Share Facebook
Crohn's Disease Forum » Support Forum » Vent Away » Been away for a bit- supremely frustrated


05-02-2015, 11:18 PM   #1
aideen33
Senior Member
 
aideen33's Avatar
 
Join Date: Jul 2014
Location: Dallas, Texas

My Support Groups:
Been away for a bit- supremely frustrated

Back story- I started Imuran in November, and Humira in December. I was originally told 8-12 weeks til wed know if Humira was working. Now that its been longer than that, and another steroid taper has failed, Im being told "Oh well it can take a year or even 2 before we really know" and that "we dont really have any other options past humira", despite having only tried Asacol (failed), Imuran (not enough) and Humira.

Additionally... my GI is on the news recently because a patient went to the local media about the fact that the printouts she was given at the doctors office were printed on the backside of papers that contained patient information on the other side. Doctors response to the news reporter was to ask for proof this had happened and when that was provided to say she couldnt comment til she had spoken to counsel. that was a couple weeks ago and to date I have no info on how many patients had their info compromised, if i was one of them, and what if anything is being done to address this.

As if this was not enough, the switch from prednisone oral to solumedrol oral has not been an improvement, and im dealing with a VERY stressful personal situation, which coincides with a rather nasty bout of nausea, D, and no appetite since thursday.

__________________
Homeschooling Mom of 2 special needs kids, grad student in special ed. & geek girl.
Dx'ed (June '14) Crohn's colitis w/ possible small bowel involvement, Pyloric Stenosis. Asthma, Multiple allergies, pre-diabetic, unexplained tachycardia, hypertension, restless leg, and pos. ANA, waiting for rheum. referral for possible lupus
Meds: Azathioprine, Methyprednisolone, metoprolol ER, Lomotil, Tramadol, Protonix, flexeril, ropinirole, farxiga, vits D, b12, biotin, fish oil, glucosamine
05-02-2015, 11:27 PM   #2
FrozenGirl
Senior Member
 
FrozenGirl's Avatar
For some people it can take up to 6 months. Past that view few people 'start' responding. As I'm sure you know there is for sure other options, and lots of this point. You could try another biologic, increase imuran dose or add methotrexate.

And if you sucky doctor isn't enough, personal stuff thrown in, makes it really hard. no chance of changing doctors?
__________________
Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
05-03-2015, 01:27 AM   #3
aideen33
Senior Member
 
aideen33's Avatar
 
Join Date: Jul 2014
Location: Dallas, Texas

My Support Groups:
I need to make an appointment with my primary care, see if theres another in the area in network and consider a referral to someone else. Cause I cannot see waiting for that long. A year is a long time to continue on the steroids which i cannot seem to come off of at least on the current regimen. She seems stuck on the idea that i need to give it "at least" a full year, and that the only thing after humira is surgery which she had already told me wasnt the preferred option cause its not a "cure" for crohns, so Im feeling very... *ugh*
05-03-2015, 01:29 AM   #4
aideen33
Senior Member
 
aideen33's Avatar
 
Join Date: Jul 2014
Location: Dallas, Texas

My Support Groups:
I should note Im only on 50mg Imuran, and Humira biweekly so it certainly seems to me i still have quite a few options
05-03-2015, 04:59 AM   #5
Lisa
Adminstrator
 
Lisa's Avatar
 
Join Date: Apr 2010
Location: New York

My Support Groups:
It sure does sound like you have options left. I would be looking for a new doctor too, and not waiting, especially if you need a referral it may take time, plus there may be quite a few other people looking for a new doctor too it sounds like!
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
05-03-2015, 06:39 AM   #6
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Second the it can take more than 3 months
DS took 5 months but we had to increase the dose ( originally they put him in the kiddo dose 20 mg every two weeks by he was at the max weight for that dose)
We have since upped the interval and added Mtx due to arthritis dx as well

Good luck
__________________
DS - -Crohn's -Stelara
05-03-2015, 11:57 PM   #7
aideen33
Senior Member
 
aideen33's Avatar
 
Join Date: Jul 2014
Location: Dallas, Texas

My Support Groups:
Im okay with giving it a few more months... but 1 or even 2 years seems a bit..... extreme, if that makes sense?
05-05-2015, 12:14 PM   #8
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
I would never subject my kid or myself to a medication not showing noticeable affects more than 6 months. As an aside, some medications may not improve symptoms much but actually are healing the disease. Before you stop Humira I would ask for either an MRI or scope to compare. It could just be a dosage issue or the wrong immunosuppresive. On our 3rd biologic and finally a drug is working on healing, but not much on symptoms. Trying #4 biologic next month.
__________________
Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆
05-05-2015, 12:50 PM   #9
FrozenGirl
Senior Member
 
