I am wanting to find out if anyone has gotten the Covid vaccine yet and if so, did you have any reactions? I understand that everyone’s experience is different but I wanted to hear what others are doing who have had GBS and other problems possibly related to vaccines. I had a possible case of GBS following the TDAP vaccine and trying to decide whether to get the Covid vaccine or not.
Have been having ivig infusions for 10 years for cidp. No problems/reaction to two COVID-19 vaccinations.
Hi melaniemassey,
That’s great! Did you ever have trouble with any other vaccines?
I’ve been getting IVIG/SCIG for 20 years for CIDP. I’m nervous about the getting COVID vaccine because I once had a yellow fever vaccine and it made my CIDP symptoms so bad that my normal treatments were ineffective. It took a long time to get back to normal.
Hi Greg,
I’m supposed to get the Covid Vaccine tomorrow morning but I’m concerned. I didn’t think I would live through what experienced the last time after the TDAP vaccine. I’m still not the same and that was years ago. I don’t want Covid but I don’t want to end up on a ventilator or paralyzed. I know there haven’t been reported cases but are the CIDP and previous GBS patients getting the vaccine and is everything being reported from them. I reported my previous case but I never got the diagnosis. It was ascending and it happened a week and a half after the TDAP vaccine. I was a marathon runner and in a couple of days could not walk without assistance among a whole heck of a lot of other symptoms that debilitated me. I finally got a neurologist who called it a mild case of GBS but it wasn’t so mild to me.
I got my vaccine few weeks ago and no problems/reaction experienced.
I got my first shot on a Thursday and was sick for a week. Pounding headache along with a low grade fever and nightmares during this week. Felt sicker then normal. My son got his second shot and he thought he was dying for two days. His wife who is a nurse felt just as sick. I get my second shot on the 26 th of March and I’m worried. I have autonomic neuropathy/cardiac autonomic neuropathy. My cardiologist gave me about 6 months to live and I’m really questioning why I am going thru all of this
I get my second covid shot a week from tomorrow. Other than my arm being sore for a day or two I had no issues with the vaccine. I had the Pfizer vaccine. I’ve been advised not to get a flu vaccine but I’ve had two pneumonia vaccinations with no issues. I wanted to take the Pfizer because it was just messenger RNA rather than a weakend virus like the Johnson and Johnson single shot vaccine is.
I got GBS after getting the flu vaccine 18 months ago. My understanding is that these vaccines (at least Pfizer and Moderna) are very different. I’m not hesitating to get the vaccine as soon as I can.
I am almost 11 yrs. Since I got g.b.s. from a tick bite. I got the moderns vaccine 19 th of Feb getting ready for my second one next week. I was sick 2 day stomach and sore all over low grade fever. Stay in bed for them two days. Hoping 2nd goes smother. Good luck to all that take the vaccine. Hey keep fight them that’s new to g.b.s. I did and am living a pretty normal life now.
I am 4 1/2 years post GBS; still cannot extend my fingers fully, though there continues to be incremental improvement. I received TDAP 9 weeks ago, Pfizer COVID 6 & 3 weeks ago. No issues arose. Good luck!
I got the Pfizer vac. and no problems. Some of our friends got the Moderna and had a few side effects.
I like to share some recent recommendations for CIDP patients from Italian Peripheral Nervous System Association. You can find at the link below a sort of Guidelines for us.
Acute and chronic inflammatory neuropathies and COVID‐19 vaccines: Practical recommendations
At pag 11 you can read that if you have CIDP and you are in a flare-up conditions they suggest to delay the vaccine inoculation untile you resolve the flare-up.
Vaccination for COVID-19 in patients with chronic inflammatory neuropathy should
preferably be administered during a remission phase of the disease. […] Clinicians should delay vaccination of people with chronic inflammatory neuropathy who are experiencing a relapse until clinical resolution or until the relapse is no longer active
1 Like
I fully understand your concern. I got the Pfizer. I did okay just more cramps and fasciculations. A little weaker but seem to be recovering okay. I received both shots. Last one three weeks ago. I definitely would take the vaccine over the disease despite the exacerbation. I am hoping that the IVIG works again. I also just had my thyroid out and am hypothyroid so unsure that this exacerbation is not from that. Go for it. People are dying from this virus.
Did you ever have a problem previously from a vaccine, positive_outlook? I also found out a few years ago that I have a thyroid issue - Hashimoto’s. I had antibodies to my Thyroglobulin. I am considering the vaccine but so afraid that my body will overreact to the point of GBS again. I am allergic to so many foods too and some medications. I had GBS years ago following the TDAP vaccine which is so rare. I haven’t had a vaccine since. For me, it’s about anything that my body encounters. I’m sure I would struggle with Covid too. If people who don’t normally have immune responses have trouble then where does that leave me? I really want to be normal and just get the shot. I was fine right after the TDAP shot. It took a week and a half for me to start having a reaction. No doctor helped me. I suffered with everyone thinking I was crazy. I think I have PTSD from being treated so badly from the physicians I encountered. It’s bad enough to go through GBS but even worse to be dismissed by the people who are supposed to help you while you continue to be brutally attacked internally. I’m sorry. I’m really struggling with this decision.
Hi. Got GBS late 2011. Insurance would not cover ongoing IV/IG treatments, so I deal with a chronic case which has become tolerable/moderate. Asked my doctors if I should get the Covid vaccine and none of them knew what to tell me. I didn’t die from GBS but could die from Covid, so I decided to get the vaccine. Got the Moderna first dose vaccine 6 days ago. Had a pounding headache for 8 hours and felt a bit queazy. After that no issues. Day 4 after the vaccine I felt the burning searing pain in my legs that is more severe than I have felt in years. Day 5 and 6 I am fatigued and having more leg pain. I am hoping it will pass. I don’t regret getting the first dose, yet.
I have CIDP and have been taking Gammagard for 10 years. My Neurologist told me that the reactions could not be any worse than getting Covid-19. I have taken 2 doses of the Moderna vaccine. The only reaction I have had is a sore shoulder muscle for two days. Good Luck!
Tommy may I ask you if you are in a stable condition of your disease or in relapse before the inoculations?
I hope everything goes well for you with your second shot on the 26th and way beyond that!
I really appreciate the opportunity to receive information from all sides! Thank you!