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Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 8/29/2009 8:56 AM (GMT -6)   
     With all this hype about the pandemic of Swine Flu, I was just wondering how many of you suffering with UC intend to get the flu shot.   I haven't gotten the regular flu shot for the past three years and was able to avoid getting sick.  Before that, whenever I got the flu shot, I wound up getting as sick as a dog!
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 8/29/2009 10:33 AM (GMT -6)   
I don't bother with regual flu shot, even though I get a lecture from my doc every year on it... I also give him a lecture back about it, lol. As far as swine flu vaccine.. Our county is getting the shot from 5 different manufacturers. No one has any idea what is in any of them, safety, or actually how effective they will even be. Unfortunately, if anyone gets a bad reaction from them you we are just SOL, because you have to prove the shot was given with intent to harm before you can even gain any compensation. Its actually a great setup if you are company selling these, lol. Some of the hospital people and docs I talk to are split on it. Be interesting to see how it all plays out.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


Capsid
Regular Member


Date Joined May 2004
Total Posts : 300
   Posted 8/29/2009 10:49 AM (GMT -6)   
Yes I get my annual flu shot. I've never got sick after having it. I'm on Imuran so I don't want to minimise the chances of getting a serious viral infection.
Mark
 
200mg/day azathioprine


songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3698
   Posted 8/29/2009 11:10 AM (GMT -6)   
I always get a flu shot and have never had a reaction from it. I had the flu once and thought I was going to die -my goodness, I bled and bled and flared for a long time after!
I will get whatever swine flu shots are offered.
Diagnosed UP 1983, Azulphidine
Diagnosed UC 1986 Prednisone almost 2 years
Asacol - 16 pills a day
Metamucil - 2 doses a day
Cortenemas or Rowasa from time to time
VSL#3, Ultimate Flora Critical Care
Canasa as needed


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 8/29/2009 11:13 AM (GMT -6)   
     I'm with you DrA.  I worked for a doctor back in 77 when the Swine Flu was "supposedly" going to hit with a vengence.  I was pregnant with my youngest daughter at the time.  My OB/GYN doctor wanted me to get the shot.  I had some misgivings about it.  The doctor I worked for didn't want to go against my OB/GYN doctor but he said..."Chris, not enough research has been done on that shot and in my professional opinion (which I highly regarded) I wouldn't get it."  That was good enough for me.  I never got the shot, the virus never struck and two of our patients who did receive the shot had horrible results.  One developed the Epstein/Barr syndrome and eventually wound up in a wheel chair.  The other patient apparently had some kind of bug when he got the shot, became violently ill and passed away.
    
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/29/2009 11:54 AM (GMT -6)   
I always get the regular flu shot, ever since I had a case of the flu that lasted for 6 weeks. Every time I'd start getting better, I'd start with the fever and aches again.

I don't know that I'll have to make a decision on the H1N1 vaccine. According to what they're saying now, it's going to be offered first to pregnant women, then children, health care workers, chronically ill and people between 18 and 55 or 60. By the time they get to me, they'll likely have run out and/or flu season will be over!
Judy
 Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001. Flared for 5 years, finally in remission with Remicade since March 2006. Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
Avascular necrosis in both shoulders is  my "forever" gift from steroids.
Chronic joint/connective tissue/muscle pain; TKR 05/09 
"My life is an ongoing medical adventure"
 


Gemsi
Veteran Member


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/29/2009 12:11 PM (GMT -6)   
Sorry for butting, in, I know I don't belong, but just saw swine flu topic and thought I'd have a gander.

Here in the UK, it's been reported that they basically have a base vaccine ready for any panademic, this base vaccine has been tested lots and lots to mak sure it's as safe as the regular flu shot. When something like swine flu comes along, then they just take the base vaccine and add the virus too it. So what is coming out, should be a safe enough vaccine if it is being made in this way. As the only new ingrediant added to the vaccine will be dead or inactive/weakened H1N1 virus.

Just thought I'd add in what I knew, hope you don't mind too much:)
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 8/29/2009 12:35 PM (GMT -6)   
Darkies Gem said...
Sorry for butting, in, I know I don't belong, but just saw swine flu topic and thought I'd have a gander.

Here in the UK, it's been reported that they basically have a base vaccine ready for any panademic, this base vaccine has been tested lots and lots to mak sure it's as safe as the regular flu shot. When something like swine flu comes along, then they just take the base vaccine and add the virus too it. So what is coming out, should be a safe enough vaccine if it is being made in this way. As the only new ingrediant added to the vaccine will be dead or inactive/weakened H1N1 virus.

