Please Read!!!! Re: Humira & Remi

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sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 7/14/2010 3:18 PM (GMT -7)   
Hello Everyone, I am trying to find out about humira and remicaid so along with reading on the internet (which has scared me so bad) I started reading here. I have been in the hospital in May and then again June because I had to get a seton Drain put in. The first surgery and drain didn't bother me at all (couldn't really tell I even had surgery). The second surgery in June was a lot different, I started running a high fever for a few days and then stayed with a low grade fever for about a week. They were giving me a antibiotic that had to run over a 4 hour period (through the IV). I was sent home on Augmentin (because I am allergic to cipro) and there was very little drainage. Now the last couple of weeks I am in more discomfort then what I was in after the surgery. I am draining a lot and it is irratating my skin and I am just so uncomfortable with the new seton drains that were put in (I now have a total of 3, 2 strings together going from left to right on my butt (that was the sencond surgery, my husband could actually see the bright red string when he opened my recum a little to see why i feel so uncomfortable) and then the one that is in the right side).
Anyway, sorry about all of that info I'm just frustrated and scared. I went to my GI appointment yesterday and the doctor said she wanted me on Remicaid or Humira. I told her I didn't want either one but she said I had to get one one of them and I need to pick. She suggested Remecaid but I have done so much research on it I was so scared so she said that maybe Humira would be better because it's more convient and has a little less side effects then remicaid after the injection (as far as running a fever and what ever else happens). They did a TB test and put me on Flagyl and Augmentin for 2 weeks and when I go back I am suppose to start Humira. I had no clue of the extreme pain and burning until I read it on here. I am not affraid of needles or shots at all but now I am freeking out (I already suffer from severe anxiety and panic attack that I take medication for).
Questions:
How long does it take for the injection to go in?
How long does the pain last?
Does most people develop fever and flu like symtoms after getting the shot? If so how long does it last and is it low grade or a high fever?
Is there any other symtoms that are common with Humira?
How long does it usually take before you start to feel better?
I'm also a little confused because I read that you can't take Remi or Humira with a open wound but I have these openings from the seton drain. I also mentioned to the doctor about my kids getting sick and especially my 4 year old who is always sick and she told me to wear a mask. Is it that serious when being on this medication because we live in a very small place and the way my son is always sick I would be wearing a mask forever. As I sit here and type he is coughing now (and although we tell him to cover his mouth most times he forgets). This medication makes me think about having AIDS/HIV as far as it lowering the immune system. People don't die from the actual AIDS virus but because of their immune system being so low can die from a common cold. Is being on Humira or Remi similar to this?
I actually was suppose to start steroids and 6mp when I went yesterday and the doctor said because of the rectal fistula and small inflamation in the anal canal that I have to start Remi or Humira. I was also reading on here that Humira only last for about a year before it doesn't help anymore, so what happens after that? The only medication I have been on for the last 3 years is Asacol (3 pills 2x's a day), was also on entocort EC about a year ago for almost a year but it only made me use the bathroom more. I am very sensitive to medications and I am so scared..................

37 year old female and a proud mother of 8 kids (5 still living at home) and a very supportive Husband
Found out I had crohn's disease about 3 years ago, I haven't had proper treatment since :-(
Have had rectal abscess and now a rectal fistula, Medications I have taken for crohn's is..... Asacol and Entocort EC......Currently taking....Asacol
Suppose to start Steroid and 6mp next week (May 18, 2010).....I'm so scared :-(
Seton drain was put in on May 4, 2010
I also suffer from very bad anxiety and panic attacks for over 10 years (after my father passed away)
I have tried almost every medication for it but nothing worked or I had a bad side effect so for the last 6 years have been on xanax 1mg., 3x's a day
I started having joint pain about 7 months ago :-(


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/14/2010 3:32 PM (GMT -7)   
Relax. Don't be scared. Both Rem and Humira are great for fistulae.

Me, I'd start with Rem because it's been around for longer and - according to a lot of people on this forum, anyway - seems to have more oomph than the Humira, but convenience might be important to you, in which case go with the Humira.

