O
ozguts
Guest
Okay just wondering which one (Remicade or Humira) do you find most effective and with least side-effects? Or neither if you've tried them?
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butt-eze
Superstar
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I haven't voted...I tried Remicade and felt it worked very well for me. However, I may have had a near fatal reaction to it (that is one theory my doctors have). So, I discontinued.
I am now on Humira and can't tell if it helps. My main symptom is joint pain and that comes and goes. So, I can't tell if the Humira is helping or if I just have better days than others.
I am now on Humira and can't tell if it helps. My main symptom is joint pain and that comes and goes. So, I can't tell if the Humira is helping or if I just have better days than others.
My Butt Hurts
Squeals-a-lot!
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I haven't tried Remicade (yet).
Humira put me into a great remission with no side effects at all, but it only lasted 4 months, and now it is wearing off - not working as well as it was.
Humira put me into a great remission with no side effects at all, but it only lasted 4 months, and now it is wearing off - not working as well as it was.
O
ozguts
Guest
Hmmmm neither sound terribly promising in the long term! I probably wouldn't be classed in the 'severe' category, so maybe it would work for a moderate? Or maybe I'm just a wishful thinker 
I don't like the reports of dangerous reactions though!
I don't like the reports of dangerous reactions though!
O
ozguts
Guest
Like a cure!!!!!
O
ozguts
Guest
Being cynical...yes I agree with you. Unfortunately. Still we keep hope anyway...
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It seems to me, instead of giving hordes of donations and government funds to these companies to pay for their research we should be giving all that money to an objective governmental or even international body to do pharmaceutical research that would release the drug formulas for manufacture/sale as generics from the beginning.
But nah, I'm crazy. It's probably better to let private companies use free money to research drugs that work to their profit advantage so that they can be given government-enforced monopolies on products and ensure that there's no competition.
ika:
But nah, I'm crazy. It's probably better to let private companies use free money to research drugs that work to their profit advantage so that they can be given government-enforced monopolies on products and ensure that there's no competition.
ika:
O
ozguts
Guest
Or they could give money to independent researchers with no pharmaceutical affiliation! (Do they exist?)
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Not had remicade but humira has kept me sane for the last 2 years!
Just finished my loading doses of Remi and
waiting with my fingers crossed...
Plan B will be Humi
My brother has been on Remi for 8+ yrs for his Crohns,
and estimates a total of 2-3 months of flareup within that time.
He says it has been a miracle for him, so far.
I remain hopeful for a better tomorrow.
waiting with my fingers crossed...
Plan B will be Humi
My brother has been on Remi for 8+ yrs for his Crohns,
and estimates a total of 2-3 months of flareup within that time.
He says it has been a miracle for him, so far.
I remain hopeful for a better tomorrow.
I was on Humira for alittle while and I did not feel much better so they switched me to Remicade. Again, not seeing much of a difference. Thought it was because I had alot of issues going on, but had surgery and still don't see where the Remicade is helping me. I still get flares pretty often, bathroom visits quite often, tummy pains..the list goes on LOL
Shanan
Shanan
You could try Cimzia. In reality, I have gone through Remicade, Humira and am now on Cimzia. I don't see any difference in the severity of my symptoms between Cimzia and Remicade. Remicade/Cimzia does seem to help, though. However, I still have a lot of diarrhea and bleeding, etc. using either one. I also take Azathioprine and Apriso. Apriso seems to help the most - I think. Hard to tell with so many medications at once.
That's my experience . . . Good luck in finding something that will work! C-
That's my experience . . . Good luck in finding something that will work! C-
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So, it's been over a year since this post was active. I'm trying to determine which biologic to choose.
I was on Remicade back in 2004, but may have developed a reaction because of it, although, it was never determined if in fact that Remicade was responsible. I had itchy spells like crazy after my 2nd dose. The doc said he's never had anyone have that kind of a reaction, but wanted me off of it just the same. Anyway, I thought that I wouldn't be able to take Remicade again once you go off, I may have thought wrong according to my doc. I thought the Humira would be the better choice as it's made with a human protein, as Remicade is made with mouse protein. Any thoughts?
