Remicade Club Support Group

Crohn's Disease Forum

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Niminity, sounds like a reaction to me. You should discuss with your Dr. I had that feeling, followed by a mild chest rash, when Dr. increased my dose. We cut it back a bit, and everything is ok now. If you don't want to cut back, then maybe have your infusions one week closer. Just something for you to think about. But please call and tell your Dr.
 
So Jessie had her third infusion last week it wiped her out bad this time, and now I just found out that the asacol she is taking won't be covered by my insurance anymore after jan 2014, we already pay $97 a month for it and that is through my insurance, can't imagine what it will be without.does anyone know of another med close to asacol??
 
JudithC said:
Niminity, sounds like a reaction to me. You should discuss with your Dr. I had that feeling, followed by a mild chest rash, when Dr. increased my dose. We cut it back a bit, and everything is ok now. If you don't want to cut back, then maybe have your infusions one week closer. Just something for you to think about. But please call and tell your Dr.
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Wow, thanks Judy. I'll call today. Thankfully it passed quickly and I was not alone but I will definitely call today!
 
Hi all, I had success after my first 2 infusions but started getting sick a week before my 3rd infusion. The 3rd infusion stopped the bleeding but otherwise the frequent trips to the bathroom continued. I had a colonoscopy before my 4th infusion and the doctor found that the inflammation had gone done quiet a bit and he was very pleased with what he saw. He suggested that I might also be suffering from some sort of motility disorder that is causing all the bathroom trips.

So I went for my 4th infusion on October 3 and didn't really notice any change until 3 weeks later when I had a full relapse. I contacted my doctor and was told that he wanted to do another colonoscopy but wanted o wait until after my next infusion (infusion is November 20th, scoping is set for Dec 3rd)

I'm really worried about the remicade not working as it should...

In the mean time I'm seeing a Rhumatologist for the arthritis pain I've been having that she suggests could be drug induced lupus caused by the remicade.

I can't catch a break!! I feeling really depressed and worried.:depressed:
 
I am trying to find out if anyone has experienced random muscle and joint pain since being on Remicade. I am on a pain patch, Butrans, which is helping a little. Anyone else had this?
 
I have not experienced that but I am getting lesions that keep breaking out on my scalp as a result of the Remicade. I hope you get some help.

2
 
I've had 7 Remicade infusions for U.C., I was doing great until the last infusion.
I know have to get IV steroids before the infusion. Three days after the last infusion I got a sore elbow in one arm and a stiff finger in the other. A person can develop anti- bodies from the mouse DNA. I hope the steroids work because the Remicade does. Good luck to anyone on Remicade!
 
*HELP*
I was admitted to hospital 3 days ago after I lost consciousness. In the ER they treated me for extreme dehydration and started to look in to the source of blood in my stool (I was diagnosed with CD 2 years ago started flaring last Oct, began Remicade in July but never obtained full remission. 2 weeks ago all of my symptoms returned)
After performing a sigmoidoscopy and a gastroscopy I was told nothing about my upper GI (only that I wasn't bleeding) as fas as the sigmoidoscopy, I was told that I have inflammation in the rectum and the sigmoid colon and that they could not scope any further because of a severe bowel obstruction. They treated me with 4 liters of laxative drink and than discharged me the next afternoon.

Here is the important part: my discharge summary (the paper work that I bring to my GI) says that I must discontinue remicade immediately and I'm not sure why and the big problem... They forgot to mention that I was diagnosed with and treated for a bowel obstruction.

I called the hospital and was informed that they could not fix my discharge papers and that my GI would just need to take my word for it!

I'm still having abdominal pain and I suspect I still have an obstruction.

I don't know what to do.
 
Oh my, Angie's mom,
So you will see your GI Monday? I'm sorry I don't have any wisdom for you right now, but I will say a prayer for you. Hopefully the hospital doc and your GI doc can discuss. I know it's difficult to advocate for yourself (making sure u can get emergency appt quickly, etc) so I hope you have someone to help you with that when you are in pain. I'm sure you're drinking water and hopefully some kind of shake with glutamine, fish oil, probiotics. Sending health and love. Hang on and breathe deep. You are a warrior.
 
