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Old 11-03-2009, 11:09 AM   #1
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Lupus and H1N1 Vaccine (I can't believe this)...

I just can't believe this.... (sorry this is so long)

My family doctor just called me to say they got a limited supply of the H1N1 vacccine (we live in Toronto, Canada) and the reason for the call was to put my 3 1/2 yr old son and my 58 year old asthmatic mother on the list to get the injection at our family doctor's office instead of making us wait in line with the general public to get the shot. As well, my sister and her husband who are caregivers of 3 children 14 months, 4 1/2 years & 7 years were put on my doctor's list along with the children.

My question is why am I not considered 'high risk' and put on the list with the rest of my family? The rationality behind my sister and her husband who are perfectly healthy individuals being put on the list for the vaccine is that they are caregivers to their 3 children who ARE high risk. What about me? I am the primary caregiver to my son 3 1/2, as well, I have lupus and my immune system is severely compromised due to the fact that I take imuran and prednisone on a daily basis for my lupus. I am completely floored by the fact that I am the only one being left out and can not receive this H1N1 shot through my family doctor.

Now, my own research has told me that here in Toronto Canada, there are 2 different versions of the vaccine - the first is an Adjuvated Vaccine and has something called squalene in it which is an immune booster, this allows there to be less of the actual vaccine in the shot because the squalene boosts the individual's immune system into overdrive to create antibodies against the actual H1N1 virus very quickly. As everyone here with lupus knows, we have an autoimmune disease which means that something with our immune system is wonky and it causes our own immune system to attack itself. Taking an 'immune booster' could cause alot of harm to us since the stronger our immune system is, the more it can attack our own tissues, organs, etc. So, the regular H1N1 vaccine that is being given to my family is not for me....

This brings me to the 2nd version of the H1N1 vaccine here in Canada. This is a Non-Adjuvated Vaccine and here, it is only being offered to pregnant women who are over 20+ weeks into their pregnancy. This non adjuvanted vaccine has no immune booster in it but has more of the actual H1N1 virus in it. It seems to me that those of us with lupus or at least myself should be getting this non-adjuvated vaccine b/c we can't get the one with the immune booster. Guess what? Can't get it. Only 20+ week pregnant women can get this shot.
So, all us lupus people here in Canada who are taking meds to supress our immune system are not considered high risk enough to get the regular adjuvated shot before the general public and are definitely not considered for any reason to get the non-adjuvated shot unless we happen to be 20+ weeks pregnant. Where does this leave us? I, with my compromised immune system pick up every little cold that goes around. I usually spend 7 months of the year sniffling, sneezing, coughing, feverish etc. I truly believe that I am at high risk to get H1N1 and I am at high risk to have a hard time fighting the virus once I get it because of the compromised immune system. I am frustrated and am thinking of going to the public line ups and telling the clinic people that I AM 20+ weeks pregnant just to get the shot at all and I am talking the non-adjuvated kind.

I feel like I have no one to turn to for advise about this, my family doctor has made her decision and my reumatologist has been on extended sick leave since April because of breast cancer (bless her).

Any comments would be greatly appreciated, especially from anyone in Canada or Ontario, Canada specifically.

Thanks so much for reading this HUGE post - I wanted to make sure all the info got into it. As well, excuse any spelling mistakes....
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Old 11-03-2009, 06:02 PM   #2
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Re: Lupus and H1N1 Vaccine (I can't believe this)...

I don't understand it either. In my state county health departments were given the vaccine to distribute in public clinics. Target groups in my county are pregnant women, children 2-24, and parents of these children, and emergency medical people....sounds similar to your criteria. I too thought I would be on the priority list. I need to make some phone calls to figure out what is going on.

 
Old 11-13-2009, 03:46 PM   #3
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Re: Lupus and H1N1 Vaccine (I can't believe this)...

Quote:
Originally Posted by TisJustMe View Post
I just can't believe this.... (sorry this is so long)

My family doctor just called me to say they got a limited supply of the H1N1 vacccine (we live in Toronto, Canada) and the reason for the call was to put my 3 1/2 yr old son and my 58 year old asthmatic mother on the list to get the injection at our family doctor's office instead of making us wait in line with the general public to get the shot. As well, my sister and her husband who are caregivers of 3 children 14 months, 4 1/2 years & 7 years were put on my doctor's list along with the children.

