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Fats
New Member


Date Joined Nov 2007
Total Posts : 17
   Posted 11/16/2007 10:10 AM (GMT -6)   
So i got released from the hospital one week ago and i've been trying to ind out as much as possable about UC. My first flare was a terrable experence that i'm not stoked to go through again so i quit smoking (hard seeing as i'm dealing with the stress of this new addition to my life), i've been resurching diet as well as life style changes nessasary to get back to normal life. my one big question is about the strength of my immune system on the drugs i'm on. I've been told by the pharmasist that the humira as well as my pills make me weak to germs and virus's, thus i will easily get sick. Hes suggested compleat and constant disifection on my home, as well as constant hand sanitizing. So i am basicly i'm a prisoner in my own home, i've spent 23 and a half hours at home a day since i've been out of the hospital (cabin fever setting in). Then one of the people treating me in the hospital phoned to check in and told me this was over kill, that i could go into public and not fear become ill, and risking the quality of my treatment. This is all very new to me and i'm just trying to accept it, i don't want to let this take over my life but at the moment it has. Has anybody been on these drugs? I have to wait to see my GI for a few weeks, so until i can ask him any info would be so helpful.
thanks for you time.
 
>40mg prednisone
>100mg azathioprine
>500mg ciprofloxacin
>600mg ferrous gluconate
>Calcium and vitamin D
>HUMIRA injectins every 2 weeks.
tapering off predizone, going off cipro and ferrous, adn upping azathioprine by january.


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/16/2007 10:47 AM (GMT -6)   
I casn't speak for humira and remicade, but I am on Imnuran and moderate doses of pred for a long time now and I still don't get many colds and recover quickly when I do, by and large. of course, I say that now and then I'll get hit with the flu.
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 17.5 15 12.5 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO
Turmeric/circumin, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD)
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 11/16/2007 12:49 PM (GMT -6)   
Hi...welcome to the forum!

I think the suggestion of constant sanitisation can set you up for more problems and I agree it's overkill...but do be careful, wash hands before touching food and of course after bathroom or blowing your nose..especially when arriving home from being out. Avoid putting your fingers in your mouth and that includes licking them to turn pages..etc unless they've just been washed. Change kitchen wash cloths daily as well as hand towels, don't share towels with others and change your toothbrush once a month. Those are just the basics for anyone during cold season.

Don't use antibacterial soap on your hands constantly..a mild soap (liquid) would be better.

Make sure you do take probiotics and vitamins/minerals and eat a well balanced diet. Vitamin D with cal/mag is a good way to maintain bone/muscle/mood. Make sure you get enough rest.

Regarding the flu....it's a respiratory virus...not gastrointestinal.
I don't know if you'd qualify for the flu shot considering your recent flare and the meds....you could check it out.

I don't think that staying low for a while is a bad thing...but you do need to keep a good suport system of family and friends either by phone, in person or internet.

Definitely do the research and ask lots of questions on this forum.

It takes a while for us to figure out how it all works for us. Please don't become a prisoner of your situation...but make choices whether to go wherever with whom ...etc.

Keep us posted as to how you're doing and feeling....allow yourself time to heal.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Fats
New Member


Date Joined Nov 2007
Total Posts : 17
   Posted 11/16/2007 1:04 PM (GMT -6)   
thanks that helps, i was worried that i could be doing more harm than good with the hand santizer (useing it all day long). This forum i think is going to be one of my better resorces, glad i found it. thanks for the advice, the more the merrier.
>40mg prednisone
>100mg azathioprine
>500mg ciprofloxacin
>600mg ferrous gluconate
>Calcium and vitamin D
>HUMIRA injectins every 2 weeks.
tapering off predizone, going off cipro and ferrous, and upping azathioprine, all by january.


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 11/16/2007 4:42 PM (GMT -6)   
Hi Fats, and welcome to HealingWell! I am on Remicade, and I used to have the same fears about getting ill. Please do not let whoever said this to you fearful of getting out of your house -- heck I'm healthier than most in my office! (Knock on wood?) I'm an advocate of washing your hands, not putting your hands in or near your eyes, nose or mouth (use a tissue) and I also use Zicam and Airborne when I feel like I'm coming down with something or I'm getting on a plane -- or someone near me is ill. Within the last two weeks I've flown to Dallas, and then up to Seattle and sat in meetings and planes with people hacking. Maybe I'm a bit more proactive than others, but I don't go overboard either. Take care, and I hope you find this info useful. Again, welcome!

Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 11/17/2007 2:26 AM (GMT -6)   
Carol...yes, the eyes and nose as well...and recently I heard ears!!! Oh those little bugg..s!!

q
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 11/17/2007 9:09 AM (GMT -6)   
I've been on Remicade for nearly two years, as well as azathioprine. They do allegedly suppress the immune system, but I've had one cold in the past two years and no other infections of any kind. I do wash my hands a lot, and keep them away from my face. I try to eat a balanced diet and take a mult-vitamin daily. Another good tip is to clean your telephone, especially at work. Use a disinfecting wipe to clean the receiver. A study about ten years ago found that telephone receivers were one of the richest sources of cold and flu viruses in the environment. Also, stay out of crowds during flu season in your area.

My immune system seems to be so charged up, it was hard to knock it down enough to get a remission. I don't know if anything would get it down enough to make me get a lot of infections.

The important thing, IMO, is not to live your life in fear. The point of treating your UC is to try to get as close to a normal life as possible. Locking yourself in your home and incessantly disinfecting isn't a normal life.
Judy
 
Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 
 
Now in remission for almost two years. Remicade has been my wonder drug.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 11/17/2007 10:38 AM (GMT -6)   

I take MG Beta glucan to keep my immune system stoked up. I am an elementary school teacher and haven't had so much as a sniffle since I've been taking it. Has benefits for those taking chemo or radiation as well. I don't promote any particular product, but if you are interested in learning more about Beta-glucan, here is a link:

http://www.nsc24.com/questions.htm


sarah123
New Member


Date Joined Jan 2006
Total Posts : 16
   Posted 11/17/2007 11:07 AM (GMT -6)   
hi
not only do i work at a hospital but i also have a 10 mos old son who coughs and snots all over me daily...i'm on remicade and imuran and have had no major issues...i do wash my hands a lot and thats about it. and i do stay away from people if they're sick.
 
no point on being on humira and all those other drugs and staying home all day!!! time to live...esp. when you're symptom free- b/c if/when you get another flare and are stuck in the bathroom for a few days, you'll wish you were able to go out.
Sarah, 30F
diagnosed w/ UC 1996
currently on Imuran 150mg
tapering off prednisone--3 weeks to go!
Remicade- 2 treatments so far.


Fats
New Member


Date Joined Nov 2007
Total Posts : 17
   Posted 11/17/2007 11:36 AM (GMT -6)   
fair enough, thanks that helps alot. i think i shall start returning to normal life.
>40mg prednisone
>100mg azathioprine
>500mg ciprofloxacin
>600mg ferrous gluconate
>Calcium and vitamin D
>HUMIRA injectins every 2 weeks.
tapering off predizone, going off cipro and ferrous, and upping azathioprine, all by january.

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