Humira??? I need advice???

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Lauren3
New Member


Date Joined Mar 2008
Total Posts : 8
   Posted 3/7/2008 9:37 AM (GMT -7)   
 I was diagnosed with Crohn's in May 2005 after experiencing extreme abdominal pain and diarreha. I began taking Asacol and Immuran. The Immuran made me very sick so my doctor switched me to 6MP. That also made me very sick. I decided to just stick with the Asacol. I have been taking that since May 2005 with no problems at all. I had a baby in September of 2007 and took my meds the entire time. No problems. In January 2008, I developed a fistula (at the time I had no clue what it was). I had several tests done and am currently in the situation where I may need to change my meds. I have been on Flagyl since January and am receiving horrible side effects. My doctor says that the flagyl can heal the fistula and the inflamation I am having, but it is not guaranteed. He thinks I should step up my medicine to Humira or Remicade. I am thinking Humira will be more convenient, but I am hoping that the Flagyl will heal everything. I am scared to change meds. I want to have another baby and am not sure if you can get preganant while taking the Humira. Can you socially drink alcohol? THey are so many questions I have. I am confused and don't know what to do. I know that I need to get myself into remission ASAP. Anyone have advice??? Has anyone developed a fistula???

Help!!! Thanks for listening.<!-- / message -->

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 3/7/2008 9:47 AM (GMT -7)   
I am on humira now I had been on all of those in the past. I ended up having to have surgery to remove the fistula and the surrounding bowel and they even had to take my belly button since my fistula was right up against it. The humira did wonders though while we tried other things to help the fistula. I feel that had I begun the humira sooner or increased the dose sooner (I was on double the maintanence dose prior to the surgery to remove the fistula) the fistula would have resolved with just that. I was on Remicade from 2001 until 2006 my last dose was 12-26-06. I was getting it everey 8 weeks I was flareing from august 06 til well....now. My ileum perforated in february of 07 so obviously i was unable to get my remicade Tx but after getting it for those years I began having adverse reactions to it plus it was adversly affecting my asthma. Yes you can drink on Humira...oh they tried cipro on me and I was told if it didnt do anything at all in 1 week it wasnt going to do anything as far as helping the fistula, I have not been on flagyl for about 10 months.

My doc knows I want a child and if by mid summer I am doing well he will give us the green light. He plans on keeping me on the humira the first 2 trimesters and then take me off of it in the 3rd since that is when meds cross the placenta and there still is not much as far as humira and pregnancy out there. I have been on Humira since September and when I had my wound infection in january I have had to go withoutit til it healed. I went from Jan 4th till Feb 27th with no humira I am on it again but my GI has me doing the regular maint. dose and then see if I need to boost it back to where I was b4 Sx.
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
 
 
 


Lauren3
New Member


Date Joined Mar 2008
Total Posts : 8
   Posted 3/7/2008 9:59 AM (GMT -7)   
How long did you go trying other treatments before the Humira.  It has been about 2 months since the fistula developed. Like I said I am hoping this Flagyl heals it, but like you said I may get to a point that it may be too late.  This is the first time I have ever had problems with my Crohn's.  It is just so upseting.  Why did you start Remicade and not Humira to begin with?

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 3/7/2008 10:41 AM (GMT -7)   
I went to HUmira quite fast this year only because I have had CD since 1987. I have had 4 surgeries for CD since February 07 prior to that all meds kept my CD controlled. I was on Imuran and azulfadine for years then due to my asthma I was pulled off of the imuran but at the time I was in remission thanks to remicade. I also was on remicade every 6 weeks then while in remission I was only on remicade every 8 weeks and 250 mg of pentasa a day at that time I was slowly tapering off pentasa. I had a bowel resection from the perforation 2-12-07. I had complications and my bowel didnt wake up had ileus and toxic megacolon so then 2-19-07 I had another surgery to give me a temp ostomy. I was off all CD meds from 2-12-07 til july of 07 since most are symptom free post op and they wanted to wait til after my ostomy was reversed b4 starting me back on meds. I had my ostomy reversed in July 07 then 1 month later I was placed on Pentasa as a maintanence drug imuran and remicade were talked about as well as humira and in what order we would use them then I informed him (I had a different GI prior to the ileum perforating) about my adverse reactions after 5 years of remicade which only started in late 05 but they began occuring every infusion thereafter and also I informed him of the Imuran.

