Help please, Remicade??

Hi

I am new to this board and I am looking for opinions and testimonies of people who know anything about Remicade.

My Dr wants me on it but after checking it out on the Internet, I am scared.

I was diagnosed in 2001 with Pancolitis. I lost 34 lbs, was hospitalized for 1 month at the time.  I have been symptom free for 5 years until just a couple of months ago when things started happening again.

Right now I am on 8, 400mg Asacol and Salofalk every night.  Big decision as to what my next step should be.  I have a great Dr that listens to me and we work things out together. Now I have to decide whether to go on Prednisone again Ugh!!! or Remicade.

Any help would be greatly appreciated.

Thanks

remicade worked for me for a while, but i went through a very stressful time and relapsed.  since then i have gotten some very unusual skin infection that the docs still don't know what it is.  i got the infection because of the remicade more than likely.  all in all, i want more remicade.  i had very few side effects and am ready for my next infusion but have to wait until they find out what strain of infection i have.  i felt better after just a few days of my 1st infusion...

Thank you Gela, Judy and Bob for replying. 

It really helps to hear that other people have tried it and feel it worked for them.  It really is a hard call when it comes down to enduring terrible side effects of Pred or possibilities of cancer and the possibility of dying from an infection. 

Is anyone able to tell me the % of deaths due to complications or cancer?

When I was on Predisone, I became very depressed and my nerves were shot, I had the shakes and gained a sh__t load of weight not to mention the moon face, hump on the back, hair thinning but facial hair growing, I coulnd't drive and often had a hard time speaking (couldn't find words to express what I need to say). The thought of going through that again is very depressing.

Thanks....I am so happy I found this board

Julee;

When I was symptom free, I was also medication free.  I stopped all meds when my syptoms stopped.  I hate drugs and decided no need for drugs if I was not suffering...it worked for me, for a while...5 years. I don't regret my decision.

about a month ago I started with Proctitis symptoms (sm amount of bleeding, feeling pressure) I took Salofalk every other night then every night seeing nothing was changing. The bleeding got worse and now I am cramping high in the colon and very tired so I then I added Asacol and as of Thursday I upped the Asacol to 8 pills and enemas every night.  Because things are progressing at an alarming rate, my doctor asked me if I was ready to go on Predisone.  I declined the Predisone for now.  I have an awesome GP who listens to me and we decide together.  I am waiting for an appointment with my GI but in the meantime my GP spoke with my GI and he said he wants me on Remicade....mind you he has not seen me nor have I had a colonoscopy in 5 years.  That is my situation right now. I see my GP again Wednesday for an update.

While I wait for an appointment with my GI, I am asking lots of questions and educating myself so I will be able to make an informed decision.

Boy, do I ever appreciate this board and the support I feel from everyone.

Cindy,
5 years of remission without meds is pretty amazing! Wow. If you had taken Asacol the whole time, the GI would have said that it was the Asacol that kept you in remission. I really do think that flares resolve by themselves a lot of the time and it's really impossible to tell whether it's the drugs or just the way it was going to be anyway.

I think it's a great idea to have all this info before you go back to your GP and see the GI. Maybe you can "quiz" your GP on all the other meds that people here suggest. For example, if your GP doesn't know about Cortifoam or doesn't have a good argument against it, then you'll know to take his suggestion of Remicade with a grain of salt. A lot of non GI doctors read about Remicade and think it's the miracle drug we should all be taking. (How many of my cousins emailed me articles about it?? Here! Try this!)

Also, I'm pretty sure that you can take a whole lot of Asacol safely. I know someone who takes something like 12-16 tabs a day. So you haven't maxed out on Asacol yet to know whether it really isn't going to work. Just my humble non-medical opinion.

My specific questions for a doctor who suggested Remicade would be: What about Colazol, Dipentum, 6MP, Imuran, or rectal meds? Can you make a convincing case for why you picked Remicade as the next step in treatment? Do you need to do a colonoscopy to know which of these drugs might work best for me?

Let us know what happens on Weds. Hang in and take care.

