Humira or Remicade? Help!

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caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/22/2009 3:30 PM (GMT -7)   
Hi everybody.

I've had Crohn's for 5 years now. I've been taking Imuran for 2.5 years now, and Metronidazole for 3 months now.

My doctor and I have talked about switching to Humira or Remicade. It's up to me to decide which one it's going to be. I know a lot about both medicines, I've been reading about them and talking to my doctor about it so many times since this is not the first time we were thinking about switching to one of them.

I just don't know which one to take and I'd really like to hear about your experiences with one or the other medicine, or if you've been on both.

Have you had any side-effects, if so which ones? Supposedly Humira has less side-effects (could be debated of course). What about the Humira pen? I read that it doesn't have to be given with a pen but with a syringe too. Which one hurts more? Does it hurt the whole 10s? What happens later? Has anyone had any side-effects on their belly? Does the pain go away soon after the injection? How do you feel physically the day you inject it? Do you feel exhausted? Can you go to work normally? How do you feel the next day? How has it helped you or it didn't help you?

What about remicade? Have you had any side-effects during the infusion? How do you feel during and after receiving it?

I have so many questions...and I'm really confused.

I'd be grateful for any type of information about it from you!

Thank you in advance!
21 yr. old with crohn colitis. First symptoms in June 2003, diagnosed in March 2004. Been in remission on mesalazine till June 2006 (actually till January) and then on steroids and Imuran. Currently taking Imuran and metronidazole (was taking ciprofloxacine for a month and then switched to metronidazole). No surgeries so far.

Post Edited (caroline_r) : 1/24/2009 11:04:03 AM (GMT-7)


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/22/2009 4:10 PM (GMT -7)   
Remicade was a life-saver for me, and also I think it was administered in a way that I could handle at the time. I was very ill when I started it, but being in the infusion room with a nurse right there, the IV benadryl, the ability to ask any and all questions as we went... I'm a worry-wort, and the inconvenience of driving to the infusion location was far out-weighed for me by the piece of mind I received knowing that I was in good hands, surrounded by "professionals". I became so comfortable with the routine that I used to actually look forward to it. Obviously this is just me, and some people do horrible in the sterile medical environments and would be stressed and annoyed. There were a few times where it was hard to get the IV started or something, but all in all, it was a smooth routine for me. I would be a little groggy the day of the infusion from the benadryl, but I always returned to work or drove myself home so it wasn't ever bad. Sometimes the next day wold be a little groggy too, but I found that maintaining adequate hydration is KEY to not feeling waterlogged after a Remi treatment.

When the Remicade stopped working and I had to start Humira it was after some very traumatizing stuff and a trip to the hospital. Because of that, I think I didn't give Humira the fair chance that it probably deserved. I made it through the loading doses, booster dose, and first initial bi-weekly dose I think, but that's it. I, personally, could not handle administering the shots to myself. This left my poor hubby to do it. He did a very good job, but, in my humble opinion, those Humira pens hurt like the dickens! It was a quick, burning pain, but it also lingered for me to where I could not even really handle to wear pants for the rest of the night because the injection sites on my thigh were just so sensitive - like a wicked sunburn almost. I know everyone has different reactions to the humira pens though... some say it doesn't hurt at all. I don't know why it hurts some more than others, but I do believe it is more than a "macho" thing. I would get random fevers after the shot, and feel flu-like out of the blue. After those initial doses I didn't notice enough improvement to put myself and my poor hubby through my Humira tantrums. I used to be nervous the entire day waiting for my husband to get home, knowing that he had to poke me with that stuff. I called it my "liquid-burning-fire-magma-juice-from-hel*". A bit extreme, I know, but this is just me. I hated Humira.

Hopefully someone will come along and give you the opposite side of the coin. Many on here had horrible reactions to Remicade and love Humira. I'm getting ready to start Cimzia now.