I actually have more joint issues associated with my CD than gut (with a few exceptions as in last year and when 1st Dx). I was sent to RA docs and they tried meds such as celebrex etc all which made my gut flare so that was why I began Remicade in the 1st place. I had informed the docs of the stomach pain 1 month post op they brushed it off as healing unfortunatly I am having the same pains again...also my joints were swelling and causing the issues I am use to experiencing but since surgery sometimes the joint pain is so severe I cant walk. My GI sent me to another RA just to make sure that the RA doc felt Humira would be best for me...they had placed me on entocort sice my GI said most joint assoc with CD when it flares usually means assoc with colon inflamation.

My new RA doc felt that yes the joints were from CD and he agreed with the starting of HUmira (I was scared ****less about giving myself a shot but now that I am use to it it isnt bad) for my joints. Well then I had to get insurance approval. While waiting for the approval to go through that was when the fistula broke through mine was along the incision line right up against my belly button. So Mid september that occured and the loading doses of Humira did wonders for the fistula as well. I had to set up an appt at the GIs office so a nurse would show you how to give yourself the shot ...starter kits only come in pens I found them much more painful than the syringes but some prefer the pens (they are faster since it automatically goes in at a certain rate where as with the syringe when it begins to burn I can stop pushing the plunger for a second or 2 and then start again). about a week after the injections the fistula was hardly draining and the size of it was so small compared to 1 week prior. I waited til the next dose which is 2 weeks after the 1st and when it was getting closer to giving myself the next dose the drainage increased and the size of the opening on my skin became larger. I had this occur even when it was 1 shot every other week about 10 days after the shot it was draining lots again and also noted my joint pain increased about the same time.

I informed my GI about this so he changed my script to one shot every week. This did great things for my joints and helped drastically with drainage from the fistula but too late to heal it. My GI placed me on Cipro to try to heal it. I was sent for another CT since I was in severe pain from the fistula they wanted to make sure there was no internal abscess since you cannot use humira (or even get a remicade infusion) if there is any active infection. The drainage picked up more through Oct. so my GI sent me for a MRI enterography and a few days later I was having a follow up at my surgeon's office and he had always seen the fistula barely draining etc...he was going to see it at its glory this time. So on Nov. 1 after work I went to his office he looked at it and immediately said you need to go to the hospital and get a picc line placed and get TPN to rest the bowel to try and heal the fistula.

I had that placed the 2nd and the size remained the same but drainage slowed since I was taking in only clears by mouth and not many. The 19th I wound up back at the hospital the picc line became infectedso it had to be pulled. There was mucosa showing at the surface of the skin it appeared like a stoma. Those typically mean small bowel but the drainage was so thick they figured it had to be large bowel but he had told me he never knew a large bowel fistula to not heal on its own. I went home on thanksgiving still using my humira at this point he was telling me to set up a fistulagram (to locate the length of the fistula as well as what part of my bowel it was attached) as well as a colonoscopy. I had these tests done and surgery was scheduled for january 4th...well I had a cold over the holidays, my PCP was on vacation so my surgeon scripted antibiotics and I knew since I had a cold I could not give myself the HUmira. My Surgeon made me see my PCP before scheduling Sx I was also able to see my GI prior to Sx now too. My PCP cleared me for Sx 1 week later so I set it up for Jan 11th. My GI was happy that I knew to not give myself the shot and happy to know that when I did not get the shot that week that drainage increased and joint pain returned...not happy that I felt miserable because of it but glad to know I was not being overmedicated.

