Remicade personall experiences please...I'm a bit freaked out.

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mdf34
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Date Joined Feb 2010
Total Posts : 925
   Posted 7/29/2010 5:47 PM (GMT -7)   
So I go to my GI today for a follow up.  I am NOT where he wanted me to be by this time.  I have tried to do a bit of reading but am not that patient of a searcher.  I see the most recent post about weight gain.
 
Can any of you relay to me more info or your personal experience with Remicade.  I think he wants to start me on it pretty quick....as soon as he gets it through insurance and I get my TB test done.
 
I've seen what some of the sides are but really want to hear directly from people on it.  I personally don't want that kind of weight gain.  I saw my weight today, which has been a bad flare day already anyway, and was actually happy.  I am slowly and surely losing weight that needs to be lost.  I can't afford that gain.
 
I'll try to be patien for responses but I really an kinda freaked out right now. smhair
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 


FunGuy
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Date Joined Oct 2009
Total Posts : 1070
   Posted 7/29/2010 6:00 PM (GMT -7)   
Can you be more clear about your situation? I take it you are one of the CD folks who gains weight rather than lose it?? Are you wanting to lose weight or gain it?
 


mdf34
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Date Joined Feb 2010
Total Posts : 925
   Posted 7/29/2010 6:06 PM (GMT -7)   
I am 5'8" and 200lbs as of this morning.  I would like to keep losing the weight I've started/been working on losing.  Been on the other drugs for better part of a year already.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 


RedSoxGirl85
Regular Member


Date Joined Jun 2010
Total Posts : 265
   Posted 7/29/2010 6:10 PM (GMT -7)   
My neighbor is on Remicade and swears by it. She said it saved her life and probably would have been dead by now if her doctor didn't finally diagnose her and start her on Remicade right away. She does not have Crohn's Disease but another type of Autoimmune Diseases. She is a very small person and since starting Remicade 2 years ago she has lost almost 30 pounds. She is a very small person anyway so losing this weight probably isn't the best for her. I'm looking into going on Remicade and I was told you can lose weight from it but was never told I could gain it. I texted my neighbor about this post to ask if she heard anything about weight gain and all of the people she knows in the infusion room while she is there have all lost weight or stayed the same but never gained. So let's hope you do not gain anything. If you do gain a little from what I've been told it would be worth it!!
RedSoxGirl85
50mg 6MP
10mg Prednisone
1000mg Sulfasalazine 3x Daily
50000IU Vitamin D Once a Week
Zofran ODT As Needed
100MCG/ML INJ, 1ML Cyanocobalamin B12 Every 3 Weeks
 


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/29/2010 6:35 PM (GMT -7)   

Hi!!!

I was on Remicade for a year and a few months. At that point my crohn's was so bad I was ending up in the hospital about 3 times a week. I'd lost my job. So I started Remicade and it worked wonders..put my crohn's into remission almost. I was able to add to my diet like corn on the cob... then 8 months into I started waking up in the middle of the night crying of pain in my toes,fingers,elbows. One night my husband thought it'd be a good idea to take a bath but I couldn't even get into the bath tub. The pain had continued so I went to the E.R. I was told it was Arthritis, and from then on out I went crippled from the pain. I had lost my life, yes the crohn's was under control but nothing else. until finally my crohn's was no longer stable. So I did my own research (especially on this site and the amazing people) I realized because remicade has rat DNA in it, CD patients end up getting high anti-bodies from it which of course attacks the joints. Doc took me off of it and started a course of imuran, with in a week I was arthritis free!!! I did not gain a single pound on this med (and I am the type to gain 50-60lbs on the steroids which is why they wont treat me with it anymore since I have such a small frame)

I don't want to say Remicade is bad don't take it. All I am saying is make sure your telling your doctor to take anti-body tst every 3 months along with liver tst. I also suggest speaking to your doc about taking imuran or something of the sorts (I don't suggest MTX imuran would be a lot better IMOP) to avoid anti-bodies. some patients are able to stay on this for long periods of times, others like myself get use to a med and then must stop. Like I'm on Humira for the last year and it's now lost the effeteness and now causing arthritis again. But I say I got 2 years almost (granted I lost 8 months of my life due to arthritis) and was able to eat things I forgot what the tasted like. So if you have a chance for pain free CD for even a year, take it!! Just follow up with the doc often and do your own research.