I hope you find the info and answers you seek! Good luck with everything!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/22/2009 4:46 PM (GMT -7)   
patientspiders said...
Remicade was a life-saver for me, and also I think it was administered in a way that I could handle at the time. I was very ill when I started it, but being in the infusion room with a nurse right there, the IV benadryl, the ability to ask any and all questions as we went... I'm a worry-wort, and the inconvenience of driving to the infusion location was far out-weighed for me by the piece of mind I received knowing that I was in good hands, surrounded by "professionals". I became so comfortable with the routine that I used to actually look forward to it. Obviously this is just me, and some people do horrible in the sterile medical environments and would be stressed and annoyed. There were a few times where it was hard to get the IV started or something, but all in all, it was a smooth routine for me. I would be a little groggy the day of the infusion from the benadryl, but I always returned to work or drove myself home so it wasn't ever bad. Sometimes the next day wold be a little groggy too, but I found that maintaining adequate hydration is KEY to not feeling waterlogged after a Remi treatment.

When the Remicade stopped working and I had to start Humira it was after some very traumatizing stuff and a trip to the hospital. Because of that, I think I didn't give Humira the fair chance that it probably deserved. I made it through the loading doses, booster dose, and first initial bi-weekly dose I think, but that's it. I, personally, could not handle administering the shots to myself. This left my poor hubby to do it. He did a very good job, but, in my humble opinion, those Humira pens hurt like the dickens! It was a quick, burning pain, but it also lingered for me to where I could not even really handle to wear pants for the rest of the night because the injection sites on my thigh were just so sensitive - like a wicked sunburn almost. I know everyone has different reactions to the humira pens though... some say it doesn't hurt at all. I don't know why it hurts some more than others, but I do believe it is more than a "macho" thing. I would get random fevers after the shot, and feel flu-like out of the blue. After those initial doses I didn't notice enough improvement to put myself and my poor hubby through my Humira tantrums. I used to be nervous the entire day waiting for my husband to get home, knowing that he had to poke me with that stuff. I called it my "liquid-burning-fire-magma-juice-from-hel*". A bit extreme, I know, but this is just me. I hated Humira.

Hopefully someone will come along and give you the opposite side of the coin. Many on here had horrible reactions to Remicade and love Humira. I'm getting ready to start Cimzia now.

I hope you find the info and answers you seek! Good luck with everything!


Wow....thank you so much for writing such a long answer! It's definitely helpful! OK, so I have a few questions.

What do you mean by adequate hydration? How long have you been on Remicade? Were you on any of the immunosuppressive medicines at the time too?

about Humira...the good thing is that in my country (or to be precise in my hospital) you don't have to do it on your own at home, they give it to you. At least for now. I can imagine that it hurt like hel*! It sure looks like it on that video you can find online.

Thank you so so much! I'm really sorry that Humira didn't work for you...I hope Cimzia will!

Good luck to you too!
21 yr. old with crohn colitis. First symptoms in June 2003, diagnosed in March 2004. Been in remission on mesalazine till June 2006 (actually till January) and then on steroids and Imuran. Currently taking Imuran and metronidazole (was taking ciprofloxacine for a month and then switched to metronidazole). No surgeries so far.


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/22/2009 5:23 PM (GMT -7)   
As far as hydration... I'm usually terrible about drinking enough water. It made my veins kinda hard to stick sometimes, and also my kidneys (middle back) would hurt a bit after an infusion. Nothing serious, just mildly annoying. I started drinking 64 oz of gatorade the day before the infusion and the day of, and it almost completely eliminated any problems. My veins were easier to stick, and my kidneys wouldn't hurt. I guess the extra fluid helps your body flush through the medicine more easily...?

I was on remicade from December of '05 through June of '08. I didn't react well to any other medications (ie Purinethol, 6mp's, 5asa's, etc.), so I had no other maintenance meds. I was a straight up Remicade poster child... I ate whatever I wanted and managed to forget most of the time that I had crohn's. I did get a case of strep throat that really knocked me on my butt, but other than that I never noticed getting more sick than anyone else around the office.

