP machine or cough assist? Reason I ask is because those machines could come in handy if you are worried about having trouble breathing because of a reaction. I personally suggest getting it but I’m also not a doctor so don’t just go by me. I got the Pfizer vaccine and I know other people with sma who got vaccinated as well. I had no issues other than a sore arm after the 2nd dose and a feeling of extreme exhaustion the next day which was no big deal because I had a few shots of espresso and felt immensely better about 30 minutes after drinking the espresso LOL. It’s hard to say because like you said, we are all different. But I personally don’t know anyone who had breathing issues after receiving the vaccine. But I am also reasonably healthy in the lung department and don’t have any issues breathing with or without a mask so like I said, it’s hard for me to say. But I would definitely speak to your doctor and ask his or her advice. I personally feel that the benefits outweigh the risks because nobody wants to stay locked up forever and this stuff is not going away anytime soon. And it’s also better than getting the actual virus. The most I’ve heard from anyone is that they get headaches, fevers, chills and feel tired. That’s about all I’ve heard from everyone
Also I apologize in advance if my reply posted more than once. For some reason this forum can be glitchy on my phone
AdamMemberOctober 18, 2021 at 9:03 pm
I figure I’m toast if I get C19, that’s almost certain to happen without the vax. The vax like anything has risks too but the odds are much better. I’m more likely to die in a road accident on my way home than vax complications.
I’m interested to know what “I did my own research” involves for people who say that. Like, you been slaving away in the laboratory utilizing all your years of medical expertise to come up with some stuff 1000s of scientists & docs across the globe might’ve overlooked?
Speak with your trusted professionals.
Yvette HaasMemberOctober 19, 2021 at 12:08 am
I won’t speak for others, but personally, I follow the Merriam-Webster definition of the word “Research”:
1: careful or diligent search
2: studious inquiry or examination
especially: investigation or experimentation aimed at the discovery and interpretation of facts, revision of accepted theories or laws in the light of new facts, or practical application of such new or revised theories or laws
3: the collecting of information about a particular subject
Kelly MillerMemberOctober 19, 2021 at 3:01 pm
One of the things I’ve always liked about this forum is we’ve been able to express our opinions about anything, especially medical, without fear of repercussion or being attacked for those opinions. Like several of you have already spoken here on this topic, I have strong ideas/opinions/preferences about this. I’m going to try very hard to keep my statements expressed with “I” instead of “you” or “we” so that I only represent myself and not anyone else who I really don’t know what they’ve done or how they truly feel.
It was mentioned earlier in this thread that there had not been heard from anyone who had the vaccine but was now regretting this decision. Well, I am raising my hand now as one of those very people. No, I haven’t had any ill effects from getting the shots, but I got them in the beginning stages of their release to the public, and now I wish I had not b/c of the research I’ve done after the fact. Much like the way I explored the information about Spinraza, Zolgensma, and Evrysdi, I have now put the effort into exploring the shots released to “protect” us from Covid-19.
I don’t feel the need to report the information I’ve learned since it’s all available online to anyone wanting to know it. I won’t insult anyone by questioning the research methods of others, but I will openly accept them as I did those during our discussions of the possibilities of the SMA treatments. I will say that my research has included info from doctors who are just as renowned in their fields as Dr Fauci. They are from institutions just as renowned as well, here and abroad.
What I don’t understand is the anger, and even hatred, that spews out at people who have made a choice about what they want to put in their bodies. I know people who have said to me that I’m endangering them by not getting the booster shot. I disagree with their stance, BUT I respect their right to feel that way and to stay away from me. What happened to respecting the voices from either side of an argument? I’m trying to truly question the authority rather than being a lemming going over the cliff just b/c someone says follow me.
