In the U.S. they are now suggesting the DTAP (diphtheria, Tetatnus, Pertussis/whooping cough) booster for every pregnancy. My daughter went ahead and had hers... at least for her first pregnancy (she is AL positive) They are suggesting all grandparents get this as well if they haven’t in the past 8-10 years. I’m wondering what you all think about having thick blood and getting these boosters? I don’t take the flu vaccine because the two times I have were the sickest I’ve ever been in my life. I refuse it now. I should hopefully be starting my Warfarin this week for my APS. Just hoping my “thick blood” doesn’t interfere or give me a bad reaction to this booster for tetanus, diphtheria, or whooping cough.
Happy New Year!!!! I’m hoping to have happier hips and less pain this year!
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Tyler3
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First I want to say that your daughter you have told us are Lupus Anticoagulant (LA) positive (not AL).
I have all the three antibodies for APS positive in very high titres since several years and I have been told to take the flu-vaccine. I have taken it every year. I am on Warfarin now.
Before Warfarin in 1996 and 1997 I think it was, I was very sick in flues. Do not think I took the vaccine those years but I do not remember. I did not know I had the APS then. Later on I have understood that I had symptoms at that time bit it took till 2002 before I had to go to A & E for clots or mini-stroke.
What is important is that you have a Specialist of autoimmun illnesses as it is important that we get anticoagulation-treatment for our sometimes micro-emboli and clots as those make damage ot our organs.
Also it is important that we get anticoagulation as soon as possible as the symptoms may damage our body. I have micro-emboli and they have never seen anything on a Scan but when I finally agreed to start "ratpoison" or Warfarin (which was my life-saver) I was better and most of the symptoms disappeared.
BUT what had happend those years when I was without a proper anticoagulation had already made damage in the long run. I have today Pulmonay Hypertension and two leaking heartvalves. I have probably had a lot of micro-PEs and clots but they could not see them.
That is why you should see a Specialist who has had patients with this tricky autoimmun illness, who understands that we have very thick blood that must be properly thinned and kept stable at a rather high INR-number. That is very important.
Hi Kerstin! I got those letters mixed up, but yes Lupus Anticoagulant. I have been tested for everything BUT LA for some reason, but I bet they are high as well. I have enough positive labs on IGG and others to diagnose Hughes. I'm sorry for all your trouble. The flu shot for me is horrible and I don't think I've ever had the "flu" except the years I took the shot and was wondering if my thick blood just didn't move that immunization through my blood very fast. However, I know a lot of people who do not get the flu shot because of horrible side effects. I should be going on warfarin very soon as stated above.... the soonest I could get my doctor to get on board and I also had to have an upper GI because I was having stomach problems and they had to rule out an ulcer prior to putting me on Warfarin - I just had that done the end of last week so now waiting on my Hematologist to set me up with Warfarin since that test came back ok. My daughter is being treated with aspirin for now.
Hopefully I haven't done too much damage to myself as I had no idea Hughe's Syndrome even existed until I threw a PE following surgery. I did all the protocols with Warfarin x 6 months then have been tested 3 times in the last 6 months with all positive results (on all the clotting tests anyway). At least my doc is ready to put me on Warfarin. I can't say she is completely on board with an actual diagnosis, but I'll go on Warfarin and then start searching for a different doc. I think I've found one so will be calling to get in to see them, but for now just getting on the Warfarin is best. It will be managed by a coagulation clinic so once she puts me on it I don't think she will have much to do with me except more labs in 6 months. (That's why I'm searching for someone new --- I am positive I will find someone soon)
I guess my question goes back to the Whooping Cough vaccination that my initial post was about. I was hoping that someone on here had been giving the booster I mentioned above and knew something about that and if they had any issues with it.
We have the vaccine here for each pregnancy to protect the baby until it has its immunisations at 8 wks. We do not vaccinate grandparents tho or even fathers!?? Just the mother to give the baby protection.
