Question for patients who are on Humira WEEKLY

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

jsk218
Regular Member


Date Joined Jan 2009
Total Posts : 29
   Posted 7/12/2010 9:47 AM (GMT -7)   
Hi,

I have a question for the people who are on Humira weekly (instead of every other week). How did you know it was time to up your dosage, or was it a call your doctor made (and what was that based on)?

I’ve been on Humira bi-weekly for about a year and a half and it seems to be less effective than it used to be (back to having diarrhea most of the time, even right when I get my shot). I was under the impression that I’d sort of be on this drug for life, so to only get a year and a half out of it seems a little bleak to me.

I feel pretty OK most of the time, and so I’m hesitant to take more drugs than I need to. I’m trying to find out if it’s better to be as healthy as possible for as long as possible; or if it’s better to feel less good so that I can get more time out of this medication. Has anyone else been in this spot? What did you do, and how did you come to that conclusion?

Thanks all for your input!

Joey
Diagnosed with Crohn’s Disease in Jan 2007, though sick since mid 90’s. Currently on Humira and Protonix. Have had success with Entocort and Cipro; negative experience with Methotrexate.


Jonny Five
Regular Member


Date Joined Sep 2009
Total Posts : 107
   Posted 7/12/2010 12:38 PM (GMT -7)   
A few months after I was declared in remission from my bi-weekly Humira I began having similar problems. Diarrhea started back up, and I began getting fatigued and showing some blood in my stool. I went to my doctor, he did some bloodwork and determined I was flaring again (based on inflammation markers) and after a few trial-and-error approaches he ended up recommending that I double my Humira to a weekly dose.

So I guess my long-winded answer is - I let my doctor know my symptoms and let him work out what to do. If you feel like he's not considering the right options, you could always mention a double Humira dose to your GI and see what he says.

As for the treat it vs. ignore it question - I really have no idea. Nanners is always going on about how the disease will do microscopic damage to you if it is active, so I think her opinion is generally to treat it before it's too late! My doctor seems to be of a similar opinion considering he told me to double my Humira dose despite my similar objections to taking so many drugs. However, I haven't done any research into this myself so I don't really know the consequences of not treating a minor flare.

Hope that helps. As always, my advice is to ask your doctor (GI) and be specific with your questions if he's not giving the information you want.

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 7/12/2010 12:43 PM (GMT -7)   
I'm in that spot right now. Same as you, same problems - that it's not holding me until the next shot and I'm having a resurgence of all of my symptoms. I've been on humira for 2 years. I probably should have upped my dose to weekly about a year ago, but I was without insurance and was getting the humira from a PAP. I've come to the conclusion that it is NEVER better to let yourself feel like crap just so you can eek out a few more months with the medicine. I was on Remicade prior to this for 6+ years and it was losing effectiveness towards the end. I spent the last 9 months on remi suffering because it wasn't holding me and I was clueless. (Why isn't it working???) So, now that I am on biologic #2 (humira) I am much more aware of the signs. No biologic is going to last forever. So my take on it is to use as much as you can to keep you well and hope that by the time it stops working you can move on to a new med. They're coming up with new stuff all of the time. I was on the "high" dose of remicade for 4+ years, so I'm hoping that just because I take Humira weekly it won't mean that I'm going to wear it out faster. Hope that makes sense.

Stef

Sarah1116
Regular Member


Date Joined Nov 2004
Total Posts : 55
   Posted 7/12/2010 9:39 PM (GMT -7)   
I had the same problem, began flaring while on the bi-weekly shot, was upped to weekly shot.  That worked for awhile and then once again started flaring.  Then I was moved up to two shots a week and methotrexate.  I did a 12 week course of methotrexate, every 4 weeks my dose went down and instead of continuing at 10mg per week I stopped taking it and just kept doing the two shots of humira a week.  Been doing that for about 9 months.  I would talk to your doctor if you are worried that it is not as effective as before.  He can check you out and determine the best course of action and then you can discuss those options with him.  To answer you initial question, I listened to what my doctor recommended after I told him what was going on and then determined I agrred with his aggressive course of action.  As a FYI what triggered me to see him was the concern it had spread to my throat, which it did.  I wish you luck and longer lasting relief soon!

Sarah
Diagnosed Sept. 2004 (two weeks before my wedding)
Currently on 80mg Humira, Prevacid, Methotrexate 25mg and Folic Acid
Have also taken Entocort, Remicade, Pentasa and Imuran


jsk218
Regular Member


Date Joined Jan 2009
Total Posts : 29
   Posted 7/13/2010 11:16 AM (GMT -7)   
Thanks very much for your input!! I was really starting to feel like I was being a "baby" for having these concerns. (I'm such a chicken when it comes to all of this - I've dragged my feet every step of the way, and not surprisingly, the doctors have been right every time.)