That's awesome that you can have a nurse give you the Humira. I might not have hated it quite so much then! Let me know if any other questions pop up that I could help with!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
'cade stopped working in '08 and I've been scrambling ever since.
Noticing a real difference with a Gluten-Free diet.
Currently on:
Probiotics, Digestive Enzymes, and Prednisone
Soon to Start:
Cimzia, acacia fiber supplement, and L-Glutamine


caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/23/2009 6:10 AM (GMT -7)   
Thank you so much! You're answer has been very helpful! Thank you!!
21 yr. old with crohn colitis. First symptoms in June 2003, diagnosed in March 2004. Been in remission on mesalazine till June 2006 (actually till January) and then on steroids and Imuran. Currently taking Imuran and metronidazole (was taking ciprofloxacine for a month and then switched to metronidazole). No surgeries so far.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/23/2009 4:42 PM (GMT -7)   
I've only been(and am still on) humira so I can't really help you with the remicade. The side effects I've gotten are fatigue for a few days after the injection, and then I get a bad headache every now and then. It's enough pressure on the left side to make my eye water. Other than that nothing has hit me so far. I still haven't become ill or gotten any infections. It seems to work pretty well, but it took a few months for me to really see any difference. It's been a pretty gradual healing process needless to say.

The pens do hurt, but they hurt a lot worse at the beginning. The more you do it the less you worry about it. I think the hardest part about giving the injections is suppressing fear of the pain. The fear is usually more painful than the pen itself actually. It's really not so bad after a while though.

Let us know which one you choose and how it goes! Here is to either one working wonders :)
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 1/23/2009 5:01 PM (GMT -7)   
i am on Remicade i could choose and i chose Remicade, i wanted Remicade because i have a panic disorder and i feel more relaxed being in a hospital than giving the shots to myself like with Humira.

I only had two infusions of remicade so far and it went really good, i ask for something to calm me down before the infusion so i don't get a panic attack and mix that with an allergic reaction :) The last time i was so relaxed that i slept the whole time :)

I get a mild headache and some eye problems but nothing much. it has not started working for me as much as i had hoped to but lets give it time :)

i will switch to humira if remicade will not work.

Good luck choosing ;)
24 year old female

Diagonsed with Crohns disease in December 2008..

Medication - Asacol, Remicade, Entocort


Jessica28
Regular Member


Date Joined Jan 2009
Total Posts : 21
   Posted 1/23/2009 9:46 PM (GMT -7)   
hi there. i have been on humira for about six months now. i've never been on remicade so can't help there.
it's scary using the pens, but i feel like it is a lot better than having an IV every few months. Needles are needles, you know?
I make my husband do it so I can shut my eyes but there have been a few times where I have had to do it to myself and I've gotten through it (it just took me about thirty minutes to do it!) When I did it in my stomach I would have a big welt for a day or two but now that I do it in my thigh, it only bothers me for a little while (I usually do it right before bed).
I sometimes worry I shouldn't be on such a high dose drug since I have only had two attacks since being diagnosed in 2007 but I sure don't want another one and this was the doc's advice. It's scary not knowing what is best. My doctor chose Humira for me so I wouldn't have to drive an hour and waste a day of work. By the way, I haven't gotten sick yet or missed a day of work because of the Humira.
Good luck!!

CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 1/24/2009 9:47 AM (GMT -7)   
Hi Caroline! There are 4 biologics: Tysabri, Remicade, Humira, and Cimzia. Of those 4, the last three are anti-tnfs.

Remicade: given at the dr. office/clinic through an IV, can take up to four hours per infusion, usually every 6-8 weeks. It tends to work quickly, but may be discontinued because it stops working, person has bad reaction (possible anaphylactic shock).

Humira: in the US it is given at home by yourself. can be given through syringe or auto-injector every 1-2 weeks. It also tends to work quickly, but may be discontinued because of the reasons above, stinging, burning, injection site reactions.

Cimzia: given by nurse in your home or in dr. office, two injections at a time once every four weeks. Also tends to work quickly. Not many people report reactions, but like the others (and all other meds for CD) it can stop working.

There are risks and benefits to each of these. For the most part, their efficacy is the same. The difference is in the person. Each person's Cd is different, therefore, a med that works for one person may not work for another. Think about your lifesyle and work with your dr. to decide which one will be best for you.

Keep us posted!

caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/24/2009 11:03 AM (GMT -7)   
Thank you all so much for your replies! The thing is that I would probably choose Humira over Remicade given the fact that Humira is human, but I'm having a problem with that pen sad I'm really afraid of it. The fact of having something given into my stomach is just shakehead it really scares the hel* out of me. Especially since I know myself...if it hurts a lot the first time I get it, I won't be able to stop thinking about it and counting the days till the next shot. I know it's supposed to be more practical since it's just 10 seconds, but I don't know...if it's going to be so stressful for me that it might not even work for me. I think it's really important not to panic in order for it to work. I don't know if you get what I mean.

