Remicade and Crohn's
in [Colitis]
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From: NoSpamNoSpam on 25 Oct 2005 15:51 Mickey, I am concerned with your blockages. I was on Remicade for 4 years and got blockages that led me to get surgery. The Remicade worked so well that it healed my inflammed intestine too quickly and caused scar tissue. The scar tissue caused strictures in my intestines and constant blockages. I learned a lot about Remicade both good and bad on: http://health.groups.yahoo.com/group/Remicade This group was in existance for 5 to 6 years now. It helped me a lot. How are you doing now? Joe Mike G wrote: > I have had Crohn's for 20 years and my Dr. has been trying to get me on > Remicade for the last 5 years but I got pregnant twice and so he never > was able to do it. I have my first infusion scheduled for Thursday > morning and I am concerned about the possible side effects of it. My > disease is pretty much in remission (thanks to Imuran)and now I just get > periodic blockages which I treat with prednisone. I am tired of going on > and off the Prednisone and it's side effects. I also have a small > fistula. Overall I am in pretty good health. > > Can anyone tell me about their experiences with Remicade? I am also > concerned about the cost. My company just switched insurances so I am > back to square one with deductibles (luckily they give us until 1/1/07 > for your deductibles to turn over. ) > > Also, I used to stop in to this newsgroup fairly regularly about 5 years > ago and it's nice to see some of the reguars are still here. Thanks to > 2 job changes I now have time to stop back in. > > Thanks for your help, > > Mickey
From: paula on 25 Oct 2005 16:50 Mickey wrote: > I am really confused about this, I know my Dr. wants me on > it but I am concerned about the long-term effects of the medicine. .. Please do realize that the ultimate decision is yours and yours alone. Your doctor really is there as a consultant only and you never should feel forced to accept his/ her advice. You are very wise to check into all the different side effects.
From: Mike G on 25 Oct 2005 18:21 NoSpamNoSpam(a)gmail.com wrote: > Mickey, > I am concerned with your blockages. > I was on Remicade for 4 years and got blockages that led me to get > surgery. > The Remicade worked so well that it healed my inflammed intestine too > quickly and caused scar tissue. The scar tissue caused strictures in > my intestines and constant blockages. I learned a lot about Remicade > both good and bad on: > http://health.groups.yahoo.com/group/Remicade > This group was in existance for 5 to 6 years now. It helped me a lot. > How are you doing now? > Joe > > > Mike G wrote: > >>I have had Crohn's for 20 years and my Dr. has been trying to get me on >>Remicade for the last 5 years but I got pregnant twice and so he never >>was able to do it. I have my first infusion scheduled for Thursday >>morning and I am concerned about the possible side effects of it. My >>disease is pretty much in remission (thanks to Imuran)and now I just get >>periodic blockages which I treat with prednisone. I am tired of going on >> and off the Prednisone and it's side effects. I also have a small >>fistula. Overall I am in pretty good health. >> >>Can anyone tell me about their experiences with Remicade? I am also >>concerned about the cost. My company just switched insurances so I am >>back to square one with deductibles (luckily they give us until 1/1/07 >>for your deductibles to turn over. ) >> >>Also, I used to stop in to this newsgroup fairly regularly about 5 years >>ago and it's nice to see some of the reguars are still here. Thanks to >>2 job changes I now have time to stop back in. >> >>Thanks for your help, >> >>Mickey > > I am doing good right now. I had a bad period right after the 4th of July where I had about 8 blockages in 10 days. I went back on prednisone until early Sept. I have not had a blockage since but have had a "funny" feeling like I was going to block a few times recently but I quit eating until I felt better. I am pretty active working full time and 3 boys that also keep me on my toes. I also work-out about 3-4 times a week. I am firm believer that exercise helps to control my flares and my general well-being. Part of me wondera if I am in the "I feel good I don't need medicine" zone right now. I am leaning towards putting the first treatment off, doing some more research and talking with my Dr. and them making a more informed decision. Mickey
From: kevin on 25 Oct 2005 19:08 I am a male with CD since 1992 and I have a female co-worker with it also. We are both on Remicade and feel it is a wonder drug for us. We wouldn't be able to work with out it. I Love it. Good luck. Kevin
From: Jeff and Mary on 26 Oct 2005 00:07