No, it's not like having AIDS. There are degrees of immunosuppression, and AIDS is at the more extreme end of the spectrum. A lot of people here find that they just have to be a little more careful: avoid people with bugs whenever possible, wash hands more often, be more germ conscious. They might get more colds than usual, or suffer a bit more with fungal infections etc. The flipside is that Rem and Humira can also improve our Crohn's, which makes us healthier, which makes us more resistant to infection, so you may find that you end up being no more vulnerable to infection than you are now.

Let your doctors decide whether it's ok to start Rem or Humira with your fistula. If it had a huge mass of infection inside, they'd probably be cautious; if the infection has been drained and you're on antibiotics already, they probably feel more comfortable about it.

Many of us start these drugs with fistulae - it's one of the reasons we're put on them in the first place :-).

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 7/14/2010 3:35 PM (GMT -7)   
How long does it take for the injection to go in?
- You click the button and hold it for ten seconds, thats it.

How long does the pain last?
-Just for those ten seconds. It burns but I do think it's very worth it if the meds help you and it is leaps and bounds easier than remicade.

Does most people develop fever and flu like symtoms after getting the shot? If so how long does it last and is it low grade or a high fever?
- I never have. I take it and just sit for about a half hour to rest but I feel fine. Just kind worn out from being worked up over the shot.

Is there any other symtoms that are common with Humira?
- I am the queen of side effects but I have had nothing that was a big deal. I noticed more bruising on my body for the first month but then it went away. I noticed more shedding of my hair too but no actual hair thinning. It just stings when you shoot it, thats really about it.

How long does it usually take before you start to feel better?
-I've heard of people feeling better right away. I notice reduced joint pain after the 2nd dose and once the full 3 months (it takes that long to be fully effective) I must say I do feel a lot better, but I am hardly symptom free.

I've never given a 2nd thought to being around sick people or have any open wounds. I would talk to you Dr about the wound thing since you have a "real" one, not just a cut or anything. But I don't think the reduced immunity issue is really something to worry that much about. I think wearing a mask is wayyyy overkill. In fact, it sounds like you are worrying too much in general. This could really help you and it's certainly worth a try. It's really easy to take, and ten seconds of "argh! thins stings!!" is definitely worth it if this helps you.

sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 7/14/2010 4:22 PM (GMT -7)   
I want to thank Ivy and tulipg17 so very much for taking the time to read my LONG post and giving me your advice, experiences (on the medication), and for answering the questions. The GI doctor knows about the seton drains and actually took a peek at them yesterday (my surgeon also works out of the same hospital where I go to the GI clinic at) and I am assuming their concern is getting the crohn's under control because before I started going there I have been very undertreated and thats why I am having rectum problems :-(. I got very worried about the two medications when the doctor told me to wear a mask when my son is sick or if anyone is sick in the household. Maybe she was just being sarcastic because I mentioned my son gets sick a lot and would I be ok with the medications.

I would love to hear more success stories if anyone wouldn't mind sharing them with me. Oh, almost forgot....I was reading someone's post and for their first day of gettong Humira they got 4 shots in one day, is that how all doctors do it? Sorry, one more question.....I have lost SO much weight over the last 3 years that I don't think I have a ounce of fat on me....do you think that with me being underweight I am more at risk for the side effects?

Thank You and sorry if I sound crazy....just very nervous but at the same time want to enjoy life again.
37 year old female and a proud mother of 8 kids (5 still living at home) and a very supportive Husband
Found out I had crohn's disease about 3 years ago, I haven't had proper treatment since :-(
Have had rectal abscess and now a rectal fistula, Medications I have taken for crohn's is..... Asacol and Entocort EC......Currently taking....Asacol
Suppose to start Steroid and 6mp next week (May 18, 2010).....I'm so scared :-(
Seton drain was put in on May 4, 2010
I also suffer from very bad anxiety and panic attacks for over 10 years (after my father passed away)
I have tried almost every medication for it but nothing worked or I had a bad side effect so for the last 6 years have been on xanax 1mg., 3x's a day
I started having joint pain about 7 months ago :-(


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 7/14/2010 4:55 PM (GMT -7)   
I believe that Remicade is superior to Humira in closing fistulae. I would need to go back and review the trials to make sure that statement is true. [short on time so can't now]

The other thing you might want to consider is your costs for either Remicade or Humira. Remicade is given by IV and is usually considered a medical treatment by the insurance companies. You should check what your cost would be. Humira ia a self-administered medication and co-pays apply. We have had people here not be able to afford the co-pay for Humira. Check your co-pay for this med.