Angie's Mom, "Your Dr. will just have to take your word for it?? Really? As if that would ever happen. #1. Call/visit/write your hospital and ask them for a copy of your admission and discharge summary. #2. Ask your Dr. to get you a copy of the written results of all the tests they put you through while you were in the hospital, and READ them. If you still have pain, you Dr. should be able to send you in for CAT scan to determine what is causing your pain. If this sounds like a bit of a rant, well I guess it is because I'm just upset with medical providers who just don't truly CARE about the patients they see and / or will not go out of their way even one tiny bit to help clarify matters for you and others who are going through all of this.
 
JudithC said:
Angie's Mom, "Your Dr. will just have to take your word for it?? Really? As if that would ever happen. #1. Call/visit/write your hospital and ask them for a copy of your admission and discharge summary. #2. Ask your Dr. to get you a copy of the written results of all the tests they put you through while you were in the hospital, and READ them. If you still have pain, you Dr. should be able to send you in for CAT scan to determine what is causing your pain. If this sounds like a bit of a rant, well I guess it is because I'm just upset with medical providers who just don't truly CARE about the patients they see and / or will not go out of their way even one tiny bit to help clarify matters for you and others who are going through all of this.
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Thanks, I already have the discharge summary in hand (it's whats not included that's the problem!) I called the hospital right away and was offered no help at all. I requested that all my files be sent to my family doctor and my gastroenterologist and they said that if a special request is made by my family doctor they would review it and possibly release my files! This hospital has been a nightmare! They doubled the dose of one of my regular medications (pantaloc) and never told me about it or even why they had done it
 
Angie's Mom said:
*HELP*
I was admitted to hospital 3 days ago after I lost consciousness. In the ER they treated me for extreme dehydration and started to look in to the source of blood in my stool (I was diagnosed with CD 2 years ago started flaring last Oct, began Remicade in July but never obtained full remission. 2 weeks ago all of my symptoms returned)
After performing a sigmoidoscopy and a gastroscopy I was told nothing about my upper GI (only that I wasn't bleeding) as fas as the sigmoidoscopy, I was told that I have inflammation in the rectum and the sigmoid colon and that they could not scope any further because of a severe bowel obstruction. They treated me with 4 liters of laxative drink and than discharged me the next afternoon.

Here is the important part: my discharge summary (the paper work that I bring to my GI) says that I must discontinue remicade immediately and I'm not sure why and the big problem... They forgot to mention that I was diagnosed with and treated for a bowel obstruction.

I called the hospital and was informed that they could not fix my discharge papers and that my GI would just need to take my word for it!

I'm still having abdominal pain and I suspect I still have an obstruction.

I don't know what to do.
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Can you describe the pain? Have you had a BM prior to or since your discharge?

I find it amazing that they would discharge you if you're still obstructed!
 
Hi Ribo,

I thought I was having diarrhea prior to being admitted but was eventually told it was not stool but mucous. I haven't had a bowel movement at all since discharge. I also have a lot of trapped gas that I can't pass. My stomach is distended and I get intermittent cramping all around my abdomen but primarily along my left side. I am also having low back pain that I assume is from the pressure.
Unfortunately at the time of my discharge my medical team had just rotated out and a new team came in. I guess it was a case of not our patient not our problem.
 
Angie's Mom said:
Hi Ribo,

I thought I was having diarrhea prior to being admitted but was eventually told it was not stool but mucous. I haven't had a bowel movement at all since discharge. I also have a lot of trapped gas that I can't pass. My stomach is distended and I get intermittent cramping all around my abdomen but primarily along my left side. I am also having low back pain that I assume is from the pressure.
Unfortunately at the time of my discharge my medical team had just rotated out and a new team came in. I guess it was a case of not our patient not our problem.
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Is the pain severe? Like "oh my word, all I can do when a cramp hits is lay here in a fetal position" severe?

Honestly it could be either a bad case of constipation, or it could be an obstruction. If the pain is severe - like a realistic 6 or higher on a 1-10 scale - I would head back to the ER. If they gave you a laxative a day or two ago and you're still severely cramping and not having BMs, that to me is worth reevaluating.

Edit: by the way, if you wind up back in the ER, I would insist they consult with my Gastroenterologist. If its off ours, page them. I want my Gastro involved with all my treat,ends, and they always want to be called if I am in the ER with something relate to my Crohn's.
 
Ribo,

The pain is pretty close to unbearable. My back is also getting much worse. At the last hospital, they refused to contact my doctor because he is not a part of their hospital. They even gave me a hard time about releasing any info above the discharge summary stating that my family doctor would have to put in a request personally. At my insistence I signed a release form for them to send the disc of my colonoscopy and gastroscopy to my GI. They became very agitated with me for continually insisting they involve or consult with him and told me that he could take over my care once they discharged me.
The hospital is a huge nightmare!
 
Can you go to the hospital that your GI is associated with? Is it a matter of distance? I'm really sorry you're going through this. It is so important that the doctors coordinate your care and you know what to do in case of an emergency. An obstruction sounds like an emergency. Sending prayers.
 
Angie's Mom said:
Ribo,

The pain is pretty close to unbearable. My back is also getting much worse. At the last hospital, they refused to contact my doctor because he is not a part of their hospital. They even gave me a hard time about releasing any info above the discharge summary stating that my family doctor would have to put in a request personally. At my insistence I signed a release form for them to send the disc of my colonoscopy and gastroscopy to my GI. They became very agitated with me for continually insisting they involve or consult with him and told me that he could take over my care once they discharged me.
The hospital is a huge nightmare!
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If its that bad you probably need to return to the ER, as much of a pain as that sounds. As BlessingsK posted, if there's another hospital that your Gastro works with, that may be better, but the bottom line is if the pain is that severe, you're likely still obstructed and that requires attention.

Good luck and let us know what you decide to do and how it turns out. But I really wouldn't wait until tomorrow or later in the week if you truly think you're still obstructed - that requires attention before it becomes even more serious!
 
Ribo said:
If its that bad you probably need to return to the ER, as much of a pain as that sounds. As BlessingsK posted, if there's another hospital that your Gastro works with, that may be better, but the bottom line is if the pain is that severe, you're likely still obstructed and that requires attention.

Good luck and let us know what you decide to do and how it turns out. But I really wouldn't wait until tomorrow or later in the week if you truly think you're still obstructed - that requires attention before it becomes even more serious!
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Thanks,
I made it through the night. I'm just waiting for a call back from my gastroenterologist right now for instructions.

Where I live in Toronto there are close to ten hospitals! The one I went to just happens to be 5 minutes down the road while the others are about 15. Rest assure, it's one of the others I'll be headed to!

Thanks so much, I will keep you updated.
Stephanie
 
Hi all,
I've had my first 3 loading doses which worked wonders, and now I am waiting for my 4th and I'm on week 6 and symptoms are coming back... ugh. Happen to anyone else? Next week can't get here fast enough. They bumped it up to week 7 for me.

Thanks all for reading! I'm glad I found this forum.
 
My son had awesome results throughout the loading doses but when we moved to the 8 week infusion stretch he would start having symptoms creep back in. We shortened his dose schedule to 6 weeks, then upped his dose and eventually added methotrexate.

Also you may have to give it a bit to build up in your system. If you find once you have gone through the loading doses that symptoms keep returning make sure you update your GI. He may want to run a remi levels test on you to make sure you aren't burning through or metabolizing the Remi to fast. He may also do an antibodies test to ensure you aren't building antibodies to Remi.

Good luck and I hope it brings you relief!
 
ddbauder said:
I am trying to find out if anyone has experienced random muscle and joint pain since being on Remicade. I am on a pain patch, Butrans, which is helping a little. Anyone else had this?
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Yes, my last bout with joint pain was particularly bad! It moved around all my joints, but was the worst in my knees.

I also sometime have a what feels like a muscle weakness at times in my arm(s).

I was really frustrated and down going through that, but after talking to my GI, I have a more positive attitude...my main two problems are responding really well to the Remicade, so I just have to treat these symptoms the best I can and deal with it.

Hugs!! There is no end to the things we go through!
 
Hi all...I am about to join the club very soon. A new GI I just saw wants me to do a sigmoid something of another to take a biopsy to make sure I don't have some infection (R something) from being on Pentasa and Imuran. If that comes back neg then I start them. I go get the TB and HEP test this coming week.

My questions are:
1-I have HPV that causes cervical cancer..will the remicade increases that cancer risk??
2- have any of you had issues with bad reactions?? IM SO SCARED OF THAT
3- should I have a driver the 1st time?
4- are the infusions done in a hospital?
5- has anyone had a safe pregancy and healthy baby on remicade?
6- has anyone experienced body aches prior to treatment had relief from remicade?