Also, I've just received an info packet about Cimzia - it's the same biologic family, but seems VERY expensive. I'm trying to figure out what's so different about this new biologic other than the cost I would assume. Anyone??
I was on Remicade back in 2004, but may have developed a reaction because of it, although, it was never determined if in fact that Remicade was responsible. I had itchy spells like crazy after my 2nd dose. The doc said he's never had anyone have that kind of a reaction, but wanted me off of it just the same. Anyway, I thought that I wouldn't be able to take Remicade again once you go off, I may have thought wrong according to my doc. I thought the Humira would be the better choice as it's made with a human protein, as Remicade is made with mouse protein. Any thoughts?
Also, I've just received an info packet about Cimzia - it's the same biologic family, but seems VERY expensive. I'm trying to figure out what's so different about this new biologic other than the cost I would assume. Anyone??
Remicade worked wonderfully for me for 5 or so years, then stopped it and flared. Went back on it but it never worked again, even after increasing the dose and frequency. Been on Humira since September, 8 months now, and still not working. Most likely stopping it after this round of steroids.
So Remicade at least worked for me for a while, whereas Humira never worked. No side effects from either though
So Remicade at least worked for me for a while, whereas Humira never worked. No side effects from either though
Let's see...
1984 - Diagnosed with UC; confirmed up until
2004 - when new blood work up suggested it was likely Crohn's.
2000 - Full colectomy with j-pouch
2007 - Started Remicade - lowest dosage, 8 week intervals
My life has turned around since the full dosing was complete. In complete remission "A poster child for Remicade" Not a single flare-up, no major reactions, I'm able to eat, sleep, travel and live my life again.
Had a recent bout of "Fever of Unknown Origin" (no diagnosis and full recovery) and more annoyingly Chillblains - broken blood vessels in the extremities. Doc is concerned these might be reactions to the Remicade and is discussing the possibility of switching to Humira.
I hated the idea of going onto Remicade in the first place, but given how well I've done on it, I'm now resisting the idea of switching.
We'll see, eh?
1984 - Diagnosed with UC; confirmed up until
2004 - when new blood work up suggested it was likely Crohn's.
2000 - Full colectomy with j-pouch
2007 - Started Remicade - lowest dosage, 8 week intervals
My life has turned around since the full dosing was complete. In complete remission "A poster child for Remicade" Not a single flare-up, no major reactions, I'm able to eat, sleep, travel and live my life again.
Had a recent bout of "Fever of Unknown Origin" (no diagnosis and full recovery) and more annoyingly Chillblains - broken blood vessels in the extremities. Doc is concerned these might be reactions to the Remicade and is discussing the possibility of switching to Humira.
I hated the idea of going onto Remicade in the first place, but given how well I've done on it, I'm now resisting the idea of switching.
We'll see, eh?
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- Mar 19, 2017
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Hi leofrish
My daughter has been on remicade for 2 years now and recently started with what they think is Chillblains on her fingers and toes and I am concerned it is a reaction to remicade. Did your issue ever get resolved or properly diagnosed?
My daughter has been on remicade for 2 years now and recently started with what they think is Chillblains on her fingers and toes and I am concerned it is a reaction to remicade. Did your issue ever get resolved or properly diagnosed?
Hey Kristysulin,
So, the FUO (Fever of Unknown Origin) still comes back about 1 week before my infusion, with no other diagnosis, after several MRIs/Cat-scans, lung x-rays, blood workups beyond belief. Thankfully they all came back negative.
Which leads my doc and I to believe that my immune system is kicking up a little sooner than the dosage timeframe. At maximum dose, and minimum refresh/infusion weeks, so that's that. As he says: "we still don't understand how Remicade is metabolized..." Shrug.
Re: Chillblains - yeah, so that condition has settled down considerably since it first appeared in 2014, but living in the Pacific Northwest (cold wet winters) it's an environment ripe for such a condition. This past Winter was particularly nasty (for this part of the world), and so I had three very slight bouts of what now feels like Renaud's - discoloration and poor circulation to the fingertips - that lasted for an hour or so. Thankfully the Chillblains stopped in 2014/early 2015 and haven't had them again.