My question is why am I not considered 'high risk' and put on the list with the rest of my family? The rationality behind my sister and her husband who are perfectly healthy individuals being put on the list for the vaccine is that they are caregivers to their 3 children who ARE high risk. What about me? I am the primary caregiver to my son 3 1/2, as well, I have lupus and my immune system is severely compromised due to the fact that I take imuran and prednisone on a daily basis for my lupus. I am completely floored by the fact that I am the only one being left out and can not receive this H1N1 shot through my family doctor.

Now, my own research has told me that here in Toronto Canada, there are 2 different versions of the vaccine - the first is an Adjuvated Vaccine and has something called squalene in it which is an immune booster, this allows there to be less of the actual vaccine in the shot because the squalene boosts the individual's immune system into overdrive to create antibodies against the actual H1N1 virus very quickly. As everyone here with lupus knows, we have an autoimmune disease which means that something with our immune system is wonky and it causes our own immune system to attack itself. Taking an 'immune booster' could cause alot of harm to us since the stronger our immune system is, the more it can attack our own tissues, organs, etc. So, the regular H1N1 vaccine that is being given to my family is not for me....

This brings me to the 2nd version of the H1N1 vaccine here in Canada. This is a Non-Adjuvated Vaccine and here, it is only being offered to pregnant women who are over 20+ weeks into their pregnancy. This non adjuvanted vaccine has no immune booster in it but has more of the actual H1N1 virus in it. It seems to me that those of us with lupus or at least myself should be getting this non-adjuvated vaccine b/c we can't get the one with the immune booster. Guess what? Can't get it. Only 20+ week pregnant women can get this shot.
So, all us lupus people here in Canada who are taking meds to supress our immune system are not considered high risk enough to get the regular adjuvated shot before the general public and are definitely not considered for any reason to get the non-adjuvated shot unless we happen to be 20+ weeks pregnant. Where does this leave us? I, with my compromised immune system pick up every little cold that goes around. I usually spend 7 months of the year sniffling, sneezing, coughing, feverish etc. I truly believe that I am at high risk to get H1N1 and I am at high risk to have a hard time fighting the virus once I get it because of the compromised immune system. I am frustrated and am thinking of going to the public line ups and telling the clinic people that I AM 20+ weeks pregnant just to get the shot at all and I am talking the non-adjuvated kind.

I feel like I have no one to turn to for advise about this, my family doctor has made her decision and my reumatologist has been on extended sick leave since April because of breast cancer (bless her).

Any comments would be greatly appreciated, especially from anyone in Canada or Ontario, Canada specifically.

Thanks so much for reading this HUGE post - I wanted to make sure all the info got into it. As well, excuse any spelling mistakes....
Thanks for posting all this information. I also have Lupus and am taking antisuppressant drugs. I live in Quebec and was not aware about the two different types of vaccine. I would think that people with Lupus would be given the non-adjuvated vaccine. I am going to discuss this with my doctor and will post what he thinks.

 
Old 11-14-2009, 05:41 PM   #4
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Re: Lupus and H1N1 Vaccine (I can't believe this)...

I got my H1N1 yesterday ar my local county heath department. I had followed a federal link and it just happened that it was holding a clinic this week. You did have to fill out a form and check a box saying you had some systemic illness, such as diabetes, etc. Not one person questioned me or said I could not get the vaccine. There was no cost for the vaccine, but you do supply your insurance info and they will file for a nominal fee for admin costs. Why don't you look online and see if you can find the link, it was probably the HHS site where I found the link, sorry I cannot be more specific. I was in and out in 5 minutes there. I see you are in Canada, so do you have government health departments like they do in the US?

Last edited by goldyfm; 11-14-2009 at 05:42 PM. Reason: additional thoughts

 
Old 11-15-2009, 02:57 PM   #5
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Re: Lupus and H1N1 Vaccine (I can't believe this)...

