Remicade Club Support Group

Crohn's Disease Forum

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I think re-check c. Diff then consider a longer, slower taper of prednisone. But I'm not a GI doc, just saying that based on my experience. I did 30 day prednisone taper that worked well. Sending prayers for diarrhea to end, update us on what GI says. Hang in there Jessie's mom.
 
Yes, it sounds as if the pred was masking the inflammation. That is the thing with pred it knocks down the inflammation while they are on it but once you taper the inflammation is likely to come back. So it sounds like the pred was dampening the inflammation and the Remicade hasn't had enough time to take over. A lot of people find that if their maintenance med hasn't had time to reach therapeutic levels their symptoms will return as they taper the pred.
 
Jessie's mom, I can only speak from my experience. What I can tell you about my case is that it took me 10 months to successfully taper off of prednisone. I had so many set backs! Every time we moved too quickly the diarrhea and bleeding ame back with a vengence. In the end the only thing that worked for me was tapering by 1/2 a tablet every 2 weeks. I felt I'd never get off of it but I did!

Now as for remicade, I started in July and have now had my 3 loading doses. I just went for a colonoscopy and a gastroscopy. The disease that originally was spread all through my colon and stomach is now under control except for in my rectum.

I have another infusion October 3rd and I'm optimistic that it will help even more.

Take a lot of deep breaths, take note of all the changes happening from day to day and keep telling yourself that she will get better.

Best of luck!
 
I felt really exhausted after infusions until one of my nurses infused an IV along with the Remicade, and I feel much better now. You might give it a try and see if it helps, just ask them to do it when they bring the Remicade in.
 
I have been on Remicade for 5 years....every 8 weeks. When i went for the last infusion it was middle of winter here in Australia and I had just gotten over a headcold. After the infusion the headcold almost seemed to come back and I am now 10 weeks later and I am still sneezing and blowing my nose after I sneeze. I feel fine, but it almost seems like I have developed hayfever with the onset of Spring here....has anyone else experienced anything like this? I am wondering if i should avoid the next infusion, which I have already delayed by 2 weeks. thanks for your help.
 
It should, keeping my fingers crossed for you! Just a little advice, have the nurse infuse the IV bag of fluids throughout the infusion of Remicade and you will feel a lot better. All of us tend to get a bit dehydrated and it really helps me to do it this way. *hugs*
 
Second dose a hour into it she had side effects,stopped it and gave her a shot of steroids and more Benadryl ...sending us home and will try again at a slower rate,it wasn't till they raised the rate till she was having problems breathing
 
Yes they gave her Benadryl before and Tylenol ,then when reaction started they gave her more as well as a shot of steroids..she was fine during first one in hospital I don't understand
 
Darn it, I'm sorry to hear Jess was having trouble breathing during second infusion. The nurses told me that was the most likely one that would cause a reaction (not the first time, but once the drug was in, I guess the body could develop antibodies and then when it sees it a second time, it can react). I am praying for Jess' highest good. That girl has been through enough already. May her body heal, may the drugs work, may your family have rest. In God's name, I pray.:hug:
 
My dr told me the same well actually I read it somewhere that if reaction is seen its during the 2nd one and he agreed. It wasn't until the drip was increased so I see him Monday and he said my option are to try again at slower rate if this still don't work we can try and get Humira approved,or we can go back n the 6 mp which she was ok on just the ulcers were not healing and becoming more and more so I don't understand why going back on that would help, if that was the case why did we take her off and put her into the horrible flare..I am just feeling horrible for this kid she has missed 7 out of 14 days of school..and this prednisone omg she is so puffy and won't stop eating we had to try and curbed that because it is getting out of control,and he told me today she gonna be on it for at least 8 more weeks !!!
 
I have heard of people successfully going from remicade to humira... Praying for you guys. And sorry about the prednisone. I always ask to try to find lowest dose that keeps symptoms at bay, maybe check w dr if it would be possible to just shave off 5mg? That is one powerful drug. God Bless.
 
My grand daughter has just had her first Remicade treatment today. They did give her Benadryl first and ran an IV at the same time. I sure hope Jessie feels better as soon as possible. We have also been dealing with the worst flair ever and 3 ER visits and days in the hospital in just 2.5 weeks. I am worried about her 2nd treatment. I pray that Jessie will level off and have some remission time soon!
 