Sorry...my doc said she would go more into it after dec 3rd (the sigmoid something of another lol)
 
Welcome. The infusions are done in a hospital. As far as bad reactions, everyone is different. I have been on Remicade for three years. This year, I have developed a couple of lesions on my scalp as a result of the Remicade but it is very rare.
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Fosterfamily2303 said:
Hi all...I am about to join the club very soon. A new GI I just saw wants me to do a sigmoid something of another to take a biopsy to make sure I don't have some infection (R something) from being on Pentasa and Imuran. If that comes back neg then I start them. I go get the TB and HEP test this coming week.

My questions are:
1-I have HPV that causes cervical cancer..will the remicade increases that cancer risk??
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don't know the answer to this one, sorry - I do know it can increase the chances of lymphoma, but the odds are still relatively small
2- have any of you had issues with bad reactions?? IM SO SCARED OF THAT
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I didn't have a bad reaction, but I did contract fungal pneumonia that led to my doc ending my treatments. You will be immunocompromised (or further immunocompromised) and do need to take proper precautions.
3- should I have a driver the 1st time?
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you probably don't need to do that
4- are the infusions done in a hospital?
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some docs do them in their office, others refer you to the hospital. My doctor has a room for infusions with lazy boy recliners for the treatments and a nurse on his staff that pretty much spends her days doing infusions.
5- has anyone had a safe pregancy and healthy baby on remicade?
6- has anyone experienced body aches prior to treatment had relief from remicade?

Sorry...my doc said she would go more into it after dec 3rd (the sigmoid something of another lol)
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Can't answer the other questions - but I can wish you the best of luck with your treatments!
 
Jessie is flaring again her next remicade isn't until dec 23, they put her on the flagel yesterday hoping it helps poor kid has had enough. While at dr yesterday he told me her cat scan that was done while in hospital showed she has malformation of the intestants so now she needs surgery to correct it, told me it has nothing to do with the colitis, I am not understanding how it couldnt
 
Jessie's mom said:
Jessie is flaring again her next remicade isn't until dec 23, they put her on the flagel yesterday hoping it helps poor kid has had enough. While at dr yesterday he told me her cat scan that was done while in hospital showed she has malformation of the intestants so now she needs surgery to correct it, told me it has nothing to do with the colitis, I am not understanding how it couldnt
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I'm so sorry to hear, I don't know what to say but I will keep Jesse in my thoughts while she goes through this.
 
poor thing. hope she feela better!! i myself have been thrpwinv up, visiting the toilet amd have upper belly pain. I hope everyone suffering gets relief soon! Saying a prayer!
 
Hi All:)
My son had his first Remicade infusion last Friday and all went well, but today a full week later he has a headache and feels a bit dizzy.
Has this happened to any of you AND what did you do about it.
I gave him some Tylenol but it did not help.:(
I am desperate for this to work for him:ybatty:
 
No they don't pre medicate unless you have some type of problem during the infusion. The infusion itself really went well. After we were done I got him lunch & offered to let him take the afternoon off of school to "just chill" & he wanted to go to school...felt that good
 
That happened exactly a week after my first infusion too. I got really dizzy and almost passed out at one point. I called my doctor the next day and they said it wasn't a reaction to the remicade. I had my second infusion about two weeks ago and nothing like that happened again. I think it was just a fluke thing. My doctor doesn't give me any medications before my infusion but they tell me that one hour before, take 2 Tylenol and 2 Benedryl. I think you should have your son do the same. Better safe than sorry. Plus he'll get an awesome nap while getting the infusion!
 
Thanks Niminity. I think you and ronroush7 are right, he should be pre medicated. Why chance waiting for something to happen...I don't understand his dr office sometimes. I'm glad to hear that only happened to you once.
 
Gmama - My only other thought is low blood pressure. Definitely pre-medicate before infusions, especially with kids. Why risk it?
 
Hi Mehita! You are right, why risk it especially with a kid. We did try to take his BP with a machine I have here at home but I'm not sure how accurate the reading was because his arm is so skinny I didn't feel like I could get it tight enough.:)
 
So we are still in hospital since the 29 she has been on Iv steroids,flagyl, Iv fluids and it's no better!!! After all this steroids should t she be she has had 6 days of steroids and 8 days of flagyl, they are doing a scan with dye tomorrow to check pancreas and Friday a endoscope and colonoscopy.so to prep tomorrow nose tube because she refuses to drink prep,today she went 7 times!!!! And lots of blood and fever yesterday am and today am, I am so sick about this she just can't catch a break.she has had 3 remicade treatments already, I swear she was better on mp6 then the remicade..any help from other experiences will help
 
Jessie's mom said:
So we are still in hospital since the 29 she has been on Iv steroids,flagyl, Iv fluids and it's no better!!! After all this steroids should t she be she has had 6 days of steroids and 8 days of flagyl, they are doing a scan with dye tomorrow to check pancreas and Friday a endoscope and colonoscopy.so to prep tomorrow nose tube because she refuses to drink prep,today she went 7 times!!!! And lots of blood and fever yesterday am and today am, I am so sick about this she just can't catch a break.she has had 3 remicade treatments already, I swear she was better on mp6 then the remicade..any help from other experiences will help
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I am so sorry. I will pray.
 
