Have you received the RSV vaccine?

[Carol Volckmann]

I am so sorry Carol you had such a tough time with the side effects to the RSV vaccine. I am schedule to have my shot Oct 4th and I am concerned the side effects are going to hit me. Everything that I have read suggests that having a weakened immune system contributes to harsh side effects. I guess I still want the vaccine as I am hoping the benefits will out weigh short tern agony and knowing the vaccine is good for nearly 2 years.

I hope all is well for you know and you have made it through a really rough time. Sending youvwarm hugs.

[jen-cueva]

Hi, @Carol Volckmann. thank you for sharing your thoughts about the RSV vaccine. You are correct; the weaker our immune system, the more we experience side effects. By reading ahead, you are prepared for some side effects. It’s always better when we are prepared for the worst, this way we will not be surprised.

I’m also assuming you spoke with your healthcare team about the pros and cons of this vaccine for you. It’s so difficult to know what to do and how protective we want to be.

My best friend has sarcoidosis and Friday we were talking about this topic. She said it’s so darn confiusiong trying to decide what to do. As I told her, I plan to carefully discuss this with my PH team and together we will make a decision. Of course, she feels since she is newly diagnosed, she doesn’t have that trust built up yet with her HCP. Also, I said I can sugest what I think but whatr’s good for my body may not be the best for her, and vice versa.

I have to call and schedule my flu shot, so will do that first. Did you both already have your flu vaccines, @Carol alexander and @Carol Volckmann ? Please keep us posted on how things go for you, Carol V.

Also, @Carol alexander , how are you feeling this new week? Did you already discuss these concerns with your doctors?

[Carol Volckmann]

@jen Hi again. My PCP has reconmmend the RSV and I do have it scheduled, but do want to ask my Pulmonologist his thoughts – have that appointment this afternoon.

Both Dick and I will be getting our flu and Covid near the end of Oct. I did have a tough go day after my 2nd booster for covid. But, I dud get both shots at the same time – won’t do that this time. 😒

[jen-cueva]

Hi @Carol Volckmann , I hope that your pulmonary appointment goes well. Please let us know how that goes.

I am waiting to hear back from my PH doctor about the RSV vaccine. I have my flu shot scheduled in a few weeks.

Did you start the new antibiotic for your GI issues already? If so, how’s that been for you? I pray that eventually, you’ll find something that offers you some much-needed relief, my dear PHriend.

[Colleen]

@Carol alexander First, I’m so sorry you had such horrible side effects.

Have you received any other vaccinations close to or following the RSV vaccination? Any chance of crossover complications?

I hope you are starting to feel better.

[Dorothy]

Im so grateful to have read these comments about the RSV vaccine. This week l got both the flu and the latest covid vaccines. I chose not to do them at the same time so that if l had side effects l could know which was the likely culprit for future reference. First the flu shot; the soreness at the site amounted to very little discomfort. Nothing else. That did last 4 days and resolved just before l was due to have the covid vaccine. Covid was the least side effects l have had to date. So now l was feeling invincible and planning to go soon for RSV. Having read this new information it is off my agenda. Sometime soon I would like to read about what to do at home when an event such as vaccine causes worsening shortness of breathe. At the stage l am in, it would not be good. Doti

[jen-cueva]

Hi @Dorothy, I am grateful to hear you had both your Flu and COVID booster without too many side effects. You were smart in waiting a bit in between the two. I am waiting to hear back from my PH team if they are recommending their patients have the RSV vaccine and some questions I had.

It’s frightening to know we could have such horrible side effects. But then again, we always need to remind ourselves that eveyone is different. I think if we were to catch RSV it would be worse on our breathing in general than the vaccine. But it’s a good idea to discuss this and any concerns with our healthcare teams. Then we can make the best decisons for our bodies.

Thank you for sharing, Doti. How have you been otherwise?

[Randolph Reynolds]

Hi Jen

I received a notice that you accepted my friend request. Since we already communicate via the PHA web that notification was odd. Certainly wasn’t from FaceBook.

As for RSV, I have no intention of taking the shot. My palliative care doctor and I discussed the ‘politics’ and the dangers of the Covid and newest vaccination. RSV has not been clinically tested. When the CDC approved it they didn’t mention the fact that in younger people, younger than we are, can have permanent damage from such shots as RSV. Any physician connected with a hospital will not speak out about what the CDC is doing on threat of losing his liscense to practice. That seemed scary enough for me.

Anyway hope all is well with you.

[jen-cueva]

Hi, @Randolph Reynolds, sorry for the confusion. It said you sent me a friend request on the PH News forums. But no big deal, it doesn’t matter if we are friends. Yes, we communicate over here already.

My PH doctor is still out of town. He will be back soon, and I will ask his thoughts when I see him later this month. But so far, I am not getting the RSV vaccine myself. Like you, we must all weigh the pros and cons and go with what we feel is best for us.

Not too busy this week. But in the next few weeks, I have several appointments before taking a short getaway for my birthday at the end of the month. Take care, buddy.