Mountaingem said:
It should, keeping my fingers crossed for you! Just a little advice, have the nurse infuse the IV bag of fluids throughout the infusion of Remicade and you will feel a lot better. All of us tend to get a bit dehydrated and it really helps me to do it this way. *hugs*
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Thank You
 
Jessie's mom said:
My dr told me the same well actually I read it somewhere that if reaction is seen its during the 2nd one and he agreed. It wasn't until the drip was increased so I see him Monday and he said my option are to try again at slower rate if this still don't work we can try and get Humira approved,or we can go back n the 6 mp which she was ok on just the ulcers were not healing and becoming more and more so I don't understand why going back on that would help, if that was the case why did we take her off and put her into the horrible flare..I am just feeling horrible for this kid she has missed 7 out of 14 days of school..and this prednisone omg she is so puffy and won't stop eating we had to try and curbed that because it is getting out of control,and he told me today she gonna be on it for at least 8 more weeks !!!
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good luck hate to see the young ones hurt
 
Please say a prayer for Jessie today we are giving remicade one more try ,praying for no reactions.they are not gonna do the drip over 100 and have her hooked up to everything so hopefully we don't have repeat of what happen last time
 
My son whom is 3 yrs old just had his 12th remicade infusion. Around his 6th , he started having reactions. He would start to cough and get feverish - sweating - blood pressure rises - oxygen levels drop - then he would end up vomiting. They keep a good eye on him and he has benedryl and hydrocortisone before his infusion and they do it over a 4-6 hr period depending how he does. I do not like these reactions, and it is scary! We were up to going every 8 weeks.
Unfortunately, 3 months ago he had a flare up and we had to end up going for his treatment a week early. It had been 8 months since any noticeable bleeding and they thought that he might of been in remission. Then two weeks later we had to go back again.. and then a week later again.
Does anyone know why this might be happening? The doctors just told me that he probably needs it more frequently.. but that's all they said.
I just don't understand why he is starting to have symptoms after all this time.. can he be building a immunity to the remicade? He is not on any other meds or diets at the moment besides iron supplements.
 
mommyof3angelz, his body could be creating antibodies to the Remicade, there is a test, the HACA antibodies test, that can test for antibodies. These antibodies can result in allergic reactions during infusions and loss of response to the drug.

One possibility is that loss of response is due to an immunologic mechanism, whereby the patient mounts an immune response to infliximab, thus forming anti-infliximab antibodies. Multiple studies in CD patients have linked the development of anti-infliximab antibodies with loss of treatment response and shorter duration of response
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source

here is another:

Response to infliximab after repeated infusions sometimes is lost if the patient starts to develop antibodies to the infliximab (which attach to the infliximab and prevent it from working).
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source

You could ask the GI about the antibodies test there is also a test that can determine the levels of Remicade the patient has, so before the next infusion this could be tested to see if he is burning through the remicade to fast but I would be concerned about giving the doses closer together if he is having allergic reactions.
 
Hi all,
Does anyone know how soon they can test for HACA antibodies? My GI said too soon for me to test that because only had 2 infusions.

Side Note: my joints have been aching/hurting since 2 weeks after second infusion. They aren't swollen, just hurt. GI ran tons of Rheumatology tests all returned normal. So, I'm clueless. Does that mean not a side effect of Remicade? GI wants to increase my 3rd loading dose. Hope it helps.

Thanks in advance for support/insight!
iriechic
 
iriechic said:
Hi all,
Does anyone know how soon they can test for HACA antibodies? My GI said too soon for me to test that because only had 2 infusions.

Side Note: my joints have been aching/hurting since 2 weeks after second infusion. They aren't swollen, just hurt. GI ran tons of Rheumatology tests all returned normal. So, I'm clueless. Does that mean not a side effect of Remicade? GI wants to increase my 3rd loading dose. Hope it helps.

Thanks in advance for support/insight!
iriechic
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I ended up with sever joint pain after my 3rd dose. My GI doctor told me that if it didn't subside within a few weeks it probably was not a side effect of the remicade. I was told that people with inflammatory diseases like Crohn's and colitis are prone to other inflammatory illnesses (Like arthritis, and there are hundreds of types) and am being sent to see a Rhumatologist (keep in mind that these specialists treat ALL types of arthritis, not just RA)
I hope your 3rd dose helps! I go for my 4th infusion tomorrow, wish me luck!
 
YESSSSS!!! Wishing you the best on your 4th infusion, Angie's Mom! I will be thinking of you tomorrow. Sending you positive energy, prayers and excellent treatment response from the Remicade. Let us know how it goes, or PM me if you get a chance (I'm better responding that way, sometimes forget to look at these forum posts). Would love to stay in touch. I'll be thinking of you tomorrow!

