New Topic Post Reply Printable Version
62 posts in this thread.
Viewing Page :
 1  2  3 
[ << Previous Thread | Next Thread >> ]

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/27/2009 8:27 AM (GMT -6)   
so this is my latest major paranoia- what the heck is going on with this flu?!?!?! With my extremely compromised immune system, I can not deal with a possible flu threat. Mentally, I mean. Is anyone else terrified of this? I see my GI next month, & have decided to stop one of my meds- either Imuran or Remiacde. Most likely the Imuran- I think the Remicade is still helping somewhat, & I'm loathe to stop unless I absolutely have too. But I am completely done with living in fear of every germ/bug that crops up- I suppose if things go horribly downhill after stopping Imuran, I will try to use Humira. If I can't get that, or if it doesn't help, I guess it's time to look into surgery for real. I'm at the point where I'm so tired of being scared, keeping my colon is not worth the mental drain I deal with every time *someone* around me becomes ill. Do any of you worry about this flu?
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 4/27/2009 9:18 AM (GMT -6)   
I haven't really noticed that I've gotten any sicker since I started taking Remicade nearly two years ago. I did come down with strep - which I never had before. Obviously, if I was sick I would postpone an infusion but in general I don't feel like Remicade has taken a toll on my immune system.
Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/27/2009 9:23 AM (GMT -6)   
I agree with Scrap Girl. I've had two colds and one sinus infection in the past five years. I do plan to keep a mask available, so if I go into someplace where someone has obvious flu symtoms - sneezing, coughing, etc - I can put my mask on. I'll also be staying away from any crowds I don't have to go into.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/27/2009 10:00 AM (GMT -6)   
I'm so envious of your cavalier attitude! Really! While I too haven't become ill more frequently since I started Remicade, when I do get sick, it's been BAD. Like, ICU bad! And since Remicade is immune suppressing in general, it just freaks me out. What I really should do is look into counseling, or some self-help book, about living & dealing with chronic illness!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 4/27/2009 10:23 AM (GMT -6)   
i am nervous about it because my wife is 6.5 months pregnant.... i have heard reports of a case in eastern ohio, i am in western pa... i have a feeling it is going to spread exponentially....hopefully it does not mutate like they are saying it can....
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 30mg pred (as of 2/01/09), 12x pills Asacol per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Spinach and sunflower seed diet (moderated recently due to kidney stones). Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 4/27/2009 10:51 AM (GMT -6)   
I used to get scared when I got SHINGLES! I was like 21! I think the 6MPs lowered my immune system and I went to a large crowd in LA. Whenever I was on Immune suppressors I tried to stay away from sick people...

I'm not really worried because I don't really leave the house these days. I hate going to Dr offices when there are a lot of contagious people. :p

SIDE NOTE: Were you unusually healthy when you were younger? I feel like I never got sick when I was young and now I am paying for it with my colon... Anyone else?
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)

Meds:Bump up every couple years... You name it, I've used it! Sulfasalizine, Asacol, Rowasas, Pentasa,
Remicade, 6mps... And now it looks like the once daily Lialda taken twice a day isn't enough...
Here comes Humera.

Soon to be mom- hopefully! As long as this flare dosen't take me out...


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 4/27/2009 10:56 AM (GMT -6)   
I'm on 6MP and I don't get sicker than normal. I worry about it sometimes but not too much. If you're living in fear like you say, I think it's a good idea to seek counseling. It's bad enough worrying about UC but worrying about getting other illnesses on top of it is no fun.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
Lialda, 6MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


jeffereyr123
Regular Member


Date Joined Jul 2007
Total Posts : 65
   Posted 4/27/2009 11:20 AM (GMT -6)   
Maybe this will ease your minds just a bit. This is a quote from msnbc.com on why those who have died have been relatively young and healthy.

"One theory is that the virus triggers an excessively aggressive immune response that destroys the throat and lung tissue. Young adults, with the most robust immune systems, may be especially at risk."

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/27/2009 11:52 AM (GMT -6)   
you're right when you say I ought to look into counseling- I don't though, because I don't feel like dealing with another doctor's appointment on a regular basis! Such a lame reason. I may try to find some books at the library. That "robust immune system" quote absolutely did not ease my mind- wouldn't you think that "our" immune systems are super robust as is, hence the immune suppressors? I'm just keeping an eye on the news, re. swine flu. Keep posting people, especially if it hits your home state- I'm in Massachusetts, & so far so good. But NYC is pretty darned close. Plus, get this- a women I work with is in Cancun right now! We all plan to avoid her upon her return. Not meanly, but....

