I was 22 when I started Remicade that was back in 2001 it was late summer at the time. My last remicade treatment was Dec 26, 2006. I had set up the following treatment but after being in remission thanks to remicade from august 2005 then I flared like crazy in august 2006. I initially was getting the infusion every 6 weeks, then about 2 yrs later they upped the dosage without my weight going up since it seemed as though I needed more. (my dose increased when I moved from RI to CA and was seeing newer docs (younger ones too with newer info and experience with more RA patients....I had the option of getting remicade at an RA docs office or the hospital and I chose the RA doc who also was a PCP prior to deciding to return to school to have a focus in RA but still kept up pcp clients).
I had colonoscopies that determined I was in remission the test had shown some issues but nothing like the past. I was on Imuran too at the time when in remission and was taken off of that since I kept getting bronchitis and pneumonia with every cold I got and that would also postpone remicade treatments at their normal times and I would begin having issues when I would go too long without it. I found at about 5 weeks my joint pain would return that was more the issue why I began the remicade rather than my gut since the pills helped my gut however never placed me in remiision as the remicade did. When I was in remission the GI changed my infusions to 8 weeks plus I had begun having adverse reactions to the remicade in early 2005 it would cause heart arrythmia, tachycardia and chest pains even when I was pretreated with prednisone and effects were the same whether it be oral or IV for pred. I ended up really bad in February 07 my ileum perforated which was why I didnt make my next remicade appt. I then too changed GI docs since the one I had for many years did not believe me when I told him I was flaring and I had a CT scan and a CT enterography to back it up...the CT also showed 4 kidney stones and my GI at the time told me oh that hospital says that a lot when it isnt true....needless to say since Feb 07 I have had over 20 CTs and a cpl MRIs including MRI Enterography and they showed what docs were looking for but also all of them showed the stones....and that makes 3 hospitals and additional x ray imaging places that were not affiliated with any particular hospital.
My new GI since I just met him in Feb 07 wanted to as a preventative try pentasa or imuran I told him the issues with imuran. I started to flare not long after my surgeriesd so I was placed on Entocort and we discussed either remicade or humira again it was my joints that were screaming for something that would also help that. I informed him of the recent issues I had had with Remicade plus the fact thatI have the worlds worst veind and I refuse to have a port placed...the lady that drew my blood last week use to even work in drug rehab clinics and oncology and she had to try 3 times...u can hit my veins that are tiny but they blow or roll away she finally had to get me with an infant butterfly needle...also in the hospital it took 13 tries to get an IV in me cuz at that hospital they use CT contrast iv die to place a PICC line, I had anesthesiologists etc try.
I also talked with my PCP about it and since every time I got a cold my asthma would get really bad especially when turned into pneumonia he preferred I try HUmikra at this point because of the more recent reactions as well. Remicade was amazing for what it was able to help me with I would have headaches for about 1 week after the infusion and I would also have joint pain approx 1 week later and it was so severe it would keep me awake overnight but after that 1 night of pain I was good for about 4 or 5 weeks. WEhile I was in remission the premed with pred gave me the joint pain I always did accept the tylenol and benadryl (in CA they used claratin instead and had benadryl on hand if claratin wasnt enough). While I was in remission I was good on the every 8 weeks and was actually cutting down on Pentasa and was on only 250 mg a day of that and the remicade for my CD.
I now am on HUmira and everyother week wasnt enough for me and that is strange being that I only weigh 90 pounbds since my last surgery I had gone down to 85 pounds (I am 4' 9.5"). Strange how humira is not weight based but remicade is yet they both work with the TNF factor as far as I understand. I have to give myself Humira 1 time per week and If I have to skip a week I feel it at about 10 days after my last shot and it takes me a few days to feel the full effects of it. With Remicade I felt the effects in a cpl days as well. I just started back on the every week of humira after seeing my GI after my 4th Surgery within 1 year for my CD since it keeps remanifesting so fast...I have Crohn's colitis. I had a wound infection .....again....so I had no humira from Jan5th til Feb 26th....then my GI had me on every other week but about 1 week before my HUmira began again my joint pains were to the point some days I was unable to walk without a splint on and the stomach pain increased. I see him again in mid april and if the pain in my abdomen is still evident I go for another MRI to see if it remanifested again (I only have 1/4 of my colon left and already had and hated the whole ostomy thing but I must say I had no pain joint or abdominal CD wise with it but even that created a fistula and I had abdominal abscesses and it infected my whole abd wall etc...I have been to heck and back in the past year but I would never taken those years away when I was on Remicade since it was the 1st thing ever to put me in remission.
I was Dx in 1987 when I was 8 and knew nothing of remission until 2005 when I was 26 I must say it was a pretty good year I had all around and I wonder had my old GI listened to me and the medical evidence maybe he would have increased the frequency of the remicade to where I had been and maybe I would have avoided Sx or maybe tried HUmira on me but I think I was meant to see the GI I see now since my old one kept insinuating I should not have children my New GI has no porblems with it as long as I get the okay from him (hopefully if this pain gets better or the MRI shows things are okay and things go well into the summer he will give my husband and I the okay) with a high risk ob and careful monitoring of course but he has been involved in many tests with pregnancy and CD meds etc and what is safe he also teaches at BRown and keeps up with the newer studies on the newer meds and he does his homewok on things and it obviously is better to be on no meds to be pregnant but certain meds are okay if monitored some are safer than others and many people have been on remicade longer than others some never have issues with it some have immediate issues and some like myself take a while to develop them.
I had 1 cold since on the Humira and it turned into a sinus infection (which mine always do) but it stopped there I have not had that happen where it didnt travel to my chest nevermind no bronchitis etc...just that factor alone made my PCP quite happy
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