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Ulcerative Colitis
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Posted 1/17/2013 4:15 PM (GMT 0)
I would LOVE a McDonalds right now!! I'm so weak today, my sugar levels must be low but trying to avoid choc and all things sugary! I know what you mean about a mental break - all the guesswork and trying new things and eliminating others is so exhausting! I wish this Humira would hurry up and kick in! Past two years have been a blur of sickness, hospitals, medications. I'm the only one of all my friends not out partying and being a normal 24-year old! I'm also a teacher but too sick to apply for any teaching positions at the moment so have just been covering an old reception job whilst I'm on pred! Then I do put it into perspective and look at others who are suffering with terminal illness etc. Things can always be worse. A friend actually said something that really made me feel bit more positive - 'In life, everyone goes through 'dips' and this is your 'dip' that you will overcome...' Ahhh I dream of the day of remission where I look back at this phase of my life as a distant memory! What is Vedoluzimab?
Posted 1/17/2013 5:18 PM (GMT 0)
its a new TFN blocker that suppose to have better remisson and less side effects than humira. 24 is young to have this disease. I was 35 when it popped up and the last 7 years I think I've been sleeping. LOL

I wonder how bananagirl is today, she gets her loading dose at home by a nurse. Wishing her lots of luck, sending her love, she's your age too or there about.
Posted 1/17/2013 7:50 PM (GMT 0)
Vedoluzimab actually blocks an integrin protein in the gut. So, it only affects your gut, zero side effects. suppose to be awesome. It finished it last FDA trials and now we wait. I heard may, but it may be longer than that. Fingers crossed they approve it fast!!
So far the Humira is helping. not as much as I would like (I would like to be normal), but definately better than I was before. Monday is dose 2, I hope it gets better. But so far, so good. No side effects yet.
Posted 1/17/2013 8:03 PM (GMT 0)
lemonhead having no side effects is awesome! I felt them right away. Matter of fact I was calling the doctors before my second shot was coming around, I was so sick. So you are having awesome luck! Some people certain medications click with them, I'mfinding my body doesn't like meds to well, period. I'm going to try the yeast route again and do probiotic enemas.
Posted 1/18/2013 2:07 PM (GMT 0)
That sounds promising, roll on this new drug! I hate taking medication but right now, at this age, I really can't deal with the idea of surgery :-( Thats great it is having some effect so soon Lemonhead, just think after your second and third dose it should only get better! :-) I'm not doing so good for my diet this week, have had choc and bread and dairy! I'll know in about 10 days whether or not Humira has had any effect as I'll be finished the pred! Thank goodness its Friday - I can't wait to sleep in!!!
Posted 1/18/2013 3:04 PM (GMT 0)
I finish my last 5 mg of pred the same day I take my second round of shots. Yesterday was a bad day. 6x with some urgency. Still no blood. Today seems to be better (and I didn't take my enema last night). I think the enema makes the urgency worse. So, I am still hopeful, but we will be able to tell for sure if the Humira is working after I am off the pred. I will keep you all posted
Posted 1/18/2013 4:14 PM (GMT 0)
I'm the same as you Lemonhead. I finish my last 5mg of pred on Weds which is when I take my fourth dose of Humira.. So that will be my 6th week on Humira.. Hopefully I'll notice some improvement... Fingers-crossed it works for us!
Posted 2/5/2013 6:21 PM (GMT 0)
How is everyone doing? Any update Lemonhead?
Posted 2/5/2013 6:23 PM (GMT 0)
How are you doing Minners????
Posted 2/5/2013 6:31 PM (GMT 0)
Hi Faithmac! I'm off pred two weeks now and its usually by the time I'm off pred 4 weeks that my symptoms start to rear their ugly head! so, at the moment, I'm still ok - once a day, mostly formed, no blood, no mucous. Due for my 9th shot tmo.. It will be 2 months next Tuesday that I started Humira so still time for it to build up more! Really noticing the lack of energy now that I'm finished pred! Still haven't noticed any Humira side-effects! :-D
Posted 2/5/2013 6:45 PM (GMT 0)
Minners, sounds to me like your doing well! Hope it keeps up. Have my fingers crossed for you:)
Posted 2/5/2013 8:11 PM (GMT 0)
Just took my 3rd shot yesterday. So, 4 weeks now. I have an awful headache, like so bad I want to throw up. I am still going 3-4 times a day. They are formed and no blood. I have moved my enemas to every other night, but the urgency is back. I don't like that AT ALL. My poops are still very thin so I know there is still a lot of inflammation. Still no side effects except for the headache, which I usually get the day after a shot. Still hoping to see continued improvement. I think I did have a little downturn after I went of pred completely, but it could also be hormones.....who knows with this disease.
Posted 2/5/2013 10:25 PM (GMT 0)
Lemonhead, headache goes away. I hardly get them now. Wish I could say I was 100%. 80% is more like it. I can live ith that for now. Had a little rectl inflamation . Almost gone now. Little blips along the way. Hope it only gets better for you!!!!
Posted 2/6/2013 2:17 PM (GMT 0)
Thanks Faithmac. Lemonhead, my bms are also thin but formed with no blood and mucous - I didn't relaise the thinness was a sign of inflammation! Hopefully your urgency will go away, fingers-crossed!! Feeling very bloated and uncomfortable today. 9th shot tonight! Back in hosp for a check-up in two weeks.
Posted 2/6/2013 9:03 PM (GMT 0)