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 4/27/2009 12:11 PM (GMT -6)   
When I was on 6-mp I got mono. A REALLY REALLY bad case of mono (if anyone remembers that...). I don't know if it was from my immune system being compromised or what but it took the doctors a long time to figure out I wasn't fighting the mono because I was on 6-mp...duh!! But other than that I wasn't anymore sick than usual.
I'm not really worried about the flu. It hasn't come anywhere near Minnesota yet. But it does scare me how easily these viruses can mutate....

ps. I was ALWAYS sick as a kid. I have at least 3 cases of strep a winter and had chronic ear infections. I think my immune was just bad to begin with.
Sam(antha)
20 year old college student diagnosed in March 2005
Remission since January/April 2006->THREE YEARS!!!!!
Trying Colazal 3 750mg x2 (NOT for a full blown flare, just some random symptoms)
25mg Elavil
75mg Effexor XR for GAD
Will possibly go back to asacol
"If you don't like something, change it. If you can't change it, change your attitude."
Maya Angelou


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 4/27/2009 12:23 PM (GMT -6)   
So maybe we are the safest!
Jessica 27/F
Remicade
Lialda 4.8GM
Citalopram 20 MG


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 4/27/2009 12:26 PM (GMT -6)   
     My husband came down with a really bad upper respiratory infection about a week ago.  He called the doctor who sloughed it off as allergies.  Love when they do that.  Anyway, he started running a fever, bad sinus congestion and finally cough and chest congestion.  So, Friday morning, I gave him Cipro that I had lying around for the last six months.  It was still good.  Well, he started to improve almost immediately.  I know you really shouldn't do this.  But our family doctor...or I should say a whole slew of doctors, doctor assistants and nurse practioners....are not available over the weekend and something just had to be done.  Today, my husband is much improved.  Needless to say we have been sleeping in separate bedrooms.  I am on 6MP and my last white count was only 2.9, so I am just keeping my fingers crossed I don't come down with this bug. 
     I haven't gotten a flu shot for the last three years.  The reasoning behind this is that every darn time I get a flu shot, I come down with the flu.
     Eva...don't panic.  I think the news people love all this hype.  But, if I were you, I wouldn't plan any trip to Mexico in the near future..lol.  I won't either.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 4/27/2009 12:45 PM (GMT -6)   
callalily22 said...
When I was on 6-mp I got mono. A REALLY REALLY bad case of mono (if anyone remembers that...). I don't know if it was from my immune system being compromised or what but it took the doctors a long time to figure out I wasn't fighting the mono because I was on 6-mp...duh!! But other than that I wasn't anymore sick than usual.
I'm not really worried about the flu. It hasn't come anywhere near Minnesota yet. But it does scare me how easily these viruses can mutate....

ps. I was ALWAYS sick as a kid. I have at least 3 cases of strep a winter and had chronic ear infections. I think my immune was just bad to begin with.



I was also always sick with strep and ear infections as a kid. I lived on antibiotics.
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 30mg pred (as of 2/01/09), 12x pills Asacol per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Spinach and sunflower seed diet (moderated recently due to kidney stones). Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16728
   Posted 4/27/2009 1:03 PM (GMT -6)   
I am worried too. I get sick if someone blows in my direction. I need to get a mask.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
December 08 - Began treating with Asacol 400mg (9 a day)


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 4/27/2009 1:16 PM (GMT -6)   
I don't worry about myself. I work from home. I do worry about my younger daughter. She's attending university, is very social, and likes to hug her friends. I'll have to tell her to be more careful.

I don't think this will become too big of an epidemic. We are more cautious nowadays. Food preparers use gloves. We can wear disposable masks if the disease spreads to where we live.
Joy - 47 yrs and counting
Colitis Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/27/2009 1:25 PM (GMT -6)   
I'm a little bit worried, but more for my baby (he's 6 months old) than me. We flew on Wednesday and Sunday this past week, which always increases your exposure to lots of nasties. The good thing is that it apparently only has a 48 hour exposure, so I'll be a lot less worried when Wednesday rolls around.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


PalaceDan
Regular Member


Date Joined Aug 2008
Total Posts : 50
   Posted 4/27/2009 5:45 PM (GMT -6)   
I think there's a good chance that this will infect a lot of people. Chances are as it spreads it'll get less dangerous (because mutations are normally successful ones, which in the case of a virus means spreading itself better - and if everyone that gets a virus ends up too sick to go out and cough and sneeze on people then it's probably going to be less successful at spreading itself).

The theory is indeed that the healthier the immune the response the more dangerous it is. Apparently the fluid build up in the lungs of those who died may be a result of their very effective immune response. So the stronger your immune system the worse it is for you.

