Help with Humira!!!

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cdinchitown
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/23/2009 10:21 AM (GMT -7)   
I am new to this forum, but not to CD.
 
My GI changed me to Humira about 4 months ago after I had been on Remicade for 1 1/2 years.  Developed allergic reaction to Remicade, GI switched me to Humira.
 
Transition to Humira was tough --- had a bad flare up for about 3 weeks.  Humira is working well, no unfamiliar side affects, just the stinging at injection site and fatigue. 
 
I was supossed to take my Humira yesterday, but the mail delivery pharmacy did not deliver it.  Called my GI who told me they will not renew prescription until I come in to see her and that this is standard practice.  I did not know this and no one told me!  Have had D all day, soo bad today, and my next dr appt is not for 3 weeks.  Trying to get in early to get new prescript.
 
Has this happened to anyone else?  AGH!

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 2/23/2009 10:54 AM (GMT -7)   
They should be trying harder to fit you in if not even for 15 minutes so that you can get this medicine. You shouldn't have to wait three weeks to function. You have a life of your own too.
I feel like all Crohnies who are put in this situation should band together for a lawsuit to gain back the money we lose on the time spent waiting to get the medicine that even allows to make it.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 5 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 2/23/2009 11:12 AM (GMT -7)   

wow, that is awful. My GI requires I call for a refill and the most he will give me is 3 months. When he does want to see me when a refill is made the nurse will call me and warn that this will be the last RX until I come in for a follow up apt.

I cannot imagine that they would not refill the med this one time or get you in quicker. I would make my symptoms sound absolutely terrible and maybe the nurse can get you a quicker Apt.

If my Doc said 3 weeks is the best I would be looking for a new Doctor right away, that is too long!

 

good luck.

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

 

 


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 2/23/2009 11:16 AM (GMT -7)   
Do NOT take "no" for an answer. Call your GI's office, tell them you are flaring and that you need and appt with your GI THIS WEEK. They CAN fit you in. First go the "I'm-so-sick" route, then if they won't fit you in you can get nasty. If they won't get you in THIS week, leave a message for the DOCTOR to call you back. Then you can explain and (s)he will make sure that someone calls in a refill for you. Ask him to write it for 3 months' worth at a time. That will save you the hassle in the future. Hang in there!!! Keep us posted.

cdinchitown
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/23/2009 11:18 AM (GMT -7)   
That is a good idea about calling Humira direct. I will try that today.

I feel like I am stalking my doctor's office. I just called them again and they are 'closed for lunch.'

Must be nice!
29 year old female
Diagnosed CD 2003, ulcerative esophagitis 2004, symptoms since 1993 for both
Currently on humira 1x/2weeks, prevacid 60 mg/daily, sertraline 100 mg/daily
Been on pred, remicade, methotrexate, 6mp, imuran, entecort, and everything in between


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 2/23/2009 11:28 AM (GMT -7)   
Stalk them, the squeaky wheel gets the oil. I'm telling you - if you don't fight for yourself, no one else will. They don't care because they go home at 5pm everyday anyway. So, keep calling till you get through.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/23/2009 11:31 AM (GMT -7)   
Well said Stef.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 2/23/2009 11:31 AM (GMT -7)   
KEEP CALLING! If that doesn't work, do you have a surgeon? Maybe THEY can call the GI's office. My surgoen rocks and is awesome about communication for me.

I'm waiting on insurance approval for Humira... no meds...suffering..stomach flu. I SOOO feel you! *hugs* to both of us!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


mojowo4
Regular Member


Date Joined Jul 2007
Total Posts : 137
   Posted 2/23/2009 12:12 PM (GMT -7)   
I just had a terrible run in with my Humira also. My doc upped me to injecting every week and my insurance said no. So after talking to 500 different people at curascript where I get my humira, call ing my docs office 2x day and calling the insurance company and having the doc call insurance and curascript calling doc and insurance and...you see the circle of hell going on here, my insurance finally said it was medically necessary to do weekly and approved it. Only a week and half past injection date but it is done. Was about ready to bite some heads off when finally got the call it was coming overnite. Just keep hounding- like Stef said, squeeky wheel gets the oil. If you bug the crap out of them and tell them how bad you are feeling and don't stop, someone will get it taken care of to shut you up. :)

Dx CD 2003 but probably had it 10 years prior

Dx Primary Sclerossing Cholangitis 2006

GB out '95, Appendix out '96, Kidney stent '02/stone removal '02, Resection '04, fistulectomy '06 2x, tubal '05

Currently on 100mg 6mp-50 mg,  and Remicade every 8 weeks, Ambien, predsnisone, humira 1x wk, flagyl, cypro, diflucan, probiotic


cdinchitown
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/23/2009 12:50 PM (GMT -7)   
Well, bad news on all fronts. The GI practice I go to is one of the most popular in the Chicago area. It has 5 doctors. None of them have appointments available before the middle of March. NOTHING! And I can't get more Humira until I see the doctor - it is a standard of practice that you must keep your 'follow up appointments' when on Humira. Hmmm...would have been nice to know that when I went on it. Had I known I needed a series of regular appointments to stay on Humira, I would have made one and kept it!

I just talked to the doctor's office and the nurses and they have a message out to the doctor and 'will see what they can do.' I've stalked them today - 4 calls already!

So now I am contemplating a month without my Humira. Not a good thing. I called Humira myself and there is nothing they can do if they don't have a script.
29 year old female
Diagnosed CD 2003, ulcerative esophagitis 2004, symptoms since 1993 for both
Currently on humira 1x/2weeks, prevacid 60 mg/daily, sertraline 100 mg/daily
Been on pred, remicade, methotrexate, 6mp, imuran, entecort, and everything in between


daisyrambler
Regular Member


Date Joined Jan 2009
Total Posts : 126
   Posted 2/23/2009 3:04 PM (GMT -7)   
i would say yes stalk them it is your health not theres who care what they think .... and if they wont do anything for you over the phone I would go up there ... show them how sick you are (lol ask to use there bathroom lol) and that you cant make it without your humira !!
> 27 year old female < 
 > Diagonsed with Crohns disease in 2000 <
 > In 2009 I was told my Crohns is Crohn's Colitis ~ they said it was in my rectum, colon and all through my small intestine <
 
 > Medication - pentasa(4000mg), imuran(100mg), prednisone(40mg 30mg 20mg 10mg), vitamin C, vitamin E, calcium+D, multivitamin, b-12, iron, and fish oil <
 
> I thank the Lord every day for my amazing husband and wonderful family <

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