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Crohn's Disease Forum » Your Story » Hubby's first Remicade soon.. Nervous!


 
07-18-2015, 03:54 PM   #1
Madhu
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Hubby's first Remicade soon.. Nervous!

Hi all,

I am new to this forum. My husband was dx with Crohn's in Feb 2015. After 2 surgeries for seton placement (2 fistulas), 1 month of latent TB medication (since we are from India), he is now set to start Remicade next week. I read many posts about being prepared for the first infusion, but still really nervous. Is there anything specific that we should keep an eye on, or is he going to feel really better after the first infusion like our GI says?

PS - We are with an excellent GI who specializes in CD.

Thanks
Aarthi
07-18-2015, 05:18 PM   #2
Mr chicken
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Ds started remicade at age 8
So I get the nervous part
It took him 7 weeks ( three infusions plus a week to feel better )
But some folks see results after the first
It was an awesome drug for Ds
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07-18-2015, 11:48 PM   #3
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I had six fistulas without setons when I first started on Remicade a year ago. I'm also on azathioprine. My fistulas stopped draining in 11 days, and closed in a month. I haven't had any since. I call it my magic medicine. I haven't had any Crohn's symptoms for over a year. I hope your husband has similar success.
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07-19-2015, 07:47 AM   #4
Madhu
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I had six fistulas without setons when I first started on Remicade a year ago. I'm also on azathioprine. My fistulas stopped draining in 11 days, and closed in a month. I haven't had any since. I call it my magic medicine. I haven't had any Crohn's symptoms for over a year. I hope your husband has similar success.
Thank u so much for ur reply.. It gave me a great boost up.. Fingers crossed I hope you continue to feel better!!
07-19-2015, 06:39 PM   #5
dave13
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aarthi- Welcome to the forum! Having a GI you trust is great,take advantage of the resource.I have five fistula and three draining setons.My first infusion was a year ago the end of this month.You can read back through my recent posts,but I feel remicade has helped me.We are all different and for me it was once I was past the loading doses and on the maintenance schedule when I felt better.

I drained heavily after the fistulotomy for several weeks.The drainage decreased once I started remicade.My next meet with my colorectal surgeon is in September and he said we can discuss the removal of a seton because I have responded well to the treatment.I was told to be prepared to have setons for years.I was surprised to hear we may discuss a seton removal so soon.

Will your husband have a similar experience?I don't know.The important thing is you two are being proactive and I am happy you are seeking information.Support from a spouse is important.

This is a great thread to ask questions.Since you've checked out the forum I'll resist posting support group/info links.Let us know how your husband(and you)are doing.O.k.,maybe just one.Spouses of crohnies support group,just in case you haven't come across it. http://www.crohnsforum.com/showthread.php?t=48675
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07-19-2015, 09:33 PM   #6
Madhu
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Thank you so much for your kind words, Dave It's really encouraging to read success stories about Remicade and happy to see such brave people going back to normal life. I wish the same for my husband. He was also on a course of lot of meds for months together before finally being put on Remicade. Hoping for the best! His surgeon has asked us to come at the end of August or whenever the GI says its ok for the setons to be removed, depending on how well he responds to the treatment. He doesn't have drainage everyday, it's on and off, but still wears a gauze pad everyday. Can't wait until he is on remission, so that we can actually begin our life together. My full support is always with him

07-20-2015, 09:34 PM   #7
dave13
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I'm wishing your husband the best as well.The fistulas,fissures and abscesses support group may be interesting to you http://www.crohnsforum.com/showthread.php?t=47942.A place to check out for specific questions about setons,fistulas,etc..A good place for support as well as information.

Has your husband expressed any interest in joining the forum? Feel free to ask me any questions and keep us posted on your husbands progress.
07-21-2015, 08:40 AM   #8
Madhu
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Has your husband expressed any interest in joining the forum? Feel free to ask me any questions and keep us posted on your husbands progress.
Thanks Dave! No he hasn't. He is at a pretty vulnerable stage right now, because of all the suffering and there are a lot of scary stories on here too (aside from the success stories ). Once he turns to a negative mindset, it's really tough for me to bring him back. Takes hours! That's the reason I joined here and I read all the success stories to him often
07-21-2015, 08:46 AM   #9
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I wish Remicade was around when I was younger. I've been on Remicade for almost a year and imuran for 2. I have not had one ER visit in two years. No obstructions. No surgery. It's wonderful.