Just thought I'd add in what I knew, hope you don't mind too much:)


Thanks for the info! Have they actually provided people a list of whats in it? Our media reports same thing, but really doesn't know anything about it when you ask, lol. I can't even get the info from our reseach hospital. There are 5 or more different ones being produced so its not just one vaccine that's being fast tracked through. They are gonna have different adjuvents, maybe even different concentrations depending on the single dose and multidose vials within the same manufacturer. It's not the virus that some people are worrying about its the adjuvents being tossed in to increase the potency. Best thing for those getting it is to figure out which one is best and carries least risk.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


Gemsi
Veteran Member


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/29/2009 4:21 PM (GMT -6)   
Luckily, we only have 2 vaccines being fast-tracked to pick from, which will be made available when they get the license for them sometime in October. The vaccines are already in the UK and ready to use. Ours are coming from companies "Baxter Healthcare" and "GlaxoSmithKline". Both pretty recognisable names in the UK for med making and toothpaste making lol.
I haven't yet since a list of what's going in the vaccine, and too be honest, am not too bothered about it. As shoddy as the UK healthcare is sometimes, we do have one of the best immunisation programmes. As much as our polititians suck also, they don't want the NHS using up even more money having to treat people through dodgy vaccines (we run on a very free and very overun health service), so I'm confident they're looking into it properly.

I'm gonna be one of the first in line for the vaccine.......So I'll let you know if I drop dead lol, and I'll let you know which one I get, if I find out. Don't think we're gonna get much choice in which we get.
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/29/2009 7:33 PM (GMT -6)   
I totally want to get the H1N1 vaccine! I never ever got the "regular" flu shot for most of my life, but have gotten one the past 2 or 3 years- ever since I've been on immune suppressants. And I've never gotten ill with either the flu, or anything from the vaccine. I have though, been very ill with pneumonia, made worse by the immune suppressants I'm on. I work in a health clinic, sick people everywhere, I'm immune-suppressed, & have a chronic illness- I think I qualify! I see my PCP for a physical in September & plan to ask him about it then. My employer also gives flu shots to it's employees, so I'll get the regular shot from them- not sure yet if they will have the H1N1 for all employees- but according to govt. mandates, I think they will. The thing I'm wondering though, is if the H1N1 vaccine is a live vaccine? I haven't been able to find that out.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 8/29/2009 8:11 PM (GMT -6)   
http://news.yahoo.com/s/ap/20090814/ap_on_re_eu/eu_britain_swine_flu_vaccine

"In Europe, Glaxo is testing vaccines with an adjuvant, a chemical compound used to stretch a vaccine's active ingredient and boost the body's immune response.

In Canada and the United States, Glaxo is testing vaccines both with and without adjuvants. Neither country has ever licensed any flu medications that contain the compound.

The safety of adjuvant-boosted flu vaccines on pregnant women and children — two of the groups thought to be most at risk from swine flu — has yet to be determined conclusively."


Absolutely no idea what different adjuvents they are tinkering with. I have heard everything from higher doses mercury to squalene which gave all the problems with anthrax vaccine. If they are done with the formulas there should be inserts available somewhere.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


NiRo
Regular Member


Date Joined Aug 2009
Total Posts : 198
   Posted 8/29/2009 8:50 PM (GMT -6)   
Haha Dr-A, let the confusion begin:

www.nytimes.com/2009/08/22/us/22flu.html?_r=1&ref=research

"Unless the virus changes, health officials do not expect to recommend mixing in adjuvants. Adjuvants, usually oil-water emulsions or aluminum salts, boost the immune system but also often heighten unpleasant side effects."

Bottom line, I think it's too early to tell!
Lialda 4x a day (2x in the morning, 2x at night)
Rowasa Enema 1x at night
Align (Probiotic) 1x a day
Fish Oil 4x a day
Multi-Vitamins (includes B-12, Vitamin D, Vitamin C) 1x a day
Diagnosed with Pancolitis (Moderate in 4/5th of the colon, Mild in 1/5th) in July 2009

Post Edited (NiRo) : 8/29/2009 7:53:56 PM (GMT-6)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/29/2009 9:31 PM (GMT -6)   

I ALWAYS get the flu shot, never have any effects and don't get the flu even when everyone else does. Last time I didn't (many years ago) and got the flu, it was very hard on my health.

I will definitely get the h1n1 shots, as soon as I can! We (chronic disease) aren't very high on the priority list and there will be a shortage. Kids and young people, kid caregivers, healthcare workers first. Elderly are last on this one, since they seem to have immunities and aren't getting this flu.

If you have a chance to go to a presentation by your health department you'll learn some interesting stuff.

Like, it's expected to come in waves of about 4 weeks, estimates are 10-25% will get it and they will tell you to just stay home -- for 7 days or as long as you are sick, whichever is longer -- don't even go to your doctor (just call). It can be spread on hard surfaces, good grief! Schools will try hard not to close, because kids tend to congregate anyway if schools close. Our plans to prepare in the U.S. are based on what they have already gone through in Australia.

I'm a little nervous, not knowing if Remicade will affect my susceptibility if I'm not able to get shots before I'm exposed. I asked about it last Spring when it first hit, was told not to worry...but my husband is a schoolteacher and I live in a college town...I think we will see lots of it (45 cases at the university already)...

Update! The number of cases at the local university is now more than 300



49 year old female attorney, diagnosed UC/pancolitis 1985. 
Asacol maintenance for 20+ years; 
Prednisone & Rowasa for flares. 
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some. 
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow

Post Edited (Peety) : 8/31/2009 8:28:32 AM (GMT-6)

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