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tomboi
Regular Member


Date Joined Jan 2009
Total Posts : 21
   Posted 10/23/2009 8:45 PM (GMT -7)   
hi, everyone.....i have a question about Remicade....i just visit my GI today n he told me that my crohn's has move into my small intestine...(it was in my large intestine before).....i'm on pentasa right now and he said it not working......he told me to go on Remicade but he told me to think about it because there is many side effect and i need to be on that for life....i'm just wondering is anyone on this med have side effect and anyone who is able to get off this med......also he told me that there is 60% that this med will cure the crohn's.....and i'll be syptom free but continue this med for life........any advise would be great.......thxs...=P

MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 10/23/2009 8:58 PM (GMT -7)   
I'm sorry to hear that your Crohn's has spread.

There is no cure for Crohn's. Maybe he meant that it might put you into remission, which is possible. There are a lot of potential side effects but most of them are pretty rare from what I understand. I was on it for a few months but it didn't do the trick so I switched to Cimzia. There are old threads about medications if you want to look for one on Remicade. The list of side effects can be terrifying but when it comes down to it you have to decide what is best for you and the quality of life you might get back from it. I don't know if you would be on Remicade for life but they do like to use it long term.

How long have you been on the Pentasa? What is your dose? What else have they tried with you so far? I'm by no means a medical professional but I know that when I was flaring pretty bad at one point they put me on 30mg Prednisone and bumped my Pentasa to 4g a day just to get it under control and then I was able to maintain on just the Pentasa for a couple of years.


Best of luck.
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 10/23/2009 9:19 PM (GMT -7)   
I was on Remicade a few years ago - it worked miracles for me. There isn't a cure for Crohns, though it may help you reach remission for awhile. I don't know anyone that has been on Remicade for a long time - most people develop antibodies to it and it becomes less effective with time. It only lasted 2 years for me, which my GI said it normal. I think it's pretty safe to say you won't be on it for life. Every year new medications are released and medical advances are made. Few people with chronic illness stay on the same meds their entire life.

Remicade, and really ALL medications, have potential side effects. Very few people have them, and the serious ones are rare. But they do exist. For me it was high dose steroids and surgery or Remicade. Obviously Remicade is the lesser of two evils. I had no side effects from it and really responded well.

I moved from Remicade to Humira, that lasted 2.5 years, and now onto Cimzia. They are all similar with similar potential side effects and I've had no issues with any of them.

tomboi
Regular Member


Date Joined Jan 2009
Total Posts : 21
   Posted 10/23/2009 10:40 PM (GMT -7)   
hi agian....n thx for the reply......i was diagnose Nov 08, and was put on prednisone immediately.....and then pentasa a month later when the pred get to low dose....for pentasa i dont know how much is the dose but it 8 per day(it's 500mg each i think....=P) n from that point on till now.....so now he want me to be on Remicade but it too expensive so i have to wait for a drug plan, which then he prescribe pred again and wait for the drug plan.....N because he told me that there would be side effect and when i search online...it says that some effect is pretty fatal so...i'm still not sure if i should take that med.....he also told me that the med is transfer to the body by the needle which mean you have to go to a clinic each time which i tough it would be a problem because i'm starting my first year college in January......anyway i'm just wondering if i should be on this med or not.....(still confuse.....=P)

moedon1
Regular Member


Date Joined Jun 2005
Total Posts : 139
   Posted 10/24/2009 4:48 AM (GMT -7)   
I concur with Aimee. i started on Pentassa then entocort, asacol, methotrexate then Remicade. I have also been on Pred. 35 mg. Remicade was the first of all the meds that did give me more of a life. I actually went out and even on vacation. Remicade is tricky as are some of the others. You can't miss a dose because your body will build up antibodies similar to thos who's body build antibodies over time and the med becomes less effective. I moved on to Humira after developing pneumonia(Humira does not have live antibodies. Remicade has mouse protien which is what caused the problem when my Remicade infusion was delayed. The list of warnings is endless on all meds now that the FDA has a say in the content of the balck box warning. The decision for me was easy - function better or not at all. Humira was great for 2 years then lost it's potency ay which time I switched to Cimzia. Cimzia lasted three months and I was swithched because I devoped hives. I went back to the Humira and it worked like a charm. I'm not questioning why but I have my fingers crossed. It really is a matter of quality of life. I don;t know about where you are but the infusions were not painful and you are observed by nurses who constanly check on you. I wish I could have stayed on the Remicade but it wasn't possible. Tlak to your dactor. Ask him if he has other patients using the Rem. There are lts of post here on Rem. Good luck!
Donna
 Formal diagnosis 3/2006, IBS 1992, Degenerative Arthritis Facet block and RFA, Seizure Disorder, Severe Carpal Tunnel both hands, SVT arrythmia, 2004 cardiac Ablation
Cushings Syndrome(thanks Prednisone), Asthma, Multiple Laps for ovarian adhesion to bowel, C/5 & 6 disc herniation - plate with screws, resistant to anethesia/most pain meds.  Chronic fungal infections.
Multitude of Meds. Have tried most Crohn's meds.  Gall bladder removal and Intestinal Lap. June 08.- Intestinal blockage July 08 moved on from on Humira..now on Cimzia. .Off the Cimzia 7/8/09.  Back on Humira.  Systemic fungal infection.  Waiting on Liver Biopsy & Hepatitis results.


contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 10/24/2009 6:19 AM (GMT -7)   
Good Morning,
 
 I was diagnosed with Crohns in the beginning of August (2009). I am 51 years old. The Dr's tried the steroid route with me my first 10 days in the hospital, but they didn't work. On my 11th day in the hospital I was given my 1st Remicade treatment. Boy what a relief that was. I was given my 2nd treatment  Sept 1st, and all was well still with the side affects. Except for being extremly exhausted, there were no other side affects. Well least I thought so at the time. Sept 30th was my 3rd treatment. I went to bed early that night (7pm) as I couldn't stay awake. I woke up 2 hours later, in extreme pain, that no one could even touch my skin. I hurt literally from head to toe.  My husband called our local hospital, and gave them my symptons, and that I had, dad my 3rd treatment of Remicade that morning. I also had a high fever. (104) My husband was told to call 911 to get an ambulance to the house ASAP. with in 20 minutes I was on my way to the hospital.
 
What had happened which is a *rare* side affect, was that anywhere that I had arthritis( which is everywhere in my body from being a landscaper/florist for 35+ years and putting my body through hell) that the Remicade attacked the arthritis, and made the pain at least 10 times worse then it was. I was given high doses of Morphine to help get the pain to an acceptable level.  I went to my Dr, the next day, and was given 30mg of Oxyxodone to take every 4 hrs to keep the pain at a low level.  My close up vision has alos gotten worse since I started Remicade, along with a very *rare* side effect of the Remicade attacked my nervous system. I had thought I had read all of the side effects, but I guess not.  Signs that Remicade has attacked your nervous system are, changes in your vison, weakness in your arms and or legs, and numbness and tingling in any part of your body. All of that happened to me. As I have lost the mobility of my pinky, ring and middle fingers on both hands,  due to numbness and painful tingling in them. I can't even turn the key on a car to start it as my muscles in my thumbs and palms are just not there anymore. I do not have the mobility in my wrists any more. I had a total knee replacement in March of this year, and in June of this year I had my right rotator cuff repaired along with my right bicep muscle repaired as it had been torn. The treatments have basically destroyed those operations, as my orthopedic Dr said that the HUGE flare up of my arthritis  has caused so much damage to those areas, that I will need to go through those surgeries again to refix them. The treatments have also caused my right foot to go numb, along with extreme nerve pain in my right foot and from my toes all up the front of my leg. Oxycodone only brings the nerve pain in my fingers/hands/ leg and foot down a little bit. I can only write for a liuttle bit, as I do not have the strenght in my hand. Yep it takes me forever to type as well, as my fingers DON'T really hit the right keys, so I am always fixing typos.
 
The Dr's are hoping that when the remicade is out of my system, that these side effects will go away as well. So it is wait and see what happens. I was due for a 4th treatment of Remicade at the end of November, but that is NOT going to happen. The Dr told me my next step is Humira, which also has the same side effects, but we need to find out which is the lesser of the 2 evils, Remicade or Humira.
 
I do not mean to scare anyone at all, but just wanted people to know even if they say some of the side effects are *rare* they do happen, and they can actually be worse then the pain of a flare up of Crohns. I am now at the end (I hope) of my first flare up of Crohns. It started on Monday, and my diet for the week has been banana's, white rice, and applesauce. Along with Amodium AD. As nothing was staying in my system. What makes this week harder, is that I am a Diet controlled Diabetic, and not having protien has made me more exhausted this week then ever.
 
