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Humira and me...

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Ulcerative Colitis
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Posted 4/1/2009 1:37 PM (GMT 0)
Hi All--

Its be ages since I last posted an update and wanted to share my experiences since I last posted.

Since the last post I believe I have entered full remission. I still have issues with some gas now and then and even a day where I have more bm's than one might expect; however, I usually have 1-2 a day with formed stool, no blood and no pain-- a little mucus but so little I think it is just the last bits of my last flare giving up the ghost.

I was on Humira every week with the injection of one pen until two weeks ago when I dropped to one pen every other week. Before that change I was tapering Rowasa enemas from nightly use to having gone completely off them. Sadly, near the end I believe the rowasa was being more of a hindrance than a help as it sort of messed me up a little-- making my abs feel gurgly and upset for most of the day-- and the days I didn't use rowasa I felt good but still had unformed though not running bm's. However, as I extended the time between enemas, I began to feel better and better. Even after stopping the enemas completely I still had some issues going to the bathroom until about two weeks ago when I not only began having normal bm's but also have them regularly, without urgency or pain (well....except the fact that they were now normal after months of having very non-formed stool-- ouch!).

WHat a relief though-- I can go for runs again and I feel great lately. I have been experiencing some joint pain but I don't know if that is the Humiras fault as I'm in the midst of a strenuous workout period-- sometimes things just hurt!

So now it is all up to Humira to see if I can stay in remission and if not, how long I can go without flaring. God-willing, this will do the trick but i'm not fooling myself. redface
Posted 4/1/2009 3:15 PM (GMT 0)
Glad to hear you are feeling good! I hope you stay in remission for a really long time!
Posted 4/1/2009 9:03 PM (GMT 0)

glad to hear about the success with humira ryan

for those that are thinking of humira but their insurance does not cover try this website

http://www.needymeds.org/

they are very helpful

Posted 4/1/2009 9:41 PM (GMT 0)
heathd-- are you currently on Humira, too? What is your experience?

I personally have not tried my insurance yet with the Humira. My doctor, how he did it I do not know, gave me loads of doses and I'll be set for a long time. My insurance is Tricare (military)-- they usually have no issues with dulling out meds but again, I haven't actually used them yet.
Posted 4/2/2009 12:20 PM (GMT 0)
Ryan,

I have been on humira for a little over 15 months. I started with biweekly injections then switched to weekly in December 08. The switch let me get off prednisone finally. It's been 8 weeks and I'm doing great. Just like you, I have a day every now and then where my BM's are more frequent (normally have 1 BM per day) or not as formed as usual, but I can normally track it to something I ate. Humira has been great. The plan is to slowly go back to biweekly injections after I move in June to San Antonio.

I also have Tricare. There have been no issues getting Humira.

Tom
Posted 4/2/2009 1:11 PM (GMT 0)
Ryan,
It's so great to hear from you just unfortunate that it is under these circumstances. I'm thrilled that you are feeling good again. Are you still on a break from the AF and still getting yearly physicals or have they completely retired you? I still think of all the photos you used to post, you have such an amazing talent. It definitely gave me something to look forward to every week to see the latest photo. Hang in there, be well and throw an extra mile on the run for me, I definitely need some exercise. I hope I can start feeling better soon as well and can go on runs with my dog like I have always dreamed of.
Em
Posted 4/2/2009 3:48 PM (GMT 0)

orangeman said...
Ryan,

I have been on humira for a little over 15 months. I started with biweekly injections then switched to weekly in December 08. The switch let me get off prednisone finally. It's been 8 weeks and I'm doing great. Just like you, I have a day every now and then where my BM's are more frequent (normally have 1 BM per day) or not as formed as usual, but I can normally track it to something I ate. Humira has been great. The plan is to slowly go back to biweekly injections after I move in June to San Antonio.

I also have Tricare. There have been no issues getting Humira.

Tom

Hi Tom--

So good to hear the Humira is working for you, too. Also great to hear that Tricare gave you no issues about using it! You can't beat this insurance-- at least in my experience it has been excellent.

