Help please, Remicade??

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solomino539
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 10/27/2007 6:54 AM (GMT -7)   
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

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 10/27/2007 7:08 AM (GMT -7)   

Cindy, first let me tell you I am completely biased on this subject.

I was steroid dependent for four years. Couldn't get off them without getting so sick I could barely function, yet wasn't completely in remission even with them. Colazal helped, Imuran helped, but all three together just kept me functioning. I ended up with a lot of bad side effects related to long-term steroid use.

In February of 2006 I started on Remicade. By May I was in the best shape I've been in since diagnosed. I still have to take my Colazal and Imuran, but I'm now in a complete remisssion based on both my symptoms and colonoscopy.

Remicade does have some scary-sounding side effects, too. So far, I've done okay. I've had one cold since being on the Remi and no other infections at all. I do sometimes worry about the slight increase in the rates of lymphoma with it, but I've decided I'd rather deal with that risk than with a life of 20 trips to the bathroom each day, pain and bleeding and constant exhaustion.

Remember that this is only one person's story, and there are others who have had different experiences. I hope you'll hear from a lot of people about this so you can have more information when making your decision.

Good luck, and I hope you feel much better soon.


Judy
 
Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 
 
Now in remission for almost two years. Remicade has been my wonder drug.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


gela
Regular Member


Date Joined Jun 2005
Total Posts : 133
   Posted 10/27/2007 7:55 AM (GMT -7)   
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...

Diagnosed in 1999, hospitalized once.  Not responsive to meds.  Currently on 12 Asacol, , 8 ampules of Gastrocrom, 6 grams Colestid, flagyl, remicade for my UC.  Also have migraines and take B-4, B-2, for the prevention of them.
Deciding whether or not to have surgery at this time.


schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 10/27/2007 3:37 PM (GMT -7)   

The remi has helped me and freed me from the evil pred.  Still have some progress to make but I am betting with the remi.

 

love to all here

bob


solomino539
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 10/27/2007 4:54 PM (GMT -7)   

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 tongue


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 10/27/2007 5:09 PM (GMT -7)   
Hi Cindy,
Were you in remission for 5 years with a maintenance dose of Asacol? Maybe the Asacol just stopped working for you and you need to try a different drug. Perhaps someone else here has experience with Asacol working and then not working after a prolonged time??

Personally, I went through every drug imaginable before I decided to take 6MP (imunosupressor that comes with its own bad stuff to worry about). I wonder-- is your doctor jumping to the serious treatment now because you are really, really sick? If you're flaring just a little and not losing a lot of weight, you could try the cortisone enemas. They are far less problematic than Prednisone in terms of side effects. I think the cortisone enemas only work if your inflamation is low in the colon.

Just my two cents. That said, I'm also a believer in not suffering and it really sounds like Remicade can change your life if nothing else is working. But I would try a few other treatments first before I took a drug that made me nervous.

Anyone know about whether Asacol stops working eventually? I kind of think that happened to me some years ago and then I switched to Colazol and eventually DiPentum.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


solomino539
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 10/27/2007 6:50 PM (GMT -7)   

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.


annBrown
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 10/28/2007 7:55 AM (GMT -7)   
Hi Cindy539,
I'm also new to this forum (and glad to have joined). After tapering down for a few months off mesalamine enemas and asacol, my symptoms got worse again, and a new doctor started me on Cortifoam. I have tolerated it very well (for a month or so now) and it has really helped. I'm scheduled for another colonoscopy soon to get a better idea of what's going on, but certainly the Cortifoam is helping for now. So maybe that would be a better option than the Prednisone. Keep us posted on your progress and good luck to you.

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 10/28/2007 10:28 AM (GMT -7)   
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.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


solomino539
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 10/28/2007 11:45 AM (GMT -7)   

Julee;

Thanks for the reply.  Great questions, you bet I'm going to use them. 

The first and last time I was sick I just followed whatever I was told because I was in a fog because I knew nothing about this disease and didn't realize how bad it can get....so much was happening to me at such a fast rate.  I was also in a state of fear because the concept of taking 12 Asacol and ??? Predisone plus all the stuff to help me with the side effects of the Pred,I was taking 32 pills a day.... I was pretty much freaked out by that.

I feel I am better prepared for what is to come.  Considering the pain in my gut is getting worse by the day, I will probably go on Predisone right off the bat when I see my GP Wednesday and then when I see the GI I will question him on those med's you mentioned.

Thanks.

Cindy


pupluv
Regular Member


Date Joined May 2007
Total Posts : 256
   Posted 10/28/2007 12:46 PM (GMT -7)   

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


Donna
Diagnosed with indeterminate colitis in 1992
current meds
4 asacol 3x's a day
Azathioprine
Rowasa enemas as needed
VSL3
Bunches of vitamins


solomino539
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 10/28/2007 2:20 PM (GMT -7)   

Hi Donna;

I am assuming the GI is considering Remicade because the last time I was sick, I got really bad, really fast and was only days towards surgery...

