I started my treatment in June 2010. I have little improvement at this point. In fact, I have more pain and discomfort if anything. I saw my GI today, and he is contacting a specialist to get me in and see if we can find something we're missing. Is this a typical trial and error time?? I'm so frustrated!
How long until you achieved remission?
- Thread starter aliciars
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Jan 30, 2010
- Messages
- 2,082
It just depends, some on your body, and some on the doctor. My first flare lasted 10 months; my doctore wasn't a GI and tried sulfasalazine without prednisone. If you have a particularly aggressive flare, it can take months to break it, with multiple drugs, etc. until you get the right treatment. Recently I had a flare that lasted a year, which was partly the doctor's fault, because he refused to give me Remicade and tried to have me stick it out with the pred and Pentasa.
Some doctors attack Crohn's aggressively with biologicals and immunosuppressants, and some prefer to save the big gun drugs for later, giving you the first line meds first and see how you respond to these.
Sometimes you can have an underlying infection or condition that aggrevates the flare; once these are treated the flare will stop. I know it's frustrating, but alot is trial and error, and also learning how your body and disease responds to treatment.
Hope this helps; don't let it go on too long, though, as this can cause problems for you down the road, in my experience.
Some doctors attack Crohn's aggressively with biologicals and immunosuppressants, and some prefer to save the big gun drugs for later, giving you the first line meds first and see how you respond to these.
Sometimes you can have an underlying infection or condition that aggrevates the flare; once these are treated the flare will stop. I know it's frustrating, but alot is trial and error, and also learning how your body and disease responds to treatment.
Hope this helps; don't let it go on too long, though, as this can cause problems for you down the road, in my experience.
My son has been flaring since Feb. The first round of prednisone worked great...second didn't work so good...He also kept getting infections that would require an antibiotic and that would set him back. We did our second round of remicade today. We haven't had a GI dr visit since the remicade was ordered so haven't been able to ask the doc, but Jeannette, I was wondering; is remission achieved with Remicade? If it is...then why do the great effects start to wear off right before the next infusion? Or do they for everyone? I've heard that the Remicade starts to wear off around week 6-7. I hope if he achieves remission, he'll feel great the whole time and just have to keep on schedule with the infusions.
- Joined
- Jan 30, 2010
- Messages
- 2,082
I've had mild to moderate Crohn's for 18+ years and I was able to acheive remission after my second infusion. I have been on Remicade for 7 months and haven't had the wearing off effect yet. However, I did have an epic flare when I missed a dose due to pneumonia, and one dose of Remicade wasn't enough to break it; now I'm on prednisone too, awaiting my second infusion.
That's encouraging about the 7 months without the wearing off. Since Remicade blocks the TNF, it makes sense that you'd flare if you have to miss a dose. I've heard of some people that have to shorten the time between infusions after awhile. I'm hoping that is an individual thing. I wish the immune system wasn't lowered and then come with the tendency to catch infections! Like your pneumonia. My son was diagnosed with Strep throat on Monday...but they said as long as he was on the antibiotic for 24 hours he didn't have to miss his 2 week scheduled infusion. Now we have 4 weeks before the next. I was a wreck trying to keep him from getting sick over the holidays (we isolated ourselves!),he must've picked up a bug at school and strep can have a 5 day incubation period, but it all worked out I guess. I was certain they'd have to reschedule.
- Joined
- Jan 30, 2010
- Messages
- 2,082
Actually, I got pneumonia as a complication of anesthesia while having a colonoscopy. I had sinus drainage and the anesthesiologist (I had it under a general) sprayed a drug into my oxygen mask that opened my lungs, allowing everything to drain unobstructed (sorry to be gross). Of course this went straight into pneumonia, but apparently this is extremely common and not related to immune suppression.
Entchen
Chief Dandelion Picker
- Joined
- Mar 14, 2010
- Messages
- 1,733
First full-on Crohn's flare started on September 31, 2009 (not counting the several years of D 10-15 times/day, the sleepiness for a year prior, etc. etc. haha!). I was at a conference in Banff, had a sip of wine during a reception, and all of a sudden decided I'd like to just sit for a while and wait for the pain to subside. Three days later, the pain was constant and severe. Have been on Imuran for 7 days now and am hopeful that I might achieve remission by spring. 
