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goaliegirl484
Regular Member


Date Joined May 2006
Total Posts : 28
   Posted 12/14/2007 6:09 AM (GMT -7)   
Hi All,
I have been in flare-up since labor day this year.  I have tried everything suggested by the doc.  Have gone to see a specialist for a second opinion.
My choice is Humira or Remicade.  My doc gave me pamphlets on each drug.
I would like something fast acting, since I have been in pain for such a long time (percs dont work), but I dont want to be sicker from the side effects than I already am (although pain or side effects from the drugs may be a welcome change from the Crohn's pain).
Any advice from any people on these two drugs???
I have till the begining of next week to decide, since I am waiting for some bloodwork to come back before I start the med.

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 12/14/2007 11:23 AM (GMT -7)   
I had Remicade for 5 years and it worked well however in the 5th year I started having reactions to the med. I still recieved it but I had to take 40mg of pred the day before and day of the infusion to help the severe tachycardia and heart arrythmia. I have also gotted really dizzy during 1 infusion but that was a 1 time thing and I think it had ot do with me not eating anything before going for my infusion that day. I have bad veins as well most times the nurse was able to get me first shot but the longer I had been getting the meds the worse the scar tissue got in the 2 good places I had for catheter placement. Since I had it so long and bad veins when I need a cath at the hospital they had great difficulty and usually have to get a central line or a jugular catheter...not fun last er room resident tried to get my jug on the r side without numbing it first needless to say due to the pain I had trouble with it. You are supposed to take a deep breath in and hold it while they place3 it and they typically have to fish around 4 my vien so it blew after he got 1 of the blood cultuers they didnt want to use the picc I had at the time since most likely that was the cause of my fever. They were right I had picc line sepsis.

As far as humira I have been on it since Sept I was fearing giving myself a shot and I wont lie the starter kit only comes in the pen injectin form and to me even with icing my leg first it hurt me a lot. Some people dont feel it burning but I do. I now get the syringes and it still will burn but I can control the speed at which the med goes in.

With the remicade I had severe migraines for 1 week after getting the injection. It is supposed to help RA as well as inflammatorry arthritis but approx 1 week after my infusion I would be in so much pain especially in my knees and ankles I was unable to sleep for a night or 2 in a row. I never had an allergic reaction to either drug but some people do have those issues. Typically they will premed every person with tylenol and benadryl prior to starting remicade. They monitor your vitals often during the infusion and some offices have TVs with dvd players or even massaging chairs in them. Unfortunatly there are those offices where you get a waiting room style chair and thats about it. I have always had remicade at a doctors office some get them in a hospital setting instead.

The humira will give me a headache and make me sleepy for a day or 2 but I find that the side effects are not as severe and do not last nearly as long as remicade side effects lasted. I will say though I was leary of Humira since I do give it to myself at home. The 1st dose I had done in the office the nurse giving me 2 inj I did the other 2...she made me but kind of glad she did. I planned on having my aunt do it she is a nurse and lives 5 minutes from here but I rather not get all bundled up to go out in the snow and bitter cold for an injection that takes seconds.

I did like when I went for remicade since you meet others in person with CD and you learn what they have gone through other symptoms you may have never known about or had. That was the first time I heard that CD can travel to the lung and wouldnt you know a few months later I had a MRI after being refered to a pulmonologist for my asthma...it gets bad when I get a cold I usually get bronchitis and have had pneumonia every year for a ew yrs in a row now. He said it is rare to have it travel there and at that point only documented in cases where the patient has had CD for over 10 yrs and I fit the description after my lung function test...even when I was better...they waited tillthe bronchitis went away b4 doing that test.

I often wonder the % rate of fistulas healing in both drugs I was getting remicade every 6 weeks but went into remission went off imuran, was tapering down on pentasa and I had been getting 4 bottles of remicade since I was getting joint pain at the 4 week mark and insurance at that time didnt cover it had to be 6 weeks or longer apart. I was nervous doing humira at home not only for the fact of giving myself a shot but also was concerned about any reactions I would have. I told the nurse who taught me how to do the inj and she had me stay in the office longer than a pt who had no issues in the past with remicade to monitor my vitals a couple extra times
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
 
 
 


goaliegirl484
Regular Member


Date Joined May 2006
Total Posts : 28
   Posted 12/14/2007 12:34 PM (GMT -7)   

wow,

thanks for all the information.  I was wondering about the lung thing.  I have had a cough since my flare-up started.  Every once in awhile I get wheezy.  I was wondering if it was connected....

I think I am leaning towards the Remicade.  The docs that i talked to said it was faster acting than Humira.  My docs office has a remicade room that has a TV and DVD player with plenty of comfortable seats.  I think I would like to be monitored when i am taking the drug.  I am not sure if i can do the Humira self injection....I was told to do it in my side...