There are no problems having the vaccine with aps I have had it for pregnancy. The only time u couldn’t have it is if u are allergic to any of the vaccine components.
So it’s fine to have with sticky blood.
The flu vaccine for adults is not a live vaccine so cannot cause the flu but I know that I have felt rubbish before after having it and other people report they have too.
Thank you! Yes, I’m the U.S. they call it cacooning, meaning everyone who is around the new baby the most needs the booster, even the father. I don’t mind getting it really and haven’t had it for quite a few years. I’m a little worried because I haven’t started my Warfarin yet (hoping to in a few days) and with my blood being thick just want the vaccine to not linger around in my sludgy, slow moving blood. They say we need that injection ASAP since baby is due in 1 month.
Yeah just get it, probably better before u start the warfarin anyway so there’s no query of it affecting your inr. I don’t think it does anyway.
And it’s good to get a tetanus booster if u’ve not had one for last 10 yrs anyway so that’s handy too!
It won’t hang around in ur blood anyway as the vaccine goes into the muscle not the vein and aps just means ur blood is more sticky and has a tendency to clot not really that it’s thick and struggling to move around.
Exciting times! My brothers baby is due next wk can’t wait, then my other brothers in August x
I will call to get it this week! Thank you. I guess with all my joint pain and other symptoms I imagine my thick blood doing a number on about any body system since thick blood does affect so much and not just clotting.
I really wish I were already on my Warfarin so my blood wasn’t so thick when I get it. I have really strange reactions to meds. I’ll push my doc today and hopefully get going on the warfarin. My hips are killing me! 😢
Thank you for replying Gina. I’m still trying to process all of this.
I think your concerns about having shot while not on thinned is valid: The immune suystem will be prodded (as it should be) by the shot, and the blood may end up now sluggish.
I read your reply after Sarah’s. I’m so torn! I do have strange reactions to meds and immunizations. For instance, Crestor (for high cholesterol) made my hair fall out in clumps and gave me vertigo. I can’t take lipid meds and now am thinking that it’s because my blood is so sluggish.
Oddly enough, I seem to respond normally to most innoculations. But meds? Oh my! I react to things hardly anyone else does. Like — dulcolax and/or miralax. I was nearly through with the pre-colonoscopy routine when I went into anaphylaxsis. Allergic to one or both. So, all that no -eating and frequent trips for nothing. NOTHING! Docs were afraid to do the colonoscopy for fear I would react to something else.
I continue to seriously follow the work of Drs. Hyman and O’Brien and their hypothosis that diet and gut biome health is crucial to maintaining a sane immune system. If you can access it, there is an article on this subject in today’s New York Times involving mice and high vs low fiber diets. I know this will not help you in the short term with this shot or no shot decision, but you might profit in long term by investigating this.
Gina in West Virginia (5 hour drive from Cleveland Clinic Functional Medicine, headed by Dr. Hyman)
Thank you so much. I guess if people have never had bad reactions to meds and innoculations they really can't understand. I am SO thankful that I did fine on Warfarin and didn't have a weird reaction.... because what would I have done? I don't want to think about it. The funny thing is I "look" so healthy. I think that's why it's so hard to get Docs on board with all of this. It's truly exhausting. I will read up on all of this and very much DO understand and want to learn whatever I can.
A vaccine has no impact on sticky blood or making it sluggish.
I’ve recently given a live shingles vaccine to a patient on warfarin and it’s live vaccines that are more concerning for autoimmune type things and blood clotting issues and that’s no contraindicated.
Speak to ur nurse they will reassure u that it’s absolutely fine to have.
