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Torn on whether I should be taking humira or not. Need some input.

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Ulcerative Colitis
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Posted 7/1/2011 3:18 PM (GMT 0)
I'm currently in stable remission on 25 mg of prednisone and 4.8g of Lialda at the moment.

My patient records show that a safe prednisone wean accompanied with standard maintenance meds (5ASA) has put me in remission 3 out of 4 times. The only time it did not put me in remission was when we weaned off too fast. My flares only happened when I stopped taking the maintenance meds, stupidly thinking that I was cured. All of this is documented in my patient logs.

So now the dilemma is whether to wean off the prednisone slowly (like in the past) and let the maintenance meds control it (along w/ enemas, VSL#3, etc) or start taking the humira. I'm concerned because not only is taking humira a big step, but there are many undesired side effects associated with it. Yes the internet has the craziest stories but it is, nonetheless, a very serious medication.

So, what do you guys think is the appropriate course of action? Everyone wants me to get my life back and take the humira but my patient records clearly indicate that a prednisone wean + maintenance med therapy has been effective in putting me in remission. The trick for me is to continue taking the maintenance meds rigorously.

I'm curious to hear what you great folks have to say on this.
Posted 7/1/2011 3:23 PM (GMT 0)
I would try to wean off the prednisone before trying humira (that's just how I feel). Also what about adding enema's to your meds? I think some of the others here do that.
Posted 7/1/2011 3:25 PM (GMT 0)

Beth75 said...
I would try to wean off the prednisone before trying humira (that's just how I feel). Also what about adding enema's to your meds? I think some of the others here do that.

I'm all for doing that but my family is pressuring me into taking the humira and it's very distressing. I have no problem taking the enemas but my current doctor seems unlikely to prescribe it because he's insistent that I take the humira.

I consulted my past GI and he'd prescribe the enemas easily. I may just end up switching back to him for one visit (he's ridiculously expensive).
Posted 7/1/2011 3:33 PM (GMT 0)
Have you been relapsing often? I agree with Beth, if you're able to taper off and stay stable for a good amount of time, you should probaly try too maintain remission with enemas and oral 5asa if possible but don't wait too long to start something stronger if you're flaring up too often.
Posted 7/1/2011 3:43 PM (GMT 0)

notsosicklygirl said...
Have you been relapsing often? I agree with Beth, if you're able to taper off and stay stable for a good amount of time, you should probaly try too maintain remission with enemas and oral 5asa if possible but don't wait too long to start something stronger if you're flaring up too often.

In the past, the relapses occurred when I (stupidly) stopped taking the maintenance meds. Usually, it happens within a period of 2-3 weeks and my body slowly starts reverting to the inflamed state, along w/ the symptoms associated with it.
Posted 7/1/2011 4:09 PM (GMT 0)
I wouldn't recommend going on Humira if you are doing well with the current meds. Maybe you should see a different GI since it seems like he/she is pushing you to take the big meds.

I started taking Humira last month, have had three injections so far. Symptomatic wise, I was in remission but my body stopped responding well to Prednisone or IV steroids so I've decided to go on Humira to reach more stable and longer remission.

Despite what everyone says about Humira, I've experienced no side effects so far and I think staying on Prednisone for long periods time is more dangerous than being on Humira. I can't tolerate any other immunosuppressants and Remicade due to horrible side effects(extreme nausea, allergic reactions like constricted airway) but it seems like Humira is the right med for me at the moment. And last Friday's blood work showed, my CRP is good and even my vitamin B12 is in the high range. Also about developing lymphoma, it's 1 in 30,000 chance according to my GI and not everyone develops cancer after going on it for long.

The chances of developing cancer due to inflammed intestine is higher, IMO. And Humira works to bring the inflammation down for IBD.

After all, it's all about finding the right medication. I've stayed on the 5 ASA meds during the first year of my diagnosis, but I went on and off. Eventually, it seemed like my body has developed immunity to them. Pentasa/Canasa are the only 5ASAs I can tolerate and they work but Asacol gives me fever/headache/D/blood again.

If you decide to sign up for Humira, like everyone else said, I'd wean off of the prednisone or start right before when you think you might be flaring soon.

Also, taking Humira is convenient. Except for the loading dose, you only need to take one shot(pen) every two weeks. Just have them in the fridge and take a shot when the time is up.
Posted 7/1/2011 5:25 PM (GMT 0)
CollegeStudent, I appreciate that you took your time to type out the long reply. I'm also in college as well, and I've certainly taken a lot longer than expected (I'm 25 years old). This is my last year, hopefully. I've fallen and failed so many times that I know how to stand up tall and weather the storm now. If you don't mind me asking, what's your major? Let me just tell you that computer science and ulcerative colitis don't mix very well at all.

As far as starting the humira is concerned, I agree that waiting to see if the wean works would be prudent. I actually have no problem taking the humira, but my history just supports the fact that maintenance meds have been effective in maintaining my remission, at least right until I stop taking them like an idiot. It just makes sense to do it and I'm not sure why my current GI doesn't see that. I even talked to my past GI, and he knows this as well.

Like you, I'm also unable to tolerate the immunosuppressants, so it's only logical that humira is the next step for me. My reservations with humira aren't really about the side effects, but rather more about adding another medicine that I may not even need.

I'm glad that the humira is working out for you.
Posted 7/1/2011 5:38 PM (GMT 0)
StealthGuardian,

I concur with others that question the reason to start the Humira if the current meds work if taken as prescribed.