I’ve had so many doctors in my entire life who don’t know how to treat me and my respiratory issues. I’ll give an example that I think a lot of people on this forum can relate to. January 2020, I went to the ER with the symptoms of a fast attacking pneumonia. As soon as we got there, I coded. The doctors decided, after getting me breathing again, to put me in a coma to let me get rest. The doctors told my husband after only 4 days of intubation that I needed a trach b/c it was too long on a vent. They also told him I was having seizures b/c my mouth was twitching (never had a seizure in all my 58 yrs). My husband questioned those Drs and had them send me to Mayo (in Fl). In 5 minutes of observation, Mayo’s neurologist said it was not seizures but over medication. Then they sent me to a short-term rehab for a team of Drs who had a lot of letters behind their MDs b/c they specialized in respiratory care. They proceeded to try to ween me off the vent and remove the trach, but they were using the methods used on people with normal muscle strength in their diaphragms and chests. We tried to explain how to ween me by using a BiPAP. These so-called “authorities” said it wouldn’t work. We contacted one of SMA’s most famous outliers who invented and perfected the BiPAP technique, Dr John Bach. These 5 Drs (I use the term loosely) refused to even talk to Dr Bach! Because of these 5 authoities I couldn’t be weened, my breathing muscles weakened after 4 months of lying in bed on a machine, and now I’ll be on a vent thru a trach for the rest of my life. So much for medical authority.
Kelly MillerMemberOctober 19, 2021 at 7:11 pm
My point about those was that I didn’t just say eenie, meenie, mini, moe to pick which I wanted to do. I read the material you’ve so graciously provided back then. I spoke with Reps from the companies, and I thoughtfully considered the methods of application. All of this was done before I made the decision as to which I wanted to take. Not only that, I periodically reevaluate what I think the drug is doing for me, what it’s not doing for me, and whether I want to continue to put it in my body. You’re correct when you say the three SMA treatments didn’t have very much data in regards to doing trials, and that was something I took into account before I said yes. Nobody hated me or spoke hateful things against me for my decision.
What about the decision we’ve all had to make in our lives here: whether or not to have spinal fusions. Again, it was a personal decision where different things were considered by my parents before we gave the Dr our answer. Things like what were the chances the surgery would be a good thing for me, what would the recovery period look like, how would this affect our family finances. I have never been criticized for the decision we made about this, although people do have differing opinions on it also. We all do research everyday about all sorts of things that affect our lives and the lives of others.
TammyMemberOctober 19, 2021 at 9:32 pm
I’m definitely all for people making their own decisions. I always recommend people do what they want to do and what they feel is right for them. As an adult from New Jersey I know who Dr. Bach is because he’s from NJ. To be honest I never cared him for him and definitely never portrayed to be any kind of hero. I used to be his patient and left a long time ago. I also know several other patients who were giving what they viewed as horrible medical advice by him. Again that’s not to say that he hasn’t helped others, like the way he helped you. Which is fantastic! And I’m so glad that he did not steer you in the wrong direction as the other doctors did. But my personal experience with him was not very good. I think in general some doctors are good with some patients and not good with others. Depending on what their individual issues are. Now I have a pulmonologist who I absolutely love and who is the kindest and most helpful person I’ve had probably in my whole life. Not to say that the other pulmonologists I have had in the past weren’t good too but he is just on a whole different level. But anyway… I do agree that people to do what’s best for them
Yvette HaasMemberOctober 19, 2021 at 10:20 pm
I think you have summed it up well. Different people, different doctors, different research, different findings, different choices… And that should be okay. We should be able to live our lives and accept others while they do the same, differently.
TammyMemberOctober 20, 2021 at 1:39 pm
Thanks! At least I tried to LOL but I’m definitely never 1 to tell anyone what they should or shouldn’t do. Because I don’t know either situation or their health issues. And just like I mentioned with doctors, I think some work well for certain patients with certain issues and they don’t necessarily work well for other patients with different issues. I think everything is trial and error with us
Jim SchneiderMemberOctober 20, 2021 at 8:14 am
First talk to YOUR doctors and ask their opinion. Second the 2 main vaccines don’t use a live virus so that isn’t an issue. From my research the most common side effects if any are sore arm, slight fever and feeling really tired for a couple of days. Me personally as a 50 year survivor of SMA and one of the high risk elderly, I just wore out for a day or so.
You also have to look at the consequences if you catch COVID without being vaccinated. I knew the odds were I wouldn’t survive COVID with my lungs. After 18 months of being in total lockdown with my wife we felt the vaccine gave us our lives back.
I did talk to Every one of my doctors (5 of them) and they all recommended I get vaccinated. I listened to them not some anonymous voice on the internet.
Hope that helps a little!
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