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Flu shots/Gareth update


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#1 Margaret

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Posted 10 September 2009 - 12:26 PM

Hi Everyone,

I am curious as to whether everyone is going to jump at the Swine flu shot if available? I have Gareth set up next week for the regular flu vaccine but can't ever remember from year to year if is a 'good thing or bad thing' when one has a lowered immune system. I do know that last year he had 2 shots, one flu shot and one pneumonia, but he still got pneumonia. Just curious.

It's been a loooooooong summer with him. He had that horrible reaction to the Dilantin/Lyrica combo in June, his thyroid shut down, his liver numbers shot up, and he was hospitalized for 6 days with pneumonia (AGAIN) in July. We got him on Synthroid, off the D & L, and back on Depakote. At the end of September, he will go into the hospital for a week of testing for these seizures. They will hook him up with wires and video tape him to figure out what type of seizures they are and, hopefully, come up with some medication that will work but not have severe side affects.

Birdman has been on my mind all afternoon.........

Take care, Everyone.
Margaret

#2 Shelley Ensz

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Posted 10 September 2009 - 03:04 PM

Hi Margaret,

I'm sorry Gareth has been through so much lately. Birdman has been in my heart all day today, too.

I believe the general recommendation for scleroderma is that people get vaccines that they are eligible for, but don't just go to the flu clinics in drugstores, etc. Go to the primary care doctor, who has the complete medical history, and get specific advice as to whether it is recommended in your particular situation, or not.

I get the flu shot, thimerisol-free version, but I can't get the pneumonia shot because they don't make it thimerisol-free (I'm allergic to thimerisol, the active ingredient of which is mercury). My doctor had to read through a lot of information to determine that it was okay for me to get the shingles shot, recently. So it is on a case-by-case basis, considering all the symptoms, medications, and allergies.

But this flu tends to hit the hardest in young people, and those who are already ill, so Gareth would have a pretty good chance of being in the group most likely to benefit from the shot, if he is otherwise eligible for it.

As you know quite well, I am not a doctor, I have no medical training at all, and not even a fake stethoscope that I can hang around my neck. So don't listen to a word I say, unless your doctor agrees with it. :blink:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Gidget

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Posted 11 September 2009 - 08:57 AM

Margaret,
My rheumatologist told me NOT to get the H1N1 vaccine as there is no way to tell how someone with an autoimmune disorder will react to it as it is so new. In the meantime, a sanitization gel is my new best friend. I do not plan to get the flu, pneumonia or H1N1 vaccines as I believe that I got sclero from the Hepatitis or Typhoid vaccines. Can't prove that these vaccines caused sclero but within 8 months of the vaccine, I had it. I am also holding off on my daughters Guardasil and spinelmengitus vaccines until I see what happens with the H1N1 as there is no reason to weaken her system in time for the H1N1 season. Excuse my poor spelling. Good luck. Gidget.

#4 Snowbird

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Posted 11 September 2009 - 09:45 AM

Hi Margaret

I would definitely check with Gareth's primary physician to be sure as well...same with any flu shot...like Shelley mentioned, good for some, not necessarily good for others. Sorry to hear he's had such a difficult time...sure hope he gets a break soon and those tests help to get him back on track!
Sending good wishes your way!

#5 Kamlesh

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Posted 11 September 2009 - 10:55 AM

Margaret,

At least for last 10 years, I have been taking flu vaccination. It has worked for me and I rarely get flu. In case, I get flu, it is significantly milder.

I am also planning to get H1N1 (swine flu) vaccination when available next month at my primary physician’s office.
Kind regards,

Kamlesh


#6 Sweet

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Posted 11 September 2009 - 11:54 AM

Hi Margaret,

I'm so sorry for you and Gareth. *hugs*

I do get the flu shot and my rheumatologist recommends it. I see him in 2 weeks and had planned to ask about the H1N1.

I'll report back.

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 ladyhawke

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Posted 11 September 2009 - 02:51 PM

Hi Margaret, I'm sorry to hear about Gareth's problems. I'm glad that you brought up this subject of the flu vacs as well as the H1N1....I've been wondering about it myself. I used to get the flu shots regularly for a few years but quit getting them long before I got sclero. Now I'm wondering about getting them again but am so hesitant. I'm going to ask my rheumatologist on the 30th when I see him, but even if he were to say go ahead and get them. I'm still pretty scared of doing it. Am very interested to hear what others have to say.....Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#8 Eos

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Posted 13 September 2009 - 03:13 PM

Margaret,
Sorry to hear about all these health complications!
I have had the flu shot for the past few years and I have to have it this year together with the H1N1 shot,... it is mandatory for everybody at work. I have diffuse systemic sclero... nobody at work knows, I did not even write it into the annual health assessment form at work. :S
I never had issues with getting the shot... I believe it actually helped me not to develop my perpetual colds and bronchitis during the cold months.

