• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Daughter a starting Remicade

Hi everyone! First of all, I truly feel that anyone facing this illness is a true warrior. My 25 yr old daughter was diagnosed with CROHN'S during her last year in HS. She suffered since age 7 with digestive issues and it wasn't until 18 that we found a GI that solved the puzzle.

She took the flagil, 6 mp, prednisone for about six months until she decided meds made her feel worse than the CROHN'S and against her drs recommendation, she stopped taking all meds.

She learned how to tolerated the pain and luckily did not have the run to the bathroom issue.

Now, approx 5 yrs after her diagnosis it finally hit hard. Hospital with abscess and infection. Luckily antibiotics worked. Dr put her on prednisone but not doing the job. Starts Remicade on Thursday and I'm petrified.

Scared not only about side effects but praying it helps. She has been in non stop pain for three weeks, has lost 20 lbs., and doesn't sleep. Has high pressure job and crawls into work regardless of pain. She tells me she can't live with the pain.

How possible is it that she will feel some comfort after first infusion? I see most experience being tired after treatment. Is it recommended she does not go into work day of infusion? She lives alone and Im freaking out she will have some adverse side effect and will have no one there to help.

Any advice?
 

DJW

Forum Monitor
Hi and welcome. Sorry your daughter isn't doing well.

I've just started Remicade last weekend. I felt fine after my first infusion. I've even started to notice a bit of improvement. My energy is a bit better. First time in a couple of years.

I hope the Remicade works quickly.

Sending you both my support.
 
Hi Desperatemom. I'm sorry your daughter has hit these difficulties with her Crohn's symptoms. Remicade can work wonders for CD. The relief can come quickly after the first infusion, or it may take some time, maybe up to the third loading dose.

Though the published side effects are scary, they happen in a very very small percentage of people who take it. Your doctor will be monitoring things closely.

Many centers pre-medicate to reduce risk of allergic reaction, and these can make you feel groggy. For the first infusion it's probably best to take the day off work just to see how she reacts.

Stay positive, talk to the doctor and infusion nurse, and it should all work out fine.
 
Thank you so much for the input. I plan to go with her. She was told to take a Claritin and two extra strength Tylenols an hr before infusion. She is currently on Predisone.

Gotta stay positive! At least that's what I'm trying to do.
 

my little penguin

Moderator
Staff member
DS was on remicade at age 8.
Outside of a lot of monitoring its similar to an iv .
Just kinda hang out for a few hours and then your done.
DS got tired the day of but he was on Zyrtec plus iv Benadryl /Tylenol .
He is a very allergic type kid so it didn't shock or surprise anyone when he had two mild allergic reactions ( tongue itching) both times despite iv steroids the second time .

Even then not real issues since everyone watched things closely both times .

Remicade is really the best defense since it has a good track record -no real side effects for DS while he was taking it and bonus GI can monitor med compliance ;)
Good luck
 
Thank you all for your positive feedback.

Im glad I have a variety of ideas as to what to expect. I usually wouldnt be too scared but a few years ago, she had an allergic reaction to an iron infusion due to anemia.
So I cant wipe that vision out of my mind.

But again, thinking positive! Your responses have been truly very helpful and calming! Thank you.
 
First infusion yesterday. Went with her fearing some allergic reaction. The two hrs flew by. The two nurses administaring Remicade to her an other patient both have Crohns! They have been on Remicade for three years. Full of information and fact they could relate to her made process so much better. She had no side effects and actually we went shopping after session. She is a tough little cookie! But after I dropped her home, she crawled into bed. She said she was sleepy. Havent heard rom her tiday so no news is good news!
 
HELP...running to ER with daughter with severe knee pain. First Remicade treatment on Thursday...She is cryinf in horrible pain. I know joint pain is a possible side effect bur dr is freaking me out!
 
Doctor running bloodwork to be sure before going forward. Guess we will know what the outcome in three days. In meantime, she is dealing with a series of emotional issues plus pain. Predisone dose being cut back. She says she is totally numb from all meds. Its heartbreaking!
 
