Hubby's first Remicade soon.. Nervous!

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Madhu

Madhu

Joined
Jul 18, 2015
Messages
285
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
 
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
 
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.
 
Tuff said:
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.
Click to expand...

Thank u so much for ur reply.. It gave me a great boost up.. Fingers crossed :) I hope you continue to feel better!!
 
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
 
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 :)

:ysmile:
 
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.
 
dave13 said:
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.
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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 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.
 
DJW said:
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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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
 
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).
 
DJW said:
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).
Click to expand...

Sorry to hear that, but glad its helping you. Hope you continue to feel better :)
 
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 :)
 
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.
 
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!!!
 
Farmwife said:
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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Thanks Farmwife. I'm not a parent either, it's for my husband :) I hope your little girl continues to feel better.
 
Jonny84 said:
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!!!
Click to expand...

Good for you Jonny. It's nice to read good stories about Remicade. Continue to feel better :)
 
aarthi said:
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 :)
Click to expand...

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.
 
dave13 said:
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.
Click to expand...

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
 
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.
 
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.
 
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.
 
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.
 
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.
 
Tuff said:
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.
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No, they didn't give him Benadryl. His GI wanted him on Tylenol 650 mg before Remicade.
 
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.
 
Farmwife said:
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.
Click to expand...

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.
 
aarthi said:
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.
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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.
 
dave13 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.
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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.
 
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
 
Yes I agree, it's a good sign. His body now it's healing to the point it's asking for more calories. This is awesome!!!!!!:thumleft:
 
Glad to hear his appetite is back. :thumleft: I finally felt my body was able to utilize the food I was eating once I started infusions.
 
Update - We met the GI today after my husband's first infusion and he seemed pretty satisfied with the progress overall. His appetite is back, feeling a lot more energetic and no more abdominal pain (Touch wood)!! He said it's good that his body is accepting Remicade and in some cases it usually stops acting after a while. So he has started him on 6MP now. Also said he will do bloodwork again next month to check everything is on track. Also, his fistulas are healing visibly now. We were very happy about that :D Overall, it was a good office visit :)

One more thing - His blood pressure is still constantly low. Today it was 85/55 but he doesn't feel dizzy or anything. He is completely normal. I am still thinking of ways to bring it up with home remedies so that his second infusion in 3 days will be a bit smooth. Any suggestions would help. Thanks!!
 
When mine got low they told me to add salt to my meals . Didn't need to do that for very long and it normalized again.
 
He was dehydrated, but currently I don't think so. We Indians generally add salt to almost every dish we make. I think I should increase the quantity :)
 
Good to hear your husband is doing well. It is encouraging news! This may be coincidence,I had low blood pressure when first starting Remicade. It is fine now.
 
That's good news about the fistulas. I get dehydrated easily, I try to remember to drink water before my infusion. That also makes it easier for them to find a vein. He could try sports drinks like Gatorade.
 
Grace also was very low during the first 3 or 4 infusions but now is back to normal.
So glad he's heading up.
You need to make sure he takes you on a date night when he's back to normal.:smile:
 
Update - S had his second Remicade loading dose today. All went smooth though his BP was low. Nothing much to report yet :)
 
I just had my first remicade treatment yesterday I had low bp as well
I felt dehydrated I trying to drink more fluids
It went well and I also have more of an appetite although I not quite if my taper with presindone as I was diagnosed 2 weeks ago
 
That's great Soohie. Keep hydrating yourself and eat as much as you wish when you have an appetite. The good days are coming. Feel better :)
 
aarthi said:
Update - S had his second Remicade loading dose today. All went smooth though his BP was low. Nothing much to report yet :)
Click to expand...

Nothing much to report can be a good thing. :)

Glad it went well for you Soohie. Being well hydrated can assist in making the infusion go smoother. ie,inserting the IV.
 

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