Cindy,

IMHO, seems to me Remicade is jumping the gun a bit. In my case, as flares got more frequent thru the years.I went from 6 Asacol, to 12 Asacol. I was on 12 Asacol and Rowasa enemas(as needed) for a long time. In the last year, I had a flare and had to go on Pred for the first time. Then Aza/Imuran. Remicade has not even been mentioned to me at this pt. Of course that's just me, and everyone is so very different. This GI doc hasn't even seen you yet and wants you on Remicade? Doesn't seem right to me. Also, you've been in remission for 5 yrs and he doesn't want to start the others first? I know some people do really well on Remicade but it just seems to me that the doc would want to start you on something else first or at least see you first before going to Remicade. You really might want to ask lots of questions about that one. Good Luck

Donna

If you can take one more remicade story, here is mine. I was fast becoming steroid dependent, and could not bear anymore prednisone. I was up to 60 mg and had terrible side effects. My doctor put me on imuran, but also wanted to move faster on the remicade because of my side effects, and difficulty going off prednisone. I have to say I have had no problems with the infusions. They go fine with no side effects or reactions. I know that my experience is my own, but many people take the remicaid with no immediate problems. I have been good as far as illnesses, none so far. I do have problems with cuts. If I get a cut I have to be careful to use neosporin and bandaids throughout the day or the cut gets infected quickly, and I have to go on antibiotics. One note about the cancer side effects. My doctor said that many physicians do not believe that the cancer risk is proven. My doctor said that he has read, and has had discussions with other specialists, and they believe that patients who had cancer were predisposed to the disease, and it may not have been a direct result of remicade. However, if you get any disease or side effect, even if not related, during a trial the drug companies list it as a possible side effect so that they can avoid big lawsuits. Right now I am down to 5mg prednisone, and fell pretty good. Some days are worse than others, but even the bad days are not nearly as bad as before. So something must be working, either the remicade, imuram or both. I am willing to take some risks with the remicade if it means I can have a long term remission without prednisone. I just cannot go back on prednisone. I am just now starting to see some of the side effects go away. Good luck!

Thank you Glen;

Your post gave me hope but I have to tell you I am still in a whirl wind.  I don't know anything else but Prednisone, yuck. Asacol is no big deal and neither are the steroid enemas. Would you mind telling me what kind of flare (symptoms) were you displaying when you were put on Remicade?  If I consider going on it, should I wait until I am in a full blown flare? I know you are not a doctor but I am looking for opinions. I think they are worried that if I wait until it is crazy (bloody diarreaha several times a day, and pain) they will have a problem getting it under control like the last time.  I know nothing about Remicade, Imuran or 6MP??????????

Would you tell me or anyone else interested.....in what it's like getting Remicade.  Do you feel anything while you are recieving it?  What kind of side effects should I expect...I already know about the cancers warning.  You make a lot of sence about the law suits.....

As of a couple of days now, the bleeding has stopped but now I only have the cramping...maybe its because of the Asacol, who knows??

Cindy

Cindy, I will throw in my two cents worth in also...I feel my situation is a little wierd, but I'll try to explain...I was diagnosed only this year (March)...My symptoms were lots of mucus, a little blood and that is about it...I felt fine except the worrying over why I was bleeding...I started on asacol, and it didn't do anything for me by itself...He upped my dosage and still didn't do anything...Every time I went back to see my dr. I was getting worse, pretty quickly too...He was affraid it would get even worse, so he went ahead and put me on prednisone (40mg)...I didn't see any side effects until a month after I started taking it...Although it helped tremendously, I hated the way it made me feel...Grouchy all the time, couldn't quit eating, gaining weight, blurry vision, all kinds of stuff...Nothing life threatening, but bothersome...ANYWAY, as I started to taper off the pred, as soon as I got to 10 mg I would start flaring again...Went back to 40mg, tried to taper again, and the same thing kept happening, no matter how slow I tapered...Went back to the dr. and he said either Imuran or Remicade...I didn't want either one because of all the scary side effects they have to tell you about...I couldn't decide, so he decided for me...He chose remicade so I could quickly get off the pred...I was scared to death about it, but went for it...Had all my blood work done and made sure I didn't have anything that could pop back up from the remicade and all was good...The wierd thing I think is, is that he only wanted me to have three infusions and stop...After my first one, all was good...No symptoms other than a few mild cramps...I've now had all three infusions and everything is fine and I'm down to 10mg of pred and still no symptoms...I go back Nov. 12 and I'm not sure what is next, but it's not pred!!! Once I'm off that stuff, that is it for me!!! I've had enough of it...No side effects from remicade, just very sleepy for the first day because they gave me 50mg of benedryl...I just sat there with an IV and watched tv or read a magazine for two hours...OH, I've had several people ask me, and I've wonder myself why remicade so quickly, after only being diagnosed since March...And to be honest, I've really not had any other medications except just what I've said in this post, asacol and prednisone...I don't know why he skipped all the other meds, but I trust him and feel he is sincere about doing what is best...Sorry for this really long post, I tried to make it as short as possible...