[Roger Bliss]

I agree with you on the on the vaccine. We aren’t getting any either due to the reason you mentioned. My wife got myocarditis. Her cardiologist said he has been seeing more and more cases of it. Guess there is no way to prove it came from the vaccine though????

[jen-cueva]

Oh no, @Roger Bliss, I hate to hear that Mary Ellen developed myocarditis after her vaccine. Did she have any underlying heart issues? Or does she only have the other health concerns you’ve mentioned before?

Indeed, this is not a positive outcome. I’m sorry, but I’m happy you shared this outcome with our forum members. I hope Mary Ellen doesn’t have too many problems with myocarditis.

[Roger Bliss]

She had a “flutter” now and then. It the flutter slowly got worse and she went to the doctor. They put a monitor on her. The doctor offered her a beta blocker. She went to a nauropath and they gave her hawthorn berry which stopped it. Now she is back to a now and then flutter like before.

[Elaine]

RSV vaccine was in fact clinically tested. Myself, my sister and one of her friends happened to be three of the people that were in the phase 3 trials here in Illinois for this vaccine. All vaccines that are out in the US go through phase one, two and three trials. Phase 3 usually has 200,000 participants per company meaning manufacturer. Vaccines are not put out in the US I repeat without clinical testing. I was also in the trial for moderna for the original covid-19 vaccine. Once the vaccine came out I found out that I was one of the ones that had the real shot at that time. I have had my flu shot and I have had all my covid shots, boosters and bivariant boosters. I am scheduled for my RSV vaccine because I was one of the participants that I found out afterward got the placebo and not the real shot, (during a trial 50% of the participants get the real shot and 50% and get the placebo because the shot has to do better than the placebo). But I repeat it was clinically tested.

[Karen Endelman]

I had no effects from the RSV vaccination. Wish I could say the same about the Shingles one – high fever for about 4 hours, then just felt crappy. I know I need to get the next COVID booster but I’ve had nasty side effects for all of those. So, I’m procrastinating a bit.

[jen-cueva]

Hi, @Karen Endelman. I’m happy to hear that you had no negative effects from your RSV vaccine. But I am so sorry to hear about the issues with your shingles vaccine. I don’t blame you for dragging your feet on the next COVID booster after that fever for days.

Thanks so much for sharing your experience. This helps others who are looking to get the same vaccines eventually. Do you have any other apopountments this month we can support you with?

[Karen Endelman]

This is a quiet month 🙂 I just met with a new oncologist last week (my last one relocated). And I was pleased with our first meeting. I have no other appointments for a month! That’s when I see my pulmonologist, and he’s a pleasure to see. Unfortunately, December is filling up rapidly with various tests and doctor appointments.

[Colleen Steele]

@Karen Endelman , having doctors you feel comfortable with makes all the difference in the world. It sounds like you have been blessed with good ones!

I’m sorry you have a lot of appointments in December, but hopefully that will mean the start of the new year will be filled with non-medical plans?

[jen-cueva]

Hi, @Karen Endelman. I’m happy you have found some new HCPs you feel comfortable with. That’s huge and helps when managing several diagnoses like you are. A quiet month is good news, I am sorry to hear December is filling up. Hopefully, that means you will be good for several months and can enjoy the holidays.

Thanks for sharing and let us know how we can best support you. Do you have anything fun planned?

[Gayle Ward]

I had my RSV, Covid and flu vaccines last week all at the same time. I felt bad for the next day but these side effects were gone in 24 hours. My Pulmonologist recommended that I get the RSV so now I’m set. Next time I would spread the vaccinations over a week rather than all at once. Best wishes and stay safe

Gayle

[jen-cueva]

Hi, @Gayle Ward, ‘I’m sorry to hear you experienced some side effects from getting both vaccines simultaneously. But thankful it resolved quickly!

It sounds like your doctor has you set. I don’t blame you for spreading them out next time. But hope these keep you safe all season long. Thanks for sharing, Gayle.

Do you have anything else you need our support with?

[Terese Tuohey]

I had my flu shot in Sept., and my Covid shot this past week. No problems except for a sore muscle. I’m checking with my doctor next week at my usual appt and will see about the RSV. If she says for me to get it, I’ll do it in Nov. I want a good bit of space between my vaccinations, can’t you guess?

[jen-cueva]

Hi, @Terese Tuohey. I don’t blame you for separating these vaccines. I prefer to do the same. I’ll get my flu and COVID booster this month. But my PH team doesn’t recommend the RSV vaccine for me. I’ll learn more about his thoughts when I see him later this month.

I usually only experience a sore arm after my vaccines, like you. Thanks for sharing, Terese. Have a wonderful weekend. 🤗

[Fay]

Hello everyone, I received the RSV vaccine three weeks ago and I had a severe reaction to it. I got the vaccine late afternoon and went to bed at around 11 pm. I woke up at 2 am With a pounding headache. I could not initially get myself up and out of bed due to inflammation in my leg muscles and a burning sensation in all of my joints. I had no strength to get up so I waited another hour and I finally pulled myself up so that I could get water and something for my headache. I could not eat or walk for 3 days. I kept hydrated and was able to eat soup by the end of the 3rd day. It took me three weeks to get my energy back.

