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Ulcerative Colitis
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Posted 4/30/2010 1:33 PM (GMT 0)
     After having slow but (I thought) positive results from Humira, prednisone, Colazal and the rectal meds, today I hit a snag.

     I am down to 10 mgm of prednisone but my urgency seems to have worsened and today was the first day I noticed some blood whereas I haven't seen any blood in my stool all month. shakehead    My stools were very soft, not formed.

     Wondering if this could be just a minor blip due to my prednisone taper.  Just my luck today is Friday and if need be I will have to settle for an associate in my GI's office over the weekend.  They are all good but tend to differ in their treatments.  My GI wants me off the prednisone ASAP but I know some of his associates like to increase prednisone.

Posted 4/30/2010 1:35 PM (GMT 0)
I'm sorry for you decline Christine, but you already know what I think. You're just delaying the inevitable.

Sue
Posted 4/30/2010 2:36 PM (GMT 0)
That's terrible news Christine. I have had a few blips where I thought I was going downhill and thigns turned around the following day. I didn't see blood though. When I see blood, I get nervous that things are headed in a bad direction. I think you should keep a close eye on things and work with you GI to see what your options are. I wouldn't rush to change anything right this second unless you feel terrible! What kind of taper are you doing? When did you drop to 10? What dose were you on before 10 and for how long?
Posted 4/30/2010 2:43 PM (GMT 0)
     Suebear....yeah, I know.  My husband said this morning to just chuck the Humira.  But I WAS doing a lot better.  I did overeat yesterday but not wrong foods.  I was just sooo hungry for some odd reason.  I don't feel bad but that urgency is annoying.  Thank God for kotex pads because I was not able to reach the toilet in time.  This being a first in quite awhile too.

 

     Notsosickly...I don't feel bad at all.  My rectum is a little sore right now but probably due to the pooping.  I am tapering 5 mgm per week.  He started me at 40 mgm.  Wednesday is when I went down to 10 mgm.  My next dose of Humira isn't until next Wednesday.

Posted 4/30/2010 2:49 PM (GMT 0)
Christine,

I would question whether or not your "doing better" was the result of your prednisone dose and not Humira?
If you start going downhill as you taper pred it seems logical that Humira isn't working.

Sue
Posted 4/30/2010 2:55 PM (GMT 0)
Aw, I'm so sorry. I'm not an expert on meds but one of the FEW that ever helped was Entocort which is a steroid that goes right to the gut and has fewer side effects. For me the only side effect was bruising. Of course when that RX ended the bleeding returned.

I think you know my path to remission so I won't repeat it (I do that enough lol).
Wishing you didn't have the worry.
Posted 4/30/2010 2:56 PM (GMT 0)
     Suebear....I only had three Humira treatments so far and some people say that it takes maybe a few months.  I am giving it till June.  When I see my GI doctor on the 12th of May I am going to ask him to have a few good colorectal surgeons for me to contact over in Philadelphia.  Wish I lived closer to the Cleveland Clinic but that is a 10 hr drive for us.  I just wanted to make sure I expend all my treatment options before considering surgery.    The doctor suggested Cimzia if Humira fails but I decided...the heck with that.
Posted 4/30/2010 8:31 PM (GMT 0)
15mg - 10mg is a big drop. I was having issues there and extended my time on 15 and instead of dropping to 10, I went to 12.5 and stayed on that for a full week!! I hope things continue to improve. Maybe you should increase a bit and then drop the dose slower. Maybe you are just delaying the inevitible :(
Posted 4/30/2010 8:34 PM (GMT 0)
Would you try fecal transplant? That could be helpful possibly.
Posted 4/30/2010 10:00 PM (GMT 0)
     I mentioned fecal transplant the last time I saw my GI doctor.  Either he knows very little about it but said to me..."You are risking contracting Hepatitis B with fecal transplant."  I thought there was a risk of Hepatitis B with all these biologics.  Risk of Lupus, cancer and other serious illnesses.  I read up on them.

     I think if I still am having flare symptoms tomorrow, I will up the prednisone to 12.5 and see if that will do anything.

