Just stopped my weekly humira -- stomach not happy!

[sf925415]

I stopped injecting humira. I wanted to see what my sysmptoms would be like without it. Plus I'm preparing for resection surgery so I want to rebuild my immune system. Well, within a few weeks I was back flaring, worse than before. I wonder - is this to be expected from stopping humira?

Plus, I'm losing appetite and weight. Mabye a side effect of the humira was that it made me hungry and I gained weight? and Now I have a mormal normal reduced appetite?

Love to hear what you think! Thanks.

 

[Nica]

Yes stopping humira will cause you to flare up. Did your doctor tell you to stop? I am not sure if the immune system stuff is worth a flare before surgery.

Good Luck!

 

[beth]

As I understand it, it can take 6 months for all of the Humira to be out of your system... What did you expect to happen; the normal does is every two weeks which means you need to keep topped up with it to retain therapeutic levels. Let that drop and you will get symptoms return, and damage. How quickly that happens is probably down to how fast you are producing TNF-alpha antibodies.

Are you doing this out of your own curiosity or medical direction? Personally I wouldn't, and if I was directed to by a consultant I'd be asking them for the full chapter and verse.

 

[sf925415]

well my surgeron said it was a good idea (i had already stopped it), but my GI did not tell me to stop it and I don't hink he wants me too. For the moment I'm hoping my flare was short lived, as things have been pretty quite since yesterday morning (either that or I'm now blocked and about to get worse - That can take some time, right?) I kind of like the idea of having the surgeon explore the bowels as they are without the heavy drugs; I'm hoping to be able to get off humira and the like, so maybe if I can tolerate it allowing surgeon to inspect the bowels as they in an undmedicated state may help see the full pircture of the disease?

I got some blood work done this morning just to keep tabs on things while I'm off the meds. I suppose if the results are problematic that will inform my decision as well. Thanks!

 

[sf925415]

I should add - It oddly makes me feel more confident that my decision to get the surgery was right based on the fact that I am sypmptomatic when I'm left untreated. Otherwise I feel the surgery is too aggressive, but now, having proven to myself that I really do suffer with this inflammation and require these dangerous meds, I feel more vindicated that surgery is not an overly aggressive plan here. And it helps me explain to my family why I"m doing this. maybe that makes me crazy.

 

[Boltmannz]

I feel that you should consult your GI about stopping the shots. Also get a second opinion about receiving a shot every week. The manufactures and New Zealand specilasts say 1 every 2 weeks.

good luck

 

[Nica]

I understand about verifying your symptoms before having surgery, but stopping humira without talking to your GI can really throw you into a massive flare up. Please call them?

As far as the once a week thing, if one every 2 weeks does not work they up it to once a week, I think RA treatment is once a week. My Rhuemy is talking about upping me to that.

 

[dreamintwilight]

Yup...seems to be more popular in the U.S. for people to be put on weekly doses of Humira (as I am). I know there are some countries that are more conservative when it comes to not only the frequency of injections, but even prescribing it.

My doc said it's becoming more common these days (in the U.S.) for people with moderate-severe cases of Crohn's to go up to weekly shots.

I agree with consulting your GI about stopping your Humira. I know it sounds nice to go through surgery seeing what it would actually look like, but it could also complicate surgeries if it gets too bad. Not to mention you will feel pretty miserable if you end up going into a full-blown flare. And I think I heard somewhere it's harder on your body to recover after surgery if you already have severe inflammation.

There is probably good reason your GI doesn't want you stopping your meds and you should consider that greatly. Surgeons don't always agree with GIs, but you should weigh the risks versus benefits very carefully. Good luck!

 

[Awbrey]

I understand y you stopped, I feel the same way, I feel that im in denial and wonder if I really do have the disease, I wish you the best.

 

[tanya34]

I have wanted to stop taking Humira for nearly six months, I catch colds all the time and I miss work because no one wants me around when I have a cold - when I have the shits no one really knows....
I have been working with a Wellness Center that does more natural options, and I feel like they are helping but my GI says if I choose to stop the Humira I will flare up worse that any previous flare ups and he said if I go against his advice he wants me to sign a waiver that I have refused treatment.....