Went to GI and have new Humira, Imuran ?s for you experts

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 8/30/2007 6:09 AM (GMT -7)   
I have had Cd for a long time and am pretty educated on my own care....now it's all new again 17 years after my first surgery.  I went to my GI yesterday.  I have been feeling crappy (not literally, figuratively) lately.  I have been on nothing and am restarting Pentasa today (long story about better to take something than nothing).  Doc wants me on something stronger, but understands I am not ready for the next step yet and he understands why.  He accepts that I have nixed Remicade and my reasons why.
 
1) If I have another fistula, he wanted Remicade.  I asked if you can go right to Humira and skip remicade.  he said yes.  BUTTTTTTT would your insurance cover it if you haven't tried Remicade first?  I can call my insurance and ask (I am a med insurance employee in case you don't know), but I want to know if it has been done before I ask especially since it is sometimes hard to get a atraight answer.  Anyone know if this is an issue with their insurance?
 
2) Iron and B12 levels are extremely low.  I have to do B12 shots each week instead of month and will run out of non-sore spots to inject.  I am a chicken about doing it in my tummy even though my 80 year old Dad does it.  Is it more tender in the tummy and is there a way to do it in your arm?
 
3) We talked about top-down versus build up theories of care.  I am pushing for the build up theory and now have to consider if I am ready to make the step to 6MP or Imuran.  Getting a scope 10/2 before I decide if I am at that point.  This site is great, but I need some human contact to talk out the decision process.  Any ideas who I can talk to to help me decide that has knowledge or how to find someone---CCFA meetings are poorly attended here and the next one isn't until mid-Sept.
 
Thanks for listening everyone!  My husband listened last night and he is good, but I need to talk to someone with more expertise in the area
 
Dx'd '90 (emergency rupture), symptoms ignored long before that, stable with Pentasa, '03 fistulas and bad flagyl reactions, only on B12 and vitamin supplements now
I'm riding on the escalator of life....


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/30/2007 6:17 AM (GMT -7)   
Why not ask your GI to have a couple of longterm patients who are on these meds get in touch with you and share their experiences?

MBJOH
Regular Member


Date Joined Mar 2007
Total Posts : 257
   Posted 8/30/2007 8:11 AM (GMT -7)   
Habs -
I started Humira the end of April, I was already on 50mg of Imuran, which was increased to 75 mg at the end of April also and on Pentasa and hydrocortisone suppositories and B12 (nasal spray). The most diseased area for me at the time was the rectal area. I was having horrible pain, lots of D and leakage of stool. Since the Humira I only have D a couple of days before getting my period - otherwise I have a few BM's in the morning and not much else all day. This was a huge change for me. But I am still occasionally having pain and leakage issues. I can go for a week feeling great and then have two weeks of problems. So the Humira and Imuran were not the "miracle drugs" for me as I hoped they would be. I am actually going back to the dr 10/2 to re-evaluate if I want to continue the Humira or what I should do. I am just not sure if the side effects are worth it if it isn't working 100%. As far as covering Humira without doing Remicade 1st - I have United Health Care and I tried Remicade about 10yrs ago and UHC had no questions about covering the Humira, but I also have an HSA plan so I have a huge deductible before UHC pays anything. I was nervous about shots in the tummy too but I found the tummy to be less painful than the thigh and I don't have much extra fat in the tummy. I hope this rambleing is helpful. MB

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 8/30/2007 9:52 AM (GMT -7)   
MikeB...thanks, that is a good idea and I will call him when i get back from the woods this weekend.

MBJOH...great info. I am actually UHC with a high deductible HSA also (unless my company changes the plans around again 1/08). your thoughts push me more towards my original thought of try the imuran before going to the humira

Thanks for the help guys! I'm in a grumpy mood and your quick reponses helped make me feel better! Thanks a lot
Dx'd '90 (emergency rupture), symptoms ignored long before that, stable with Pentasa, '03 fistulas and bad flagyl reactions, only on B12 and vitamin supplements now
I'm riding on the escalator of life....


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 8/30/2007 10:25 AM (GMT -7)   
Hi Habs:

I do B12 in the arm, buttocks and thigh I have never tried stomach. Thigh I can do myself, Buttocks is sometimes a bit of a struggle, arm I usually need hubby's help. (he pinches the skin I poke the needle. I was taught self-administration and still have the sheets explaining how. I could probably scan and send via email. If you want them send me an e-mail.

It WILL get better. The first step is acknowledging that you are sick and that you can't tough it out alone. I know I spent many years wishing myself well, but optimism and denial could only take me so far. Funny thing is, it wasn't until I could really internalize and acknowledge that I was sick that I began to feel better -- Getting to that point took a long time and much misery though.

Good luck on your journey.
Belleenstein:

30+ years living with Crohn's.


MBJOH
Regular Member


Date Joined Mar 2007
Total Posts : 257
   Posted 8/30/2007 11:38 AM (GMT -7)   
Habs - I agree with you - try the Imuran see how it works, if you don't get the results you want than add Humira. Hope you feel better soon. MB

Crazylegs
Regular Member


Date Joined Aug 2012
Total Posts : 24
   Posted 8/4/2012 10:55 AM (GMT -7)   
I tried imuran after pentasa 4000/d and others before going to Humira pen injections. Imuran was a disaster for me. I could hardly walk and felt like I aged 10 yrs in 1 month before I could get off of it. Got off and recovered very quickly and went to Humira. Humira is working fine for me.
I do the B12 shots once/mo in my thigh using a 5/8" lg 25mm needle. Once per week I could probably handle switching thighs and locations. Pray the best for you. Crazylegs

Crazylegs
Regular Member


Date Joined Aug 2012
Total Posts : 24
   Posted 8/4/2012 10:56 AM (GMT -7)   
I tried imuran after pentasa 4000/d and others before going to Humira pen injections. Imuran was a disaster for me. I could hardly walk and felt like I aged 10 yrs in 1 month before I could get off of it. Got off and recovered very quickly and went to Humira. Humira is working fine for me.
I do the B12 shots once/mo in my thigh using a 5/8" lg 25mm needle. Once per week I could probably handle switching thighs and locations. Pray the best for you. Crazylegs

HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 8/6/2012 7:42 AM (GMT -7)   
Really old thread...just an FYI things have changed a lot for me since this thread.  Might not want to use old info.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 3:38 AM (GMT -7)
There are a total of 2,732,879 posts in 301,067 threads.
View Active Threads


Who's Online
This forum has 151222 registered members. Please welcome our newest member, TAS-MS/lupy.
237 Guest(s), 2 Registered Member(s) are currently online.  Details
dizzydaisies, Skyy


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer