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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade, 2nd infusion feeling lousy


01-03-2016, 12:27 PM   #1
Bufford
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Remicade, 2nd infusion feeling lousy

I had my 2nd infusion 11 days ago and feel lousy. Right after the infusion I got fatigued like the first one with the headaches, but as the days went on I noticed that my blood pressure has gone up, and it spikes badly when getting up and using the stairs. Feels like my heart wants to jump, then pounding whenever I engage in anything physical like running the chainsaw or shoveling a bit of snow.

In the past four days an old fistula on my right side of the rectum that has been quiet has started to become soar, feeling like it might abscess. During the time since the 2nd infusion I have been feeling feverish. I have been feeling abdominal pain and my appetite is way down.

On the other side of the coin, I noticed less bleeding coming from the perforation in the rectum that has refused to heal for the past 15 years.

I am weighing the benefits over the side effects and wonder if this is worth it. I went without treatment for close to 10 years after the Cipro/Azathioprine went against me with my liver overloaded and I turned jaundiced yellow with purple bruises on my body. I had to go off or the treatment it would have killed me.
I did quite well without treatment since, other than the bleeding from my rectum, which the GI doc has been concerned about and recommended the Remicade. I was fine prior to the Remicade infusions, so I am wondering if I am breaking what didn't need to be broken.
01-03-2016, 12:49 PM   #2
Kero
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I would say finish your loading doses and have your first infusion after and see where you are. Sometimes it takes awhile to kick in fully, my infusion nurse said it could take 6-8 weeks from first infusion to notice a difference.

I am sorry you are feeling like crap. Remicade has given me my life back ( and I have only had 2 loading doses). I hope it does end up working for you, but the good news is, it's not the only biologic out there now, there are quite a few to choose from
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Crohn's Disease Dx: October 2015
Anxiety/depression
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Medications:

Celexa for anxiety/depression

Crohns
Remicade HAd first loading dose, second on on Dec 23. 500mg
Imuran 150 mg
Entocort 3mg
Pentasa 4g/day-failed

IBS-D
Buscopan-failed
Librax-failed
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Elavil-failed
01-04-2016, 11:03 PM   #3
tots
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I am sorry your not feeling well!
I have had wicked headaches in the last few months, I started Remicade last May.
My Dr said this is the last thing to try so don't want to give it up.I am pretty sure he needs to add something else to push me over into remission.

I hope things calm down soon,

Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
01-12-2016, 01:51 PM   #4
Bufford
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The past week has been better, seems like by rectal area has settled down but I do feel some soarness in the right side of the area. Blood pressure is better now, it could be due to the body adjusting to it or that the last infusion is being metabolized by the body. Next week I get my third infusion, at this point I am having less blood in mucous secretions. I still feel excessively tired, not sure if its the Remi or the Crohn's itself.
01-12-2016, 02:22 PM   #5
fuzzy butterfly
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The past week has been better, seems like by rectal area has settled down but I do feel some soarness in the right side of the area. Blood pressure is better now, it could be due to the body adjusting to it or that the last infusion is being metabolized by the body. Next week I get my third infusion, at this point I am having less blood in mucous secretions. I still feel excessively tired, not sure if its the Remi or the Crohn's itself.
Hi there. It could either or both unfortunately it's hard to tell. I recommend you keep up the infusion for now. It can take a while to get going and have an effect. I give it 12/14mths to no avail for me. Tho it can be a life saver for some. Best wishes you
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5yrs since dxd. 3yrs in remission.. in remission since march 2014, dxd july 2012, ileostomy march2014, reversed feb 2015 all's good so far
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01-13-2016, 12:16 PM   #6
Bufford
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I'm holding my breath that I don't start getting the side effects of red scaly skin and hair loss. Every day I look at my hair brush and counter top for lost hair, so far so good. Worst side effects so far have been the head aches and abdominal pain for a few days after the infusions. I keep my hopes up it will work as well as it has for others. The last treatment involving Cipro and Azathioprine was brutal, left me with an overloaded liver, torn rotary cuff and ripped tendons. As well as rotting teeth. I was on the treatment for 3 years and had to get off.
01-13-2016, 03:56 PM   #7
fuzzy butterfly
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Omg .. i had trouble with aza my luver levels went sky high . Luckly no adverse effect.
I didnt suffer hair loss or scaly skin with remicade,so maybe you wont fingers xd. Take care n best wishes 💕
01-15-2016, 11:54 AM   #8
Grant
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I had my 2nd Infusion 2 days ago, have to say the only after effect I appear to be getting is diarrohea & terrible bloating. After the 1st one things settled within about a week & everything was great until my 2nd one. So hoping that things settle again.
Over Xmas my CRP was 19, on wednesday my blood results from a test on monday were showing @ 1. Helluva improvement.
Keep well everyone
Grant
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1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
2012 Laproscopic Laperotomy & Resection
2013 diagnosed with a Fistula
Been on Azathioprine Pred & Methotrexate
Currently on:
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Questran
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01-15-2016, 08:22 PM   #9
fuzzy butterfly
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Hope things continue to improve Grant . Keep well n best wishes 💕
01-17-2016, 11:49 AM   #10
Bufford
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Tomorrow I have my 3rd infusion, seems the side effects have settled down in the past week, and expect them to emerge after the next infusion. I worry a bit about the 3rd infusion as many seem to have more reactions at this level. I feel like a guinea pig, but its worth a try, better than the alternative.
I have to go in for an MRI on my pelvis as another surgeon wants to take a closer look at my fistulas and rule out the possibility of cancer. He was concerned about all the black smelly blood/mucous draining from my rectum (I have been on a colostomy bag for 15 years now). Been having pain down in the area more so in the past year. Having said that I have much less blood in the drainage since the 2nd infusion of Remicade. So here's hoping that it works.
01-17-2016, 12:40 PM   #11
fuzzy butterfly
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Hi Bufford, good luck on the 3rd infusion. Hope it goes without a problem..
I have not suffered from fistulas, but they sound nasty beggars from what folks have said on here. Hope the MRI helps to shed some light on things. Glad the blood is less since starting the remicade, it sounds like it may be working. I have my fingers crossed for you. Hugs n best wishes 💖
02-16-2016, 12:11 PM   #12
Bufford
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Its been almost 4 weeks since my 3rd infusion, and I find that the first couple of weeks after infusion the side effects are at their worst. Now I am between infusions and I notice improvement in the rectal area, much less bleeding, and my appetite is a bit better. No improvement in my strength, and I still get the cramps and bowel movements have not changed since the start of Remicade. The only improvement is the bleeding so far, yet at the same time I have had some inflammation in the rectal area. I have dry rough skin on my face as a side effect. Its early in the treatment, and it will take some time to know whether the risks are worth it. Personally I don't like treatments, often they become worse than the scourge, the body does not like all these chemicals. I found diet, stress and pain control to be the best ways to control the Crohn's over the years a long with a high dose of rural living.
02-22-2016, 01:16 PM   #13
Bufford
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Its been some time now, and the dry skin problem is getting worse, it comes off like fine sand. The problem is worst on my face. I have to use more skin cream on my hands and altogether the skin on my body is on the dry side. More annoying are the small infections that come and go again around my rectum. Had this been happening prior to my colostomy surgery back in 2001 I'd be worrying about another abscess. These seem to come and go for the past 3 weeks now and I have not had them prior to the Remicade. The other thing is that there has been increased bleeding over the past couple of weeks.

Is the Remicade still working? Not sure I'd want to increase the dosage given the miserable side effects of the headaches, dry skin, abdominal pains, joint pain that have all been exasperated by this treatment.
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