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24 Year Old Seeking Advice About Remicade – Please Help

Introduction:

My name is Kelli and I am 24 years old. I have been diagnosed with UC since I was 13 years old. I am currently experiencing a flare up and my doctor is wanting to start me on remicade. I have been on asacol since I was diagnosed with Colitis.

Any Advice With Remicade?

A little background on my medical history~ At 14 years old I was hospitalized for a week due to low blood count (it was 4.6 when my normal is usually around 14) I was released and put on prednisone for many months until the UC went into remission. Since then I haven’t been hospitalized but almost each year I tend to have a flare up and be put back on prednisone until the remission comes back. From the age of 13 until 24 I went to a pediatrician ( I realize I maybe should have switched sooner but I liked and was comfortable with my doctor and wanted to stay with him until I couldn’t any longer)
~ My current flare started around May/June 2011

At the start of my current flare I was seeing the pediatrician GI and he put me on entocort instead of prednisone cuz it was suppose to be better on my body even though it would take longer to kick in and start affecting me. I took entocort for months and it seemed to be helping SOME but it really did take to long. Once I switched GIs he had me come in for a scope to see the extent of my UC. We found out that my left side is what is mostly affected and he had me come off of entocort and put me back on prednisone and started me on mercaptupurine. I was suppose to try and only be on the meds(prednisone) for about 6wks (he started me on 40mg for 2wks and then I was to taper off 10mg a wk and only stay on the dosage for a wk) I was not able to get past 30mgs.

Every time I try to go down to 20mgs the blood and frenquent of using the bathroom come back worse.

My Dr. doesn’t want me on prednisone any longer than I have to be (which i understand because i already expreience the side effects of prednisone..from using all those years before)and he feels that I am steroid dependent.
~Now he is suggesting REMICADE.

To be honest as soon as he left the office my eyes began to water I don’t know if it’s because this new treatment will make where I have to go to an office to be treated and the not being able to take pills at home makes me feel as if my UC is ALOT worse than I’ve ever thought it was, I know it also makes me think more of cancer treatments which I know that is what he is trying to prevent from happening. (Which I know since I’ve been diag for over 10years I have a greater chance at getting)
I was wondering about Remicade?

Is that something I should really look into?

My Doctor is only really offering that as my next option he hasnt given me any other types of medical treatments to do, is there anything else out there that I might/should ask my Dr. about?

ALSO has anyone been on Remicade and PREGNANT? (Im not pregnant now but before this flare I was really thinking about starting a family)

Any information or feedback/thoughts would be greatly appreciate.

As always I hope your UC day today was better than your last!!:)

written by Kelli

submitted in the Colitis Venting Area

 




Remicade

16 Responses to 24 Year Old Seeking Advice About Remicade – Please Help

  1. Adam
    Adam January 3, 2012 at 8:38 am #

    Hi Kelli,

    What might be really helpful for you is to read the Remicade Survey Results, this was a recent survey that other UC’ers filled out who have taken remicade. there’s a ton of great information about remicade that I think will answer ALOT of your questions. Here is the link to it on this site:

    http://www.ihaveuc.com/remicade-infliximab-reviews-and-survey-for-ulcerative-colitis/

    -Adam

  2. Minna January 3, 2012 at 9:45 am #

    Hi Kelli
    I have been on Remicade for 3 years now and for me it’s the best thing ever happened. It does make me feel tired for couple of days after I get it but after that I’m great. Like you I used to eat Asacol and Prednison for flare ups but I always had at least one or two flare ups per year. I get Remicade once every 8 weeks and between that I don’t have to remember to take any tablets at home. I find it nearly easier. I know there are people who has serious side effects but I seem to tolerate it well. I would say to try it and you can always stop taking it if it doesn’t agree with you.
    Hope you get sorted one way or the other.
    Minna

  3. Lara
    Lara January 3, 2012 at 9:59 am #

    It’s recommended that you not be pregnant while on Remicade. In fact, you have to wait 6 months after your last infusion before you can start to try to have a family. (I think I read that on the Drug Reference Encyclopedia website)

    I don’t think it can hurt to look into it. I’m on Remicade & I’ve had really positive results with it. But if you still aren’t sure, ask your doctor questions!

  4. KELLI January 3, 2012 at 1:38 pm #

    @ Adam thank you for the information I will deff. look at that to see if maybe it can help me feel a little better about trying remicade. @ Minna thank you for your feed back I does truly help to read about others in the same situation as myself. I hope everything is going good with you also. and @ Lara, thank you for the information I will def ask my doctor about the remicade and pregnancy. I really want to start having a family soon but I know for that I really need to be healthier. Thank you all for your feedback it is greatly appreciated!!!:)

  5. Milka January 3, 2012 at 4:14 pm #

    Hi Kelli!
    I have been on remicade for 2 years and for me it’s been the best thing. I was diagnosed 3years ago with severe UC and that was my only flare that lasted forever until I changed drs and got the help I needed! I too felt like I was going for a cancer treatment when going for my infusion and broke down and cried my 1st infusion realizing this is a “disease” that’s not going to go away and just how severe it is. But after the initial infusion I have since been ok. You may feel tired or like you are coming down with a cold after the infusions, I find it’s best I nap afterwards. Always listen to your body when it needs rest.
    About pregnancy… There was a girl in our clinic who was pregnant and coming in for infusions. Although the pregnancy was upsetting her colitis and the drs were going to wait until she had her baby before switching her to humira.
    Anyways if you have any other concerns please don’t hesitate to ask!