Sending you both my support.
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07-21-2015, 08:54 AM   #10
Madhu
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I wish Remicade was around when I was younger. I've been on Remicade for almost a year and imuran for 2. I have not had one ER visit in two years. No obstructions. No surgery. It's wonderful.

Sending you both my support.
Thanks Dave I read a lot of posts saying they are on Remicade for years together. Is that how it works? Does he have to be on it continuously? Currently he is scheduled for the first 3 infusions, after which his GI said he might have to be on it once in every 8 weeks. But I didn't think its forever :O
07-21-2015, 09:44 AM   #11
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I'm on an 8 week schedule. I'm on for life. I've had so many complications and surgeries another trip to the OR is not an option (unless it's an emergency).
07-21-2015, 09:54 AM   #12
Madhu
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I'm on an 8 week schedule. I'm on for life. I've had so many complications and surgeries another trip to the OR is not an option (unless it's an emergency).
Sorry to hear that, but glad its helping you. Hope you continue to feel better
07-22-2015, 02:39 PM   #13
Madhu
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Hi all,

We are finally starting Remicade for him tomorrow. It's his first infusion and I couldn't get a blink of sleep last night. Nerves! I'm just constantly planning what to take to the infusion centre and I don't want to miss anything. Thanks for all your support. Will update you tomorrow after the infusion
07-22-2015, 02:47 PM   #14
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Hi, I'm not a parent but a mom to a 6 year old with this disease.
My girl just had her Remicade today. She gets it every 4 weeks and its worked wonders!
I pray it all goes well.
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07-22-2015, 03:22 PM   #15
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I started remicade at the end of May during a nasty flare that steroids were struggling to control. Within 24 hours the bleeding had stopped and within 72 hours I was back to normal stools. I've now had my 3 loading doses and am on an 8 week schedule. I've not been premedicated for any of the infusions and I've had no side effects at all. So far so good!!!
07-22-2015, 03:50 PM   #16
Madhu
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Hi, I'm not a parent but a mom to a 6 year old with this disease.
My girl just had her Remicade today. She gets it every 4 weeks and its worked wonders!
I pray it all goes well.
Thanks Farmwife. I'm not a parent either, it's for my husband I hope your little girl continues to feel better.
07-22-2015, 03:51 PM   #17
Madhu
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I started remicade at the end of May during a nasty flare that steroids were struggling to control. Within 24 hours the bleeding had stopped and within 72 hours I was back to normal stools. I've now had my 3 loading doses and am on an 8 week schedule. I've not been premedicated for any of the infusions and I've had no side effects at all. So far so good!!!
Good for you Jonny. It's nice to read good stories about Remicade. Continue to feel better
07-23-2015, 09:43 PM   #18
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Thanks Dave! No he hasn't. He is at a pretty vulnerable stage right now, because of all the suffering and there are a lot of scary stories on here too (aside from the success stories ). Once he turns to a negative mindset, it's really tough for me to bring him back. Takes hours! That's the reason I joined here and I read all the success stories to him often
I'm glad you joined and relate the success stories to your husband.He is fortunate you are so supportive and seeking information.I know I said that already,but it is true.Yeah,we share everything on here,good and the bad.All the honest stories can be intimidating when you are first diagnosed.

This November will be two years since my resection and diagnosis and feel I am finally starting to live with this 'new normal'. Tell him it takes time to wrap your head around this disease.
07-23-2015, 10:26 PM   #19
Madhu
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I'm glad you joined and relate the success stories to your husband.He is fortunate you are so supportive and seeking information.I know I said that already,but it is true.Yeah,we share everything on here,good and the bad.All the honest stories can be intimidating when you are first diagnosed.