FrozenGirl's Avatar
Scopes or imaging are a good idea to see if it's working at all. And if you need to switch or add medications it is good to have a baseline. As I said before, 6 months would be my limit.
05-05-2015, 09:36 PM   #10
aideen33
Senior Member
 
aideen33's Avatar
 
Join Date: Jul 2014
Location: Dallas, Texas

My Support Groups:
That actually would fit, my next followup is right around the 6 month mark so i can push the issue then and if shes not listening to me it may be time to look elsewhere I think
05-06-2015, 03:28 PM   #11
FrozenGirl
Senior Member
 
FrozenGirl's Avatar
That's sounds like a good plan.
05-08-2015, 07:21 AM   #12
MommieW
 
Join Date: May 2015
I took Humira for two years before it gave me worse side effects than the benefit it was providing (constant mouth ulcers, sinus infection, fatigue, rash...) I've never heard of it taking a year or two for one of these meds to kick in. In my experience, a month or two is usually adequate and I'd agree that 6 months is plenty of time! Either it's going to help by then it it isn't going to help.

I felt the best in my 15 year Crohns journey while taking Remicade. Unfortunately, my system developed antibodies against it after three years and I had to go off. Humira is not the lest alternative out there.


05-08-2015, 10:23 PM   #13
aideen33
Senior Member
 
aideen33's Avatar
 
Join Date: Jul 2014
Location: Dallas, Texas

My Support Groups:
I feel like with *any* med, if i have given it six month and it doesnt work, then it isnt likely to suddenly start working... Ive been on steroids almost a year already, i cant see staying on them till the 1 or 2 year mark waiting for some humira miracle :/
05-09-2015, 04:08 AM   #14
Sef0912
Senior Member
 
Sef0912's Avatar
 
Join Date: Aug 2014
Location: Texas
Hmmmm...I wonder if this doctor is the same one I was seeing in the area that included others medical records with mine that she sent to my primary care physician and in copies that I asked for when I was tired of seeing her due to problems with her medical practice, including that I never really saw the doctor and my complaints were not taken seriously. There are many other doctors in the Dallas area, and I would suggest switching if your insurance covers someone else. As for the Humira/Imuran combo, it took a while for this to work for me, even though I know everyone is different, and different dosages of Imuran had to be tried in order to reach the dose that had the most effect. (We did try dosages that were too low and high and the next suggestion, if this does not induce remission, is to add methotrexate.)
05-13-2015, 06:49 PM   #15
aideen33
Senior Member
 
aideen33's Avatar
 
Join Date: Jul 2014
Location: Dallas, Texas

My Support Groups:
I know this doc just made the news for handing out printouts printed on the back of papers with patient info on them........

I feel like we should be at least considering changing my Imuran dose (Im only on 50mg a day right now so theres room to go up easily)

Im now waiting on a call back and not getting one. If I dont hear something tomorrow, Im calling PCP for a referral. I dont know how many are on my insurance but Dallas is big enough that even with my HMO there must be other options
05-14-2015, 11:38 AM   #16
aideen33
Senior Member
 
aideen33's Avatar
 
Join Date: Jul 2014
Location: Dallas, Texas

My Support Groups:
Okay ... end of rope with doctor *sigh*

Im getting nowhere with her at this point.... but my insurance does list a doctor here who has some really good reviews within this forum. Theyre willing to take me on, so im talking to PCP now about getting the referral
05-21-2015, 01:30 AM   #17
Sef0912
Senior Member
 
Sef0912's Avatar
 
Join Date: Aug 2014
Location: Texas
Hopefully, you will easily get in to see the new GI and some light will be shed on treatment. Hope that everything goes great and you get back on the road to feeling better.
05-21-2015, 02:09 AM   #18
afidz
Super Moderator
 
afidz's Avatar
 
Join Date: Jun 2012
Location: Mckinney, Texas

My Support Groups:
Where are you in Dallas? My GI is amazing. I read about that doctor and the printouts, couldn't believe it! And the nurse acted like it was no big deal, how many other times did they do that? Med records have socials on them! I hope you find a new doctor soon, they sound incompetent
05-21-2015, 02:20 PM   #19
aideen33
Senior Member
 
aideen33's Avatar
 
Join Date: Jul 2014
Location: Dallas, Texas

My Support Groups:
Im NE Dallas, off of 635 near Garland area.... PCP has referred me to a Dr. Eidem, which if im remembering right is yours ? I saw the reviews here were good so Im hopeful.... they got me in quick, Ive got an appt on Tuesday
Reply

Crohn's Disease Forum » Support Forum » Vent Away » Been away for a bit- supremely frustrated
Thread Tools


All times are GMT -5. The time now is 10:29 AM.
Copyright 2006-2017 Crohnsforum.com