Sunday was a little bit better. She said she had breakfast and had no stomach pains. Her knees dont hurt but she says they feel funny when she walks. She also says her stomach feels like if she had alla seltzer bubbling inside. She says she remembers feeling like that when she started predisone. We had lunch and shortly theteafter, bamm, her stomach pains started. She called me at around 8 pm and said she was still in pain. She is hopeful that she can continue with Remicade inspite of that knee pain episode. So im waiting til
Later to hear from her to see how the night went. Thank you so much for following up! I really need the feedback and support!
 
@my little penguin. Thank you for the information. Scarry to read. The only question that I have is that she never has had joint pain. This happened 24 hrs after Remicade infusion. The dr did quick exam of knee joints at hospital and she had no inflamation, redness or pain when he squeezed them. Dr said he has seen this as a side effect of the Remicade but still wanted to run bloodwork for antibodies. Its scarry regardless. If tests come back negative, she is going thru next infusion in October. Needless to say, I will sleep on her front lawn that night! Lol. I cant shake her call at 2:30 am screaming in pain! : (
 
Is she on anything but Remicade & prednisone? Joint pain came after the 2nd infusion for my kid. We chalked it up to the weight loss she had and other meds she had in hospital prior to Remicade. Joint pain disappeared until 4 months later but she had antibodies then. Heating pads didn't do much for my kid but ice packs & A535 helped. Hope you get answers soon.
 

Lady Organic

Moderator
Staff member
im so glad she is doing much better. Joint issues on biologics do seem not unusual from what Ive been reading on the forum. Hopefully it will resume completly and not come back. Keep us informed of her status.
 
Currently she is on predisone but doctor has started to decrease dosage. Spoke to her briefly and she said she didn't go in to work today because of stomach pains. Luckily she can work from home but I'm guessing she must have really felt bad if she didn't go in to office today. She had her flu shot while getting her first infusion. I'm reading that you are supposed to get flu shot two weeks before or two weeks after Remicade. Does anyone know about this? I'm starting to wonder if this had anything to do with the joint pain she had 24 hrs after Remicade. Any thoughts?
 
I have been on remicade for 3 years. I noticed a difference pretty much right away. I had been on prednisone, flagyll, cipro, Imuran and Entocort and Salofalk. Nothing worked other than prednisone but I was gaining rapidly. I go every 7 weeks, I start getting discomfort about 5 weeks in until my next treatment but anything is better than the pain of crohns. I also was at my wits end with the pain and couldn't live with it much longer. The side effects worried me too but my quality of life was more important than the what ifs down the road. I hope she gets relief soon!
 
Oh and yes generally any shots and use of antibiotics should be 2 weeks before and after. You can't be sick and have infections at time of injection. Just basically means the meds might not work like they should.
 
Shauna.lea, she usually got relief from predisone but not this time around. She is tapering off the predisone now. She only had the one infusion but she says she notices barely any difference. Keeps losing weight because anything she eats causes pain. I'm actually scared to ask her how she feels. She is pretty angry and short tempered these days and I can totally understand. I just feel so helpless. Hopefully, things will change for the better soon.
 
When I went off the prednisone I had terrible pain in my knees and other joints. Weird eh? Hopefully in the next few treatments she will start feeling a difference. Sometimes after some of my treatments I get achy in my knees. I was told it was a side effect and to take Tylenol.
 
Right now when I ask her how she feels she says she doesn't know any more. She is really tough but this is first time I see her frustration since diagnosed. I'm staying positive. It took her three years to get here because she refused to take any medications. Like the doctor told her, she is going to have to be patient to fix the mess. In spite of the horrible knee pain she experienced, she said she will just take Tylenol for a couple of days just in case. This is all so crazy!
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Oh and yes generally any shots and use of antibiotics should be 2 weeks before and after. You can't be sick and have infections at time of injection. Just basically means the meds might not work like they should.
My infusion clinic will administer the flu shot while you are having your infusion appointment.....I had that done a couple years ago. I have never heard about the 2 week wait - there is actually another thread about that on here somewhere.....

