Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-09-2013, 05:28 PM #31
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My husband thinks I should stay away from the nasal version.
I'm so confused!
Anyway, thanks for all of your advice.
I guess I have alot of thinking to do.
Take care.
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Old 10-09-2013, 05:53 PM #32
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Quote:
Originally Posted by Neurochic View Post
It is exceptionally risky for any pharma co to carry out any clinical trials of any drug in pregnant women. The ability to obtain insurance against the liabilities that arise if something affects unborn foetuses is minimal/nil. Post-thalidomide, drug companies just won't take the risk of carrying out clinical trials in pregnant women. The liabilities can be massive when you add up the lifetime costs of care for a large number of affected individuals with reasonable life expectancy. Because nobody is prepared to risk financial and reputation all suicide carrying out trials in pregnant women, however minuscule the perceived risk is, such medications are never licensed or approved for use in pregnant women. That isn't the case with some older medications or some injectable vaccinations which are manufactured from deal viruses. It is a commercial issue rather than one relating to the vaccine. I have some experience with clinical trials regulation.

As far as transfer of the virus is concerned, need to understand the difference between virus shedding/transfer and actually infecting someone else with flu. These are worlds apart and what the document you referred to explains is that whilst evidence of attenuated virus shedding and subsequent transfer to another person has been recorded, they have not seen any evidence of a vaccinated individual "infecting" another person with the flu virus and than person becoming symptomatic as a result. Essentially what they are able to pick up is evidence that the attenuated virus cells are detectable by lab testing in the body of another person.

Further down in that same document you referred to it does explain that you cannot get flu from the attenuated nasal vaccine and it also explains why. I appreciate that you have very firm views about vaccines and I am merely answering the questions that you asked in (what seems to be a slightly confrontational way) but I am not trying to influence your opinion.
I respect your opinion and the opinion of others. The best way to get opinions is to hear from many. In regards to the article..that is not how I interpreted it. It is also not how it was explained to my MIL just days ago, when I took her to get a checkup and discuss the possibility of a flu vaccine. They won't even give you the choice if you are over 49 or have had a serious illness in the past year. And they asked about the age and health of others in the household specifically regarding young children. The way it was explained was that no deaths have been reported due to the vaccine being transmitted to an un-vaccinated individual but it has been transmitted..just no serious illness was reported. That same could be said for someone contracting the flu.. not everyone dies from it or has serious complications like pneumonia from it.

Regarding pregnant women - this is incorrect pregnant women are encouraged to get the flu shot by the CDC. The flu shot does NOT contain the live virus (unlike the nasal vaccine) and so you cannot get the influenza virus from it.

Yes, my views are somewhat firm as are the views of others and that is respected. Confrontational wasn't my intention but my writing style is generally to the point and often lacks fluff. If I am judged harshly by one post then that is sad because I've offered many posts both publicly and privately that was more than encouraging. So if I offended someone with my opinion I am sorry. I am not sorry for sharing my thoughts and understandings as I think it is important just as others views/thoughts are. I don't expect anyone to agree but I hope it would provoke thought and personal research. Just like most everything posted in this forum.. if we relied upon only one view or story we would all be lost.
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Old 10-09-2013, 06:07 PM #33
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I too afraid to get the nasal vaccine. I"m no dr but any kind of live virus scares me. I'm still not sure I'm getting the injection with the dead virus, but after having such a tough time getting over colds since I've had rsd, I may consider it now. As long as it's not a live virus. That's just my gut speaking. My husband is not a dr either, but has worked in the healthcare industry for over 30 years and is also diabetic, and he doesn't even want to get any flu vaccine anymore. I may try to convince him to get the vaccine that does not have the live virus. My son was always told by his pediatricians and drs that he didn't need it either. I wonder if he should get one now. He's 20 but I have to check with his dr again. Thanks again for all of your advice.
Take care.
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Old 10-09-2013, 06:32 PM #34
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With respect, you have completely misunderstood what I said about the use of the nasal vaccine in pregnant women. My comments related only to the attenuated virus which constitutes the nasal vaccine, not to the injected vaccine which I am well aware is given to pregnant women and indeed, is positively recommended for pregnant women.

As has previously been said, it is those with compromised immune systems or underlying medical conditions who benefit most from flu vaccination. They have the greatest risk of death and severe complications from flu which is not a trivial illness, especially in someone with an underlying medical condition or weakened immunity. Its worth remembering the various pandemic flu episodes that have killed millions across the globe if ever a reminder were needed that it isn't trivial.

As antibiotic resistance becomes an increasing problem, it will become more difficult to treat the secondary complications of flu and it may, again, become a much bigger killer in future. Globally, we have currently got no solutions for antibiotic resistance - the world is sleepwalking into an era where simple bacterial infections will again kill people like they did before the discovery of penicillin. It takes on average a minimum of 15 years to get a new drug or compound to market and the number of new compounds licensed annually by the FDA and the European equivalent is tiny - in the teens. Most of those licenses are not for truly novel compounds - they are just improved versions of drugs that already exist.

People can slam big pharmaceutical companies and maintain all kinds of unfounded conspiracy theories but at the end of the day, it's those pharma companies we all have to rely on to come up with the new generation of drugs to replace antibiotics. It's also those same pharma companies which have made the drugs that most of us rely on for whatever bit of minimal symptom relief we can get from medication. I for one, am happy to accept all of the failings of the clinical trial system because even the marginal benefit I get from my prescription medications far outweighs the risks or concerns I have about the interests of individual companies or the imperfect system.