Good Luck!!! Keep us posted

 


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 7/29/2010 6:53 PM (GMT -7)   
I'd like to state the obvious first. C/d is not the way to lose weight.
I am 5' 8". At the end of January I was 167 lbs. At the end of February I was 142lbs due to a bad flare. It did not look good as I was losing as much muscle as fat. Made me look like 75 years old instead of 49 years old. I started remicade and now I am back to 167lbs today. That is good in that I am healthy but I wanted to hold my weight between 150 and 155. While many have said that gaining weight comes witht he remicade I have to remind you that unless it is water weight you can't make something out of nothing. If you eat 1200 calories a day and walk or exercise 1500 calories you must lose weight. You can not create fat from nothing. It is true that some folks burn more calories at rest than others but that doesn't change what I said. I know that I jumped up to this weight because 1- my healthier gut was absorbing nutrients instead of pooping out everything I eat and 2- my favorite ice cream has been on sale and 3- I am eating a lot.
This is what I believe anyway. I feel you being at 200. I am having a tough time holding 167. I'd rather be 200 than the PAIN and ill health I had in February. I wish you well.
 


mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 7/29/2010 7:19 PM (GMT -7)   
What about all the other side effects?
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 


mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 7/29/2010 8:03 PM (GMT -7)   
I was on Remicade for about a year and a half and had no real side effects (weight or otherwise).  The worst of it was being tired after the first few infusions, but that was more likely due to the iv benadryl they gave me beforehand to prevent a reaction (I'm pretty sure they also gave me tylenol before hand).  Remicade induced my first remission.  The only reason I stopped is because it seemed like I was entering another flare.  My doctor wanted to get a capsule endoscopy to see what was going on, but my insurance wouldn't approve it, even after my GI fought with them for a few months.  There are risks associated with Remicade and since I appeared to have stopped responding to it, my doctor and I decided to stop it.  about 6 months after stopping it, I finally got approval for the capsule endoscopy and it showed that my crohn's was actually still in remission -- it turned out that I had IBS on top of it.  If it came to the point where I needed another biologic, I wouldn't hesitate.
 
As an FYI, I know a few people (a colleague, a child of my mom's friend) who have entered and maintained remission via remicade alone (neither of them had side effects either).  It was their stories that made my decision to try it easier.  I was still nervous, but excited at the prospect of remission too.
 
I hope your experience is successful and side-effect free too.
 
Melissa

34 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Canasa, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, Restasis, Zyrtec, Zantac, Align, Calcium, Vitamin D, Centrum, Digestive Enzymes, Thera-tears Omega 3 Supplement, Co-Enzyme Q10
Gluten free since Aug. '03


Tara28
Regular Member


Date Joined Apr 2005
Total Posts : 362
   Posted 7/29/2010 8:14 PM (GMT -7)   
I have never heard of weight gain with remi until last week on this site. I think it's pretty rare. I was on remi for a yr and didn't gain an ounce..same with humira. I am a person who gains weight extremely easily. I gain a ton on prednisone.. the only effect I got from remi was a cold feeling during the infusion and for the rest of the night..and during the days of loading doses I got a headache that wouldn't go away with painkillers. But it wasn't too bad :)

So I def wouldn't worry about weight gain with remi.
33 years old, dx with Crohn's in 1998. Currently on :
Clofazimine 100mg daily,
Rifampin 600mg daily, and Clarithromycin 2 tabs daily
and Cipralex 10mg/day for anxiety.
Hydroxyzine, percocet, Ativan as needed.
5g pharmaceutical grade Omega 3's, 1000IU's Vitamin D3 daily
2 Perianal fistulas, and 1 more suspected. Crohn's only at end of colon, cecum. Remi, Asacol, Salofalk, Imuran, Humira did nada. Built immunity to long-term Cipro use, which also induced panic attacks.