I called him yesterday since I have only had 1 shot now since my Sx and the stomach pain and joint pain returned 3 weeks ago and it was the same type of pain gut wise that I felt until pressure from the fistula was relieved by breaking through the skin and redusing pressure. Yesterday I was unable to walk without a brace on my ankle I couldnt place anyweight on it without falling, I tend to have more CD issues around that time of the month. I was supposed to have my period this week but it is not abnormal for me to skip a period a couple times a year however I get all of the other things that accompany it such as heacaches pms etc, he still prefers I remain on the regular maint. dose of humira before we decide to up it againsince he feels this increased swelling may just be period related he feels it may resolve on its own.

When I got the okay again to start back up on the Humira (since I had joint and belly pain 2 weeks prior) I was so excited to give myself a shot. I started with Remicade since back in 2001 there was no HUmira (if there was it was in trial phases and I am not a guinnea pig I met many CD patients that were in trials for meds and they ended up with severe side effects that could not be reversed)
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
 
 
 


Beth
Regular Member


Date Joined Aug 2003
Total Posts : 303
   Posted 3/7/2008 12:22 PM (GMT -7)   
Lauren - I'm 32 weeks pregnant and have been on Humira the entire time. I've been on it since April 2007. My doctor and I discussed having me go off it during the 3rd trimester (like Dragonfly mentioned) but since my Crohn's is so severe when untreated, we decided I'd stay on it.
I'm not sure about drinking alcohol on Humira - I haven't had a drink in over 3 years. I don't remember seeing anything in the literature about avoiding alcohol though.
I was on Remicade prior to getting pregnant with my first child and, hands down, I like the ease of Humira much, much better. I have had the same results from both drugs - they both put me in remission.
Beth
 
Dx in early 1999
Resection in June 2006
Currently on Humira
 


Lauren3
New Member


Date Joined Mar 2008
Total Posts : 8
   Posted 3/7/2008 12:29 PM (GMT -7)   

Thanks for sharing Beth.  If you don't mind me asking, what is the reason for changing to Humira.  I am having a hard time with changing my medicine.  I have been symtom free with only taking Asacol.  I need to make a decision before it is too late.  Do you take any other meds with the Humira?


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/7/2008 1:11 PM (GMT -7)   
I drank while on both Remicade and Humira, but remember you cannot drink while on Flagyl. I am curious what dose you have been on for long term use to heal the fistula. I was on it a bit ago, 1000mg/day, but only lasted a week. I can't stand the nausea and taste in my mouth. However, I'd love to heal this fistula that I have!
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05
--1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone
--tried Prochymal in Phase III study (can't wait til it's approved!)
--waiting to start Tysabri
--single mom to 10-year-old girl


Lauren3
New Member


Date Joined Mar 2008
Total Posts : 8
   Posted 3/7/2008 1:41 PM (GMT -7)   
Yeah, I know that you can't drink on Flagyl.  I have been taking 1000 mg/day.  It has given me bad diarehea, but my hope is that it will heal the fistula.  My fear is that it will heal the fistula but not the track.  My doctor thinks that I should up my meds to Humira but I am not so quick to do that. 
 
Are you still getting the fistula's with the Humira?

Beth
Regular Member


Date Joined Aug 2003
Total Posts : 303
   Posted 3/7/2008 2:43 PM (GMT -7)   
Lauren - I stopped taking Remicade quite a while ago and had had allergic reactions to it while I was being infused. Since it had been so long since I had taken it and because of the reactions I had, my doctor said that he didn't want me to go back on it because he thought the potential for even more severe reactions would be pretty great.
I was on Imuran by itself for quite a while and then started Humira almost a year ago. Once I had been on the Humira for about 6 months, the doctor told me to stop taking the Imuran. It just so happened that I got pregnant at about that time so I went off the Imuran then. I did have to go back on it for a bit but as my pregnancy has progessed, I have had ZERO Crohn's problems so stopped taking it again. I've also been able to go 14 days between Humira - I was up to taking it every 10 days because at the end of the second week I'd start having problems again.
By the way - I had several fistulas in the past that didn't heal until I started Remicade. Flagyl wasn't enough to heal mine - I ended up having fistulotomies (or fistulectomies - I always forget what). Basically, they had to do an incision and drainage twice on them for me to get relief.
Beth
 
Dx in early 1999
Resection in June 2006
Currently on Humira
 


Poo'n at the speed of life
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 3/7/2008 3:21 PM (GMT -7)   
Along with the severe side affects that I read about...what have any of you experienced with it....ie, fatigue, color vision...that sort of stuff.

