Relieved to have this support....

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flmom
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 1/29/2009 8:07 PM (GMT -6)   
New to be diagnosed with UC, within the past 6 months, but have been suffering for at least 10+ years.  I dont even know where to begin with all the symtpoms, medications, etc.  Happy to know that other people deal with these type of "anal" issues.  I had no idea it was so popular and this many people have the pleasure of experiencing this.  right....
 
Most people, as it appears, are used to the prednisone (which was wonderful at 40mg), but I have come to not like it so.  The moonface and weight gain dont work so well for someone with an eating disorder.  I cant believe since this last "flare" episode, now lasting at least the last year and yet to be in remission, calls for so many medications and side effects.  Side effects include anxiety, depression, and a very new horrible arthritis.  Apparently I cannot take the mescaline drugs due to bad reactions and am about to begin remicade.  Very scary at first...I thought it was a shot in the rear.  Come to find out it was 2 hours worth or an intravenous drug!  Left that appointment the other day crying, cant believe this is a medication I HAVE TO have in order to live a "normal" life. 
 
Anyway, lots to say, but dont know where to begin.  Very happy my mother found this site and forwarded on.  Feels good to have this support :)

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 1/29/2009 10:14 PM (GMT -6)   

Welcome.  Sorry to hear your are having such a hard time of it.  Just to put your mind at ease, many of us have been on remicade for quite a while. I personally have been on it for over 3 years with great success.  To make it easier for you make sure you are well-hydrated when you go for your infusion as it will make it easier to find a vein.  Second - bring something to do.   I usually bring a movie with me, others bring books, ipods, etc.  It's really not all bad.  The only reaction I've ever had is feeling tired the rest of the day.

Hope it works for you and you start feeling better real soon.


KTM


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/29/2009 11:59 PM (GMT -6)   
Welcome to HealingWell. I'm also on Remicade for nearly three years and in complete remission for almost as long. I've gone so long without taking steroids, I can't even remember all the particulars of them. The bad side effects I definitely remember, though.

I find my infusion times very relaxing; sometimes I actually nap during the infusion. As KTM said, be sure you're well hydrated, and take something to amuse yourself with. I think everyone is apprehensive the first time, but if it works well for you, you'll soon feel much better about the whole process.

Good luck, and keep us posted.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/30/2009 7:30 AM (GMT -6)   
Hi and welcome! I know th relief of finding others in the same boat as you. I found HW little over 4 years ago and I was astounded that I found more people then I thought possible that shared this horrible condition. It gave me a peace of mind knowing I wasn't alone any longer. Welcome again and if you should have any questions or concerns, don't hesitate to post.
 @--->--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-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


flmom
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 1/31/2009 6:12 AM (GMT -6)   
Once you get in remission, does the tiredness all the time go away? That is my husbands only complaint, I am tired all the time. I never related the disease to it, but from what I read that is yet another part of it.

After researching Remicade, I am ready to try it and get a "normal" life. Can wait.

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 1/31/2009 6:49 PM (GMT -6)   
Some the medications can actually make you tired as well.  I find with the Remicade I am usually completely exhausted the day I get my infusion - and mildly tired the next few days.  But after that energy levels are definitely up.  I'm still pretty wiped out at night - and am usually sleeping between  9 & 10 at night (I think that is from one of my meds), but it's not the same exhaustion as that flaring UC exhaustion.

KTM

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