Who knows with this stuff. As long as it's working, my doc and I are staying the course.
So, the FUO (Fever of Unknown Origin) still comes back about 1 week before my infusion, with no other diagnosis, after several MRIs/Cat-scans, lung x-rays, blood workups beyond belief. Thankfully they all came back negative.
Which leads my doc and I to believe that my immune system is kicking up a little sooner than the dosage timeframe. At maximum dose, and minimum refresh/infusion weeks, so that's that. As he says: "we still don't understand how Remicade is metabolized..." Shrug.
Re: Chillblains - yeah, so that condition has settled down considerably since it first appeared in 2014, but living in the Pacific Northwest (cold wet winters) it's an environment ripe for such a condition. This past Winter was particularly nasty (for this part of the world), and so I had three very slight bouts of what now feels like Renaud's - discoloration and poor circulation to the fingertips - that lasted for an hour or so. Thankfully the Chillblains stopped in 2014/early 2015 and haven't had them again.
Who knows with this stuff. As long as it's working, my doc and I are staying the course.
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Neither will be used in this house, there are many settlements and lawsuits and why it is common on medication to see this. These two medication are being alleged at some serious stuff including death. We are taking a Natural approach after 10 years of trying meds that stop working we are going natural and giving this a try.
Hi All,
An update to my earlier post on this thread in 2011.
I've been on weekly Humira since June 2011. This along with the fistulotomy in 2012 have kept me well. Recent tests show that there are no antibodies to the Humira and level in the level of the drug in the blood is also good. The advice of my Gastroenterologist is to carry on with Humira as long as it works.
I have excellent clinical surveillance by way of full bloods every 3 months and colonoscopies and MRI scans every 18 to 24 months. I have some other minor health issues, but only anal fissures really connect with the Crohn's. There is nothing that can be specifically pinned on Humira. I'm now in my early 50's and the body starts to show signs of wear and tear.
I'm grateful for the improved quality of life that I have.
I wish you all well.
Mark
An update to my earlier post on this thread in 2011.
I've been on weekly Humira since June 2011. This along with the fistulotomy in 2012 have kept me well. Recent tests show that there are no antibodies to the Humira and level in the level of the drug in the blood is also good. The advice of my Gastroenterologist is to carry on with Humira as long as it works.
I have excellent clinical surveillance by way of full bloods every 3 months and colonoscopies and MRI scans every 18 to 24 months. I have some other minor health issues, but only anal fissures really connect with the Crohn's. There is nothing that can be specifically pinned on Humira. I'm now in my early 50's and the body starts to show signs of wear and tear.
I'm grateful for the improved quality of life that I have.
I wish you all well.
Mark
- Joined
- Nov 29, 2013
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- 241
Mark63 and others who've had success with either of these drugs,
Do you have any dietary restrictions or take other medications or supplements in addition to the remicade or humira?
Staying on it for many years, have you stayed in remission that entire time or have you had flares? Do you still have any symptoms once in a while or in reaction to certain foods or stress while still officially being in remission?
My doctor is encouraging me to begin biologics, and I am very interested in folks' experiences with them.
Also I think people tend to post more when they are having trouble than when they are having success (Guilty), so I really appreciate the post above checking back in! Glad you're doing well.
Do you have any dietary restrictions or take other medications or supplements in addition to the remicade or humira?
Staying on it for many years, have you stayed in remission that entire time or have you had flares? Do you still have any symptoms once in a while or in reaction to certain foods or stress while still officially being in remission?
My doctor is encouraging me to begin biologics, and I am very interested in folks' experiences with them.
Also I think people tend to post more when they are having trouble than when they are having success (Guilty), so I really appreciate the post above checking back in! Glad you're doing well.
Hi Magnolia24,
In answer to your questions...