    • KELLI January 9, 2012 at 8:32 am #

      @ Milka I was wondering if you know more about the girl that was in your clinic that was pregnant, do you know how things turned out for her and the baby? (I know everybody is different and every pregnancy is different I just was wondering about her situation of being on remicade and being pregnant)

      Thank you all for your feedback just reading your situations and thoughts make this experience I will soon be going through a little less scary! Thank you!!!

    • rico February 2, 2012 at 11:37 am #

      hi milka,ive had 2 infusions so far,in 2 weeks im going again,no results for me,does it take a while?been flaring for like a year and nothing is working,glad to here your doing good,thanks again..

  6. dave evans January 3, 2012 at 5:39 pm #

    kelli–I “ditto” Mina–

  7. JENNI January 3, 2012 at 7:31 pm #

    HI!! KELLI JUST WANTED TO AGREE with the others !!
    I went on remicade after being in hosp. for a week last year they said that it was the last thing to do… for me..I was on everything before pred…asacol..imuran..and so on. Before leaving the hosp they gave me my first infusion..it worked for me!!! Made me tired but it stopped my everthing within a day !it was great very expensive but there r programs to help..!!!!
    Im 37 marrried mom of two girls so i was like awsome!!But know im on 4 pills of colazal 750 mg each had a flare this sept..and went back to U oF M ~~ where i live to get another opinion.I felt like theres got to b something else so no more remicade for now …and she has me on the colazal and its been great with out remicaide too though like i said very expensive but its worth a try!!!That or get another opinion doesnt hurt..Good luck

    • KELLI January 9, 2012 at 8:34 am #

      Jenni,

      You mentioned that there are programs to help with the cost of remicade! Could you give me some information on those programs because I know I will need some help with paying for my medication! Thank you in advance!!

  8. David January 3, 2012 at 7:50 pm #

    Hi, I was started on remicade for my UC, Like you i was scared as well not to sure about this treatment. Ive had four treatments and go for another next week. Its been the best thing for me I recomend you try it. I havent had any major side affects except lower back pain. I think this drug is awesome for this crapy illness we have. I dont know how it affects pregnancy? I would talk to your doc about that. I hope you have good insurance because its exspensive. but remicade has worked like they say it will for me and not having surgery is even better!! I hope this helps with you. Hope you kick UCs ass that what im doing! get well soon!

  9. Blake January 3, 2012 at 10:38 pm #

    Try it! I hope it works for you. I tried it and got a bad rash from it, so I had to get off, but everyone is different. If it works for you then you will be happy you did it.

  10. Matt January 5, 2012 at 4:59 pm #

    Hi Kelli,

    Remicade (or Infliximab) is the only thing that works long term for me and I’ve been on and off it for years. Never had any side effects despite some of he scary things written about the drug. I think there are dangers with all powerful drugs but for me it’s always a question of weighing up what sort of quality of life I’d have if I didn’t take them. This doesn’t really answer your pregnant question though, sorry :)

    Matt

  11. Shelly January 10, 2012 at 1:18 am #

    Kelli, I was on remicaid for about three years. It stopped working eventually, and was put back on the dreadful prednisone. When I was on it, I loved it. I felt normal, it made me sick for a day or so, tired, headachy. If I could go back in time, I would have seen my current dr so he could stop me from taking remicaid and everything that came after. He’s a genius. I owe him so much. He has given me back my life.

  12. Shelly in Maine January 10, 2012 at 3:14 pm #

    I’m another Shelly! I was on remicade for about 3 years also!! They were 3 very good years, but I was at a higher dose and more frequent and then I became allergic. Make sure you read up like Adam said-the survey and the med. sites so you know what to look for and expect. They should also give you premeds. like tylenol, solumedrol(IV steroid) and benadryl to reduce reactions-as well as go at a slow IV pace. There are also discount programs for these expensive meds. http://www.janssenaccessone.com/pages/index.jsp Good luck and good health, Shelly(in Maine!)>

  13. Amy B. April 15, 2012 at 6:16 pm #

    Hi, my name is Amy! I’m from STL, MO! I have been dealing with UC for 15 yrs, I started out with bloody movements, fatty looking stuff and of course diarrhea! Also using the bathroom at least 10 times per day and messing in my pants at least once per day, and this is after taking about 10 imodium per day! The first drug I was put on was prednisone, then I read up on all the side affects and decided to change Dr.’s because thats all he wanted to put me on! My next Dr. tried Colozal and enemas with a little prednisone to try and get the flare under control! Unfortunately I had to get a new Dr. because he moved! So my next Dr. saw that my UC still was not under control, and since I was finished having children wanted to try me on Remicade and Imuran! I have now been on Remicade Infusions for 5 yrs, I started out getting them twice a month and now my intervals are every 4 months! I’m doing great I have my life back, I only get diarrhea about once a month, I can even hold(it) if I’m traveling in the car and there are no bathrooms around! Sometimes I can hold it so long that the urge goes away!

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