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 7/29/2010 8:17 PM (GMT -7)   
The side effects are overstated apparently. This video is an excellent resource that helped to alay my fears. http://programs.rmei.com/CCFA139VL/start.html
Cut and paste that link.

Seems like I have had bad reactions to many of my meds though so I still worrry.
 


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 7/29/2010 8:37 PM (GMT -7)   
i've had 4 infusions with no side effects at all...
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 7/29/2010 9:32 PM (GMT -7)   
Remicade was a miracle drug for me for 2 whole years! Those were the two best years of my Crohnie life (8 yrs and counting). I never gained any weight on it nor did I have any other side effects. Finally, it stopped working for more than about 3-4 weeks, so I had to try Humira, then lost Remicade. I'd say, give it a go! Maybe it will change your life... If it doesn't work or the side effects are horrible, you can always discuss stopping with your GI.
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09
Failed every other drug and about to prepare for ostomy surgery... In the process of gathering info and meeting with ET nurses.


missnuts
Regular Member


Date Joined Apr 2010
Total Posts : 76
   Posted 7/30/2010 12:29 AM (GMT -7)   
I have started Remicade and am due my third loading dose next month. So far I have put on about 2-3lbs, I am not eating any differently but bowel movements do seem to have slowed down. After first infusion I had joint pain in knees, ankles and fingers which lasted about a week or so. Second infusion I had bad pain in big toe joint and my stomach has got noisier and I seem to have more discomfort (maybe it is bowel contents moving around, I have strictures too). It is probably worth trying, it might be the wonder drug for you and weight gain seems not to be a problem for everyone. I was put on it because I started on Methotrexate but still can't get off Pred. I have now got Osteoporosis so really could do with getting off the steriods. Good luck.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 7/30/2010 12:39 AM (GMT -7)   
I have been remicade for 6 years with my infusions being every 4 weeks at the 10mg per. I had a year hiatus when I went off of it to try humira and then cimzia but my doctor put me back on it and I am doing really good with it. My dose is the max that you will find and some doctors consider it too high, so I can be confident in answering questions about the side effects. It is a great medication and it does have side effects. The day of infusion and a few days after each one, you will have a high likelihood of having flu like symptoms with body aches and possibly night sweats. Some infusions are harder than others but after those few days the flu like symptoms disappear and you should notice a difference in your Crohn's symptoms. It is a medication that needs to build in your body and typically takes 3-4 doses after the inital loading doses before you start to see max effectiveness. Some people see results right away after the first infusion but that is not typical. Because it suppresses your immune system you will most likely get more small colds or congestion but you can avoid a lot of the side sickness or infections by just being careful who you are around. That does not mean that you have to avoid people, but if you know that someone is sick with something contagious you should ask them not to come over or avoid them. I also wash my hands frequently and use hand sanitizer a lot, which is a good hygiene practice for anyone.
You will probably start out having your infusions every 8 or 12 weeks depending on your doctor and I would make sure that your schedule is light or clear for a couple days after. Remember that not ever side effect that you read about in the brochure or on here is going to happen to you. The drug makers have to list ever possible one to avoid lawsuits in the future. Remember that some of the side effects I have may be more severe because of the large dose I am on or may be different for you because of your other medications. I would ask your doctor to premedicate you with benedryl to avoid any interactions during or after the infusion. It also helps you sleep for a while and helps pass the time. We are about the same weight and you should plan on about 3 hours for each one. As for the weight gain situation, I would not worry about that. Once you start the Remicade, you should be able to taper off of the entocort which is a steroid. That should help you lose some unwanted weight and water retention that all steroids cause. If anyone were to gain weight while on remicade it would be because they were way underweight to begin with. Their bodies would have been malnurished due to the constant D. and now they put on weight because their bodies are becoming healthier. I would expect you to lose rather than gain/

