New to Remicade, how to know when working?

[Asher]

Hi guys! I had my second loading dose of Remicade today. And I know that it may take a while for results, but that being said, I have a question.

First off, I'm also taking Asacol and I feel that it's been able to keep my GI issues under control since I started it in Sept (also tapered off Pred during that time). Even though my GI stuff is going well (minus some blood here and there), I was guided to start Remicade.

I started my first dose 2 weeks ago. Haven't seen improvement with my bowels, because, really, it's been going okay with that anyways..so Im not sure if I'll ever notice a change....is that a fair assumption?

Along wight hat, I do have joint pain that I believe is Crohn's related. Will I know that Remicade is working once those pains go away? How long did it take for you with joint pain for it to go away once starting the meds?

 

[araceli]

Asher. My daughter was on asacol and having no symptoms(she is asymptomatic for the most part) but her sedation rate and colonoscopy results showed her Crohn's was progressing. I will believe that having blood even once in a while is a sign that you are not in remission. Maybe your Doctor saw something that prompt him/her to prescribe remicade. Do you know what your sedation rate was before remicade? We notice improvement after the 4th dose but everybody is different, some see improvement after first while for others take months. I hope remicade works wonders for you. Let us know how it goes.

 

[Alley2231]

I started Remicade in April, after trying Pentasa & 6mp with out success. I was hospitalized twice before starting Remicade....I actually went right into the infusion center right after being discharged and at that point I was only on an IV steroid as my "treatment". I could tell it was working within a few days.

I actually had joint pain start up after I went on Remicade. It was determined after I tested negative for drug induced lupus, and met with a rheumatologist, that the Remicade was actually the cause of the joint pain. (seeing how my GI symptoms are fine, the only way the joint pain that goes along with Crohn's would flare up, is if I was actually flaring) I just had my last infusion this week. It worked wonderfully for my GI issues, but I've had painful joint pain, migraines and light & noise sensitivity since I've started and it's very much interfered with my quality of life.

I hope it works well for you and you don't have to deal with any annoying side effects! I'm feeling a bit anxious about what the next med will me for myself!

 

[dave13]

Hi

Yeah,it can take a few treatments to feel any improvement.The mantra of we are all different holds true to infusions as well.I noticed I felt less fatigued after the second infusion.I should clarify,I felt fatigued for a few days after the infusion and then felt noticeably better.I lost the foggy 'crohn's brain' feeling also.I experienced,and still do,times of varying degrees of fatigue but I am having longer stretches of feeling much better.

When I first started Remicade I experienced joint pain.I thought it odd considering it is also used for RA.In my case,those symptoms stopped after the 3rd or 4th infusion.

I recently,12-30,had my second maintenance dose. I'm happy to say I felt no fatigue immediately after the infusion or days after.This was the first time I didn't log any serious nap time after an infusion.

I hope this helps

 

[jonique]

I had my second infusion on Dec 30 and since then have been very fatigued. I've also had nasal stuffiness, periods of 2-3 days of diarrhea and inflamed feeling in bowel and then it goes away but returns a few days later, and now this week have noticed that I am feeling very cold, mostly in my feet. Has anyone else had this cold feeling in their feet? I have the warmest socks imaginable on and my feet still feel cold.

I have my next infusion on Jan 30 and am very hopeful that I will see some results soon! Been flaring for over 4 months now and I'm getting sick and tired of feeling sick and tired

 

[DJBHeat]

I've been on Remicade for 2 years now. From what I remember, I started to feel better in around a month. My doctor however told me that it takes around 3 months for it to fully take effect.

I personally didn't experience any joint pain so I can't comment on that

 

[AJC - Australia]

took me 6 months to properly know it was working well…been on it for 8 years now and still well. yay!

 

[Drummerd]

Hi Guys

I had my 6th Dose of Remicade about a week ago after having to postpone 2 weeks for my 8 week dosing plan. First off- I must say my remicade does not last the full 8 weeks but after my last infusion I feel like I am in a flare.

I feel worse then I did before I went it. Been having to run to the bathroom, a lot of flatulence, and a ton of brain fog and most importantly full body muscle twitching.

I have a history of colorectal abscesses and I am always concerned that a flare of my lower ileum will cause another rectal infection ( Both Painful and debilitating).

Anyone else feel like remicade stopped working after 6 doses or deal with muscle twitching?