I'm sure i could put up with either side effects...I just want the Crohn's pain to go away.  The new pain would be something different to look forward to.  I already have the arthritis associated with Crohn's, so I can deal with that.

thanks again for the info.


diafygi
New Member


Date Joined Nov 2007
Total Posts : 4
   Posted 12/14/2007 1:04 PM (GMT -7)   
I have been on remicade for 5 years, before that I led a miserable life for years. I was down to 108 pounds from my usual 170. Now, for the past five years I have led an almost normal life. For me remicade has been a wonderfull. I am also on imuran, 200 milligrams. They work well together. As far as side effects, don't let all that you hear and read about it scare you off. It has changed my life.

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/14/2007 9:56 PM (GMT -7)   
Umm, I would try Humira first. I am pretty sure when I started Remicade I didn't get the Humira instead because it was not yet approved for UC yet. My GI wanted me to get Humira because it may have less side effects. I have been on Remicade almost 3 years, it helped heal my fistula and now I just have an ulceration there. It healed a lot within 3 months. I still was flaring a lot though. After a year on Remicade I would say was the biggest difference as far as feeling better and almost remission. Then I felt like it wasn't working so well and they gave me a higher dose every 6 weeks. Last month I started having the worst joint pain, some of the worst pain in my life. It has continued since then. I may have developed antibodies to the Remicade. Now I am trying one more dose of Remicade (I am scared though). If I keep having mouth sores and joint pain, I will switch to Humira. I will never be able to take Remicade again.
Adrienne,27
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks, Lomotil, Tramadol, Darvocet, Clorazepate, new meds I am about to start: Prograf, Cymbalta, Lyrica


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 12/15/2007 3:48 AM (GMT -7)   
Hi, I am on Remicade for over 2 years and have no-side effects. I have been in remission. Which ever you decided I hope it works good for you.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


packfan
New Member


Date Joined Dec 2007
Total Posts : 18
   Posted 12/20/2007 8:36 PM (GMT -7)   
Hi I have been on Humira for about 4 months. I have never taken remicade. Humira seemed to be working good at first but now my fistulas are acting up again. As for the giving yourself an injection. DO NOT be afraid of it. I also had my loading dose at the clinic. Nurse did 2 then I did 2. You can inject yourself in the leg or stomach. I find the leg slightly more painful and always rotate sides giving my injection in the stomach. It is hard to get up the nerve to inject yourself the first few times, but I swear once you get used to it, it is so easy and not a big deal at all!!!!! I am 27 and dont have been diagnosed with crohns for about a year so I don't have a ton of experience with diff meds. But please do not let the self injections scare you off of humira. Its seriously a 10 second stinging sensation. Also the nurse makes sure you feel comfortable giving yourself the shot b4 you leave and if you get scared you can always go back to the clinic for help. Like I said I dont have a ton of experience but I would recommend Humira for being fast and easy to use.

~M~

goaliegirl484
Regular Member


Date Joined May 2006
Total Posts : 28
   Posted 12/24/2007 6:49 AM (GMT -7)   

Hi,

Thanks for all the advice....

I am going thru prednisone withdrawals right now.  I thought the worse was over a couple of days ago, but three days ago my chest and ribs started hurting terribley.  I have a hard time taking a deep breathe and my ribcage, front and back, just hurts.  I have a hard time moving and get breathless real easy.  I have been taking Ibuprofen for the pain (doesnt help).  Not sure what to do.

Have my first infusion of Remicade on the 28th.

Once I start felling better, I have to start working on losing the 30 pounds I gained on the prednisone....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/24/2007 8:42 AM (GMT -7)   
Just fyi Ibruprofen is really really bad for our guts.  You might want to call your doc and ask for something else for pain.  No sense in making your guts worse with Ibruprofen.

Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


SeanM
Regular Member


Date Joined Dec 2007
Total Posts : 44
   Posted 12/24/2007 9:02 AM (GMT -7)   
I have been on Remicade for about 5 years now and I have had no side effects or adverse reactions during infusion.  I do admit that the drug is not as successful as it once was, my body has developed antibodies but fortunately for me it still does the job.  It does a fair job healing up fistulas, they seem not to be as irritated but it doesn't heal them 100%.  My doc has suggested moving to Humira but for now I'm going to stick with what works.

32 yr old male
Diagnosed with Crohns in 1994 (lower bowel/ileum)
Medication history:  prednisone, azacol, sulfasalazine, cipro
Current Medications: entocourt (periodically-as needed), Remicaid, flagyl
Surgeries: 2002 (remove fistula), 2004 (6" of ileum removed)


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 12/24/2007 10:03 AM (GMT -7)   
I also am on remicade and it really helped speed the healing of the big ulcer around my rectal fistula. After the infusions, I found I got a mild headache for the rest if the day. Drinking a lot of water the day before and day of the infusion eliminated the headache. I take 2 extra-strength tylenol and they give me benadryl and solu medrol sterod before the infusion to cut teh chance of a reaction. I suggest you have it at an infusion center or hospital in case you start to have a reaction (which can be fixed with more benadryl). I really hope your first infusion goes well and you start to heal!!
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