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Swine Flu (H1N1) Message Board
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Old 10-28-2009, 07:36 AM   #1
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Lupus and H1N1

Hey Everybody!
I was wondering if anyone out there has lupus (SLE) and has had H1N1? Also, if you have lupus and the compromised immune system that goes with it (b/c of the meds - prednisone, imuran, plaquenil, etc.) are you planning on getting the vaccine?
Thanks!
Tis

ps - I am in Canada, I understand that our version of the vaccine is different than that of the U.S., I'd really love to hear from anyone in Canada as well as the U.S., with thanks

Last edited by TisJustMe; 10-28-2009 at 07:39 AM. Reason: Forgot something

 
Old 11-02-2009, 11:00 AM   #2
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Re: Lupus and H1N1

Hi there.

I have SLE and MS and currently have the H1N1 flu. Being what my Docs considered "high risk" they wanted me to get the shot as soon as it was available but lucky me...I got the flu first.

For me, my symptoms have been what my Doc calls "the typical H1N1 virus on steroids". But based on what I have been reading on here I am not sure there IS a "typical" case of the flu. It ranges from very mild to very serious.

I am on day 8 of a temp in the 103 range. Also have the cough, chest pain, severe body aches, fatigue, sore and swollen throat, headache, and nausea. I had a few days of GI symptoms as well but that is dying down.

Yesterday was the first day I felt good enough to move from the bed to the couch. Today despite a high fever I feel a tad bit perkier thus me being on the computer.

I am not on the immune surpresant drugs currently so my immune system is in hyper drive (as they say) and in attack mode. SLE will do that as we lupus people have no doubt learned during our daily struggles with SLE.

ONE IMPORTANT NOTE ABOUT THIS FLU. MAKE SURE TO HYDRATE. PUSH THOSE FLUIDS EVEN IF YOU DON'T FEEL LIKE IT.

Sorry for the caps but I almost got placed into the hospital due to moderate dehydration. So push fluids and watch for dehydration signs such as dizziness, skippy pulse, poor urine out put, dry mouth, etc...

Not just water either. It is important to be getting your electrolytes as well. The Docs have me drinking gatorade on top of warm teas, water and sucking on pedilyte pops.

If you have SLE I suggest asking your specialist about the vaccination AND about what to do if you get the virus.

Wishing you health,

SW
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Old 11-02-2009, 11:38 AM   #3
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Re: Lupus and H1N1

Thank-you so much for your reply SW This entire issue with the H1N1 vaccination is stressing me out so much that I am getting swollen joints.
Here in Toronto, Canada they have 2 different types of the vaccine, one is adjuvanted (sp) and contains an immune system booster - supposedly with the booster in it, they are able to use less of the actual vaccine but get a stronger immune response thus making the subject immune to H1N1 (better, quicker, I don't know, I think they just want to use less of the vaccine b/c of $$). The second type of vaccine is the non-adjuvanted vaccine which contains more of the actual vaccine but no 'immune system booster'. They are offering this one to 20+ weeks pregnant women exclusively.

It seems to me that as a lupus patient, my immune system is crazy and attacks itself therefore I should not take anything with an immune booster in it. I already know that I can't have Echinacea for this exact reason. So I should get the non-adjuvanted vaccination IF I decide to get the shot at all but I am out of luck b/c I am not pregnant.

I am peeved off, frustrated, stressed and angry over this whole vaccine issue. All I know is that I am extremely sick with my lupus, not even able to work full time right now. I am on a medical leave of absence from the job I have had for 7 years. I am afraid that I am going to die if I get H1N1 b/c of the compromised immune system from my meds and that my 3 year old son will not have a mommy anymore - even if I get the vaccine which supposedly will protect me from getting H1N1, because of the extra ingredients in the adjuvanted one which is the only one available to me, I am still afraid I am going to die as my immune system goes crazy from the boosters in the vaccine and therefore my son will still be left without a mommy...

So frustrated...
TisJustMe
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Old 11-04-2009, 08:50 AM   #4
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Re: Lupus and H1N1

Hey SW, I was just wondering how you are feeling now?

Tis
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Old 11-17-2009, 03:57 PM   #5
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Re: Lupus and H1N1

Hi TisJustMe,

I have had Lupus for 11 years...as i'm sure you can relate to...I have my ups and downs and some days are better than others. I completely understand what you are feeling and your frustrations. I think when you or I as Lupus patients are bombarded with fear like what they are doing with the H1N1 scare, it is out of fear that we assume the worst. I feel frightened as well being on immuno suppresants and not being sure about the vaccination. What troubled me is when I went to see my Rheumatologist, they had said to get the non-adjuvented vaccine but then they changed their mind and said if it's not available to get the regular one that boosts your immune system. Because of fear...
I ended up getting the vaccination with the immune booster. I am currently monitoring how I feel and to be honest, not that great. I have a fever and feel very weak.

Another thing that troubles me is when people who know they are sick nad have H1N1 come in to work. Yesterday there was a woman who came into the office who had it, now I am not only paranoid that I could get it but today, I started having a fever.
All that to say...I understand what you are going through. Try and stay positive..I"m sure you will be fine and your son will see you live to an old age!
Take good care of you.

 
Old 11-19-2009, 10:43 AM   #6
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Re: Lupus and H1N1

TisJustMe,

I hope you are well. I sorry for not replying sooner but the flu did a number on me for sure.

Thanks for asking how I was and I hope that you are feeling very well.

Peace,

SW
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