Are you still a member of the military?

Have you found any negative side effects with Humira?
Posted 4/2/2009 3:54 PM (GMT 0)

gurgling tummy said...
Ryan,
It's so great to hear from you just unfortunate that it is under these circumstances. I'm thrilled that you are feeling good again. Are you still on a break from the AF and still getting yearly physicals or have they completely retired you? I still think of all the photos you used to post, you have such an amazing talent. It definitely gave me something to look forward to every week to see the latest photo. Hang in there, be well and throw an extra mile on the run for me, I definitely need some exercise. I hope I can start feeling better soon as well and can go on runs with my dog like I have always dreamed of.
Em

Hi Em--

I am still on temporary disability retirement with the AF. So yes, I have been getting near-yearly physicals in San Antonio. Sometimes I feel fine and then other times I get the flare and it all falls apart. I happened to be in the midst of my worst flare ever when I had my last physical with the AF-- pretty much assured I'd stay on the retirement. It has been God-sent, though, as I have not been able to do the things I'm technically and educationally trained to do! Technically, though, my next physical with the medical board will either decide to take me off the list OR permanently retire me-- which would be nice but I'm letting the Big Guy upstairs take care of all that. Humira is very expensive so if I had the option to keep just the Tricare health insurance, I'd be eternally grateful.
Posted 4/2/2009 4:50 PM (GMT 0)
Ryan,

I am still in the military (Army - 15+ years).  So far, my command is not pushing me towards a medical board.  I am able to perform all my duties without any problems.  as you said, you cannot beat the Tricare benefit.   

I have had no negative issues with the Humira.

Tom

Posted 4/3/2009 12:15 AM (GMT 0)
no negative results for me with humira, except occasionally becouse of my work i get lots of bruises and banging of the body ( heavy diesal mechanic ) and they take a long time for them to go away. although my insurance doesnt cover (advantage through st francis of indiana) never been in military so dont know much about it but i know that my current insurance i fought with for a long time to get humira and after i failed remicade i even tried anthem insurance they wouldnt cover it either. but i was able to get the meds through that website well gud luck ryan :)
Posted 4/6/2009 4:25 AM (GMT 0)
I've been on Humira for 15 months. It took quite a while for it to start working for me.
Posted 4/12/2009 1:01 PM (GMT 0)
I'm experiencing a bit of a set back in terms of my UC. This past week I have experienced increased gas and some cramping and mucus. I have gone back onto rowasa nightly (on the third night now) and I do believe it is already fixing the problem. I know humira can take quite some time to work so I still have plenty of hope in its use-- but for now, I had to send in my minute men!

I don't care what people say about rowasa-- it isn't fun putting things up there but man it does the trick, fast!!!! It has become my maintenance drug-o-choice.

Now...back to acting cool again, like i don't have UC. scool
Posted 4/12/2009 2:20 PM (GMT 0)
When I was first on Humira, my doctor also had me on prednisone for a month or so, and I was on Imuran. My doctor weaned me off of Prednisone, but kept me on Imuran. I was on this pill for a year and a half, along with 2 shots every 2 weeks. In my opinion going off other meds while getting Humira into your system should be a very very slow process. Just to make sure the humira is really doing it's job.
Posted 4/12/2009 7:23 PM (GMT 0)
Great thread. I just started Humira after failing Remicade after 6 months- it didn't last between infusions at the standard dose, and even worse, I was reacting with joint pains and elevated ANA. What is the "kick-in" time for Humira by comparison with Remicade? I know it varies widely- just wondering if it is a bit slower than Remi to kick in, or not, all else being equal. If Humira fails, barring a miracle like fecal infusions working, I will throw in the can on this colon I think. But I want to give Humira a fair try. Thankfully, my insurance almost instantly approved, on account of my failing Remi.
Posted 4/13/2009 1:16 AM (GMT 0)
Probiotic: That's what happened with me when I "failed" Remicade while trying to take the 3rd dose.
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