Beth
Regular Member


Date Joined Aug 2003
Total Posts : 303
   Posted 3/7/2008 3:27 PM (GMT -7)   
I haven't had any side effects from Humira except for an itchy spot where I inject it and that only lasts a day or so now and can be easily controlled if I put Benedryl cream on it.
Beth
 
Dx in early 1999
Resection in June 2006
Currently on Humira
 


Lauren3
New Member


Date Joined Mar 2008
Total Posts : 8
   Posted 3/7/2008 4:08 PM (GMT -7)   
I am basically dealing with severe diarreha.  I can't really handle much more of it.  I don't really want to have any kind of surgery and am leaning towards the Humira.  There are just so many what if's?  I would love for the Flagyl to heal the fistula, but it hasn't yet and it has been about 2 months.  It has healed significantly, but I can still feel the "track".

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 3/7/2008 4:10 PM (GMT -7)   
I know my GI mentioned stopping the Humira when I get to the 3rd trimester ....when obviously I get pregnant I will discuss that more with my GI and whoever I choose as my high risk OBGYN....MY colorectal surgeon's wife actually recently had a baby and since October is back to work and she is a high risk ob but my doc wants to make sure whoever I choose is affiliated with Woman and Infants Hospital in RI since they actually have high risk specialists for those with IBD there in case things occur. My CD is pretty severe seeing that it returned 1 month after my ostomy reversal and the reversal was done after 4 months, I was on Pentasa to prevent but it didnt do anything and the fistula appeared while I was on Entocort. He just wants more information on HUmira and Pregnancy he is always up to date with the latest statistics etc but if my CD obviously increases or remains slightly active during the first 2 trimesters on Humira I highly doubt any doc would pull you off the meds keeping it at least controlled at that level. I as you can tell from my signature below also have other reasons to see a high risk doc, the asthma, arthritis, severe food allergies and with CD diets I fear malnutrition for the fetus etc Once I am able to drive again I plan on getting in to see a high risk doc since my current gyn only does gyn I have met with fetal maternal meds b4 at the hospital prior to my marriage and I was on diff meds then and heard pros and cons of the meds and diff trimesters and if staying on certain meds they would do more aggressive as far as frequency of ultrasounds etc.

I hope that I will be one of those women who go into remission while pregnant but I prefer to plan for the worst case scenario so if something happens I have docs that already know me and know my background therefore allowing me to get into the office sooner than if I am a new patient. I hope I really do that I get the green light come this summer to start trying for a family but I do definitly want my "annual" stuff done as well since it has been over 2 years since my last pap since I began flareing when I was to get it done before and the pain is more severe I find as far as my annual gyn exam with a flare then most of you know what I have been thru since then and up til now. My current GYN wont mind since she has reffered me to the fetal maternal etc in the past just to know what to expect with med reactions and I think on the Humira site there is a place where you register as a patient using HUmira and if you become pregnant so that they can tyoo follow your progress and if there are any issues...not sure if that is still on their website it had been back in September ...I started it in september so I was getting info on their site
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
 
 
 


Lauren21
Regular Member


Date Joined Jan 2007
Total Posts : 200
   Posted 3/11/2008 8:15 AM (GMT -7)   
i still think its a bad idea to take those meds when getting knocked up, but whatever...delete my posts all you want
22 yrs old, female
Crohn's Disease (diagnosed 2006)
Humira- stopped due to allergic reaction on Dec 1, 2007
Not currently on any medication
 
 
 
 
 
 
 

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