Tetanus?: I have come across the... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Tetanus?

LesJames profile image
18 Replies

I have come across the following link:healthimpactnews.com/2013/t...

Does anyone know if this has been followed up or if a response from Prof Hughes has been given.

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LesJames
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18 Replies
Manofmendip profile image
Manofmendip

Thanks Les, this is very interesting.

Dave

panda60 profile image
panda60

Not altogether sure what point the author is making here to be honest. Is he/she suggesting avoiding the tetanus injection?

If drug companies can find no benefit in running a drug trial then I guess there may be many reasons why there is no clinical evidence to support various theories.

Something else I have been pondering is just what sort of research is being conducted to find out about clotting diseases abd sponsored by who.

Newton possibly had an apple fall on his head whilst innocently sitting under an apple tree. Archimedes may have been relaxing in the bath before his eureka moment. But discovering something about blood clotting didnt happen in the garden shed sponsored by spiders and wood lice.

I am wondering how these studies came about. Maybe I am the only person who wonders such things.

I am able to read a variety of theories and make judgements as to whether there may be a basis to them.

It is the first time I have heard this and I think it's something that is maybe worth a bit more reading.

tim47 profile image
tim47 in reply to overnighthearingloss

I have mentioned some of the free courses on Future Learn and one in particular, run by the University of Reading in UK and called Heart Health, would give you reassurance that there is an awful lot of research going on into clotting and related fields, which will help the understanding of Hughes I would imagine . Reading is but one example of a university researching a field. See futurelearn.com/courses/hea... and keep an eye open for when it may be repeated.

GinaD profile image
GinaD

Relationship does not mean cause and effect. The antivaxers do have a point, but without a large double blind controlled study their point is limited to the existence of a relationship. But again, a relationship does not mean a cause and effect.

Here in the States, most drug testing is done by private pharmaceutical companies. The theory goes that capitalism always works and provides the public with useful products. Problem is that this relationship does not always apply to science. We need a large publicly funded study into the origins and treatments of autoimmunity. And with a nod to the point the anti-vaxers raise, this study should also include a large population studies of possible unintended consequences of vaccines.

So raising public awareness to generate the funds should be a good idea. I say "should be" because we currently in the states have a problem with rising numbers of measles cases due to the number of children who have not been vaccinated. And this has resulted in real and permanent complications to the lives of many measles infected children. Many have died.

So how does one generate publicity to do more studies without encouraging the disruptive suspicion of all vaccines? I nearly died at age 4 from chickenpox. I am so glad there is a vaccine now against chickenpox. My youngest daughter had a bad reaction after her second MMR shot, but due to the introduction of the measles vaccine she never had measles mumps or rubella.(all of which I have a child.)

But again I believe the authors of the study are going a little bit overboard in their conclusion. I have read that there is a clear relationship between APS and previous exposure to the virus that causes mononucleosis. Autoimmunity is a complicated subject.

GinaD profile image
GinaD

Rising cases of autoimmunity particularly rising cases of APS is undoubtedly due to recognition of the existence of these diseases and syndromes. In years past patients would have been described as sickly, frail,or, if you were female, "hysterical." If the numbers are indeed rising I have read this explained as: larger population and greater exposure to various viruses; exposure to plastics; not getting sick enough as a child;antibiotics; and yes,vaccinations. We just don't know which or any of these explanations is true. People who write articles such as this one are making calculated guesses. Calculated? Yes. But still " Guesses'" not science.

Salty profile image
Salty

It is true that certain vaccines--in genetically susceptible people-- can trigger autoimmune disease, and APS is one of the diseases that can be triggered. HPV is another vaccine that has triggered severe autoimmune reactions. This only occurs in genetically susceptible people. But there is not enough data to guide us as to who should avoid what vaccines. I personally advise people with a personal or strong family history of autoimmune disease to avoid the HPV vaccine. That is because we have good ways of preventing cervical cancer without the vaccine. Other vaccines are not so easy because most of the rest are more important, eg meningococcal vaccine, and there is not enough data to tell us what the risk of any given vaccine is in any given patient.

Lure2 profile image
Lure2 in reply to Salty

What is your opinion to the vaccination of the yearly "influenza" (flu)?

Kerstin

chrissybell profile image
chrissybell in reply to Salty

We think the HPV (cervarix) jab caused my daughters chronic fatigue syndrome/ME and another girl in her year (in her twin brothers class) also at the same time became infirm and diagnosed the same. This being an autoimmune disease. Unfortunately she was the UK guinea pig year - and if we'd have been advised anyone with a weaker immune system (she was hospitalised with chicken pox at 3, and had shingles at 8, whooping couch (pertussis) at 8 weeks etc etc, we would not have had her immunised. They were just 'jabbed' at school and we go from there, fo me to then be diagnosed with another autoimmune disease (APS) this year. I saw my GP today - who has said he is quite happy to refer her to Prof Khamashta as I have primary APS, to ensure she is looked at - as so many ME symptoms are similar. - That's good news - although obviously I'd prefer her to not have both, but if it's APS different drugs could make her feel so much better than the 'cocktail she takes now (at 18). Re the HPV vaccine they're not even sure what it does to fertility or how long the effects (the protective ones) last..............

Salty profile image
Salty in reply to chrissybell

Chrissybell, I am sorry to hear about your daughter and the other girl. Consider that she might have POTS (postural tachycardia syndrome) rather than CFS. POTS has been a well described complication of the HPV vaccine and we have described the association of POTS and APS last year, including one patient with POTS and APS from the HPV vaccine.

chrissybell profile image
chrissybell in reply to Salty

Salty, she's diagnosed with POTS - related to the CFS! She ticks every NICE guideline for CFS (according to her South East UK specialist - again luckily as I work for a GP practice they guided me to him). BUT many of the symptoms can be similar to APS (I'm told) so GP advised that if she wants to he'll do a referral to Prof Khamashta at St Thom's (as the prof advised) so he can look into it for her.

Salty profile image
Salty in reply to chrissybell

If she does have POTS due to APS then she may benefit from IVIG or other immune modulatory therapy--if she can get a trial. Best of luck. Please let me know what Prof. Khamashta thinks.

Salty profile image
Salty

I get it

Influenza kills ALOT of people every year

Lure2 profile image
Lure2 in reply to Salty

Thank you Salty! I will take it as my Rheumatologist also have suggested. I did not take it last year.

Kerstin

chrissybell profile image
chrissybell

Lure2 - working for a GP practice means I advocate the use of immunisations - but as Salty says we just need to be a bit more aware. I am doing my 'flu clinic' on Saturday - and I think it's great as those who have the jab tend not to get poorly - and I do feel it saves lives (the past couple of years it's included the swine flu strain - which has previously caused deaths and was not nice at all). If you're already battling a disease to catch flu on top can be fatal, or severe for some people. My GPs all have it to protect the patients they see at home (or in clinics) from passing it on! Chris

Lure2 profile image
Lure2 in reply to chrissybell

Thank you Chrissybell. I did not see your response untill now. I will take the jab!

Thanks from Kerstin

Salty profile image
Salty

In the US, all health care providers are REQUIRED to get the flu shot by Nov 1 or so. Without proof you have been vaccinated, you can't practice

chrissybell profile image
chrissybell in reply to Salty

Not quite so prescriptive in the UK, but all my GPs and front line clinical staff (nurses etc) do so - to protect the patients. It is recommended - but don't forget the NHS is free (well taxed, but not as in the US). We immunised about 6 - 700 this morning - all went well and I left as the children were coming in for their fluenz (nasal flu shots).

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