But you are right about trying other med's first. I am feeling more confident going back on Prednisone and see how well it will work this time. I am better prepared knowing what is in store for me as for side effects.

What I would really like to do is, go on an all liquid diet for at least a week to give my gut a little reprieve but I can't because I have to work to pay the bills and wouldn't have the energy.

 


monidad
Regular Member


Date Joined Jun 2007
Total Posts : 54
   Posted 10/29/2007 9:02 AM (GMT -7)   

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!


Glenn
UC diagnosed 2004

Asacol 9 tablets daily

Canasa PRN/ Currently 1x in evening

Prednisone- 30 mg as of 6/8/07, Increased to 50mg 6/18/07, 5mg as of 10/29/07

Lialda 4 tablets daily

Multi vitamins

Azathioprine 50mg

4th Remicade Infusion 11/21/07


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/29/2007 9:32 AM (GMT -7)   
hello, just my two cents, my maintenance dose of Asacaol was 12 pills a day (4800 mg a day). When I would go less than that by 'forgetting' to take all my meds, I would eventually end up in a flare. I would recommend looking into increasing your Asacol before jumping to remicade. Though the doc wants to put me on remicade to help me transition into Imuran.
Beth, 32
UC Diagnosed March 2000
Azathioprine 100mg 1xday;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 1xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


solomino539
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 10/30/2007 5:24 AM (GMT -7)   

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


45 yrs old. Mom of 3. Youngest child has Down syndrome and husband has Muscular Dystrophy...Stree is a factor for me.
Diagnosed 2001, Ulcerative Pan Colitis. Hospitalized 1 month.  
Symptom free and medication free for 5 years.
Flare October 2007. Asacol 8, 400mg and Salofalk every night.
 


monidad
Regular Member


Date Joined Jun 2007
Total Posts : 54
   Posted 10/30/2007 6:12 AM (GMT -7)   
My flares were usually very frequent bathroom trips (20-30 perday), very loose stools, urgencies, not feeling "finished", and cramps when going to the bathroom. Blood was not usually a big issue with me, but mucous was. I also had joint aches throughout my body. Prednisone definitely helped. but it took more each flare, and I was not able to go below 20mg without flaring, and then the prednisone had to start over again. I was never in  a true remission without prednisone, and this last time period (June-September) was the worst as far as side effects; I had them all, and some were a bit dangerous (very high blood pressure and cholesterol levels, blurry vision). When I take the remicade infiusion I fell nothing at all except boredom! I have had no allergic reactions, and no side effects afterwards. For me it has been extremely uneventful. I moved quickly to the remicade because I needed to get off the prednisone. If other meds can induce remission then it is better to wait. You MD may want to try imuran or some other immunsuppresants before going to remicade, or maybe the combination of Asacol and enemas. Maybe increase Asacol doasge as well. However, in my case, I was put on Imuran then quickly to remicade. I do not have any regrets since in my case I had to get off prednisone. I have read about people who have had some problems with remicade, and I guess the good news is you can always stop. I have also heard of many people who have nad no problems. I have had no problems at all, and think it is helping me get off prednisone so for me, it was a good decision.



Glenn
UC diagnosed 2004

Asacol 9 tablets daily

Canasa PRN/ Currently 1x in evening

Prednisone- 30 mg as of 6/8/07, Increased to 50mg 6/18/07, 5mg as of 10/29/07

Lialda 4 tablets daily

Multi vitamins

Azathioprine 50mg

4th Remicade Infusion 11/21/07

Post Edited (monidad) : 10/30/2007 7:15:20 AM (GMT-6)


bk1579
Regular Member


Date Joined Sep 2007
Total Posts : 100
   Posted 10/30/2007 6:50 AM (GMT -7)   
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...
28 Yrs old
Dx UC 3/07
4 Asacol 3x/day
30mg Prednisone
Remicade (3 infusions)
Fish Oil supplements
Multi-vitamine
 


solomino539
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 10/30/2007 9:05 AM (GMT -7)   

Glen and BK...Thank you so much for your post.  You don't know how much that helped me.

I was considering Prednisone only because I know what to expect but after hearing about the two of you...I will reconsider if and when my symptoms get bad again. 

I too had sooo many issues with Prednisone.  I was also diagnosed at that time with Ostioparosis, Arthritis, Fybromialia....(sorry for the spelling), not to mention, leg pains so bad I had problems walking, night sweats, my skin was so thin and hurt to touch, moon face, ate like a pig out of control, the shakes, couldn't speak properly, nerves shot, crying all the time.  I tell you, I was a mess. confused   I don't know if the first 3 conditions were the result of Pred or the Colitis...I still don't know but all that went away when I was better.