No medic or scientist will ever suggest that a vaccine is fail-safe or fully effective and the flu vaccine is always limited in terms of the number and type of flu strains that it will protect against in any given year. It is just another risk management strategy that people can choose to adopt or reject. Personally, I will be going to get mine done shortly, as always. I will have it done by normal injection even though I have an extremely robust and healthy immune system and CRPS symptoms that affect all of my body. There is as good as zero risk and everything to gain.
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Old 10-09-2013, 06:43 PM #35
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It is easy not be concerned with the negative impact on a seemingly small % of people UNTIL that small % includes you or someone you love.
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Old 10-09-2013, 06:45 PM #36
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Renee
The injected flu vaccine is absolutely 100% not live. It will not give you flu. I don't know what other information you and especially your husband could be directed to in order to convince you both of this. The pharmaceutical industry simply couldn't "lie" about this - given that these vaccines are manufactured by multiple companies and administered to hundreds of millions of people every year all over globe, if it turned out that it was even the tiniest bit alive, this would be quickly discovered! I guess I don't understand the fear you have of an attenuated (weakened) live virus vaccine either. It isn't going to infect you with flu or anything else. What is it that you are worried about?

Unless your son is a healthcare worker, has a compromised immune system, or has one of the other myriad of medical conditions that are indicated for vaccination (or he is in close day to day contact with someone who is in one of the affected groups) then he doesn't need it. His body is young and fit enough to do the job it is supposed to do and fight the virus by itself. That is what his immune system is meant to do and he will be all the healthier and robust for fighting off any infection he does get.
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Old 10-09-2013, 06:53 PM #37
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With all due respect some of your information is misleading.

CDC

Why is a higher dose vaccine available for adults 65 and older?
Human immune defenses become weaker with age, which places older people at greater risk of severe illness from influenza. Also, ageing decreases the body's ability to have a good immune response after getting influenza vaccine. A higher dose of antigen in the vaccine is supposed to give older people a better immune response, and therefore, better protection against flu.

Linkout: http://www.cdc.gov/flu/protect/vaccine/qa_fluzone.htm
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Old 10-09-2013, 07:04 PM #38
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And further caution (one of many) from the FDA:

Administration of FluMist to persons with a compromised immune system should be based on careful consideration of potential benefits and risks. Data supporting the safety and effectiveness of FluMist in this population are limited. In addition, FluMist is a live virus vaccine, and has the potential for transmission to household contacts that have a weakened immune system. FluMist recipients should avoid close contact after receiving the vaccine.

This is not something without risk.. there are risks and like anything that has risks, lead with caution and a thorough understanding prior to making the decision.

Linkout: http://www.fda.gov/BiologicsBloodVac.../ucm080754.htm
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Old 10-09-2013, 07:28 PM #39
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I remember my pm dr telling me that the risks of getting an infection from a Neurostimulator were small. I told him so were the chances of getting rsd from surgery, but I got it anyway. That's why my neurologist and gp said they didn't think it was a good idea to get it. I decided not to get that done. My point is, if the chances of getting infected by the live vaccince are small, they are still there, and that concerns me.
It's just like when my son's pediatrician said that the chances of getting polio from the polio nasal mist were small but were still there because they were live. I still had him get it, but was scared too. But since his immune system wasn't compromised and he was healthy, I had it done.
My mother who is 81 got really sick after receiving the flu vaccine when the swine flu was first combined with it. That's when my husband and I stopped getting it. We were wary because the swine flu vaccine was so new and because my mom got so sick. She got the flu shot this year and was okay, but she doesn't have a weakend immune system either. I appreciate all of your advice, but it's scary still to me. Even needles scare me now because after I got them from my accupunturist I got rsd spread. I don't want everyone to get upset over this either though. I didn't realized there was such controversy over this. I'm getting stressed out more by seeing all of you get stressed out. I feel responsible and I'm sorry. That wasn't my intention.

Last edited by RSD ME; 10-09-2013 at 10:46 PM.
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Old 10-09-2013, 07:40 PM #40
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What happened here in the US was that quack parents (no disrespect to those parents) decided to not vaccinate there children in fear of Autism or other disorders. Well surprise surprise the measles has popped up, its very low and thankfully these horrific viruses haven't come back YET. But its just stupid to not vaccinate. Thankfully our whole public school system does not allow kids to start school who are not vaccinated, so that has helped. And obvisly the whole autism comes from vaccines was debunked!

As for the flu shot, again I rather get it to protect me and my body verses getting horrifically sick because I know that's what will happen. My pcp did tell me about a new vaccine they just came out with and its a very tiny needle and doesn't hurt at all, but they don't give them out every where so I think you have to go to your local health department. Second, I have a severely immuno compromised little brother and a basic cold can land him into the hospital and at deaths door, let alone the flu! So my whole family gets them every year and so do our nurses that care for him. And he HAS to get his flu shot every year, his drs don't even give an option, because the benefits definitely out way the negatives. If your worried talk to your PCP to get all your information. The only person that cant get it in my house is my little sister because she has an egg allergy. When H1N1 came out and there wasn't a vaccine yet, that was horrible! A lot of people died from it. Typically the annual count for deaths by flu is 130k, probley your very elderly, severely immuno compromised and those that just don't feel like they need the flu shot or fears they have of it.



Quote:
Originally Posted by Brambledog View Post
Makes me think of the MMR vaccination in the UK.....loads of parents chose NOT to vaccinate their kids because of the negative press about the MMR vaccine. Lots of unvaccinated children now getting measles, mumps and rubella because of it, and passing it on to their friends - and some of those kids develop it badly and have nasty reactions, pass it to their children etc. Now they are lining up for it again, and there's a big push to get kids safe again. Turned out actually the risks of the vaccination WERE a lot less (as a population) than crossing fingers and hoping.

I'm not saying 'you've got to have the flu shot', but there are always two opposing points of view on these things....and pretty often the scientists are right.

Bram.
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