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 7/30/2010 5:03 AM (GMT -7)   
im going in for my 3rd dose of rem. it helped my throat, and my flares in my small bowel aren't as bad but still there, and still have 3-6 bm per morning and afternoon, one thing I've noticed myarms are real itchy so I don't know if rem is causing that, I see my gi before my 3rd infusion, he wants to know how I feel and what not. side effects and all. the itchy arms bothers me, i don't know if my next infusion it will be worse or what to expect. my viens did wierd things on last dose, so that part i'm uncomfortable with. it has helped but it is not the remedy of a lifetime for sure. hope this helps

artist guy


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 7/30/2010 6:31 AM (GMT -7)   
My Daughter has been on Remicade (single, double & currently triple dose) (Imuran & Asacol too) for 7 years now. She has not gained one ioda of weight from it. But then again she really did not gain much weight on Prednisone either. She has the metabolism and genetics of her Dad which means she will probably always be on the thin side.

With the exception of Prednisone, not sure many meds actually really cause weight gain. It is the patient feeling well on the med and being to eat again without ill effects.

I can't really for sure say that Remicade has caused side effects in my Daughter except maybe within the past couple of years as it has been losing its effectiveness, hence doubling and tripling the dose. She has had no adverse reaction to it. When she gets close to the time of needing it her IBD symptoms kick in.

That said, in the long term of being on immunosuppressants, she has developed other health issues.

Remicade for the most part has given her quality of life. Not 100%, but way better than she was for the 4 years of non-remission before Remicade.
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!


leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 7/30/2010 11:03 AM (GMT -7)   
I am 3 doses into my Remicade experience. Like you, I went on it very quickly - I had been hospitalized and prednisone alone was not doing enough for me in my doctor's opinion. I had the TB test and my first dose within 2 weeks of the decision being made.

I was REALLY freaked out about it - I still am, sometimes, if I really think about it - but so far it's been nothing but good. I do still go a lot, especially in the mornings, but things are firmer than they've been in years, and I'm pretty sure that's from the Remicade. Still have pain, but again, it's less than it has been.

Side effects for me have been a stubborn headache for several days after the infusion that Tylenol doesn't do much for. Tired, too, but it goes away in a few days. Had some achey-ness here and there, but again, nothing too bad.

Overall, I think it's helping me, and it's been a fairly good experience so far. I'd give it a try if nothing else seems to be helping you.
30/f
chronic active colitis/unspecified IBD - still awaiting a PillCam
Lialda 1.2 mg 2x/day
Prednisone 10 mg taper in progress
Remicade - 2 infusions so far
Darvocet or Lortab as needed for pain


mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 7/30/2010 2:04 PM (GMT -7)   
Thank you so much everyone.  I was scared ****less about this, and pun was intended as the stress gave me a very rough evening.
 
This whole thing about slowing down/turning off the immune system is..........well I know you guys get it.  I will have to explain it to some people at work.  I got so angry at a friend of mine 4-5 weeks ago as he walked around work saying "I'm sick and getting sicker" and I was like, go home then and he said, no, I'm gonna stick it out.  Well when he came back to work I kinda yelled at him, that my risk was worse than ever with the pills I am taking.  Now that whole situation will be even more so.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 7/30/2010 2:27 PM (GMT -7)   
mdf34,
Take a deep breath and don't overthink this. It is not completely turning your immune system off. It is suppressing it enough to get it down to levels close to what a normal person's immune system is. Because it is suppressing it you will be more succeptible to illnesses but there is no reason to panic. If you know that someone has the flu and is contagious just stay away from them. Or if you know that someone has a contagious infection of sorts, use your better judgement and avoid them until they are better. In reality these are all things that all people should do, but we just have to be a little more awake to situations.

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 7/30/2010 4:14 PM (GMT -7)   
I don't know if this will help any but in the beginning years of Remicade for my Daughter it actually enhanced her Immune system and she was better able to ward off colds, viruses, what have you than she had been able to before Remicade.

Fast forward some years and it seems her Immune system has whacked out from long term use of Remicade and Imuran. A crazy Catch 22. Keeps her IBD pretty much in check, but she ends up with other ailments instead. I sort of attribute her more wacky immune system
to moving to NYC to live and work. Germy subways, working more with the public. Would it be different if she moved back to Michigan? confused
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!