pg is pyoderma gangrenosum. it is a subcutanious ulceration of the skin of unknown origin. actually, it is believed to be autoinflammatory, my ulcers were wickedly deep and the size of a tennis ball. i was hospitalized at university of michigan for a month. in some cases, pg comes along with the cd. it can come along with uc and even more often with ra. my cd acted up and the pg with it. i slowly felt the effects of remicade, nothing immediate. but things really took off and improved when we added an immunomodulator that i could stand. once out of the hospital, things continually improved. all in all, it was about 6 months later that i proclaimed myself in remission, cd and pg. pg normally would take the better part of a year to heal, mine completely healed, from the size it was and bone deep in 7 months. it was amazing actually. u of m invites me back to meet with a few hundred 2nd year medical students every year since. i just got the letter for this year's "grand rounds" and it is my 3rd year doing this. the derm department at u of m considers my case quite rare, in it's severity as well as the treatments i had to undertake. i was quite the prize patient there and they never forget it. long term effects. well, inflixamab has not been around long enough i guess. about 10 years now since approval. quite frankly, after reading about the potential long term effects of mtx and a few other things i have been on, which has been around longer, personally, i am not too concerned. i lead a near normal, quality life and i work full time. btw, you really need to get screened for tb before undertaking inflixamab. i am sure your doc will require it. you should be on an immunomodulator to avoid developing antibodies resistent to inflixamab. tnf-alpha has been shown to be overproduced in cd patients. inflixamab neutralizes some of this. after being on this for over 3 years, there is nothing showing up in any tests to indicate something going wrong. i see 4 docs on a regular basis, eye, internist, allgerist and gi, get bloods every 3 months, yaddy, yaddy, yaddy. everything is cool so far. you will make the right decision. jeff "Mickey" <mickeyg(a)one.net> wrote in message news:1130268539.909122.236480(a)o13g2000cwo.googlegroups.com... > Jeff, > > Thanks for your reply. How sick were you beforehand? Roughly how long > did it take to begin working? Do you know of the long-term reactions to > this drug? I am really confused about this, I know my Dr. wants me on > it but I am concerned about the long-term effects of the medicine. > Although I know that most drugs we are on have some sort of risk of > being on them long-term but for some reason this one makes me nervous. > I have done a little research on th internet and come with the risk of > lymphoma and TB. > > What is pg? > > Thanks for your help, > > Mmickey > > > Jeff and Mary wrote: > > well micky, > > > > i have been on remicade for over 3 years. i have not had any real side > > effects, but i also am on an immunomodulator (mtx). i have cd and pg. i > > feel tired afterwards. if you watch your bp during infusion, you will see > > it drop off some, but this is normal. i didn't find it to act quite as > > quickly as their study suggests but it is working well for me. i know about > > costs and co-pays. i have a max out of pocket each year of $3,000 and i > > chew that up by mid year. we make sacrofices so that i can do this, there > > is no doubt about it. if i didn't have insurance, i would not be able to > > take it at all. i get infusions every 12 weeks and the charges are about > > $7,000 each. good luck with your's. > > jeff > > "Mike G" <mgoony(a)one.net> wrote in message > > news:11lqqvodrntm749(a)corp.supernews.com... > > > I have had Crohn's for 20 years and my Dr. has been trying to get me on > > > Remicade for the last 5 years but I got pregnant twice and so he never > > > was able to do it. I have my first infusion scheduled for Thursday > > > morning and I am concerned about the possible side effects of it. My > > > disease is pretty much in remission (thanks to Imuran)and now I just get > > > periodic blockages which I treat with prednisone. I am tired of going on > > > and off the Prednisone and it's side effects. I also have a small > > > fistula. Overall I am in pretty good health. > > > > > > Can anyone tell me about their experiences with Remicade? I am also > > > concerned about the cost. My company just switched insurances so I am > > > back to square one with deductibles (luckily they give us until 1/1/07 > > > for your deductibles to turn over. ) > > > > > > Also, I used to stop in to this newsgroup fairly regularly about 5 years > > > ago and it's nice to see some of the reguars are still here. Thanks to > > > 2 job changes I now have time to stop back in. > > > > > > Thanks for your help, > > > > > > Mickey > |