So Jessie's colonoscopy was not as good as I hoped doctor told me it is totally colitis of the whole colon, showed me a picture and the whole colon is bright red.march was her last one and it was almost flesh color..I don't understand can it turn so bad in such a short time..well now we are still here, they put her on Iv cipro and still on Iv fluids,Iv steroids and Iv flagyl, they are also putting her back on 6mp.she has had 3 remicade infusions and I am assuming it is not working ,I am at a loss with all of this,any info from anyone will help
 
So sorry you and Jessie are going through all of this...big hugs sent your way!
I don't know enough about managing colitis to help, but I can totally sympathize with you. I am always second guessing everything I do with my son. It is so hard to know what's right especially when you see your child needing help...Ugh! I HATE THIS DISEASE! Hopefully by the time you leave Jessie will be on the mend and you will have a clear cut plan for the direction you are going to take with her. Hang in there...she is so blessed to have you for her mom:)
 
So I had my first infusion 3 days ago. They never pre medicated me and of course I had an allergic reaction. After some Benadryl I was able to finish the rest of the infusion and was fine.

On the way home I experienced chest pain which went away the next day.

My question is..I have been having issues since with remembering things , hearing (it's like everything on quiet ) and not being able to hold things without dropping. Also my hair and eye lashes are falling out.

Has anyone delt with any of thus? Mt next infusion is December 26th
 
First and foremost, CALL YOUR DOCTOR. I know it's Saturday, but call him anyway, and make sure his answering service knows that your call needs to be returned today. You should not be having these side effects and should really discuss with him whether to have another infusion on 12/26. Remicade can help a lot of people, but sometimes you are personally too sensitive to the med to be able to take it.
 
Jessie's mom said:
So Jessie's colonoscopy was not as good as I hoped doctor told me it is totally colitis of the whole colon, showed me a picture and the whole colon is bright red.march was her last one and it was almost flesh color..I don't understand can it turn so bad in such a short time..well now we are still here, they put her on Iv cipro and still on Iv fluids,Iv steroids and Iv flagyl, they are also putting her back on 6mp.she has had 3 remicade infusions and I am assuming it is not working ,I am at a loss with all of this,any info from anyone will help
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Hi Jessie's mom,

First of all, I'm so sorry you all are going through this. I too have UC. I've been in a flare for 13 months now. I spent a lot of time in hospital over the last year as well. I've had more scoping's than I can even remember and over the year I too had results ranging from my whole colon inflamed to just my rectum. I started remicade in January and despite this I still remain in full flare. In addition I have developed drug induced lupus!
Long story short, I'm meeting with a surgeon in the new year to discuss my options.
I can't even imagine what your going throughout especially given Jessie's apparent inability to understand whats happening and to inform doctors about her condition. I'll keep you in my thoughts and prayers and hope for a speedy recovery for her.
 
Just came across this forum. I've been on Remi since January. I was hospitalized shortly after the third infusion and they doubled the dose. I get infusion every 5 weeks. It has helped with the stomach pain, but I still have runny stools, fatigue and increasingly painful arthralgia and headaches. My next infusion is the 19th. I have bouts of balance problems, memory issues and concentration. B12 shots help mitigate these symptoms. Take multivitamin and vitamin C, and occasionally go on 2 month regimen of vitamin D. Dealing with these symptoms works since I can now eat and have begun putting weight back on.
 
Fosterfamily2303 said:
So I had my first infusion 3 days ago. They never pre medicated me and of course I had an allergic reaction. After some Benadryl I was able to finish the rest of the infusion and was fine.

On the way home I experienced chest pain which went away the next day.

My question is..I have been having issues since with remembering things , hearing (it's like everything on quiet ) and not being able to hold things without dropping. Also my hair and eye lashes are falling out.

Has anyone delt with any of thus? Mt next infusion is December 26th
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Let your doctor know. Supporting you.

