Concerns about hep b vaccine

[Nell]

Hi all

I just wanted to briefly share my concerns about the hep b vaccination. My daughter was given the hep b moments after birth. She slept for 22 to 23 hrs a day for the first three months of life and was so, so sleepy she couldn't suck actively enough to breastfeed and eventually after lots of pumping I put her on the bottle. It was really terrifying. During that time I read that France does not administer the hep b vaccine due to concerns about it's possible links to Lupus and MS. I also read about other people becoming very ill following recieving this vaccine. My daughter had other blips and bleeps but after getting Fifth's disease at almost 5 yo (four years ago) many things began to happen that have left me deeply concerned about SLE. If I could do it again I would never have allowed her to recieve the hep b vaccination.

I also recall a thread on here where people were discussing what (if anything) they thought triggered their SLE and several people said their sx started following a hep b vaccination.


Nell

[Maia]

There are many people who share your concerns out there. I know I certainly reacted poorly to my second Hep B shot when I was in my early 20's & developed lupus shortly after my 3rd shot several years later (I was working in hospital at that time and was strongly recommended to finish the series & assured my reaction to second shot was NOT a vaccine reaction but probably coincedence with viral infection). But.... I of course can't be sure this vaccine was connected to my developing lupus. And no one knows for sure how they developed lupus.

However, like you, I was concerned enough about my reaction to it, and the truly unneccessary nature of this vaccine for an infant that I refused to allow them to give my newborn daughter the Hep B vaccine. It's an illness spread by blood/body fluids so a newborn is not at risk for it as long as her mother doesn't have it at the time of birth.

I'm sorry to hear about your daughters health problems starting practically right away. That has to be unbelievably hard for you & her. Don't feel guilty about giving her that vaccine - it was recommended by doctors and you're made to feel like it's "required". I hope whatever is causing her illness... that you can get some help for her to feel better soon.

(((hugs)))

[Zoi]

Hi Nell

Two years ago I had the hep b vaccine. Within minutes my legs became red and swollen and I had trouble breathing. I was given steroids to tone down the reaction I was having. I thought nothing of it at the time but a couple of weeks later I started feeling really tired, had a blood test and it turned out I was anemic and my hematocrit was dropping fast.

My rheumy told me that in people with a predisposition for autoimmune problems, certain vaccines can act as a trigger. I know my close relatives think if I hadn't had that vaccine I'd be trouble free. However, autoimmune things can be triggered by viruses, stress, sunlight etc etc etc and no one knows who has a predisposition to them anyway before the problem declares itself!

While things like the hep b vaccine may make sense as possible triggers of problems in retrospect there really is, unfortunately, no way of knowing whether not doing them would have made much difference...

I was vaccinated for whooping cough when I was a few months old as that is pretty standard here and developed a bad reaction to that. My mum told me that I couldn't lift my head for days, had a high fever and she and my doc decided against giving me the booster dose as they felt it was too dangerous. However 2-3 years ago I met a girl my age (19 at the time) who didn't have the booster dose as a baby and she ended up getting whooping cough and its rare complication encephalitis. She is severely disabled from it. As they say there's always two sides to a coin I guess!

I'm truly sorry to hear about your daughter's medical problems... Please do not feel as though you could have done anything to prevent her problems...Vaccines are really standard for children and you had no way of knowing she would have any sort of problems from it....

I hope you're doing well!

Zoi

[Nell]

Maia and Koi,

I'm sorry to hear you are both dealing with SLE :( Thank you for your kind responses and for sharing what happened in your situation.

I do try not too feel guilty but like you said Maia unless the mom is at risk for hep b it just doesn't make sense, in my opinion, to expose the system of a newborn to this vaccination. I just wish I had said I'm going to wait so I could have looked into it.

Right now my daughter is doing ok. She was sick continiously last winter (all chalked up to being viruses by our very remote GP). At the moment she is often stiff and experiencing muscle pain but that is what she knows so she doesn't really say anything. I'm on a mission to find another Dr. who will be willing to work with us and investigate the myriad of unusual sx my daughter has. I'm working on a letter to bring to the offices of the Drs. I've heard of that have gone to bat for their patients in the hope I can get another more responsive Dr. to take her on out of the goodness of his/her heart, as there are no Drs. taking new patients.

Hope you are both hanging in there with it being summer.

Thanks for your thoughts.

Nell

[Maia]

Glad to hear she hasn't gotten worse Nell.

If I hadn't gotten lupus, and had the reactions to my Hep B vaccine, I probably wouldn't have even thought about refusing the shot for my newborn.

Good luck finding a good doctor. Seems like sometimes they are very hard to find, huh?