Thanks for sharing about your joint pain. But sorry you've experienced it. Is yours pretty painful or do you take anything for it? I never had such joint pain before in my life, that's why I wonder about the Remicade. My GI gave me a pain med for it but I'm not a fan of taking a narcotic. Hoping the Remicade helps us all.
 
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Jo Ann said:
My grand daughter has just had her first Remicade treatment today. They did give her Benadryl first and ran an IV at the same time. I sure hope Jessie feels better as soon as possible. We have also been dealing with the worst flair ever and 3 ER visits and days in the hospital in just 2.5 weeks. I am worried about her 2nd treatment. I pray that Jessie will level off and have some remission time soon!
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I am sorry about your grandchild,this disease is awful and has a mind of its own I will be praying for her speedy recovery,s Jess is doing ok, her first treatment was while in hospital during her flare, the second was last thur didn't go to well she had reaction a hour into it and they stopped it .they did it today in the ICU unit at a slower rate and better monitored , she did well and is resting well..I will be praying your grand daughter gets relief as well soon
 
iriechic said:
Hi all,
Does anyone know how soon they can test for HACA antibodies? My GI said too soon for me to test that because only had 2 infusions.

Side Note: my joints have been aching/hurting since 2 weeks after second infusion. They aren't swollen, just hurt. GI ran tons of Rheumatology tests all returned normal. So, I'm clueless. Does that mean not a side effect of Remicade? GI wants to increase my 3rd loading dose. Hope it helps.

Thanks in advance for support/insight!
iriechic
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Jessie had that test today and she only had the one full treatment on sept 12 and then the one where she only got a 1/3 before reacting,and they drew blood for that test today before she got infusion
 
Thought I'd post a quick update. After my second remicade treatment, while still on prednisone as well as 6MP, I wound up contracting pneumonia. Docs concluded it was likely due to my immunosuppressed state. Woke up one morning running a 103.7 fever.

Fast forward two weeks in the hospital and I'm finally home again. Weak, but able to get around for the most part. I've got the next week basically blocked for recuperative rest and trying to build up my strength.

GI and I have concluded we're going to try sticking to strictly the 6MP and see how my bowel handles that, but the remicade is out. I'm also down to 10mg of Pred per day and tapering that to hopefully zero over the next two weeks.

This one really kicked my butt, I have to say. It took them about five days to get the fever under control. I was treated with four different IV antibiotics, plus an anti fungal that beat up my kidneys, an anti-viral, and of course more steroids (why not, they help everything).

Scary stuff. Every time I would get out of bed my heart rate was shooting up to the 150 range. It's only been since probably Wednesday that I was finally able to start some physical activity. I've read about the dangers of immunosuppressants but this experience really opened my eyes.

Anyway, thought I'd share, now that I'm back on the road to recovery. Biggest thing now is I'm retaining ridiculous amounts of fluid so my arms and legs feel like they weigh a ton. That's slowly going down though. Hoping to be back to normal by the end of the week.
 
Looks like my son's remicade is failing again. He started bleeding again a few days ago, less then a week since his last infusion and third one in a month. I don't know why this is happening, but I hate it. He did so well for 8 months, with no symptoms. See what the doc's say in the morning I guess. They told me last time that we would be going back to the children's hospital if he flared before he was due for his next infusion. He was scheduled for October 25th. :(
 
When our daughter started bleeding again, soon after a remicade infusion the dr. did another C diff test, yep, after 2 negative test this was positive. Started Vancomycin again this past Friday.
 
Alysa had her first infusion on the 1st of this month and is scheduled to have the second one on the 14th. 2 weeks. I sure hope all goes well. So far she is at school and has been doing much better. We have even been doing the poopy dance :poop:as it has been progressively better. After reading some of the recent post, and the things that are going on, I just hope and pray that all of you can get this under control and be well! :ghug:
 
Eema23,
Sorry to hear daughters c diff came back. I know there are threads in other areas of this forum (c diff support?) where people have posted good information on fecal transplants. I think that is really effective. I never had drs here know enough to do fecal transplant, but instead did a 30 day vancomycin slow taper. For life I will take VSL 3 probiotic and saccorhomyces boulardi twice a day to keep that gut flora happy.
But vancomycin works well as directed. Hospital made sure I was given florastor twice a day (Sacco. Boulardi). Se is getting that, right?
 