But then again if Remicade doesn't help Humira will be next on the list...if not now, somewhere down the road with this disease it'll happen. I just don't know if I'm ready for it yet. I think I'm going to choose Remicade. I really really don't know and I have about 2.5 weeks to decide.

I'll keep you all posted!

P.S. Any piece of advice on how to beat this Humira fear?
21 yr. old with crohn colitis. First symptoms in June 2003, diagnosed in March 2004. Been in remission on mesalazine till June 2006 (actually till January) and then on steroids and Imuran. Currently taking Imuran and metronidazole (was taking ciprofloxacine for a month and then switched to metronidazole). No surgeries so far.


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/24/2009 11:31 AM (GMT -7)   
I know I mentioned it already, but I just want you to know that I totally understand the fear of the shot with the Humira. Being responsible for setting the "where" and "when" was one of the worst parts. I chickened out so bad I postponed one of the shots for over a week... I would just WIG OUT every time I got the dang thing out of the fridge.

With the Remicade - it just gave me an excuse to leave work an hour early and relax... knowing that I was doing something good and was in good hands. It also kind of seems like the whole dog and pony show of going to the hospital, as smooth and easy as it was, somehow justified how scary all this crap really is while making me feel better about it at the same time. Like - yes, I have a medical problem, I am getting it treated by professionals, it is under control. Verses - I have this weird disease that no one has ever heard of and I have to have not only the sanity to get through this disease, but also enough sanity to be my own nurse and motivator for EVERYTHING and... well, you probably get what I mean. I guess I just like IV benadryl and a warm blanket now and then.

I completely agree with you about "not panicking in order for it to work" too... if you're scared to death of it, how receptive is your body going to be? I don't know - maybe that sounds "froofy" to some people, but based on my experience, you have to have hope AND comfort with your treatments - otherwise you're just stressing yourself out and making everything worse.

You've still got time to decide... wishing you the best in the mean time.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
'cade stopped working in '08 and I've been scrambling ever since.
Noticing a real difference with a Gluten-Free diet.
Currently on:
Probiotics, Digestive Enzymes, and Prednisone
Soon to Start:
Cimzia, acacia fiber supplement, and L-Glutamine


caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/24/2009 12:24 PM (GMT -7)   
patientspiders said...
I know I mentioned it already, but I just want you to know that I totally understand the fear of the shot with the Humira. Being responsible for setting the "where" and "when" was one of the worst parts. I chickened out so bad I postponed one of the shots for over a week... I would just WIG OUT every time I got the dang thing out of the fridge.

With the Remicade - it just gave me an excuse to leave work an hour early and relax... knowing that I was doing something good and was in good hands. It also kind of seems like the whole dog and pony show of going to the hospital, as smooth and easy as it was, somehow justified how scary all this crap really is while making me feel better about it at the same time. Like - yes, I have a medical problem, I am getting it treated by professionals, it is under control. Verses - I have this weird disease that no one has ever heard of and I have to have not only the sanity to get through this disease, but also enough sanity to be my own nurse and motivator for EVERYTHING and... well, you probably get what I mean. I guess I just like IV benadryl and a warm blanket now and then.

I completely agree with you about "not panicking in order for it to work" too... if you're scared to death of it, how receptive is your body going to be? I don't know - maybe that sounds "froofy" to some people, but based on my experience, you have to have hope AND comfort with your treatments - otherwise you're just stressing yourself out and making everything worse.

You've still got time to decide... wishing you the best in the mean time.


Exactly! We're totally on the same page about this! You just have to be ok and comfortable with it. This is such an ugly disease, it's really hard to deal with it on it's own, but you also have all these painful tests and then the therapy itself...urrghh. All in all I'm scared as hel*!
21 yr. old with crohn colitis. First symptoms in June 2003, diagnosed in March 2004. Been in remission on mesalazine till June 2006 (actually till January) and then on steroids and Imuran. Currently taking Imuran and metronidazole (was taking ciprofloxacine for a month and then switched to metronidazole). No surgeries so far.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/24/2009 1:42 PM (GMT -7)   
I used to delay it for as long as possible as well, but you really do start to get used to it. And taking it in the leg always helped me. The doctors said I couldn't take it in the stomach because there wasn't enough fat heh...but I guess that's to be expected with D.