Actually I'm a nurse, but obviously one that had never heard of APS. I have found it interesting to say APS to Docs and many have a blank stare. I guess because we are all different and react differently to things, I keep questioning the impact vaccines might have on (some) people with APS. APS is new to me, at least the diagnosis is. But after years of wondering why my body does this or that following injections, meds etc etc and why I always had these "weird" episodes and things go wrong with me I am finally seeing that much of my life and problems can go right back to APS and the effect it has had on me. I'm sure my nurse will say the same thing you do about the vaccine. Most nurses and doctors believe that vaccines can never harm or interfere with other things. I'm just not one of them. I think that, for me, and probably many others, vaccines and certain meds just do not agree with me. Saying that, I had my child vaccinated and I've kept up on all of my "required" ones for myself as well. In fact I had my last TDaP 8 years ago I believe. It's just too bad and a little scary that in my personal experience, some of these things I have put in my body I've had adverse reactions to.... immediately following..... when I was perfectly fine before being injected with it or taking it. And now I truly believe it might be because my blood is thicker than most people's. It just makes sense to me and hoping that being on Warfarin will help a lot of what I've been going through for over 30 years (off and on).
I'm wondering what the live vaccine would have done to your patient if she wasn't on warfarin? That has been my question all along because since I haven't started my warfarin back up (yet), the only thing I have to go on is my past experience of taking meds/injections while my blood was "thick". I hope that makes sense. Unfortunately, and truly, they don't know as much about APS as we'd like them to. It seems to be quite the mystery and because of that I can only go on my own past experience and continue to connect the dots.
Oh yeah totally agree! Everybody reacts differently to meds and vaccines etc. A friend of mine literally is knocked out and green on paracetamol!! He would never ever tolerate all the stuff I have to take!
Apart from the last couple of years I’ve always reacted badly to the flu vaccine. My arm would go raised and red and I’d feel flu/virally for a few days, so I’d always have to make sure I had a few days off work following it. Even tho u cannot get flu from the vaccine it always used to knock me off for a few days.
You can not be quite sure that the vertigo was caused by the Crestor. It could also have been caused by the APS. Also the hip pain could be related to another autoimmun illness. Try to find a Specialist who knows autoimmun illnesses incl APS.
The vaccine (here in Sweden for the flu) does not react with the Warfarin. I did not react on it at all but a friend of mine (without APS) reacted with redness and was warm at the spot.
Perhaps you should not start the two things at exactly the same time. Warfarin and a flu-jab.
I should wait a week at least before I start the Warfarin or the other way.
My symptoms with Crestor started immediately. It was the only thing that I had changed. As soon as I stopped taking the Crestor the symptoms vanished and have never come back. This was when I was in my late 20's so it's been 20 plus years ago. So I will respectfully disagree with you on this one except that maybe having APS (without knowing) and then taking a drug like Crestor (against my better judgement) was the perfect combination to immediately cause my hair loss and vertigo. Again, symptoms went away as soon as I went off of it. Hmmmm.
Also, I was just wondering about the Flu vaccine and now possibly a connection with APS (now that I know I have it, which again, is a recent discovery...) and how maybe MY reaction could be a possible correlation with APS. I still feel like FOR ME, this could be a possibility. But, I had such a bad reaction that I will not be getting the flu shot again. I know many people are very committed to it and state they are never sick because they get the flu shot, but I can say the same because I do not get the flu shot and I never get the flu (except the time I get the flu shot then I am extremely sick with "flu like symptoms". People in the US are either very for it or very against it. I am not for it.
Because of my two reactions with the flu shot, I started the question about the Whooping Cough injection. I'd rather not have a bad reaction now that my blood is thick. Saying that, I plan to go on my Warfarin in the next few days, which will be managed between my Hematologist, a coagulation specialist and my PCP. When I was on Warfarin for 6 months after my PE, my hip pain reduced considerably. This leads me to believe my hip pain is from APS. I truly don't think I have Lupus or MS but if the Warfarin does not take care of it, then I will see an auto immune specialist for sure. I'd rather not manage my pain with other drugs if all I really need is Warfarin to thin my blood.
The good news is it appears that the Whooping Cough injection only takes 2 weeks to be in effect. I'm hoping to start my Warfarin in the next few days then get the injection in a week or two, about about weeks before my daughter is due to have her baby.
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