This November will be two years since my resection and diagnosis and feel I am finally starting to live with this 'new normal'. Tell him it takes time to wrap your head around this disease.
Thanks Dave! I sure will. He had his first infusion today and it was pretty uneventful except for the fact that his blood pressure was very low that at one point, they had to stop the infusion. His BP has been low ever since his Crohn's flared up at the end of May, so they contacted his GI and he told them to send in Remicade no matter what. They took a risk with that but he was kinda fine throughout. After coming home though, he had nausea for a while
07-23-2015, 11:42 PM   #20
dave13
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There is a lot to take in at the first infusion.Paperwork and questions as well as the infusion itself. Hopefully Remicade helps your husband.Tell him,in my opinion,once you get through the loading doses and on to the every eight week maintenance schedule it is easier to deal with. It may seem hard to believe right now.Keep his GI posted to any concerns and ask questions when they arise.
07-24-2015, 10:25 AM   #21
Tuff
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My blood pressure is always lower than normal, but with my Remicade infusion it drops even more. Last time it dropped to 79/55. The nurse, who is also a cardiac nurse, says that as long as I'm still sitting upright and not turning blue, she's not overly concerned. There's always a doctor in the building when they infuse as well.
07-24-2015, 02:04 PM   #22
Madhu
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Thanks Dave and Tuff. So far, he has not had any major side effects (Fingers crossed), except that he is feeling extremely tired and worn out since morning. He has been sleeping the entire time and waking up only for meals. I read in a lot of threads that this fatigue is very common the day after Remicade. Hope he feels better soon.
07-25-2015, 10:20 AM   #23
Madhu
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Update -

Its been almost 2 days now since his first Remicade. He got it on Thursday evening and it's Saturday morning here (almost noon now). He still feels extremely tired and worn out. Last night for about 2 hrs, he had a sudden bout of energy and was very happy after dinner. Fatigue is now back this morning. I was wondering if this is normal.
07-25-2015, 11:23 AM   #24
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I have felt tired for a few days afterwards, but try to go on with my routine. Did they give him Benadryl with the Remicade? That can make you tired too. I get a steroid with mine.
07-25-2015, 11:54 AM   #25
Madhu
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I have felt tired for a few days afterwards, but try to go on with my routine. Did they give him Benadryl with the Remicade? That can make you tired too. I get a steroid with mine.
No, they didn't give him Benadryl. His GI wanted him on Tylenol 650 mg before Remicade.
07-25-2015, 03:18 PM   #26
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I'm wondering if it's just the effect of his disease. Was he fatigue before Remicade?
Make sure to tell his GI about any new side effects!!!

We were told if the side effect is livable,
she needs to learn to live with it. Not what a mother wants to hear but I understand why.
07-25-2015, 07:16 PM   #27
Madhu
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I'm wondering if it's just the effect of his disease. Was he fatigue before Remicade?
Make sure to tell his GI about any new side effects!!!

We were told if the side effect is livable,
she needs to learn to live with it. Not what a mother wants to hear but I understand why.
Well, he did feel tired sometimes before Remicade. But this is different, the fatigue hits suddenly and he is not even able to talk normally. He just lies on the bed and whispers to me. I think I have to update his GI on this, like you said.
07-27-2015, 09:44 PM   #28
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Well, he did feel tired sometimes before Remicade. But this is different, the fatigue hits suddenly and he is not even able to talk normally. He just lies on the bed and whispers to me. I think I have to update his GI on this, like you said.
Yes,call his GI. During the loading doses I would have times of feeling pretty good and would all of a sudden hit the wall. The fatigue would hit me hard quite suddenly. It wasn't until the maintenance schedule things seemed to even out a bit.

Let us know what the GI says.
07-28-2015, 01:57 PM   #29
Madhu
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Yes,call his GI. During the loading doses I would have times of feeling pretty good and would all of a sudden hit the wall. The fatigue would hit me hard quite suddenly. It wasn't until the maintenance schedule things seemed to even out a bit.

Let us know what the GI says.
I was going to call his GI on Monday, but he has been feeling better since Sunday morning. His fatigue has reduced now and he was able to go for a very short walk last night. Fingers crossed. So I havent called his GI, will be meeting him coming Monday.
07-28-2015, 09:48 PM   #30
Madhu
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Ok I may have a wierd situation now. My husband has a sudden rise in appetite now. Been 5 days since the first Remicade and now he wants to keep eating. Is this normal? Anyone faced this? His appetite has been a little better over the last week but this is a sudden increase
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