Tara28
Regular Member


Date Joined Apr 2005
Total Posts : 362
   Posted 7/30/2010 8:04 PM (GMT -7)   
the thinking about it suppressing my immune system was hard for me too. I have a lot of anxiety, and I work in an airline reservation office so my co-workers travel a LOT and many of them to all corners of the globe.. so I was pracically hyperventilating thinking of all the weird crap I could catch that would never be dx'd in time because it would be so rare in Canada.. argh. But I ended up okay- the remi didn't help my fistulas but I didn't get any weird diseases either :)
33 years old, dx with Crohn's in 1998. Currently on :
Clofazimine 100mg daily,
Rifampin 600mg daily, and Clarithromycin 2 tabs daily
and Cipralex 10mg/day for anxiety.
Hydroxyzine, percocet, Ativan as needed.
5g pharmaceutical grade Omega 3's, 1000IU's Vitamin D3 daily
2 Perianal fistulas, and 1 more suspected. Crohn's only at end of colon, cecum. Remi, Asacol, Salofalk, Imuran, Humira did nada. Built immunity to long-term Cipro use, which also induced panic attacks.

Lady G
Regular Member


Date Joined Sep 2006
Total Posts : 321
   Posted 7/30/2010 8:57 PM (GMT -7)   
I was in the same boat as you just recently, in May they wanted me started on Remicade and I was freaking out internally cause I know it's a pretty strong drug and all the same things anyone thinks getting something new.  I'm only two infusions in and the nurse said alot say it takes til 4 to see improvement, but I notice a bit already and I'm actually really excited now---since my sick days are getting less and less (knock on wood) already and I like that.  The pain is also significantly down for me too and THAT means alot to me.
The whole shutting down your immune system does worry me as I am a housekeeper in a hotel and you can imagine what all I have to clean and come in contact with but I am pretty sure Remicade isn't the first med with this effect I have been on and so far no problems, it's all good.  Really so far its just like popping any other pills and hoping they work, all the same thing, same risks...except this one takes a little longer then just popping a pill, lol....even the infusions are pretty harmless, I find it good quiet time to just sit and read a book.
29 year old Crohns patient of 10 years. Currently on Imuran and Vitamin B12 injections.

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 7/31/2010 1:11 PM (GMT -7)   
Very great info, thanks.  I forgot to ask, hopefully it will still be seen..........How expensive is this treatment?  I am supposed to do this and keep on the million dollar pills as well.
 
How much is it costing you?
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 7/31/2010 6:21 PM (GMT -7)   
You are going to get a whole lot of different answers as to what cost is. No cost to my Daughter because her insurance picks up the cost. The cost varies widely across the US to my knowledge. The cost varies also whether you have the infusion done at an infusion center or in a GI's office.

Just for instance when my Daughter still lived in Michigan and was getting single dose Remicade in her GIs office the cost to the insurance company was about $2,000. In New York City where my Daughter is now and getting triple dose Remicade at an infusion center, the cost is about $13,800.

Some insurances are picky too, some will pay for Remicade if only done in a GIs office and some will pay only if done at an infusion center. We had to play that game when our Family insurance changed.
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 7/31/2010 9:19 PM (GMT -7)   
The cost really depends on how much you weigh and the dose that you are on. I am around 200 lbs and mine has cost typically just over $10,000 each infusion. Throughout the 6 years it has gone up and down with my weight but was always pretty close to $10,000 each month. There is a copayment program called remistart that you need to get on to help you with the out of pocket. They will pay a huge portion of your out of pocket depending on income. I am not really poor and they still pay $550 of every $700 until I hit my max out of pocket with my insurance. This has actually saved me money because they pay you in the form of a debit card that can only be used for the copay. This makes it so that my insurance still considers it coming directly from me and does not count my actual cash payout from my personal account as my max payout number. In other words it cut my max payout for this year to about 30% of normal because I was being reiumbursed for the other 70% from remistart. This has been nice because I hit that number by april and now everything is covered to my other docs and procedures.

Post Edited (tsitodawg) : 8/1/2010 4:44:18 AM (GMT-6)

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