Stef176 - you said that
the conclusion that it is NEVER better to let yourself feel like crap just so you can eek out a few more months with the medicine

What if I don't really feel like crap, or don't feel like crap all that often? I definitely have fewer good days than I had before - but when I think about the "old days" before I was on any medication, I feel like a million bucks by comparison! I guess it's just a weird line for me about feeling "less good." Especially when I read this message board, and I see how many people are so much sicker than I am....

Thanks for your thoughts - it's definitely giving me more to chew on...

Joey
Diagnosed with Crohn’s Disease in Jan 2007, though sick since mid 90’s. Currently on Humira and Protonix. Have had success with Entocort and Cipro; negative experience with Methotrexate.


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 7/13/2010 2:57 PM (GMT -7)   
Joey - I know what you're saying about seeing how sick other people are, but really the only thing you can do (and I know you know this) is compare yourself to yourself. So you have to decide if the once a week humira is what you need based on how you're doing now vs. how you were doing before. And don't go all the way back to when you were so sick you could hardly live. We crohnies tend to do that to ourselves. We get a warped sense of what is "liveable" because we tell ourselves, "Well, I've been worse." Be as realistic as possible when trying to assess your current situation. Maybe a better thing to do is compare how you're doing now compared to a person without crohn's. Then decide if you need to go to humira weekly. It'll at least put things in perspective fore you.

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 7/14/2010 9:55 AM (GMT -7)   
Joey, I've switched back and forth between Humira and Cimzia a few times now trying to figure out what works better for me (answer is neither...both work for about a year and then I lose response).  I have asked both my rheumy and my GI twice about going to weekly Humira shots and they are telling me they can't get it approved that often.  I asked my old clinical trial dr. about it at a CCFA walk and he said he has patients on it weekly and that it just requires a fight from the dr. with the insurance company.  So, your dr. may not have any issue with it at all (sounds like most people's dr's don't), but just be prepared that he/she may not be willing to go to the trouble unless your symptoms are much worse than they were previously on it.  I'm 29 and walking with a cane or crutches but mine aren't willing to try, apparently. 
 
Only you can tell if you are feeling better/worse than before, but never think that you will feel the way you did pre-Crohn's.  Even in remission, many people still have symptoms, they just aren't as often or as bad.  If you are at a place that you are content with, you may want to hold off on increasing the dose.  I seem to lose response after about a year and increasing to weekly doses could mean I'd lose response even sooner.  I wouldn't have been willing to take that chance a year and a half ago, but I am willing to now.  If you do OK most of the time, you may want to try to lengthen the amount of time you can take Humira by not increasing the frequency yet until you really need to.  If you are not content with where you are right now, then ask about weekly injections.  It can be a tough decision.   
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


JAB
Regular Member


Date Joined Nov 2003
Total Posts : 351
   Posted 7/14/2010 10:50 AM (GMT -7)   
I was changed from biweekly to weekly a couple weeks ago since symptoms resurfaced. Bloodwork was done and a CT Entorography was done and it was determined that the Crohns was very active. Funny thing...the doctor told me that most people don't last a year on the Humira before it loses it's effectiveness. He tells me this after he got me on it. Hello!!! News flash...I don't understand why he would have saved that tidbit til after it starts to fail. Right now I can tell you that the weekly dosage isn't helping at all. The next step is Remicade then surgery. Hopefully the remicade can do something for me.

Good luck on finding remission and keeping it.

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 7/14/2010 9:23 PM (GMT -7)   
I developed a fistula after having a temporary ostomy reversed...I had a hellish time thru my surgeries complications with all...The Remicade stopped working and had a perforation which started the whole surgery thing. After the reversal initially I was on just pentasa after I began showing symptoms they started me on humira (i forget now if the fistula had come thru my skin at that point or not was enterocutaneous) I noticed the weeks I did Humira the fistula opening got smaller then the longer it came to the 2 week mark the worse it got. They put me on weekly at that point to try and fix it without more surgery (that didnt do the trick tho). After the surgery to fix the fistula they had me on it every other week again after some weeks off it while I had more post op infections etc. After still complaining of symptoms they did a CRP and found it was high so they placed me back on 1 time a week.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 11:05 PM (GMT -7)
There are a total of 2,736,219 posts in 301,362 threads.
View Active Threads


Who's Online
This forum has 151452 registered members. Please welcome our newest member, sarajseri.
197 Guest(s), 3 Registered Member(s) are currently online.  Details
NM12, orchid_rain, Girlie


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