Even though I hate that my son has to endure these infusions, it appears to be helping him so I'm thankful that science is working hard and coming up with these options. And I'm thankful I found this forum. Its sooo nice to be able to ask people who endure this disease everyday for some advise. I've been able to find better answers here than from the GI! All of you are wonderful. (And tough). I'm praying for a cure!
Last edited:
I had a huge improvement in my symptoms almost immediately, thanks to IV steroids! I went from being in extreme pain and throwing up most evenings to nothing more serious than bloating and average strength stomach ache every week or so. However going from there to full remission has proved a little more tricky.
- Joined
- Dec 28, 2010
- Messages
- 1
Ive been taking Tysabri for 28 months now and ive been in remission for close to a yr now. granted i still have issues but im the best i will ever be. I seem to be getting better but other things are happening that im afraid of like my thinking and coordination has been off. the past few months ive been falling down alot and my words are mixed. it all seems fine when i plan my words in my head but they come out mixed or short term memory is gone. is this considered remission when i dont have any major flare ups..that i can remember..hence the short term memory
- Joined
- Aug 8, 2009
- Messages
- 156
My son was diagnosed in July 09 after having symptoms since March 09, he went into remission in September of that year but started having symptoms again in December when his LDN was compounded incorrectly. Got that straightened out in Feb, felt pretty good in March and was in remission again by summer.
He's on strict SCD, LDN and maintenance hyperbaric oxygen therapy (about 2 to 3 times per week).
He's on strict SCD, LDN and maintenance hyperbaric oxygen therapy (about 2 to 3 times per week).
After 12 years, I have been symptom free for three months now. Low Cholesterol was the culprit, and I feel like an entirely different person. I encourage everybody to check their cholesterol, especially if they have any adrenal or thyroid problems, as they eat up cholesterol very quickly. Cholesterol is used to make Cortisol, which suppresses inflammation and controls the response of the immune system at the same time.
Several studies have connected Crohns with Cholesterol metabolism, and cholesterol from fats cannot be digested without bile, which itself is made from cholesterol, so its a catch 22. I have found that eggs are much more easily digested and help the symptoms much better.
Several studies have connected Crohns with Cholesterol metabolism, and cholesterol from fats cannot be digested without bile, which itself is made from cholesterol, so its a catch 22. I have found that eggs are much more easily digested and help the symptoms much better.
- Joined
- Jul 22, 2009
- Messages
- 795
For me, pregnancy = remission. Nothing else worked. I'm enjoying being able to eat whatever I fancy, with no evil pay-back. I'm just sad that it's likely to be a temporary remission.
Would birth control pill help to maintain remission for you, since it mimics pregnancy hormones?
- Joined
- Jun 29, 2007
- Messages
- 1,088
About 8 years. Stable on infliximab for now.
- Joined
- Apr 8, 2010
- Messages
- 447
took me over 2½ years to get to remission. Although as long as I stay on the pred I'm in remission. I'm worried about when I get off the pred, because I'll most likely have another flare up and won't be able to get back on it.
Thanks to all of the replies. It's a little scary to see how long it's taken some of you to achieve remission - but it's also encouraging to see that it can take time but remission is out there.
Feb 7 is my big day to see the University of Chicago crohns specialist...so excited!
Feb 7 is my big day to see the University of Chicago crohns specialist...so excited!
- Joined
- Jul 22, 2009
- Messages
- 795
No, they seem to exacerbate the whole inflammatory process
- Joined
- Dec 17, 2010
- Messages
- 1,509
The pill is known to cause flares- it contains oestrogen and progesterone, however it is possible that something like the mirena coil or implanon which only contain progesterone (the pregnancy hormone) may work.
- Joined
- Jan 30, 2010
- Messages
- 2,082
Yes, I had non-stop flares when I was on the pill. It's not even that effective anyway when you have active Crohn's. My doc said that between the small intestine not working right and the regular diarrhea and or vomitting, that most times it's ineffective anyway. I had to go old-school, and the flares stopped and I felt much better.