What I don't get is, I thought the problem was that our immune systems were overactive - which would be bad news for us. Isn't our problem our immune systems getting over-excited and attacking things they shouldn't?

I very rarely get sick. I have two small children in a house of five, and plenty of coughs and colds go around and I'm always the most robust. So I assumed that was the silver lining to my UC cloud. What did I misunderstand?
Diagnosed November 2007
10cm moderate
Canasa 1000mg 2 per day, Asocol 2x2 per day, Digestive Advantage Crohns and Colitis probiotic, Animal Pak multivitamin, Aloe gel, concentrated fish oil


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/27/2009 8:24 PM (GMT -6)   
Here's what I believe is the latest news on the swine flu pandemic...
 
 
 
:)
My bum is broken....there's a big crack down the middle of it! LOL :)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/27/2009 8:26 PM (GMT -6)   
PalaceDan said...
I think there's a good chance that this will infect a lot of people. Chances are as it spreads it'll get less dangerous (because mutations are normally successful ones, which in the case of a virus means spreading itself better - and if everyone that gets a virus ends up too sick to go out and cough and sneeze on people then it's probably going to be less successful at spreading itself).

The theory is indeed that the healthier the immune the response the more dangerous it is. Apparently the fluid build up in the lungs of those who died may be a result of their very effective immune response. So the stronger your immune system the worse it is for you.

What I don't get is, I thought the problem was that our immune systems were overactive - which would be bad news for us. Isn't our problem our immune systems getting over-excited and attacking things they shouldn't?

I very rarely get sick. I have two small children in a house of five, and plenty of coughs and colds go around and I'm always the most robust. So I assumed that was the silver lining to my UC cloud. What did I misunderstand?

the jury is still out on if it's over or underactive so they pretty much just go with "inappropriate response of the immune system".
 
:)
My bum is broken....there's a big crack down the middle of it! LOL :)


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/27/2009 9:52 PM (GMT -6)   
Just heard there are 3 confirmed cases of it in MY county!
Kara, 22F Married.
Latest-Finally tapering off prednisone 5mg every week.. Staying on Lialda 2 twice a day. Currently colonoscopy shows remission. Apparently my symptoms are from my IBS side of my issues.
Medications:Prednisone 35mg, Lialda 2 twice a day, Align probiotic, Anti-spasmodic as needed.
I am so sick of this disease!
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/28/2009 6:57 AM (GMT -6)   
I am flying home from DC tomorrow. I've only had one infusion. Should I wear a mask? Has anyone asked a doc? Our staff doc (an expert on pandemics) advised office travelers that evidence that masks help is "scarce" and that it's unlikely you will come into contact with someone infected (so far). But that's advice for normal people...

Maybe if I see others in the airport with them, and they sell them there, I will. I get my second infusion Thursday, I'll be asking questions about it!

My sisters and I were extremely healthy kids, never missed a day of school. My mother was school nurse, we probably built good immunities.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone 40mg, down to 10mg so far so good... Humira denied, started Remicade 4/12 and doing great~ 


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/28/2009 7:03 AM (GMT -6)   
Peety take care. Not a bad idea to wear a mask.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 4/28/2009 7:05 AM (GMT -6)   
     I was always sick when a child.....sinus infections, ear and throat problems.  Had my tonsils out at five yr old.  Our family doctor would prescribe erythromycin as I was allergic to penicillin.  I think that was the route of my problem....too many antibiotics.
     Mentioned in an earlier post about hubby being sick with upper respiratory infection last week.  Well, he's all better, today I have a scratchy throat...oh joy.  Hope it is just allergies as the pollen is blowing everywhere.  Very HOT here in south Jersey for past four days too. 
     I live close to Philly and they have had a few confirmed cases of Swine Flu.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/28/2009 7:46 AM (GMT -6)   
We have one confirmed case here in MI and the way I look at it is, I will do what I can to protect myself but if it happens it happens. I will take all the precautions but I refuse to live my life in fear of contracting any sort of illness.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 4/28/2009 8:23 AM (GMT -6)   
Totatally agree with you Sherry!
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade

New Topic Post Reply Printable Version
62 posts in this thread.
Viewing Page :
 1  2  3 
Forum Information
Currently it is Saturday, September 22, 2018 10:00 AM (GMT -6)
There are a total of 3,005,664 posts in 329,249 threads.
View Active Threads


Who's Online
This forum has 161795 registered members. Please welcome our newest member, jjakefamily.
283 Guest(s), 10 Registered Member(s) are currently online.  Details
ezhoe, Albannach, sebreg, GuitarGERD, BillyBob@388, Yellow19, Chow Wan, Alxander, RunJerRun, Pixie415