BlessingsK,

This is daughter's 2nd C diff infection, I had said during the first one this summer that I would really push for fecal transplant if she had 3 infections. I may start pushing at our next conversation with the doctor. She is getting saccorhomyces boulardi and I'll add VSL 3 after she gets off the antibiotics, but I don't think it is going to do the trick.
 
Good Luck Jessie! Just got my first infusion. Feel ok so far told to stay away from people! Open for more sickness with this and 6 mp. Also found funny how nurse told me this a chemotherapy drug and right on bag there is the word. Also that the drug work a few illness! Now wait for next in 2 weeeks. She said by 4th one you'll find out if it works
 
Sending my best to all of those receiving Remicade and the children too. I hope it helps to keep or put you all in remission.
My daughter (age 14) has had her 11th treatment without symptoms (in wasnt until her 8th treatment that she went into remission.) Last month her Plasma albumin was a bit low and so are her monocytes. Not sure what is around the corner. If anyone is familiar with this please let me know. thank you
 
Have only recently become aware of Hyperbaric Oxygen Therapy as a treatment option for Crohn's. Am so eager to find a viable alternative to the meds my 15 year old son is on. He is on Revellex infusions which have been brought closer to6 week intervals and am not sure how well this is working since he does not feel great, poor energy and is having so many allergy issues. Had his tonsils taken out on Monday because they were so large and infected, this only became an issue once he started the Revellex. Impossible to find a professional medical person who can advise on Hyperbaric Oxygent Therapy so very grateful to have found this thread.
 
Oops I see I posted in the wrong thread, was reading up on a couple of things at the same time, one of them was Hyperbaric Oxygent Therapy. A little embarrassed at having gatecrashed this thread.
But while I am here let me say that Revellex/Remicade has not been the wonder revolutionary drug the GI predicted. The side effects are pretty tough for my 15 year old son to deal with. He has such a great attitude to his Crohn's but this med is starting to get to him. He constantly feels "unwell", nothing dramatic but allergy flares, low energy, poor appetite etc. And all this with his bloods indicating everything normal. This Crohn's thing is a real test and I honestly salute each and everyone of you who deal with it!
 
Robs a said:
But while I am here let me say that Revellex/Remicade has not been the wonder revolutionary drug the GI predicted. The side effects are pretty tough for my 15 year old son to deal with. He has such a great attitude to his Crohn's but this med is starting to get to him. He constantly feels "unwell", nothing dramatic but allergy flares, low energy, poor appetite etc. And all this with his bloods indicating everything normal. This Crohn's thing is a real test and I honestly salute each and everyone of you who deal with it!
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We have added a probiotic (homemade Kefir) to counteract the low immune system that Remicade has caused. Hope your son feels better soon:

are his allergies associated with the Crohns or seasonal?

I'm glad you crashed this thread:)
 
Giving Remicade the boot! Two weeks after second infusion I got the worst, burning joint pains all over my body (esp. elbows, ankles, wrists, fingers, neck). Rheumatologist at UF Health Shands suggested discontinuing it because it sounds like it was giving me neuropathic arthritis. No thanks.....farewell Remicade. Wishing the best for those who use it!
 
sorry to hear that irie, may I suggest getting in contact w Dr. Hal Gunn from QU biologics, you would qualify for the SSI Vaccine trial, they got approved for international patients.
 
My grand daughter (10 yrs old) just had her 2nd Remicade this past Monday. Seems like she has taken well to the medication. I guess time will tell. She has even finished a full week at school and is now on her 2nd week! I hope this pattern continues. If Remicade doesn't work for some, what are the options they have? Wishing everyone to be well!
 
Jo Ann said:
My grand daughter (10 yrs old) just had her 2nd Remicade this past Monday. Seems like she has taken well to the medication. I guess time will tell. She has even finished a full week at school and is now on her 2nd week! I hope this pattern continues. If Remicade doesn't work for some, what are the options they have? Wishing everyone to be well!
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hope it works well for you, i was on remacade for 8 years and was in remission for the most parts had few flares but not bad, had to give it up due to upper resportorie infections one after the other. now this past year been in and out of hospitail all year,just got back from seing a specalist in ny city they put me back on remacade with methotrexate and predsone,and hydrocortasone sapposatories, i feel like a nombie now and can only work part time,hopfully this will take hold again. i believe in remacade for a long time,just watch out for infections. i allways felt and had flu like systems the whole time i was on it. i wish you all the best:):):eek::ylol2:
 
My 14 year old daughter had her 12th treatment a month ago and now her symptoms are coming back. Started back on cortifoam, eliminating lactose and already put in a call to her GI. Not sure what the next step will be.
 
jules, is your daughter on any other immunosuppressant's? maybe her bodies is building up antibodies n the remicade is becoming ineffective
 
going for second infusion next week! No help yet! Fistuials still there and lots of trips to bathroom. Will give it two more try's to see.
 