Maybe it's just me, but I fight to the last second before I change into the bigger guns. So far it has saved me my colon and given me several years of drug-free remissions.

Should the situation arrive when the current meds quit working, I'd reevaluate my options again - thoroughly.

The choice is yours.

Good luck to you.
Posted 7/1/2011 6:41 PM (GMT 0)
StealthGuardian,

Don't let your docs push you into the big guns meds.

Insist on the rectal meds and try them out first; they might help you a great deal.

Which diet are you on?

Which supplements are you on?

Are you on any probiotics?

Posted 7/1/2011 8:06 PM (GMT 0)
Why did you go off your maintenance meds....and were they the oral/rectal 5ASA?

Did you ask your doc to prescribe the Rowasa? Just say you want to continue with them and to stay off the pred.

Humira...big step for many but if the 5ASA meds can keep you out of serious trouble, seems your best bet.

Of course, that takes serious commitment and not believing you need to be off them once you feel better. Taper to maintenance and listen to your butt when it has something serious to relay.

q
Posted 7/1/2011 8:19 PM (GMT 0)

KiWi44 said...
StealthGuardian,

I concur with others that question the reason to start the Humira if the current meds work if taken as prescribed.

Maybe it's just me, but I fight to the last second before I change into the bigger guns. So far it has saved me my colon and given me several years of drug-free remissions.

Should the situation arrive when the current meds quit working, I'd reevaluate my options again - thoroughly.

The choice is yours.

Good luck to you.

Thanks for your input. I consider myself a fighter as well so I'm leaning towards getting that second opinion and considering that safe wean.

I have no problem taking the humira if it fails but like I said, the history doesn't support it.
Posted 7/1/2011 8:23 PM (GMT 0)

InSoFla said...
StealthGuardian,


Don't let your docs push you into the big guns meds.

Insist on the rectal meds and try them out first; they might help you a great deal.



Which diet are you on?

Which supplements are you on?

Are you on any probiotics?

I agree with what you said.

I took rectal meds once but wasn't able to hold it in. I suppose it takes practice and I'm willing to do whatever it takes to make it work this time around.

-My diet is mainly bland foods and proteins at the moment -- refined grains, pasta, cream of wheat, tuna, salmon, fish, etc. Doesn't seem to be bothering my colon

- For supplements, I'm taking 2 caltrate and men's one vitamin which has vegetable powder and some probiotics.

As far as probiotics are concerned, I have lactobacillus supplements and I'm eating stonyfield frozen yogurt which has some cultures. Doesn't seem to bother me either.

Post Edited (StealthGuardian) : 7/1/2011 2:30:13 PM (GMT-6)

Posted 7/1/2011 8:27 PM (GMT 0)

quincy said...
Why did you go off your maintenance meds....and were they the oral/rectal 5ASA?

Did you ask your doc to prescribe the Rowasa? Just say you want to continue with them and to stay off the pred.

Humira...big step for many but if the 5ASA meds can keep you out of serious trouble, seems your best bet.

Of course, that takes serious commitment and not believing you need to be off them once you feel better. Taper to maintenance and listen to your butt when it has something serious to relay.

q

When in remission during the past, I stupidly stopped the maintenance meds, thinking I was fine enough without them. They were oral -- started w/ colazal and then switched to lialda. I suppose I've had the most success with lialda.

My current doc didn't want to prescribe rowasa when I asked.

Yes, you are correct about the commitment. I know enough to never get my ass off those medicines now.

Post Edited (StealthGuardian) : 7/1/2011 2:31:06 PM (GMT-6)

Posted 7/1/2011 9:22 PM (GMT 0)
No problem, StealthGuardian.

I'm majoring in Bio/Chem and minoring in theatre/acting. I was actually set on going for bioengineering but changed my mind. I don't like doing rigorous individual research anymore although I'm sure that I will have to do plenty more in the future.

I did enough enough researching in high school for various engineering fairs for my math research class/program lol.

And, UC doesn't agree with my acting class either. I feel a bit queasy before performing the homework assignment performance alone lol.

Anyways, stick with your meds! I went off of ALL meds(including 5ASA) for a few months to try the natural methods in the past and only made my intestine suffer and narrower due to ongoing inflammation. Yes, very wise...

Maybe give LDN oral/transdermal a thought or just get the script for it if your doctor is open to it. InSoFla probably can help you with this if you can't get your GI to write a prescription for LDN.
Posted 7/1/2011 9:45 PM (GMT 0)
I would definitely use just the Lialda if that will work for you. Try to keep in mind that prednisone is really hard on the body. Your doctor might be pressuring you to go on Humira because he doesn't want you to keep doing rounds of prednisone. If you can get off pred. with only Lialda go for it!

Post Edited (Ugh Just Ugh) : 7/1/2011 3:50:09 PM (GMT-6)

Posted 7/2/2011 2:18 AM (GMT 0)
StealthGuardian,

Yea, the rectal meds do take some practice... maybe worth another try?

I think you should try and stay away from dairy and wheat - and see if it makes any difference - I'm sure you will see some difference. If you like milk, try almond milk.

As far as probiotics are concerned, you need some heavy duty ones IMO, like VSL#3 , which contain 450 billion active cultures (I'm sure if you check the label of what your are taking, it isn't even anywhere close to that)- which you can get at Costco's.

And yes, I agree with CollegeStudent, perhaps you should look into Transdermal LDN?

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