So I guess no matter how small you think a change is happening to your body after any treatment, please keep track of it, tell your Dr etc.

pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 10/24/2009 6:51 AM (GMT -7)   
Countrymom,I have half of your symptoms,
but for me they are better than the disease...
Your type o's are understandable,especially by
us. Your advise on reporting side effects is wise.
Hope things work out for you...
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Fluconazole(yummy).More over the counter vitamin-D
Remission since surgery and 8-week Remicade.A real freakin medicine cabinet...
.


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 10/24/2009 11:12 AM (GMT -7)   
its an AMAZING DRUG..i have only good things to say about it..its putting me into a remission..in less than 3 infusions

 Crohn's Lupus Hyperthyroid..Pentasa Remicade Fistula removed..skin tag removed!

 


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 10/24/2009 11:48 AM (GMT -7)   
tomboi said...
hi agian....n thx for the reply......i was diagnose Nov 08, and was put on prednisone immediately.....and then pentasa a month later when the pred get to low dose....for pentasa i dont know how much is the dose but it 8 per day(it's 500mg each i think....=P) n from that point on till now.....so now he want me to be on Remicade but it too expensive so i have to wait for a drug plan, which then he prescribe pred again and wait for the drug plan.....N because he told me that there would be side effect and when i search online...it says that some effect is pretty fatal so...i'm still not sure if i should take that med.....he also told me that the med is transfer to the body by the needle which mean you have to go to a clinic each time which i tough it would be a problem because i'm starting my first year college in January......anyway i'm just wondering if i should be on this med or not.....(still confuse.....=P)
I was dx while in graduate school, so I understand working out the appts and such with school. For me it was fairly easy to schedule. I didn't go to school for 8 hours everyday so I just scheduled the Remicade on a day when I didn't have classes. Now - I was not one to respond with extreme fatigue afterwards. If you are, I'd try and go for a Fri so you have the weekend to rest. I was tired afterwards, and typically came home and took a nap, so it worked to do it for like 10am on a non-class day and I could rest the rest of the day.
 
After awhile, I wasn't even tired after the infusion and I started scheduling it for the morning and going to classes in the afternoon. Once I graduated and was working all day everyday, I just arranged to work from the infusion lab. I took my laptop and cell phone and just did stuff there. I understand now all jobs allow that but it worked for me.
 
Remember the infusions are typically 8-12 weeks apart so it's not like you're arranging a day every week. It's more like a day every 3 months. I think you'll find your professors to be more than willing to work with you if you meet with them about your health issues and potential conflicts. I missed an entire semester of class in grad school and was able to keep up in most of my classes.
 
ETA: I was under the care of 3 different GIs while on Remicade, who all did it differently. My last GI did it in office and arranged to have us come in on Saturdays when the office was closed for them. That worked the best with my schedule!

tomboi
Regular Member


Date Joined Jan 2009
Total Posts : 21
   Posted 10/24/2009 5:21 PM (GMT -7)   
hi again.....thx for the advise....i think i would use the med...but still a little nervous...juss hope it doesn't interrupted any of my classes because my GI said that the first few infusion will happen evry two weeks...and later it'll be push back until it to every 8 weeks.....and stay on it like that....hopefully it works...=P

contrymom
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 10/25/2009 9:02 AM (GMT -7)   
Thank you pillpopper,   
 
 Yep I  was thinking the same thing about the side effects. Except for the night of my last remicade treatment (sept 30th). When I thought  the pain that brought me to the ER on August 9th. (thats the start of being told that I have Crohns) Was the worse that I ever felt. So  then I read about the side effects of Humira, and YIKES, they're as bad as Remicade. So I will take the chance and see what happens. It's either that or spend my days in the hospital.
 
Plus I am having my Husband read about Crohns, the side effects from drugs, what my body goes through every day from the Crohns, that when I say I am *exhausted* , that is one of the side effects of the Crohns and the meds. I am also explaining it to my 12 yr old daughter, so that she can understand.
 
She has been through hell and back, with all that has happened to me this year. 10 ER vists, either from Crohns, but mostly in the spring when they finally found out that I have COPD as well. It's the ER by amulance times, that scared her the most, as she hasd gone through all of that when her and I took care of my Mom and Dad   24/7 for 3 years, before they passed away at home. So it'like flashbacks for her. But she talks at least once a week to her Guidance Consilor to help her vent about things. Plus having her sister (25) be here for her, when she needs her, plus she also does so much for me, since I can't do as much I as I used to. She's been coming up from Mass, to NH every weekend to help out. Well that and shes gets good meals prepared for her. LOL
 
Sally
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