Irish, give it a little time to build up in your system. Remicade did me wonders, but had to increase the dose. It took nearly a year to find out what remission felt like. On another note, I have dear cousins, Carol and Mike G. who used to live in Meriden and now in Fort Pierce, Florida. Any chance you know them?
 
peterdoats said:
hope it works well for you, i was on remacade for 8 years and was in remission for the most parts had few flares but not bad, had to give it up due to upper resportorie infections one after the other. now this past year been in and out of hospitail all year,just got back from seing a specalist in ny city they put me back on remacade with methotrexate and predsone,and hydrocortasone sapposatories, i feel like a nombie now and can only work part time,hopfully this will take hold again. i believe in remacade for a long time,just watch out for infections. i allways felt and had flu like systems the whole time i was on it. i wish you all the best:):):eek::ylol2:
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My 17 year old just started this too she is doing ok and back in school too,she had issues with second one but they did it following week in ICU and all went well, she goes for her third on the 30..my dr has told me if she doesn't tolerate it we can try Humira ,but your granddaughter may be too young,hope all goes well
 
Irish86 said:
going for second infusion next week! No help yet! Fistuials still there and lots of trips to bathroom. Will give it two more try's to see.
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Takes a little while to get the meds working properly another one of those be patient effects. I have been on it for years and it really helps me with the cramping and have not had a flare up until recently. Hasn't helped w/ the bathroom issues but as a chronie 1/2 isn't bad. Good luck!
 
Josh and Judiths mom,

The GI thinks she may have a virus and it is causing inflammation.
It is getting really bad for her right now and she is having a hard time seeing it all come back again.

If her C.diff comes back negative and this continues, I will make sure she gets that test done to see if she has build up antibodies.

thank you for the recommendation. It is hard to keep my head clear for her and think clearly. As a parent, your heart breaks and it is hard not to fall apart. Everyone on here is so important. We help each other stay on track, and keep things going in the right direction.

thanks so much
Julie
 
Had second infusion Thursday. Going a lot tired and fistulas still leaking! Will carry on for time being next in mid-Nov. How's Jesse anyone know?
 
Just had infusion number six!

Seem to be doing OK, although I started to not feel so good after I came off the Aza a month ago.

They asked me to do a stool sample for faecal calprotectin, which I did last week. I'm hoping this infliximab today will give me a boost! The nurses said my blood test results were looking good.
 
I am going tomorrow for my infusion. This time I have to take an allergy pill two days before, and two days after, and they will give it to me at the clinic tomorrow. I have had really bad joint pain and my GI is concerned that I am developing antibodies. Fingers crossed that is not the case!
 
I go for my infusion tomorrow too and always look forward to it. I get tired and draggy towards week 5, and get infused at week 6. It's like a little pick me up, re-energizes me. Does it do this for others?
 
spinnychick said:
I go for my infusion tomorrow too and always look forward to it. I get tired and draggy towards week 5, and get infused at week 6. It's like a little pick me up, re-energizes me. Does it do this for others?
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Yes, it certainly re-energizes me too! I get infusion every eight weeks, sometimes it seems so long until the next one! But other than two weeks of joint pain, this in between period has been a lot better than most!
 
Quite a few people are mentioning joint pain, is it common? Is it a side effect of the remicade or part of having crohns? Is it mainly in the knees?
 
Mine was all over my body, moved around, but the worst and most pain was in my knees. It could be either crohn's or remi.

I think it is pretty common from doing searches on these boards. My GI's attitude is the Remi is doing it's job on the crohn's and perianal disease, so the rest of the stuff I just have to deal with. I totally agree with him....but much easier to agree when you aren't in pain!!! LOL
 
I am feeling like giving it up. I know i need it but last time I went the receptionist kept me waiting to go in when i am usually straight in. I just got it infused 15 minutes before it expired. I was at my last infusion for 5 and a half hours. It was an absolute joke. I rang last Thursday to say i was well enough to go through with the infusion. I then get a phone call 10 minutes later off the ibd nurse you didnt book your appointment I told them i did and they said no room the receptionist didnt book you in. I am really pissed off now. I always go on a Friday when my mother an have my two children the nurse said no room next Friday come on Wednesday. I now have to get my disabled dad to look after my 3 year old and get my auntie to pick my son from school while i have this stupid drug. Sorry for moaning but I have had quite enough.

