Started 6-MP yesterday - please share your experiences!

I am also on 6-mp. I started this about 2 months ago now. I am also due to have my 4th infusion of Remicade at the end of September. I also want to mention here that I was advised by my GI that I should start 6-mp (even though I didn't want to) while taking Remicade. I may not be getting the exact details right but one reason was it helps to keep your body from building the anti-bodies against the Remicade. I guess I had hoped that I could just be on the Remicade along with my other meds and that's it.

As for my progress, I'm am doing much better than before....better than I could ask for but I still live in fear everyday. What I mean by this is that I just worry that I may not make it in time to get to a bathroom. I have a very bad anxiety about this because for the last year I had been so sick and kept on flaring. I guess I just expect it to happen everyday. We all know that you just have to plan so well. It even scares me when someone else is driving the car somewhere...LOL! If I don't have control over the car so that I can stop it to get to a bathroom..it worries me to death!

I am also anxious to hear how everyone is doing. I personally don't notice much on the side effects of the drug. I exercise on a regular basis and I feel that helps me tremendously! So, so far so good!

Please keep posted here about what is going on! Love to hear all about it.

Well im finally reaching out to others who indure this ugly disease called ulcerative colitis.

I have some questions about starting remicaid. I have been approved and waiting on my gi to call and let me know when to start. can anyone tell me about their experience with remicaid. I have had bad side effects with alot of meds and this one Well WOW! just wondering what to expect.

Diagnosed in 1992-ulcerative proctitis

diagnosed in 2006-pan coliti

this is the 3rd flair Ive had in this year alone

getting worse after 15 years.

age 40 now.

meds

colozal 750 tid

had to stop 6-mp after about 7 weeks right after increased dose to 100 mg(nausea)

prn colazol-bad head aches, prn cortenemas(yuck)

prn bentyl,nexium 40 mgs

darvocet n-100, clonazapam at night (fibromyalgia)

BP meds, estogen

Getting ready for Remicaid, also went back on 20 mgs of prednisone this week

I'm glad to hear that you feel like you're having some real success from the 6MP, and so soon.  According to pretty much everything I read, it can take almost 7 weeks to see any significant improvements.  But hey, take it!!  If you're feeling good, what could be better.  Like you said, it could be the combination of meds so be cautious when you start weaning off the Prendisone, everyone says to go slow on that, I think might have been part of my problem in the past, tapering to quick.

Have a great holiday and keep me posted, I go to the doctor on Friday for my first follow-up. Feeling pretty good, still the slight headaches, but not the horrible ones I was having.  Keeping my fingers crossed.

Deb McG

To respond to your question, whitey on my experience with Remicade, well so far so good.

I had no adverse reaction to getting the infusion. I was scared to death but, it was all for nothing because it all worked out just fine.

I am given Benadryl and Tylenol before they start the infusion and also solumedrol...that's how I think you spell it. Not sure. Anyway, I do believe it has worked well for me. I have had increased bm's lately but I do think it has to do with my diet more than anything. I don't have pain, just tired for the most part.

I will get my 4th infusion of Remicade at the end of this month and I wonder if it will hold on until then. I am supposed to get infusions every 8 weeks at this point. I have had UC for a very long time but it's been mild to moderate for me. I do feel though that if Remicade does stop working, I may be looking into surgery. The last I looked into having it, I was told that I should wait.....because I am not so bad. The thing is, I am so tired of living my life like this. All the medicine...where is the next bathroom, etc. I accept that I have it. Sometimes though, it's very hard to live a normal life because of worrying so much about making it on time to the bathroom. My family is very understanding but as we all know, when it hits you, there is no time to wait...and some people just don't get that.

Carlow, I am about on the same medications as you with the exception of the Asacol...I am just taking more of those. I hope you will feel better soon. I was in the bathroom about 15 times a day before I started on everything. The only other difference is I had to go on Prednisone because it was just one of the worst flares I've ever had. I've since been off of that though for about a month and I'm doing much better.

Every time I get bloodwork done, I show elevated WBC, even in the last 2 stool tests I took.  Even when I'm not in an active flare.  The Doc always blames it on the UC.  I asked could it be from somewhere else in my body and he says no because everything else is in the bloodwork is at good levels.  Since your fever broke and you do have congestion, it's pretty likely you did pick something up somewhere. 

I was diagnosed with UC in June of 1999. Reponded well to Rowasa and then the switch to Asacol. By the end of the year symptoms were returning and after a couple months of denial I got so sick I was hospitalized for 48 hours and pumped with antibiotics and prednisone. Tapered on and off of it for several months so my Dr. had me try Imuran. The stuff is terrible! The pharmacist said it "wipes out your immune system". I felt so horrible on it (extreme fatigue - could sleep 14 hours and barely feel better), aches and pains, knocked my menstral cycle out of whack so I was irritable all the time etc etc.) My Dr. told me that it takes 3 months to see if it is working and I would often feel like I had the flu perhaps - and it might not even work. I got to the point where my body told me "do not take one more pill", (it felt like I was taking poison - which in a way it is) so I called a Pharmacist and asked if there would be any problem if I stopped taking it cold turkey and he said no. So I stopped and every day I felt sooooo much better. I quit my stressful job and had a 6 month delayed reaction before I stopped getting sick (2 ER visits, more prednisone etc.) Then I was in remission until last fall (2006) and have really struggled to get well. I'm back up on 30mg of Pred and one canasa a night. I see my Dr tomorrow - her patient coordinator said she wants me to consider an immunosuppressant -which of course I will not! I'll see if she would increase my prednisone a bit more for a short time and perhaps switch to Rowasa again. I am sure Remicade and 6mp etc all have their place and if it helps people thats great - but personally I think it's awfully scary to be messing with people's immune systems like that. In fact after I stopped taking Imuran - my mom who was VERY opposed to me stopping it heard research that people on it were getting skin cancer (she changed her mind real quick!). The research did not surprise me....we see people with AIDS getting skin cancer all the time because their immune systems are compromised... well thats what those immunosupressants do. I was SO grateful that I had the choice - unlike people with kidney transplants... they do not have a choice. For me the quality of life was so bad I could not believe it. Awful experience.

I've been trying some meditation and stress reducing activities and hope in time the white blood cells will knock it off soon. I'm not sure why I can't get better this time - but it's getting a bit tiresome and increases the damage that can be done.

So for what it's worth that is my experience.

Hope it helps and take care everyone. This is a strange disease huh?

That is very frustrating when doctors dismiss patients and their experiences. Glad I could validate a side effect of the immunosuppressant. Is your Dr a specialist? or a GP?

I saw my GI today and she also was saying that some people are on these drugs and don't have problems. I still declined her offer and we're trying Rowasa and an increase of prenisone for a short time. She also said that if it doesn't work I have to try something. Well, easy for Drs to say! I think that Drs get frustrated with patients because they want us to get better and so push a drug regime and if we don't cooperate because of side effects they really just deep down feel helpless. They went to school to help people and can't if we don't take the meds. Well, side effects can be serious and lower the quality of life - so it's always a trade off. 

I also find in addition to personality differences there are generational differences in how Drs talk with patients. "Old school" male drs are the worst and I won't tolerate being talked down to. As the consumer you get to pick who you see -

Good luck!