I had a recent bad flare that has been 6 months now and I can't get over it. I was on super high pred (80mg) and even after I had weaned down I was having all the side effects you were mentioning. Horrible stuff and I couldn't function with my kids. The asacol, etc, didn't seem to be working, so the new doc wants to go with imuran for 9 months and remicade indefinately. My biggest problem is once you're on it you aren't suppose to go off b/c you will develop antibodies and you can't get back on it. My hope is that I will end up like all these people I've talked to getting infusions at his office....they are on remicade, nothing else, and flare free...for like 8 years! So no 12 pills a day, no prednisone, nothing but an infusion every 2 months. Granted I have to drive 3 hours each way, but still better than pills every day (b/c I forget). I've had one infusion and I feel better (well, different anyway). Lots of things factor in, but I think it's working somewhat at least. When I was getting my infusion I met a lot of people that it WAS a miracle drug for, and I met one that it wasn't and he still had a ileostomy. But the remi had still somewhat worked for him, just hadn't lasted from infusion to infusion. I met SO many people who had SUPER bad problems from the steroids....cataracts in both eyes, knee problems, etc... It scared me into the remicade I think since it seems to have less side effects. And my doc said a lot of the warnings on remicade are not really true. He specifically told about the heart problems warning. They apparently gave the drug to "death bed" patients with heart problems hoping as an anti-inflammitory it would help them...it didn't. They died anyway. But for some reason they linked it to the drug. He also said the cancer (from the imuran/remi combo) was trumped up. Statistically it was higher, but in reality it was more like 2 out of 1000 people got the cancer as opposed to 1 out of 1000 (he used different numbers). And this guy is apparently close to a god in these things. I mean, to hear the patients talk about him... I've never heard anyone who had anything good to say about a GI doc!
I also go a lot by the pregnancy ratings...imuran and 6mp are class d b/c they are unknowns...remicade is class B, which should be ok.

Hey all, sorry to chime in here so late in the game; but I've been on Remi for over two years now, and all is well -- matter of fact, I have one tomorrow. I'm on the fast track (you can do this after a certain amount of infusions, they just have to make sure there is no reaction) and it takes me about 1-1/2 hours to be infused. They usually put in the IV, give me a warm blanket, and I'm sleeping for most of the time. I bring a magazine with me, but most of the time I just sleep. I try to schedule them for mid-afternoon, and then just go home afterwards. I really haven't had any problems whatsoever. The day after one particular infusion, I flew all the way to the east coast; another infusion....the next day I flew to Europe. I thank heavens for this med, and I'm so glad my doc put me on it. I was sicker than a dog wondering what I'd do because I had a full time job and up for a promotion, a house to take care of, and hey, just the busy stuff. I have an incredible GI, and I told him that my lifestyle was horrible and I was mad because I couldn't exercise like I had been, etc., and he decided to put me on Remi before it was even approved by the FDA for UC. But this is my story; I can't say the same for everyone. Good luck to you on your decision. Oh, and about the sore back and cramping; yep, it's the UC. Sometimes I get that (not often) just because and I kick back and let my body rest up. Take care, and if you have any other questions, please feel free to email me or post again.

Hi There...I am new to this and have been reading thru all morn.  Wow, it's great to hear others testimonies.  As far as remicaid, I just had my 3 infusion on Monday.  I was started on it in Sept. when I ended up in hosp. because of a terrible flare.  I have had UC for 15 years with tons of flares, usually coming under control with Prednisone.  This time I did not respond, even to IV steriods.  I was also on Asacol, and steriod enemas.  Bleeding, and weight loss was out of control.  Bowel movements consisted of nothing but blood and mucous.  The surgeon was sent in.  Had first Remicaid treatment in hosp. and within 2 weeks bleeding and urgency stopped.  Now, after my 3rd one, I am having "normal" bowel movements for the first time, literally, in years.  I forgot what it was like.  As for prednisone, my eyesight is shot, I am dealing with moon face and all the other lovely side affects from steriods.  I also have osteo now, per recent bone scan. 

All that being said, even though the remicaid fact sheet can be scary, it is nice to feel good, and any trouble the drug might give me, I will deal with that as it comes along.  At this point, I am taking one day at a time, and enjoying living somewhat of a toilet free life.