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Starting Humira- need support and prayers

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Ulcerative Colitis
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Posted 8/9/2014 6:01 PM (GMT 0)
After dealing with a flare for the past 4 months, plus hospitalization x5 days, several courses of pred, tried Uceris, plus all my regular meds...the Dr. has decided to put me on Humira, he wanted Cimzia but my insurance will ok Humira first. I will say the approval was very quick and my cost is low..I have been so dragged out, tired and in pain. Have missed several days of work and this darn disease is controlling my life again...sorry to whine, but need to vent a bit.

How have others done recently on Humira for UC??? My GI gives me a 75% chance of improvement. Would appreciate any feedback or advice...hope to start it next week. I have the highest sympathy for those who have had this disease from a young age...at least in my case it waited until my mid 50's..

Thanks,
Gail
Posted 8/9/2014 8:45 PM (GMT 0)
Hey upstategal -

Wishing you the best. :)

Here are some tips I wish I had known prior to taking humira:
1) Rest. Rest. Rest - I think it goes without saying you need to take care of yourself and get adequate sleep to deal with the disease.
2) You don't have to worry about the schedule too much, meaning that you shouldn't stress about missing a day or two.
3) Take it when you feel comfortable taking it (i.e after shower, eating, etc).

Best.
Posted 8/9/2014 10:14 PM (GMT 0)
Just started Humira after a bad 4 month flare as well and awful reactions to uceris and other drugs. Had my first four loading doses and it literally changed my colitis over night! Great drug for UC. However the side effects of the loading dose are not fun for me. Headaches, achey, but that may be do to the intensity that is the loading dose and will lessen as the months go on. I'm also coming off predisone. Give it a try, it can put you in remission. Just be mindful of any side effects. If I get a cut I clean immediately and put antibiotics on it. I also wash my hands constantly. Just to be more mindful.
Posted 8/9/2014 10:22 PM (GMT 0)
I agree with Guardian, take it when you're comfortable. I was only on it for a short time, but I took it in the late afternoon/evening, when I knew I could relax for the rest of the night. I'm sure once you're on it for a while, you get so used to taking it, you can do it whenever you please!
Also, after the loading doses, don't worry if you feel a bit woozy/dizzy; my nurse told me that's just due to the high dose, and you don't feel like that when you're just on the maintenance.

As for the injection itself, take it out of the fridge about 30 mins before you inject, to let it warm up.
When I was doing my first 4 loading doses, I did one in each leg and one either side of my stomach, and found the stomach ones to be sore; not unbearable or anything, just quite painful when releasing the injection & for about a minute afterwards. The nurse said that it's probably because I was quite skinny and didn't have any "padding" for the injection to go into. Injecting into my leg didn't hurt much, stung a little going in and felt like a small bruise afterwards. Everyone is probably different, but might be something to keep in mind!

Unfortunately it only worked for a few weeks for me, but I really hope it works for you! Best of luck!
Posted 8/10/2014 2:00 PM (GMT 0)
Thanks for the input and well wishes, I sure hope it works....


Gail
Posted 8/10/2014 3:07 PM (GMT 0)
I have been on Humira for 18 months, mixed results.
It cut down my BM s to 1 or 2 a day, but did not stop the flares I get my Doc puts me on Prednoisine to get out of a flare.

Also I have had 4 UTIS over the past 18 months and the antibiotics you have to take cause a flare.

I get tired easily and take an afternoon nap,if I don't I am wiped out the rest of the day.

All in all the Humira is better than the other Meds that failed.

You are younger than me so you may have better luck!!
turn
Posted 8/10/2014 5:35 PM (GMT 0)
@Charlie3- it amazes how late in life this disease manifests itself... Thanks for the input...I hope it brings some relief to me...I still work part time to help my kid with his Grad school bills, I like my job, but this disease makes it tough to function....best wishes to you!!
Posted 8/17/2014 11:56 PM (GMT 0)
Gail, I've read this forum for months and finally joined after I saw your post, hopefully I can give you some hope. I was diagnosed in November of last year with severe pancolitis. I was a perfectly healthy 28 year old. Hospitalized for 3 weeks and lost 45 pounds, didn't respond to anything. Decided to try Humira since I was running out of options and felt better shortly after the loading does (4 injections). Was able to be discharged and became a functioning member of society again. Humira greatly helped me but I had still had minor cramping/ bleeding (was good enough to go back to work though). It wasn't until I started on 4 daily Lialda and 1 VSL# 3 DS packet along with Humira that I achieved remission. Take Humira bi-weekly and have have had no noticeable side effects. I get routine blood tests done every 3 months also to check WBC and liver function. Have not gotten any additional illnesses, but do receive flu/ pneumonia shots as a precaution.

Your Dr. is right, it doesn't work for everyone, but for me it saved my colon. I was initially worried about the side effects and cancer ect but I had to get rid of the inflammation. Keep your head up and I'm hoping Humira can help you. Any specific questions let me know.
Posted 8/18/2014 6:44 AM (GMT 0)

upstategal said...
I have the highest sympathy for those who have had this disease from a young age...at least in my case it waited until my mid 50's..

^^^ I have had this thought many times myself.

I started Humira May 9th and considering where I was it has worked well for me. Took my shot yesterday so dragging today. Not in total remission yet, but going in the right direction.

Good luck
Posted 8/18/2014 8:53 PM (GMT 0)
@I Got UC....good to hear you have had some positive results....I am cautiously optimistic!! The test will be to see if I can wean off the prednisone and still see positive results. Please keep me posted on your progress!!
Posted 8/18/2014 9:01 PM (GMT 0)
@WRX....just saw your post, thank you so much for your input...I too felt significantly better with in just a few hrs. of the loading dose...did more housework and yard work than i have had energy to do in months... now if I can get off the prednisone currently down to 30 mg...

Thanks again,
Gail
Posted 8/19/2014 10:09 PM (GMT 0)
I've been off Pred for 3 weeks now, and have had a few days that seemed like steps backwards. But I have also been trying to expand my diet, have been on low residue diet since January.
Posted 8/20/2014 9:40 PM (GMT 0)
I took Humira for a little over 2 years. It was the only thing that got me out of my flare in 2012. The best advice is to 1.) take it easy. You'll probably feel like you've got the flu the day after. Make time to rest, and don't push yourself 2.) Let the Humira sit outside of the fridge for at least 15 minutes... 30 minutes is best. That sucker hurts regardless, but it hurts even worse when it's cold.

I always took my shots in the back of my arm and only sometimes in my stomach. The thighs hurt the worst for me, so I left them out of the rotation. My typical comfortable position was burying my face in a pillow and being prepared to scream (sorry to scare!). I was never able to give the shots to myself so find someone you trust to give them to you. For me, it was my boyfriend - god bless him. If you start to get scars from the injections (and after 2 years I got quite a few) a dermatologist should be able to give you a mild bleaching cream.

The injections were really, really painful for me, and I don't miss them. I know it was worth it (I achieved remission with it) but it was not easy. I am a really small person (102 lbs.) and I don't have a lot of fat on me. I don't know if it makes a difference or not but it felt like that poison was going straight into my bloodstream even though I know it is subcutaneous. Ice cream (if you can handle it) post-shot helps! smilewinkgrin
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