My Crohn's has been limited to my peri-anal area for the last 10+ years. I'm luck in that I eat and drink what I want. Diet seem to have little impact. I take Calcium + vitamin D and a 1000mg of Cod Liver Oil every morning. These are prescribed by myself!
I had a long period of remission, probably ~15 years between my initial run-in with Crohn's and the onset/flare of the peri-anal problems 10 years ago. I was not taking any medication during those 15 years and followed a normal, reasonably healthy diet.
Stress is just something that you have to deal with as and when. I couldn't say it has ever made the Crohn's worse. Having to deal with Crohn's symptoms/treatment can certainly be stressful. If you find that stress is a factor for you, then you should seek additional help for that.
Humira seems to work for me. Infliximab/Remicade worked well initially, but the treatment was repeatedly stopped and re-started due to either funding issues or infections. Under those circumstances the body seems to build-up antibodies more quickly. In the end I had to stop as I developed worsening allergic reactions after each dose.
Biologics are an excellent treatment option for a lot of people. Bear in mind that the same drugs are used to treat a number of different medical conditions E.G. Rheumatoid Arthritis, so we are not alone here. It's good to be informed about the pros and cons and personal experiences through sites like this. At the end of the day, are they right for you? is a question for you and your doctors to discuss. If you are not comfortable with their use after that discussion, then you shouldn't be pressured to take them.
Regards,
Mark
In answer to your questions...
My Crohn's has been limited to my peri-anal area for the last 10+ years. I'm luck in that I eat and drink what I want. Diet seem to have little impact. I take Calcium + vitamin D and a 1000mg of Cod Liver Oil every morning. These are prescribed by myself!
I had a long period of remission, probably ~15 years between my initial run-in with Crohn's and the onset/flare of the peri-anal problems 10 years ago. I was not taking any medication during those 15 years and followed a normal, reasonably healthy diet.
Stress is just something that you have to deal with as and when. I couldn't say it has ever made the Crohn's worse. Having to deal with Crohn's symptoms/treatment can certainly be stressful. If you find that stress is a factor for you, then you should seek additional help for that.
Humira seems to work for me. Infliximab/Remicade worked well initially, but the treatment was repeatedly stopped and re-started due to either funding issues or infections. Under those circumstances the body seems to build-up antibodies more quickly. In the end I had to stop as I developed worsening allergic reactions after each dose.
Biologics are an excellent treatment option for a lot of people. Bear in mind that the same drugs are used to treat a number of different medical conditions E.G. Rheumatoid Arthritis, so we are not alone here. It's good to be informed about the pros and cons and personal experiences through sites like this. At the end of the day, are they right for you? is a question for you and your doctors to discuss. If you are not comfortable with their use after that discussion, then you shouldn't be pressured to take them.
Regards,
Mark
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Am I understanding correctly that your period of remission was before you started humira, so you have not achieved remission while on humira? What is your definition of it working for you? I guess that is really what I am trying to ask with my questions above about remission and experiencing any symptoms. I don't mean that with any judgment or doubt that it is working...It just seems like people can mean different things when they say that.
I consider my self to have been in remission since the end of 2012. I believe that my largely symptom free situation is the result of surgery and the combination of the continued use of Humira.
"Flares" mean very different things to different people. The initial inflammatory response may be over relatively quickly if properly treated, but in my case I was left with significant collateral damage that took years to sort out!
"Flares" mean very different things to different people. The initial inflammatory response may be over relatively quickly if properly treated, but in my case I was left with significant collateral damage that took years to sort out!
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Fromm what I have read these two drugs are more of a last resort and often used after surgeries. For those that are using this harsh drug that is know to stop working in many cases after time. What is the next step when these stop working as it seems a very high percentage eventually find it stops working.
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I don't know. I have a kid who has been on Humira since age 4. Two and a half years. I honestly thought she would never even get to go to kindergarten.She was too sick to play. I think Humira has made the difference between life on the couch, and living like a kid should. No side effects,yet. Safer than Imuran, in our experience.
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It does seem doesn't it that Crohns is a strange bird and many medications are harmful and ineffective in some, dangerous in others and thankfully in your case with your child is working great.