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Yes have had bone soreness and flu like feelings since I've been on Remicade! My next one is Jan 15. After that there will be no more ins co-pay is $3700 can't do it. That's with remi-start helping me. The drug it self is ok but my fistuales have shrunk but still leak. Still go about 10 times times but will say feel a little better. All for not can't afford co-pay oh well!!!!!!!!!!
 
My daughter is receiving her first Remicade treatment on Dec 27th (she was just recently diagnosed. Dr is going strait to Remicade). She's had a fistula since June. It was operated on in November, Dr laid it open as well as a second incision for further drainage. It still hasn't healed. Will the Remicade heal it and how long will it take. This thing is a nightmare!!
 
I got C Diff after my 3rd dose of Remicade. So my first 8 week span of Remicade was delayed to 9 weeks. I got my Remicade a week ago after I had 2 negative C Diff tests even though I felt like it wasn't done. I don't feel a huge difference yet, and the past few weeks my stools have been narrower and I don't always feel "empty" after I go. I'm worried the Remicade has already worn off, or maybe it's just because of the 9 week span and irritation from C Diff? I have 3-4 bm's a day and they are not runny but soft. I worry about a stricture but I was just scoped 5 months ago.
 
Irish86 said:
Yes have had bone soreness and flu like feelings since I've been on Remicade! My next one is Jan 15. After that there will be no more ins co-pay is $3700 can't do it. That's with remi-start helping me. The drug it self is ok but my fistuales have shrunk but still leak. Still go about 10 times times but will say feel a little better. All for not can't afford co-pay oh well!!!!!!!!!!
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I don't know if they do it in the states, but here in Canada BioAdvance, who is the company responsible for remicade has a financial assistance program that if you can't afford even with the co pay, they subsidize it further. I go every 4 weeks and my plan covers almost all but $88 and I told them I couldn't afford $88 that I could afford $25 and so that is what I pay. It's something to look into.
 
So far so good.

:sign0144:
Hi everyone,

I just had my second Remicade infusion 12-20-2013. I noticed a difference the day after my first treatment. Hopefully this continues to work for me, I had a terrible reaction to Imuran, Serum Sickness, is what they called it. I also have to take Methotrexate to avoid the same reaction to Remicade.

The Benedryl does allow for a nice nap during the infusion process.
Fingers crossed.
 
Here's hoping.

Makena's Mom said:
My daughter is receiving her first Remicade treatment on Dec 27th (she was just recently diagnosed. Dr is going strait to Remicade). She's had a fistula since June. It was operated on in November, Dr laid it open as well as a second incision for further drainage. It still hasn't healed. Will the Remicade heal it and how long will it take. This thing is a nightmare!!
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I also had a Fistula since June, and after my first treatment of Remicade, the swelling went down within a couple of days and the drainage ended almost the very next day. I hope it works for her the way it has so far been working for me.

I hope this helps and makes you and your daughter feel better SOON.

Rob.
 
I hear ya.

Fosterfamily2303 said:
So I had my first infusion 3 days ago. They never pre medicated me and of course I had an allergic reaction. After some Benadryl I was able to finish the rest of the infusion and was fine.

On the way home I experienced chest pain which went away the next day.

My question is..I have been having issues since with remembering things , hearing (it's like everything on quiet ) and not being able to hold things without dropping. Also my hair and eye lashes are falling out.

Has anyone delt with any of thus? Mt next infusion is December 26th
Click to expand...

Did any of the things you mentioned occur BEFORE the Remicade? I was just recently diagnosed with Crohn's (August, 2013) and just started on Remicade 3 weeks ago. Some of the things you mentioned I have noticed before the treatments started.

Remembering seems to have gotten worse in the past year or so.
My hearing seems like TV,radio etc.... has to be higher volume, even though I had my hearing tested and they say it is perfect for someone in my age group.
Hair loss actually started for me in my late teens, diagnosed with Alopecia, and had hair loss on entire body. Since starting different treatments for the Crohn's, my hair has been growing back. YAY !!!

Hope this helps you.

Rob.
 
Hi everyone! I am suppose to have some tests done later this week to make sure I'm ok to start remicade. I was wondering what were your symptoms right before starting the infusions? Did you have mostly just pain or other issues as well? I have a few different problems but fatigue is one issue that I am really hoping will get better.
 
