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Is humira my only option

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Ulcerative Colitis
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Posted 11/26/2017 4:04 PM (GMT 0)
Hi,
I’ve had proctitis since I was 13, I’m now 37. Over the years I’ve had flares that are generally treated with doses of prednisone. Over the past year I’ve had a terrible flare and a doctor who wasn’t taking the time to treat me. I recently switched doctors, had a colonoscopy and it showed it’s spread to my sigmoid colon and she immediately prescribed humira. She didn’t even get my opinion on the drug. I’m supposed to go in tomorrow for my loading dose and am terrified to take it but feel like it’s my only option. I was on colozol and Canasa for years. The new doctor just prescribed lialda and Rowasa. I don’t know if I should get another opinion. I’d almost rather ty another dose of prednisone just to see if it will work before resorting to Humira. Just wondering if anyone has had success with Humira. I know prednisone is not good for you either by I think it’s the better of two evils. Any advic would be appreciated!

Thanks!!
Posted 11/26/2017 4:14 PM (GMT 0)
We've had many poster have luck with humira. I've been on remicade, a sister medication to humira, for 4 years without experiencing a side effect from it. I did find a remission from it! I hope it works as well for you.

There's also immunomodulators like imuran/6mp but most doctors are skipping over them. Very similar safety profile and risks.
Posted 11/26/2017 4:36 PM (GMT 0)
Thank you! That is encouraging!
Posted 11/26/2017 5:21 PM (GMT 0)
Prednisone has terrible long term side effects but you seem to gain remission when using it short term. Ask your doctor that if after you start Humira that is best practices to continue taking it permanently.
Posted 11/26/2017 5:33 PM (GMT 0)
Im having surgery to have colon removed in January.My gastro wanted to put me on Remi or Humira last year and i said no.Most meds have side effects,Humira and Remi lower your immunity.I don't have a spleen due to football when i was younger.Spleen helps your immune system,if i go on Remi or Humira combined with no spleen,combined I'm 58 yo then I'm open for getting flu,pneumonia etc etc .So in my case surgery is best being colon isn't working too well.Good luck with whatever u choose
Posted 11/26/2017 5:46 PM (GMT 0)
Many insurance companies require patients to try Humira before they will cover any other biologic, so that may be why your doctor chose that one without discussing it with you (assuming you are in the US).

You could ask about immunomodulators if you really don't want to take Humira but I definitely wouldn't go for prednisone again as it is not a long term solution.
Posted 11/26/2017 6:07 PM (GMT 0)
I am in the exact same situation. I was only diagnosed with proctitis in Jan, now Left sided colon on recent scope. Planning to start Humira on Tuesday. I have, however, never taken oral steroids.

Imuran doesn't work as well as biologics and much worse safety profile. They have really fallen out of favor. Any good gastro will try to avoid and go straight to biologic. Steroids are ok, but only good for short courses- bad long term effects.

Biologics work great for many people, good safety profile. Lymphoma risk is really blown out of proportion and they most likely don't even increase your risk. You can always look at stopping a biologic down the road-- although 50% will flare within 2 years upon stopping. Good news is that most people will respond if the need to go back on.

Based on this I am happy to skip steroids and so straight to biologic.

Good luck
Posted 11/26/2017 7:52 PM (GMT 0)
Thank you Joe! That makes me feel a little better. I think I’m just nervous of moving up to this whole new level of drugs. I guess I don’t want to believe it’s gotten as bad as it has. Hoping remission is what I’m getting for Christmas this year!!😊
Posted 11/27/2017 3:10 PM (GMT 0)
I was diagnosed within 2 years ago and just started Humira on 11/17/17. I will tell you that I think Prednisone is the worst drug of all! I am currently starting to wean again now at 15mg ( where I flared a few weeks ago) and I had to go on short term disability to deal with all of these drugs. I was able to eat at Thanksgiving which was a week after starting Humira. I really hope I can wean seamlessly off of prednisone as I inject my second round this Friday. The shots were nothing! I was and am still afraid of the side effects or of it not working in the future but my doc says I will be off all of the mesalamines and just be on Humira. I was using nightly enemas, am taking 9 balsalazide/day plus steroids. All of those drugs have side effects too so giving myself shots every other week doesn't sound too bad.

Joe is right that most IBD specialists are going straight to biologics and skipping the in between drugs. Humira has been around for 20 years. . I hope to be off of steroids and feeling much better by Christmas as well. The turkey dinner was amazing on Thanksgiving!
Posted 11/27/2017 10:00 PM (GMT 0)
I tried Humira (had been using prednisone as stop gap measures for flares but both Doc and I were hesitant to use again after on and off usage for 4 years since diagnosis with UC.

The Humira didnt help so we went another biologic called Entyvio which worked well for me for last 18 months. No major side affects for me other than a rash on my arm.

Not sure lately how effective it is lately as I have had several flares and have switched to infusions every six weeks instead of 8.

The more you read here the more you will see is that there is no one solution for anyone and everyone has different results. You just need to find what works for you. And lastly, some things work for you....and then they might just "stop working" and you have to seek alternative solutions.

Read all you can and stay open to alternate solutions including diet, supplements etc.
Posted 11/28/2017 2:42 PM (GMT 0)
I started Humira in Dec, 2017 and was in clinical remission within 12 weeks. I have had zero side effects and wish I would have started it sooner. Best of luck to you, hope you get great results.
Posted 11/28/2017 3:28 PM (GMT 0)
moving to biologic quicker and skipp over 6mp is becoming the standard of care. in recent studies on average this seemed to offer better long term prognosis.

the colaza/canasa vs lialda/rowasa is trivial, except that you need an enema to reach higher. Either way it is oral and rectal mesalamine.

continue using this a a treatment with repeated use of pred as a rescue drug is an option, but some GI are getting very negative on frequent pred because of long term effects.

the treatment does not sound unreasonable. the lack of discussion is concerning - but did you ask about the rugs, did you attempt discussion? for other issues a doc will say they are going to prescribe an abx or a bp med and do not go into which one they are using or why. since this is becoming standard of care, the expectation to discuss decreases - unless patient engages.

you fault old doc for not taking time to treat you, but fault new doc for adding new medication. what do you thing old doc would have done if they had "taken time" - if you have an answer to that, and it is something you would rather try, then ask about that before Humira.

good lcuk
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