#9 joseygirl

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Posted 14 September 2009 - 03:13 PM

I got the pneumonia vaccine too and still ended up with pneumonia. I do get regular flu shots each year, I am going to check with my rheumatologist in October about the swine flu vaccine, as a case has been reported not to0 far from where I live.

#10 gigi08

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Posted 14 September 2009 - 05:02 PM

Giget, I never even thought of the Hepatitus and Typhoid shots causing the sclero but all my problems started after I went to Africa and I needed all those shots in order to go. Now you have me wondering.
Margaret, Sorry to hear about Gareth. Let us know what you decide about the shots.
Gigi08

#11 canon

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Posted 18 September 2009 - 07:22 PM

Margaret,

Hope Gareth is doing better and hope everthing is under control. Its been a long time. About the H1N1 shot I am not sure of either. Will need to talk with my rheumatologist about it. If it is not a live vaccine like the regular flu shot it might be ok but will let you know. Glad I read your post because I was just going to get it without asking a Doctor. Take care.

With gentle thoughts,
Judy
A happy heart is good medicine.

#12 Jeannie McClelland

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Posted 19 September 2009 - 04:32 AM

Hi Margaret,

Just hugs for you and Gareth. What a summer you've had~

Much love,
Jeannie McClelland
(Retired) ISN Director of Support Services
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#13 smac0719

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Posted 20 September 2009 - 11:44 AM

Hello Margaret,

Sorry to hear how things have been, but glad to see you post and get an update on Gareth. I have pouted and said I wouldn't get it, but continue to get the flu shot yearly. Last year was the first year that I did not get the flu within a couple of months of getting the shot. I know they say you can't get the flu from the shot, but I was a believer that it weakened my immune system even more and maybe that's what made me more susceptible. However, my rheumatologists and primary highly recommend it and my job offers it for free yearly so I'll be getting it in a couple of weeks.

I though I was okay with getting the H1N1 as soon as it's out, but now I'm a little skeptical. I will ask the rheumatologists what they think. My primary was highly suggesting the Hep A & B vaccines last week, but I didn't get it because I haven't heard much about them. Have they been recommended to anyone else?
I may have Scleroderma, but Scleroderma doesn't have me!

#14 Sweet

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Posted 29 September 2009 - 01:34 PM

Hi Maragret,

I asked my rheumatologist about the N1H1 vaccine. He is recommending all his patients get it along with the flu shot. He said next year they may likely be a combined injection.

Hope this helps.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#15 canon

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Posted 29 September 2009 - 04:42 PM

Hi Margaret,

Hope you and Gareth are getting along ok. My rheumatologist recommended that I get both vaccines but to take them a few days after the methotrexate shot I give to myself every week. It is low dose but none the less it lowers my immunity. Is Gareth taking anything that would lower his immunity? If so it might be safer to ask when in the week cycle might be better for him. Will keep both of you in mind.

With gentle thoughts,
Judy
A happy heart is good medicine.

#16 Penny

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Posted 30 September 2009 - 03:12 AM

Hi, Margaret,

I am sorry to hear that our Gareth is having troubles and I hope that things get better for him soon.

As far as the H1N1 shot, I can't get vaccinated because of my egg allergies (they use chicken eggs in making the vaccines) but I can tell you that my family is planning on getting the shots not only to protect themselves but to try to protect me as well. If they do not get the flu then they cannot bring it home to me.

I have become a hand sanitizerholic in the recent years and go nowhere without my little bottle and I use it before and after entering any public building as well as using it to wipe down shopping carts (everyone handles them all the time, and it only takes a moment to clean the push bar).

This being said, I am, myself, just recovering from another bout of pneumonia brought on by a combination of allergies (it has been a very damp year here and everything outside is covered with algae and mold) and asthma and I am worried about this cold and flu season. I think that the best any of us can do is be ever vigilant on hyguene, try to get the proper amount of rest and try to avoid public venues if and when the flu hits our area.