It does burn a lot sometimes, but after a while it really isn't so bad. And the pain from the pen far outweighs the pain from a bad flare :)
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 1/24/2009 2:26 PM (GMT -7)   
I've been on Humira since October. I chose it for the convenience, I didn't want to take a day off of work every 6 or 8 weeks for the Remicade. I was a total basket case going in for the loading doses, so scared of any effect and the pain I would feel. There was burning, but it was quite bearable, and I was fine. I give it to myself, and I really don't have any problems. I don't use my thighs, I get welts that stay for days and it burns more. Sometimes I don't have any burning on my stomach, and when I do, it's gone within a few minutes. It hurts alot less than a bee sting for me! I use the syringes, that way I can control how quickly I put the medicine in. When it starts to burn, I back off a couple of seconds, then start again. Maybe 45 seconds total for an injection. I take the meds out 30 minutes before I take it, and I take 2 bendadryl then. The bendadryl is because I get really shaky muscles, legs and arms about an hour and a half after the humira. Doc said to take it, and it seems to help, but it puts me to sleep for the night so maybe I just don't notice the shakiness. I take the last bit of chill off the meds by holding the syringe in my hands for a minute or two before injecting it. At first I was exhausted for days after taking the humira, but now its only for the next day. This last time I planned to do absolutely nothing all day, just watched movies with my kids, took a nap, and did a load of laundry. I wasn't completely wiped out so maybe it helped to not try to do much. I was on prednisone this time too, so that could have had something to do with it. The big problem I was having with humira was the joint pain. It came on after I started Humira, so my doc thinks it from the meds, but this last time I didn't have any. So don't know if I'm getting used to the humira of the prednisone affecting me. I just wanted to let you know someone who really isn't having an issue with humira injections, but I'm not sure it's working. My doc is talking surgery again, after this pred hopefully brings down some inflammation, and he said that he still wants me to stay on Humira because it may be working, just enough to slow disease progression down. It's scary putting this stuff in my body, but its scary thinking of not putting any brakes on the disease at all. Good luck with your decision!
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. <S>150 mg Imuran</S>, bentyl, entocort, vicodin as needed, Humira, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/25/2009 6:44 AM (GMT -7)   
kimberlayn said...
I've been on Humira since October. I chose it for the convenience, I didn't want to take a day off of work every 6 or 8 weeks for the Remicade. I was a total basket case going in for the loading doses, so scared of any effect and the pain I would feel. There was burning, but it was quite bearable, and I was fine. I give it to myself, and I really don't have any problems. I don't use my thighs, I get welts that stay for days and it burns more. Sometimes I don't have any burning on my stomach, and when I do, it's gone within a few minutes. It hurts alot less than a bee sting for me! I use the syringes, that way I can control how quickly I put the medicine in. When it starts to burn, I back off a couple of seconds, then start again. Maybe 45 seconds total for an injection. I take the meds out 30 minutes before I take it, and I take 2 bendadryl then. The bendadryl is because I get really shaky muscles, legs and arms about an hour and a half after the humira. Doc said to take it, and it seems to help, but it puts me to sleep for the night so maybe I just don't notice the shakiness. I take the last bit of chill off the meds by holding the syringe in my hands for a minute or two before injecting it. At first I was exhausted for days after taking the humira, but now its only for the next day. This last time I planned to do absolutely nothing all day, just watched movies with my kids, took a nap, and did a load of laundry. I wasn't completely wiped out so maybe it helped to not try to do much. I was on prednisone this time too, so that could have had something to do with it. The big problem I was having with humira was the joint pain. It came on after I started Humira, so my doc thinks it from the meds, but this last time I didn't have any. So don't know if I'm getting used to the humira of the prednisone affecting me. I just wanted to let you know someone who really isn't having an issue with humira injections, but I'm not sure it's working. My doc is talking surgery again, after this pred hopefully brings down some inflammation, and he said that he still wants me to stay on Humira because it may be working, just enough to slow disease progression down. It's scary putting this stuff in my body, but its scary thinking of not putting any brakes on the disease at all. Good luck with your decision!