     Unfortunately, what Suebear said about the prednisone keeping the UP at bay and not the Humira may be correct..booo  hissss mad .

Posted 4/30/2010 10:37 PM (GMT 0)
Well you could have the stool donar tested or use someone you trust, like your husband. If he had HepB, you would have it already, right? I don't know if he would be a good candidate... I know a few people here have used young babies stool but I've heard that doesn't contain as much beneficial bacteria. Doctors never have much information on it, they have to say what if this, what if that, they don't want something to happen to you, espcially if they advised you to try an unconventional treatment.
Posted 5/1/2010 12:58 AM (GMT 0)
Christine, I am so sorry. :( I agree with NSSG about the pred taper and 5mg being big jumps at these lower numbers. I am at 20 now for the next day, then I start dropping by 2.5mg/week increments from here on out. Hopefully bumping back up with help-and hopefully this is just a blip.

I was having softer stools and some minor streaking of blood recently as well. I am doing ok now though and while I am going more often (2-3 times/day), I haven't been seeing blood. I think I was feeling a lot of stress (HUGE trigger for me) and that really affected me. I started working on it and things have calmed down. Maybe this is just a blip? I hope so. But of course I think you are wise for looking into surgery. Maybe in the long run, it is the best thing. But I was just really hoping this was going to work for you.

Keep us posted-and know you are in my thoughts!
Posted 5/1/2010 4:01 PM (GMT 0)
Christine, I'm so sorry to hear you are having problems again. I wished the Humira had helped me but I don't think it did anything for me. I had surgery one month ago and while it hasn't been a cakewalk, I have to tell you it's so nice not to have any urgency and to never get those pannicky feelings that would often accompany the urgency out in public. I think a lot of people with UC get so used to their new normal that they don't realize all the ways the disease has affected their life and the sacrifices they have made. That was certainly the case with me. UC was slowly taking away my life. First I had to give up running, which I really enjoyed. Then it was field trips and vacations. And eventually it even affected little things in my life like how I stopped playing Barbies with my daughter because our play session would always be interrupted by bathroom breaks. Looking back, I wished I would have gotten surgery as soon as the Remicade stopped working, about a year ago.
Posted 5/1/2010 7:56 PM (GMT 0)
Hi Christine :)

Sorry to hear you are having a blip in your condition... As far as the taper.. I agree that 5mg jumps are too big once you get down to 20mg. Just think.. from 10mg to 5mg is a 50 percent jump... In my own experience, I started going down at 2.5mg every week once I hit 20mg.. It takes a bit longer, but it's worth the wait...

I hope you can get things back on track very soon... !!
Posted 5/1/2010 8:05 PM (GMT 0)
Christine...what about the alternating taper I've mentioned on the forum...?

that should help you get off it.

It's unfortunate you're having to endure another disappointment regarding meds.....I'm with Sue on the surgery part, however. You've been through an awful lot, and with lots of patience for a long while. It is an eventual option if all the others don't pan out. One can never accuse you of not giving treatment choices a fair go.

I hope once you find a good tapering process for the pred, your symptoms will improve quickly and that the Humira is a positive.

q
Posted 5/1/2010 11:01 PM (GMT 0)
Thank you all for your cares, concerns and information. I increased the prednisone to 12.5 mgm today. I was ecstatic that I was able to HOLD the cort enema in for half an hour last night...the entire bottle too!!! I haven't been able to do that in quite some time. After I had to evacuate, I inserted a cort suppository. I finally had a good night's rest too without a sleeping pill...a full eight hours. Today was a good day...meaning...no poop..lol. However, we'll see how things are tomorrow...thinking positive thoughts
Posted 5/2/2010 2:29 AM (GMT 0)
You seem to have a lot of ups and downs. Let's hope you do well on 12.5 and going down in smaller increments helps you, it seems to have helped me. I did decrease my dose a few times when I didn't feel 100% and things worked out, I never decreased before a full week. I am still extremely stressed that things will get worse for me at any moment. I think this stress is an issue I have to work on because it makes me sicker than I would be.
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