Faithmac said...
Thoreau, I stopped telling people that I don't feel the greatest. They seem to think I'm never felling good. When people ask how are you feeling, I say great! Even if its a lie

I do the same thing; I get the feeling that even though people ask, they really don't want to know.
Posted 2/7/2013 1:29 AM (GMT 0)
RAnikas, hopefully that's not everyone who asks!
Posted 2/8/2013 12:12 AM (GMT 0)
Hey guys-
Couple of questions. Does anyone get nauseus with their shots? Also, I can't tell if it is doing anything. I actually felt better 2 weeks ago, and am thinking I was feeling better due to the pred not the humira. From the humira should I expect a gradual bettering of symptoms? I have a dr appt tomorrow to see how I am doing on it, but it has only been 4.5 weeks. Am I being niave to think it would work this fast? If it isn't going to work, I don't want to waste too much time. I would rather try 6-mp and move on. My thought is to wait until June (I am due for c-scope then anyway) and see if the inflammation is better. If not, time to move on. That would be 6 months---is that reasonable. I was so hoping this would be my magic bullet. Getting frusterated.
Posted 2/8/2013 12:56 AM (GMT 0)
Lemonhead , during the loading dose, I felt like I was doing great. After that it was a slower process of getting to feel better. I was not on pred at the time. It took a while to start to feel better. Was still taking all my meds. Then I felt it was not as effective as it should be. Asked around on HW about taking the injections weekly. There was quite a few who did. They were feeling pretty good. Asked my GI, he said it was ok. Things have been much better.
You have not been on Humira long enough to really give it a chance.
This DZ is frustrating enough. I know!!!!! Give it 6 months to see if you feel better. Hope you will feel some relief and get close to remission:). Faith
Posted 2/8/2013 1:07 AM (GMT 0)
So you think 6 months is reasonable??
Posted 2/8/2013 2:11 AM (GMT 0)
I've been on Humira for about 8-9 months. At about 6 months I started it weekly. Glad I did. Not too many options out there. Maybe it will work for you or maybe not . If it does great, if not maybe something else will be out there for you to try. I always tried to have positive thoughts about Humira working for me. Things haven't been perfect, better then it was 9 months ago.
Posted 2/8/2013 2:13 AM (GMT 0)
I think 6 months is reasonable to decide if it's working for you.
Posted 2/8/2013 12:34 PM (GMT 0)
ok, I think my hormones are aver-riding the positive effects of Humira. I am feeling better today. So, maybe the hormones are calming down. I hope so, I really want this to work. My friend is on it and he says he doesn't even know he has the disease. Wouldn't that be nice.
Posted 2/8/2013 12:46 PM (GMT 0)
Think positive! Funny, I take hormones to calm things down. Mine are more controlled I guess. Don't get discouraged .
And yes it would be nice!!!!!!
Posted 2/8/2013 3:29 PM (GMT 0)
Spoke too soon. it is only 10:30 and I have gone 4 times already. I am nauseaus and tired with a splitting headache. Sitting at work wishing I were in bed. The first 3 BM's were Ok,. the fourth was not good. Just want some control over my colon. grrrr
Posted 2/8/2013 6:25 PM (GMT 0)
Hi Lemonhead, I haven't felt any nausea since starting the Humira. My only complaint at the moment is chronic tiredness, feeling so exhausted and run down - but Im always like this (when I'm not on Pred) since starting Imuran. I'd say the Humira is still building in your system. I'm surprised you're not on 6MP or Imuran already. You could always start the 6MP whilst on the Humira to try hit it hard! I'm off to NYC in 2 weeks - my first hol since I've been sick! Hoping symptoms stay away! I'm a terrible flier too! Been trying to keep low gluten, low dairy and avoid the 'bad' stuff!
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