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07-20-2015, 07:06 PM   #1
Jewels29
 
Join Date: Jul 2015
Location: Seattle, Washington
Humira - thoughts?

Hello Everyone,

This is my first post here and I'm hoping I can get some answers and find people dealing with the same issues I am. I didn't see a recent Humira/UC post...so I thought I'd start a new one.

I was diagnosed with UC 30 years ago when I was about 12. During those 30 years I've tried Sulfasalazine (which I'm still on and have taken entire 30 years), Prednisone, Cort-Enemas, Suppositories, Asacol, and Uceris.

My doctor wanted to start me on Remicade, but my insurance wouldn't approve that until I tried Humira. This past Thursday I had my first 4 shots. OMG were they painful.

I've read all the potential side effects and things to watch out for, but I really wanted to see from anyone that has taken it with UC, what your experience has been? Did it work? How long before you saw it working? Did you notice that you were really tired after the shots? Also, did anyone notice fatigue after the first shots? Did anyone experience itching (not severe just annoying)?

Thanks for any help you can give me. I'm really scared, but I'm so sick of being sick I'm willing to try anything.
08-22-2015, 02:05 PM   #2
Om3ga1
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Location: Albuquerque NM

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Personally I'll never take the stuff. An immune suppressant is IMO the wrong approach. Regardless of FDA approval or not. You just leave yourself open to a whole lot of other problems and I don't see this a a long term solution.
08-22-2015, 02:24 PM   #3
Charlotte.
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Hi Jewels29,
a warm welcome to the forum!
I was on Remicade more than half a year and I did not have any side effects but unfortunately I had only little effect on my Crohn's/Arthritis. It's very individual who benefits of which drug the most, so until today, there is no test out there to check in advance which biological would be the most effective one.
Concerning side effects, I'm of the opinion that you should also pay into account how great your life could be when you are finally in remission and feel well again. Of course, some people do experience side effects and have to stop (I had to stop Humira for example but it was not working enough as well). Others have some minor side effects and many many others I know get along pretty well. If you never try you'll never know. You can always stop and take steroids but I prefer the biologics, especially for long term use.
I was on Sulfasalazine and Methotrexate (not simultaneously) as well and I had major side effects and had to stop immediately, so that about side effects. ;-) It's so individual.
Well, the scientific approach says that the defensines in the intestines are too weak/not enough in quantity so there is inflammation. Restoring proper immune function by not suppressing the immune system but by supporting the immune system would be a great approach but it is still in the clinical trial phase and no medication is available yet outside clinical trials.

@Om3ga1: What do you take instead to not suppress your immune system and treat the underlying cause of Crohn's?
__________________
Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
08-22-2015, 07:31 PM   #4
Om3ga1
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@Om3ga1: What do you take instead to not suppress your immune system and treat the underlying cause of Crohn's?
Mostly diet. Out here in the great southwest hydration is key. It's not 100% effective every day but, I do the best that I can.
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