I took Remicade for 2.5 years. It put my guts into remission after about 4 months. I am no longer on Remicade but my guts are still doing great. I am one of the fortunate ones, not everyone has my excellent response.
Moderator Crohn's Disease, IBS, and Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/14/2010 5:35 PM (GMT -7)   
I don't have much experience with the drugs you are considering but I can tell you one of my favorite meds for skin irritation which is A&D ointment.  Soothing, inexpensive, protects the skin while promoting healing as well as easy on and doesn't smell bad.  Hope you find the answers you are looking form it does seem that GI clinics should have professionals that can appropriately answer questions and help with the anxiety of these types of decisions.  Would way help peoples anxiety levels!  Like mine!!!!
Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin.
 
 
 


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/14/2010 6:55 PM (GMT -7)   
Ides is right, Remicade is much better then Humira at helping fistulas. Humira did nothing at all for my fistulas. Good luck!
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 7/14/2010 7:43 PM (GMT -7)   
Remicade is the only drug that helped my fistula's and over 30 years, I've had my share of trying different things.

By all means go for the remicade, and when it can no longer help you, then try humira or whatever else is available at that time.

All the best,
Julia

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/14/2010 7:46 PM (GMT -7)   
6MP and Imuran helped my fistulas, but they both made me feel like crap. Some people feel fine on it though. It was a diet change that finally got rid of my fistulas *knocks on wood*.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 7/14/2010 9:15 PM (GMT -7)   
How long does it take for the injection to go in?

Remicade can be 2 hours to 3 based on amounts you recieve as well as if you have reactions causing them to slow down your drip. Humira is 10 sec with the pen injection a little longer if you are like me and use the syringe to help with the burning of the injection.


How long does the pain last?

Pain with Remicade...had none with exception to then trying to hit a vein ...mone are horrid...Humira the stinging lasts a couple seconds.

Does most people develop fever and flu like symtoms after getting the shot?
I never had any reactions like this to either medication. I had more Migraine headaches with the Remicade as well as vaginal yeast infections (more while I was on the Imuran and remicade combo).

If so how long does it last and is it low grade or a high fever?
Didnt happen to me so unable to answer this one.

Is there any other symtoms that are common with Humira?
I find Humira HELPS my joints more than remicade did, I dont have to premed with prednisone for Humira like I had to eventually with Remicade (about 2 years into it I began having reactions then 6 years of it it stopped working).

How long does it usually take before you start to feel better?
I noticed a huge difference with Humira within a few days I had to go on the 1 shot per week regimen in order to aid in my issues I ended up with a fistula post op before (in 07 and had yet to go back on humira waiting for an infected surgical scar to heal) again my CRP was high on every other week after fixing the fisutla so they decided to put me back on the weekly dose.
On Remicade I would have to take the day off of work that I had the infusion for feeling ill no fevers tho as stated above but with my reactions to it I couldnt I found the longer I was on remicade the higher dose they needed to give me and the more often to the point it was wearing at 4 weeks but could only get it every 6 weeks.

As far as being sick I find when I had colds while on remicade it ALWAYS became a sinus infection and or pneumonia on humira I tend to just have to miss 1 week and I am ok by the followign and it doesnt get as sever as it had while on Remicade.

open wounds I leave that up to my doc...with the Fistula it was ok but when I had an infected incision I wasnt allowed to use it...always leave that up to your MD as well as the being sick...there are times my docs have said it is ok to use it when I have a cold...they even see me in the office and I use it and last time i did that a few days later I got Strep...so i leave that to my discretion now a days.

Any other questions feel free to ask but those were my experiences hope it helped
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
 
 
 

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