I have Rheumatoid Arthritis, PAH and Interstitial lung disease and my breathing was affected a great deal. I have been doing relatively well by using Tyvaso and Tadalafil for the last 9 years. I have received all of the Covid shots since the pandemic and I did not have any reaction to them but this shot was very bad for me. I thought that this might be it as it really created tightness around my lungs. It also dried out my eyes so much that I had to constantly put drops in them. Not a fun experience and I am so grateful that I eventually started to feel better. I would like to hear what others have to say about their experience with this shot.

[Colleen Steele]

@Fay oh my gosh! You had a bad reaction! I’m concerned about how many have experience some kind of unpleasant to severe reaction to it. My son is 23, he received it because he is a transplant recipient. Thank God he was fine afterward.

I wonder if certain co-existing conditions like RA can create serious side effects? Probably not enough research to confirm that, but it’s what I’m wondering.

I asked my doctor if I needed it but she said not for my age and health status.

[Fay]

Hi Colleen, I am happy to hear that your son did well with the RSV vaccine. I am 70 years old with complex conditions so perhaps it affected me differently. Either way, I am not going to chance getting it again.

[jen-cueva]

Oh my, @Fay, I am sorry to hear about your reaction after receiving the RSV vaccine. Did you receive any other vaccines with it or just that one? My PH doctor does not want me to have the RSV vaccine at this time, and I am OK with that, especially after reading your experiences and a few others who had challenges that I consider severe after this one.

I hope things are much improved for you now. What did your medical team think was the reason of thee reactions? They may bot know that yet.

@Colleen , I’m grateful that Cullen had his without any complications. As a transplant patient, I certainly can see why this would be important.

[Fay]

Thanks so much for getting back to me Jen. I am doing very well now. It took me about a month to fully recover. I did have a flu shot the same day but I was told it was very safe.

[jen-cueva]

Hi @Fay, I am so happy you are feeling much better now. I’m sorry you had that experience, my PHriend. A month to recover is a long time. So thankful things are better for you now.

@Carol alexander , did you also struggle with your negative side effects from yours that long?

[Charlotte McCabe]

yes

[Colleen Steele]

@Charlotte McCabe any problems for you after receiving it?

[jen-cueva]

Hi, @Charlotte McCabe; I’m happy you shared that you did receive the RSV vaccine. When did you have yours, and did you experience any side effects? Did you take any other vaccines at the same time? Thanks for sharing, and I hope that you are doing well.

[Carol Volckmann]

@Fay I am so sorry to hear the debilitating experience you had with the RSV vaccine. I have been advised to get it, but told I may have a bad reaction (inflammation could be really bad) so my Rheumatologist gave me in advance prednisone in case. He still recommended the vaccine even though my immune system is compromised because if I got the virus it would be a great deal worse. I am getting my flu and covid boosters today and will wait a week or so for the RSV vaccine. Fingers 🤞. I hope you are now feeling so much better. Sending you positive vibes and warm hugs.

[Randolph Reynolds]

I have replied before on this topic. By the detailed advice from my Palliative Care Doctor I will not be taking a RSV shot or any further Covid Related shots. There is more risk involved than the CDC acknowleges.

[Carol Volckmann]

I just had my flu and covid boosters day before yesterday and was down for 2 days – not great yet. Probably should have waiting as I not not fully recovered from my hospital stay due to salmonella attack.

Reading the posts from here I really am reluctant to get the RSV – my immune system is shot. Yet my Rheumatologist and PCP reconmmend I get the vaccine, but wait 3-4months till I have my strength back. I now have a mychart question for my Pulmonologist to see what he thinks. I am really up in the air.

[jen-cueva]

Hey, @Carol Volckmann, I’m sorry you are down after your flu shot and boosters. I, like you would think, wait until you regain your strength from that last hospitalization first. I hope and pray you feel some relief soon.

Regarding the RSV vaccine, I am not getting mine yet, either. But for me, my PH team doesn’t recommend it at this time. I trust him. Allow yourself some grace and time to recover; your body has taken a toll recently, my dear PHriend.

[Carol Volckmann]

Hi @jen-cueva , thank you for your thoughtfulness and support. You are right, it is going to take awhile for me to get my strength back. I am slowly getting there I think.

Even though my Rheumatologist, Pulmonologist and PCP all want me to have the vaccine RSV but not for another 4 months and I am back in my strength. I still have my doubts so we shall see.

Hope you, Manny, Zoe and KK have a joyful weekend and where you can rest 😴❤️

[Vanessa Vaile]

Very informative thread. Multiple “on the ground” perspectives round out reading juried journal articles, but the question is moot for me since neither latest Covid booster nor RSV vaccines are available at my local district hospital. If they were, I would get them.