Remicade helped with the inflammation so pain was reduced and fistula healed. It did not help with fatigue. That was and is mainly B12 deficiency for me. Have they checked your levels? Iron, B and C vitamin, magnesium, etc?


Sent from my iPhone using Tapatalk
 
RosieM said:
Hi everyone! I am suppose to have some tests done later this week to make sure I'm ok to start remicade. I was wondering what were your symptoms right before starting the infusions? Did you have mostly just pain or other issues as well? I have a few different problems but fatigue is one issue that I am really hoping will get better.
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I had the really bad pain, inflammation, crazy bathroom stuff, but also fatigue. My doc said that I wasn't anemic and my B12 was fine so I couldn't figure out why I was so tired. A few days after my first infusion everything but the tiredness was better. After about a week or maybe after my second infusion I started getting my energy back. I was drinking Ensure and starting solids again and I was able to absorb the nutrients. I still get really tired here and there but nothing like before the meds. Hope you find relief!
 
Rob73 said:
Did any of the things you mentioned occur BEFORE the Remicade? I was just recently diagnosed with Crohn's (August, 2013) and just started on Remicade 3 weeks ago. Some of the things you mentioned I have noticed before the treatments started.

Remembering seems to have gotten worse in the past year or so.
My hearing seems like TV,radio etc.... has to be higher volume, even though I had my hearing tested and they say it is perfect for someone in my age group.
Hair loss actually started for me in my late teens, diagnosed with Alopecia, and had hair loss on entire body. Since starting different treatments for the Crohn's, my hair has been growing back. YAY !!!

Hope this helps you.

Rob.
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No those are all symptoms that started after Remicade. I am only 30 and healthy beaides this disease. Its been two weeks and i have all the symptoms but the chest pain..that went away in 24 hrs. I go back today for 2nd infusion...hoping for the best. I am being pre medicated this time. O. ..and when i say hair faling out..Im not talking about the usualy 100 hairs a day..Im talking about clumps! the smallest clump of hair i had was 39 haors..i never counted the bigest as it was ALOT. My eye lashes fall out at 12+ a time I cant belive i still have eye lashes..my hair is DEF. thinning out as i loose it.
 
Remicade didn't take my joint pain away but it did put the inflammation in my gut down. My rheumatologist prescribed Sulfasalazine with the Remicade and that took the joint pain away totally. Have you seen a rheumatologist? I was lucky to get one that was aware of Crohns related joint pain & didn't give up till it was gone.
 
Struggling with my decision in regards to Remicade treatment.

To go on Remicade or not. I have Crohn's (diagnosed in 1983) but have been very fortunate through the years with minimal flare ups until the past few years in which I have had numerous flare ups. I also developed a fistula which indicates advance stage of Crohn's. I am on Pentasa and things are calm and have been for a few months. I have been on Remicade before but stopped it once I started feeling better. I feel really good right now. Not having symptoms other than fatigue and occasional loose stool. It is being suggested that Remicade is needed and for the rest of my life. I do not want to put any more drugs in my body especially when I am feeling good right now. I see the stories on here and how much worse Crohn's can get so I am wondering if I should hold off or go ahead and start it up again. If you have been on Remicade for a while, what kind of relief are you getting and do you have to be on it for the rest of your life? I am curious of the long term effects. I am 48 years old and feel I am still relatively young so I don't want to start something unless I absolutely have too. Thank you for any feed back you may wish to share with me.
 
MaryEllen, the fistula may close with Remicade. Have they done procedure under anesthesia to confirm fistula or insert seton? Does the fistula have fecal drainage? A lot to weigh with Remicade ... But it's a great drug when it works
 
MaryEllen, my daughter just started remicade treatments and I asked her Dr if she'll only take it until she gets better. His response was, if you stop medicating after improvement your body will become immune to it once you start up again after a flare. I would stick to it. Hopefully in the next few years a cute will be found but until then, if your body is responding well to it, then I would continue it.
 
So I have a painful lump on my groin area that developed yesterday, 2 days after my last remicade. I will be going to the Urgent Care center in the morning because I'm worried about it. Anyone have any ideas? Hopefully it's not cancer.

I am also dealing with Shingles right now, that fully developed 3 days ago. It's on my butt too. I don't think there could be a worse area. Safe to say I'm not in good shape at the moment, lol.

Tread carefully with Remicade. I've been getting this stuff for a long time, and I always knew about the consequences. I have no one to blame but myself.
 