Thank you for your answer! I do agree that it's more scary not to put any breaks on the disease at all. I hate it that I have to be so scared of getting it in my stomach. I wanna surpass this, just really really don't know how :O

I'm sorry Humira isn't working for you! I hope you find something that will work .
21 yr. old with crohn colitis. First symptoms in June 2003, diagnosed in March 2004. Been in remission on mesalazine till June 2006 (actually till January) and then on steroids and Imuran. Currently taking Imuran and metronidazole (was taking ciprofloxacine for a month and then switched to metronidazole). No surgeries so far.


caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/25/2009 6:45 AM (GMT -7)   
LMills said...
I used to delay it for as long as possible as well, but you really do start to get used to it. And taking it in the leg always helped me. The doctors said I couldn't take it in the stomach because there wasn't enough fat heh...but I guess that's to be expected with D.

It does burn a lot sometimes, but after a while it really isn't so bad. And the pain from the pen far outweighs the pain from a bad flare :)


I agree with your last sentence... I really really wish I wasn't this scared :( thank you for writing me about your experience
21 yr. old with crohn colitis. First symptoms in June 2003, diagnosed in March 2004. Been in remission on mesalazine till June 2006 (actually till January) and then on steroids and Imuran. Currently taking Imuran and metronidazole (was taking ciprofloxacine for a month and then switched to metronidazole). No surgeries so far.


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 1/26/2009 2:02 PM (GMT -7)   
I've had 3 Remicade infusions so far. It's been working very well for me. I am allergic to SO many things, so I was really nervous. I use benadryl tablets before I go just in case. I had horrible inflammtion in my joints/arthritis and the Remicade has gotten rid of that for me (which I was so happy about, being that was so debilitating.) I'm eating again (gained back 21 pounds since November!) No stomach pains anymore. I have two weeks to go until my next one. Have a little more bleeding the last couple of days and feels like I may have a fistula or something going on down there. I had an open fistula that seems to be healing since going on the Remicade.

All in all, so far, so good. I was worried about side effects and resisted going on it for about 2 years. In retrospect, I wish I had gone on it sooner. I just hope it continues to work for me. Going back to the pain and misery I was in before is a scary thought now that I feel somewhat "normal."

Oh- the fluids thing. Remicade does seem to make me dehydrated the day of the infusion unless I really work to get fluids in me. Hasn't been a problem. No side effects from the infusions themselves, just a little groggy from the benadryl. I usually just take the day off so I can take it easy and not be rushing around trying to leave work early. I think that helps my mindset for the infusions.
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Remicade (First Infusion 11/3/08) yeah


Jessica28
Regular Member


Date Joined Jan 2009
Total Posts : 21
   Posted 1/26/2009 7:49 PM (GMT -7)   
Put ice on the part of your body you want to give yourself the injection - it helps numb it. I had the opposite problem as kimberlayn, the welts on my stomach stayed for days. My brother is a doctor and at first I freaked out about it, but he said as long as they went away in a day or two i was fine. They always did.
Think about your job when you are making this decision and how far away you are from your doctor's. I am a teacher and live an hour and a half away from my doctor so I couldn't stand to be away from my kids that often. But if you have a job where you just leave whenever, it might be more "relaxing" than having to give yourself a shot.
I'm actually getting ready to get my shot now. I still put it off as long as possible :)
Jessica
 
28 years old, diagnosed with Crohn's  in March, 2007.  Currently taking Humira 2 X month


betita82
New Member


Date Joined Jan 2009
Total Posts : 19
   Posted 1/26/2009 10:54 PM (GMT -7)   
I was on remicade from 02 - 07. It stopped working so well for me, so I switched to Humira. There was some recent stuff in the news about NOT wanting to be on anti-TNFs and imuran at the same time (too much suppression). I administer Humira to myself with the pens. I had thought that sticking myself in the stomach might puncture something, but I found that it hurt a lot more in the thigh than in the stomach. I too have little to grab in the stomach area, but I found that if I sit, there's that roll that forms on everyone and that works for me. Yes it stings and burns, and I do find that I feel much better if I can stick myself where the waist of my pants isn't rubbing against the injection site. Or, it makes a good excuse to wear comfy pants for the rest of the day. So far Humira seems to be working, but I'm going to try it once a week to see if it will kick my colon into remission. I had a flare up recently, a combo of catching the flu and the remicade not working so well, and while most of it has calmed down, I still have some "angry" parts.
Anywho, most doctors will offer to have a nurse give you the injections if you can't do it to yourself. I recommend trying it a few times though, it does eventually get easier. I've found that allowing the Humira to sit out for a half hour and rolling it in my hands to help warm it a bit makes it hurt a bit less too. Talk to your doc or nurse practitioner about it, they can give you tips too.