Here in California as well - only pregnant women are given the H1N1 shot and the kids are given the H1N1 Flumist plus the seasonal flu shot. And I'm assuming your reference to the adjuvated and non-adjuvated vaccines is same here - the mist is probably adjuvated as well. We were told after the first spray/mist my kids received, that we have to go back after 30 days and get an addtl. spray/mist again....we just got our first round and by the time we are ready for our 2nd round, Kaiser is not sure they'll have enough of the spray/mist available...nice heh? So I have no clue if one dose of the flumist is even worth anything ??

You know, there are very many people like yourself, that have illnesses (autoimmune or otherwise) that should qualify for the H1N1 shot, but like it or not, the fact is there is a limited supply of the vaccine available and they had to start with a priority somewhere - and that priority lies with pregnant women - who keep in mind, are dealing with 2 lives not just one, so no offense, but personally I feel they started at the right place considering the limited initial supply (and no, I'm not prego :-) ). Let's just hope they can/will produce more...very soon.

 
Old 11-15-2009, 06:12 PM   #6
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heidiclouser HB User
Re: Lupus and H1N1 Vaccine (I can't believe this)...

Ok...the head of infectous diseases in Washington DC said the priority groups are:
pregnant women, children 6 months to 24 and those with underlying medical conditions. I think he was on Meet the Press.

 
Old 11-15-2009, 08:35 PM   #7
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Re: Lupus and H1N1 Vaccine (I can't believe this)...

Yes, people with underlying chronic conditions...that means us lupus people should be on the priority list. Anyway, now here in Toronto they are now expanding our program because they just got approval for distribution of a whole lot of non-adjuvanted vaccine and apparently we will be able to get this by request.......this whole thing is driving me nuts. I'm thinking I'll just take my chances and not get the shot since I am off work on medical leave because of my lupus being so active right now so I really don't go out much anyway. My 3 yr old has been immunized so hopefully he won't be bringing it home to me
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Old 11-17-2009, 07:03 PM   #8
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Re: Lupus and H1N1 Vaccine (I can't believe this)...

Hey tisjustme,
I'm also in Toronto and on Thursday I got my H1N1 vaccination because from my Rheumatologists perspective, I am in the high-risk category, as are you. It seems odd t me that they turned you away. I am on the same meds as you plus a few more.
I was also confused as to which vaccination to take and after consulting with many doctors and researching on the Lupus websites, it was suggested that we get the non-adjuvented vaccination however if it wasn't available, we should get the regular vaccine.

I work full time and yesterday, one of my co-workers who has H1N1 came into the office, and into our meeting room. She was sent home and now today I am noticing that my chest hurts and I had a fever earlier today. Now I''m not sure if this is the vaccination or I am catching something. I know the gestation period takes about 10 days so I should be clear by Thursday however, I am so paranoid and worried about all of this.

Im hoping you are able to find some direction and choose the right path. Isn't Lupus such a complicated disease? Also. Toronto bound, I just finished doing an IPSOS research study and they are looking for more participants.. The incentive is pretty good. Let me know if you are interested. It's at Yonge and Eglinton.

Take good care all.

Signing off...

 
Old 11-17-2009, 08:10 PM   #9
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heidiclouser HB User
Re: Lupus and H1N1 Vaccine (I can't believe this)...

Wahoo!!! I finally found a flu shot thanks to my oncologist. He didn't have any vaccine himself but called an associate to locate a dose. My husband went and picked it up and the nurse gave me the shot. So I'm set.

 
Old 11-18-2009, 11:13 AM   #10
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comanchesue HB User
Re: Lupus and H1N1 Vaccine (I can't believe this)...

Did you ask your doctor these questions? I'd be interested to hear his answer.

 
Old 11-20-2009, 09:33 PM   #11
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alwaysonthago HB User
Re: Lupus and H1N1 Vaccine (I can't believe this)...

I would follow these objectives, which may be very much more reliable than a flu vaccine!!!!!
•Avoid sugar
•Get enough rest
•Eat garlic regularly
•Don't let stress overwhelm you
•Exercise regularly
•Wash your hands

 
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