I have also been finishing up antibiotics while getting an infusion - what the Remicade does is make it harder for you to fight off an infection if you get/have one - which may cause a need for additional or prolonged antibiotic treatment. Basically if I don't have a fever I will get my infusion - with my Crohn's/Colitis history I don't want to tempt fate with messing up my infusion schedule.

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
 
It seems everyone's clinic and doctor practise different rules but when my clinic calls to confirm my appointment they ask if I'm sick or have infections and if I am on antibiotics because I would have to reschedule my infusion.
 
I have never had flu shot. My daughter has had it every year and never had any side effects. Oh well. Everyone is different so it's likely that it affects different people in different ways.
 
Hi! I am a 21 year old female dx'd with crohn's about two years ago. I am currently on Remicade and I found that it done nothing for me. It didn't help me, didn't lessen my symptoms. I too was extremely worried about the side affects. However, it really made me feel no different. After my first infusion I drove home and was fine. It didn't affect me at all. I probably found blood testing worse lol. I ended up having to get a bowel resection to remove 30 cm of my small intestine and a couple inches of my large intestine Sept. 10th because remicade was a last resort for me and it didn't help whatsoever. However, my doctor is keeping me on the drug to try and control future symptoms after I heal from surgery. Wishing you and your daughter good luck! I know how terrible this disease can be, I oftentimes feel like I don't have a life!
 
At this point its a matter of sit and wait. Im sorry the Remicade didnt help. There are so little choices in finding something that will work. These treatments are based on hit and miss. Time will tell. It breaks my heart to hear young people as yourself feel they dont have a life when it should be the best time of your life!
 

Lady Organic

Moderator
Staff member
Stawberrys78,

im sorry to read your story. have you ever tried a diet approach? or Enteral liquid diet? Please take a look at diet and fitness section of the forum, some people can get great benefits from dieting. Some specific diets such as SCD or IBD-AID are currently under trials and some preliminary studies show promising results.
 
Stawberrys78,

im sorry to read your story. have you ever tried a diet approach? or Enteral liquid diet? Please take a look at diet and fitness section of the forum, some people can get great benefits from dieting. Some specific diets such as SCD or IBD-AID are currently under trials and some preliminary studies show promising results.
Thanks!! I have tried different diets, and yeah watching what I eat helps to an extent, I also exercise frequently. Well I did before my surgery. However, when I am in a flare sometimes it really doesn't matter what I eat! :(

Still holding out hope that the surgery will bring relief. Although they think I have IBS along with Crohns. I'm still 3 weeks post op and some have told me it takes like 3 months to feel normal... trying to be a little optimistic although its hard.
 
Strawberrys Why is Remicade a last resort? Are other biologics not available to you? Sorry to hear you are having such a rough time.
 
We have tried 3 biologics now (Remicade, Humira, & Simponi) with no effect. If we didn't try them I don't think I could be ok with surgery. There is one other biologic we haven't tried, Stelara but I think at this point (& by recommendation of the doctor) it is best to save it for after surgery where the most diseased intestines will be gone so it has the better chance to work from the get go. Sometimes surgery really is the best option but you have to be ok with it. Things might be better with quality of life on the other side but it still comes with its own set of risks. Good luck.
 
We have tried 3 biologics now (Remicade, Humira, & Simponi) with no effect. If we didn't try them I don't think I could be ok with surgery. There is one other biologic we haven't tried, Stelara but I think at this point (& by recommendation of the doctor) it is best to save it for after surgery where the most diseased intestines will be gone so it has the better chance to work from the get go. Sometimes surgery really is the best option but you have to be ok with it. Things might be better with quality of life on the other side but it still comes with its own set of risks. Good luck.
Certainly! My GI made the surgery sound very promising and kind of downplayed how major it really is and the amount of recovery that goes into it. I wish I had researched it more before getting it because I definitely would have at least taken the semester off university.. lol. I have missed a month of classes and I need to go back Monday even though I am not ready. It sucks!
 
Top