BlessingsK said:
MaryEllen, the fistula may close with Remicade. Have they done procedure under anesthesia to confirm fistula or insert seton? Does the fistula have fecal drainage? A lot to weigh with Remicade ... But it's a great drug when it works
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It did close in 2010 with Remicade treatment. I have not had issues until just a month ago when there was drainage and I could feel it. (it's located at the base of my vagina) I was put on two antibiotics which quieted things down.

I want Remicade as an option when I absolutely need it since I know it works for me. As of now, I have not developed antibodies. Because I feel good and my symptoms are only fatigue and minimal joint pain, I want to wait.

Thank you for your input.
 
Poppysocks said:
So I have a painful lump on my groin area that developed yesterday, 2 days after my last remicade. I will be going to the Urgent Care center in the morning because I'm worried about it. Anyone have any ideas? Hopefully it's not cancer.

I am also dealing with Shingles right now, that fully developed 3 days ago. It's on my butt too. I don't think there could be a worse area. Safe to say I'm not in good shape at the moment, lol.

Tread carefully with Remicade. I've been getting this stuff for a long time, and I always knew about the consequences. I have no one to blame but myself.
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Sorry to hear what you are going through. I hope you are feeling better soon. I was fortunate with Remicade the first two times with no effects that I could tell.

Are you saying the Shingles, and this lump are caused by Remicade? I am curious what you find out. Good luck to you.
 
Poppysocks said:
So I have a painful lump on my groin area that developed yesterday, 2 days after my last remicade. I will be going to the Urgent Care center in the morning because I'm worried about it. Anyone have any ideas? Hopefully it's not cancer.

I am also dealing with Shingles right now, that fully developed 3 days ago. It's on my butt too. I don't think there could be a worse area. Safe to say I'm not in good shape at the moment, lol.

Tread carefully with Remicade. I've been getting this stuff for a long time, and I always knew about the consequences. I have no one to blame but myself.
Click to expand...

I know that we have glands in our groins. Often times when they swell it indicates infection. Think about when you have swollen glands in your throat, usually it means a throat or ear infection. I hope that helps put your mind at ease a little.
 
Thanks Makena's Mom

Makena's Mom, thank you for your response. I have been told the same that is why I was contemplating waiting until I absolutely need it. I hope your daughter is doing better.
 
Angie's Mom said:
I know that we have glands in our groins. Often times when they swell it indicates infection. Think about when you have swollen glands in your throat, usually it means a throat or ear infection. I hope that helps put your mind at ease a little.
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Hey, thanks for the support guys.

This is pretty much what the doctors said. As the swollen gland in my groin area was caused by the shingles infection today. Makes me feel a little better.
 
MaryEllen said:
Sorry to hear what you are going through. I hope you are feeling better soon. I was fortunate with Remicade the first two times with no effects that I could tell.

Are you saying the Shingles, and this lump are caused by Remicade? I am curious what you find out. Good luck to you.
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I would say most definitely Yes. Shingles, for the most part, only appears in older people, and people who are immuno compromised.
 
My son will have his first remicade infusion on Thursday. I'm excited that this will work and scared that it won't or he will have awful side effects
 
I had my fifth infusion today and praise God, it is working really well to keep me in remission and hopefully finish closing fistula. I really appreciate Remicade and wish you all the very best. I take the day off work so I can rest after infusion, but gratefully, it has gone very smooth.
 
well it seems after my 4th remicade infusion I've started to flare again, my diet definitely got a bit too exciting, with the reintroduction of bread and some sugars... makes me wonder if the remicade or diet was keeping the symptoms away before... either way looks like i'm onto the next treatment :(
 
Joshuaaa,
Sorry to hear of flare. Very sorry. Darn it. Yes, that Breaking the Vicious Cycle book by elaine gotschall has been my template - it takes some getting used to, but I've found a lot of paleo blogs/FB pages that have helped me with recipes, encouragement, etc. One is autoimmune paleo by Mickey Trescott. She has a really good cookbook that is coming out in print, but that I bought as an ebook and it is great on the ipad. Very, very thorough with four week menu plans for Crohn's and autoimmune conditions. I think sugar and anything that spikes insulin (processed foods, grains) are particularly tough on us. Maybe we just don't have the genes for it - grains are only 10,000 years old and our DNA is caveman and 2 million+ years old. I really hope you feel better soon and maybe get support of nutritionist or someone to help you bc I know it's hard to change your diet, but I think it's potentially a big part of the answer.
 

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