Alison
 
I just had my first infusion today woohoo! I'm really hoping this drug does the trick because I'm sick of being in pain. Budesonide really helped but it didn't get me back to 100%. Does anyone know if Remicade causes mood swings? I came home and slept for hours (probably from the Benedryl) and I'm just in a bad mood. Not sure if it's the meds or just my whiney and defiant son getting under my skin LOL!
 
After 12 years of Remicade the GI guy is taking me off of it. He could find no inflammation when I had a scope a could of weeks ago. So I guess I'm in remission from the Crohn's. I was still having water "D" but could control it with lomotil. He took some random colon biopsies and now he says I have Lymphocytic Colitis. I guess I will have to find a different support group. I wish you all a great time with your Remicade. I will miss my trips to see the nice nurses at the infusion clinic. I will still check in here to see how you all are doing.
 
Hi everyone I'm 17 and I've just started infliximab yesterday and was wondering that if it was going to work how long after would it ? Or is it different for everyone? Also I have quite a bad diet eat a lot of fast food and generally just bad stuff would this effect the infliximab working if it was going to or would it not matter? Just need some advice as I want this drug to work so badly!!
Thank you
 
IMHO, I think correcting your diet a bit would help you feel better AS WELL AS the infliximab. It took two infusions before I felt any different, and you're right it is different for everyone. Your diet is your choice, but the medicine can't always do the whole job all by itself. I do hope you feel better very soon.
 
I think your right I may have to cut down on all this fast food I'm addicted to! Thanks for you reply and thank you x
 
Been on remicade every 6 weeks for about 2 years now. Knock on wood its been helping alot! Sign me up for this group please!
 
I just discovered this support group! I've been on Infliximab (that's what it's called here in South Africa) and it was my miracle drug for the last 3 years. I go for infusions every 8 weeks. It seems however, that my body is so getting used to the drug that it's only helping for about 6 weeks and then the last 2 weeks before the next infusion is horrible with all the diaree and pain. Can't afford to go every 6 weeks for the infusions as my job is quite demanding and I can't afford to take more time off. But it was the drug that made me "normal" for 3 years!
 
Sending prayers for healing and protection from all side effects. Remicade is a miracle drug for many people. The surgeon removed my seton today bc the remicade has healed the fistula!! Thank you Lord.
 
Hi, had my infusion on thursday & feel like a new person!! Thanks to all who replied to my 1st post!
 
This is my second go around with Remicade. It has been three years now. It is causing a lesion in my scalp.

2
 
My 13 year old son just had his first infusion two days ago and is looking forward to his next one. Unfortunately, we're in the hospital right now with an abscess and fistula and on the big IV antibiotics, so we really have no idea what to attribute his smiley face to, but I sure am hoping it's the Remicade!
 
:hug:hang in there, Hope the remicade helps him as much as it has helped me -- to close fistula and put crohn's into remission.
 
Heading in too work early tomorrow so I can take less time off for my infusion tomorrow at lunchtime.....have a checkup at 11 am then infusion after.....number fifty-something!
 
Had second infusion on 24th no luck yet! still draining and blowing up LOL! Also got a bill for $3200 the part insurance won't cover! Signed up for remi-start if doesn't help me pay all done. Can't afford that! So let's hope remi-start covers that and forth on up to $8000. How's Jessie?
 
Just had my first infusion on Monday and by Thursday I was feeling like a brand new person. The change was amazing. Yesterday (Sunday) we wanted to get out of the house for a while. We went shopping and about a half hour into it my hands started shaking, my legs got all wobbly, and what felt like all of the blood drained from my head. I've never passed out before but I felt like I got really close. I had to leave what I was doing and go find my husband. I almost collapsed in his arms as I lunged for the bench behind him. I sat for a while (in a dressing room - I'm sure the staff was pleased) and I was able to go sit outside. My husband brought me something small to eat and shortly after I felt ok again. I had eaten a few hours before and I wasn't hungry or anything. Before treatment I went days without eating and never felt like that. I'm not sure if it was a reaction or if it'll happen again but I hope not because this drug has really helped me so far and very quickly!
 
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.
Click to expand...

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.
Click to expand...

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.
Click to expand...

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!
 

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