What about Imuran?  Is it like Pred with lots of side effects?  Have you heard of 6MP?

I'm curious to hear about those med's.  If anyone could shed some light on them that would be great.

I feel very blessed to have found this board. tongue


45 yrs old. Mom of 3. Youngest child has Down syndrome and husband has Muscular Dystrophy...Stress is a factor for me.
Diagnosed 2001, Ulcerative Pan Colitis. Hospitalized 1 month.  
Symptom free and medication free for 5 years.
Flare October 2007. Asacol 8, 400mg and Salofalk every night.
 


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 10/30/2007 8:24 PM (GMT -7)   
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.
dx late April 2005 with pancolitis UC after birth of my son (second child)... meds didn't work (or rather they would work and then randomly stop)
Started SCD and vit e enemas 12/9/05...that and meds = remission 12/11/05, off meds 12/20 (were on the way out before that), stopped continuous enemas 3/23 and use them only when I feel a flare coming on. 
Beautiful perfect baby boy born with no drugs and only vit e enemas during pg - 10/14/07
He also had no gas or discomfort while nursing from me being on the diet.
Didn't use the enemas last flare since I was nursing and regretting it now, wasted time in the hospital with drugs that did nothing but ravish my body, now on my own and almost better... vit e, weaning pred, licorice
 


solomino539
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 10/31/2007 4:17 AM (GMT -7)   

Denise;

I can't imagine going through what you went through with a new born...How on earth did you functions?  I'm glad to hear things are working out for you.  Did surgery ever come up as an option?  No one really speaks of it, almost taboo.

The more I hear about Remicade, the more I am less anxious about it.  I am please to say though, the bleeding has stopped, no urgency, just cramping.

I have a question...my back and hips and legs are cramping. Is that from the Colitis?  I am only on 8 Asacol and enemas every other day.


45 yrs old. Mom of 3. Youngest child has Down syndrome and husband has Muscular Dystrophy...Stress is a factor for me.
Diagnosed 2001, Ulcerative Pan Colitis. Hospitalized 1 month.  
Symptom free and medication free for 5 years.
Flare October 2007. Asacol 8, 400mg and Salofalk every night.
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 10/31/2007 6:48 AM (GMT -7)   
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.

Carol

Remicade - will have my 19th infusion on November 1.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


monidad
Regular Member


Date Joined Jun 2007
Total Posts : 54
   Posted 10/31/2007 6:50 AM (GMT -7)   

Cindy

I never had cramps, per se, from colitis, but did have some intense aches and piains that felt like cramps. Imuran has its share of potential side effects, but not the same as prednisone. That is not to say that some are not potentially serious, but prednisone seems to be more all encompassing. So far I have not had any problems with the imuran, but I do have to be careful about infections. If I get a cut I need to use neosporin frequently and keep it covered so that it does not get infected. I have not had problems with illnesses, but winter is coming so I need to be very careful. I got my flu shot, and wash my hands constantly. It si important to keep a distance from people who are sick. It will also be important to have regular blood tests to check your white blood count, liver functioning. I am sure that your doctor will go over that part of it with you. All in all my experinece with remicade and imuran have been great. Much better than with prednisone.


Glenn
UC diagnosed 2004

Asacol 9 tablets daily

Canasa PRN/ Currently 1x in evening

Prednisone- 30 mg as of 6/8/07, Increased to 50mg 6/18/07, 5mg as of 10/29/07

Lialda 4 tablets daily

Multi vitamins

Azathioprine 50mg

4th Remicade Infusion 11/21/07


MomOf8
New Member


Date Joined Oct 2007
Total Posts : 1
   Posted 10/31/2007 8:16 AM (GMT -7)   

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. 


Lauri - Mother of 8 children (5 after UC diagnosis).
Diagnosed 1992 w/Ulcerative Colitis
Numerous flares (too many to count)
Hospitalized x 2
 
Remicaid
Colozal 3/750 mg 3 x day
Prilosec for GERD
Calcium 1200mg day for Prednisone induced Osteoporosis
HSO Probiotic
Fish Oil 1000 mg
Iron 50mg


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 10/31/2007 8:24 AM (GMT -7)   

Hey Lauri, welcome to HealingWell! I'm glad you came on to share your experiences. You'll be happy to know that my "moon face" from Pred disappeared within about six months after coming off the Pred.

Here's my routine of getting through the cold and flu season, but remember...my routine.....hand washing (often!), Zicam, Airborne, and B-100 vitamins.


Carol

Remicade - will have my 19th infusion on November 1.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 

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