mickey138
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 1/26/2009 11:52 PM (GMT -7)   
Both Remicade and Humira are similar medications. They both do essentially the same thing. I was on Remicade for 8 years and it stopped working for me. I switched to low-dose naltrexone (4.5 mg) and it relieved my symptoms within three weeks. You might get ahead of the game by trying LDN. Although Remicade and Humira have strong black-box warnings, LDN has fewer side effects than aspirin and it costs a LOT LESS than than the expensive brand-name meds. Check out this link:

http://www.webspawner.com/users/ldnforcrohns/index.html

mimik81
Regular Member


Date Joined Jan 2008
Total Posts : 88
   Posted 1/27/2009 9:41 PM (GMT -7)   
Just be careful when you start the Humira. I started it about a year ago. It worked wonderfully until about June. I started having really bad joint pain, headaches, fatigue, pleurisy, and other symptoms. After two trips to the ER and several doctor visits, I was given an ANA test, and I got "drug-induced lupus". I have been off of it for Humira for at least 7 months, and I still have lupus symptoms. I don't know if it will ever go away.

I am not telling you not to take it because I know the drugs affect us all in different ways. However, just pay attention to how the medicine makes you feel and read up on the side effects. My experience what that the drug is not very common, and most of the doctors had no clue of the lupus-like reactions. I got very annoyed because I had researched that issue and told them about it from the very first time I saw a medical professional, yet none of them took me seriously.

I'm back on imuran now, and it's controlling the Crohn's, but like I said, I now have another autoimmune disease to live with. It may have nothing to do with the Humira, but I wasn't playing around with it, and I stopped it right away.

Good luck with your treatment.
Diagnosed with Crohn's for 13 Years
Currently on 75 mg Imuran

Tried prednisone, flagyl, pentasa, and Humira (developed drug-induced lupus and had to stop).


caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 1/29/2009 7:18 AM (GMT -7)   
mimik81 said...
Just be careful when you start the Humira. I started it about a year ago. It worked wonderfully until about June. I started having really bad joint pain, headaches, fatigue, pleurisy, and other symptoms. After two trips to the ER and several doctor visits, I was given an ANA test, and I got "drug-induced lupus". I have been off of it for Humira for at least 7 months, and I still have lupus symptoms. I don't know if it will ever go away.

I am not telling you not to take it because I know the drugs affect us all in different ways. However, just pay attention to how the medicine makes you feel and read up on the side effects. My experience what that the drug is not very common, and most of the doctors had no clue of the lupus-like reactions. I got very annoyed because I had researched that issue and told them about it from the very first time I saw a medical professional, yet none of them took me seriously.

I'm back on imuran now, and it's controlling the Crohn's, but like I said, I now have another autoimmune disease to live with. It may have nothing to do with the Humira, but I wasn't playing around with it, and I stopped it right away.

Good luck with your treatment.


I know that it can cause Lupus. The thing is that it can cause lupus-like syndrome but if you have a gene for Lupus (which can be easily checked) then on Humira or Remicade you do develop Lupus. Just like something has to trigger CD, something has to trigger Lupus...in your case it was Humiora that triggered it and it probably wouldn't have happened without Humira. And I'm really really sorry it happened to you sad and mad mad that none of your doctors take you seriously!!!!!!!!!!!! I hate that!! If they ever tell you to start taking Remicade or any other anti-TNF don't!! I don't know what to say but that this really really makes me very angry cry

Thank you so much for your answers! To all of you! It really means a lot to me! I still haven't made the decision...got 2 more weeks to go.
21 yr. old with crohn colitis. Diagnosed in March 2004. No surgeries so far.

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