Remicade Club Support Group

Crohn's Disease Forum

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If you have good insurance I would go for it. I was on Remicade for over 10 years. During that time I was off it every year for 3 to 4 months. If you're having a problem it might be Worth trying it again.m
 
I'm finally starting Friday. My mood has been a roller coaster in anticipation, but I seem to have settled into a mild resigned funk going into it.
 
Saw GI yesterday, taking me off Entocort and starting Remicade. I am waiting for nurse to call me back to set this up. A little nervous of the unknown, but willing to try!!!
 
I'm officially in The Club. My first infusion was Friday. Things went pretty well, though I was there just under 5 hours total. It was probably an hour of intake and waiting for the pharmacy to mix the med (which they don't do in advance due to the cost if there's a no-show). The infusion started slowly at 10 mL/hour and roughly doubled every half-hour. Once I hit 150, I started feeling a bit shaky and warm, although that might have just been the window seat and a touch of hypoglycemia since it was time for lunch. They dialed me back down to 125 and let me finish off that way.

I haven't noticed any side-effects or reactions. I was tired the first day, but able to do some moderately demanding work/exercise the past two days. My mood is a lot more even now that the anticipation is over. My Crohn's is mainly obstructive with no day-to-day symptoms, so I can't report much about symptomatic relief. I'm hoping the inflammation is going down and am waiting to talk to my doc about how we're going to monitor that. (CRP and other bloodwork has been unreliable for me.)

One unanticipated side-effect is that I've felt pretty motivated to eat well and exercise. It's been kind of a way to deal with my worries about side effects to tell myself that if I'm going to put this med in my body, I'm also going to do other things to promote health and healing.
 
Glad it went well Syzygy.The first time anxiety is over and you know what to expect now.My infusions average two hours.I can call in before the infusion with my weight and everything is ready when I get there.

Good luck with exercising and diet change.You can take advantage of the rail trail bike paths your town has.My wife and I visited her brother and family there last weekend,even went to Mt. Holyoak.

I hope everything continues to go well.
 
Well, the honeymoon seems to be over. I had my first obstruction in about 6 months last night. Today was a "hangover" of fatigue and bloating.

What kind of follow-up schedule are people on for bloodwork, imaging, etc.? I'm wondering how soon I should get in to the doc.
 
I have been receiving Remicade infusions for 10 years. In the last 6 months, I have been having some very painful joints. I recently had the Anser IFX test. The results revealed that I have not developed antibodies and that I am still in remission. There are days that I can barely move. I work in a preschool with two year olds and by the end of the day, I can barely pick my feet up to walk. I feel like all I do when I get home is rest and sleep. I'm exhausted! I am noticing more frequent trips to the bathroom and an uncomfortable gut. HAs anyone else experienced this?
 
Hi amysrose and welcome.

When was you your scope? My very long remission came to an end one of the first things I noticed was fatigue. I was anemic. Then eye issues cropped up.
 
I am even less happy about Remicadee than I was at the beginning. I feel worse now that when the treatments began. I still cannot be away from the bathroom. I am more weak and tired, not to mention sore than ever.

Not happy at all and having a rough time making my doctor understand just how bad I feel.
 
I am one week since my first infusion and I feel better then I have in 3 years.

I suffer from anorectal fistulizing crohns. I have gut pain too, but none of the BM symptoms that most seem to report. For the last 3 years, since I had the abscess drained and the seton put in I've been on all sorts of vitamins and minerals, but refused to go on any of the medicatons.

Finally, the fistula started hurting to a level that was probably and 8-9 and constant. Turns out the fistula had found it's way into the muscle.

One week since my first infusion (which went great, literally 0 side effects or reaction) my pain level in my stomach is non existant, and my fistula pain has ranged from 1-4. One week. Honestly this is amazing to me.

here's hoping it gets better, and keeps up!
 
DaveNotRoach said:
I am one week since my first infusion and I feel better then I have in 3 years.

I suffer from anorectal fistulizing crohns. I have gut pain too, but none of the BM symptoms that most seem to report. For the last 3 years, since I had the abscess drained and the seton put in I've been on all sorts of vitamins and minerals, but refused to go on any of the medicatons.

Finally, the fistula started hurting to a level that was probably and 8-9 and constant. Turns out the fistula had found it's way into the muscle.

One week since my first infusion (which went great, literally 0 side effects or reaction) my pain level in my stomach is non existant, and my fistula pain has ranged from 1-4. One week. Honestly this is amazing to me.

here's hoping it gets better, and keeps up!
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Dave, I've also refused medication for the last three years & tried vitamins-supplements along with a significant dietary change. I start my Remicade next week for Perianal Fistulizing Crohns...Hope the positive continues : )
 
Jay, they say it is different for everyone, but hopefully your initial reaction is as good as mine. For all of the obvious I avoided any and all medicine, and so far, so good....

Not scared of it anymore that's for sure. I'm more scared of the pain that I've experienced and how it has deteriorated my life to this point.

:)
 
I'm new to this whole forum but I have been on Remicade for some time now. I am 19 years old and would be happy to chat with other teens who are going through this.
 
Welcome acrohn42, I am also 19 and on Remicade, feel free to pm me if you want. Always looking for friends esp. My age with CD/UC.
 
It's nice to know that you don't feel like your side effects and your feelings are something you're imaging. My body hurt so bad today.
 
Ugh, I had a partial obstruction 4 days after my first infusion and am now on Day 10 of diarrhea. This is easily my longest flare ever. The docs say it's just coincidence and that it's too early to expect the Remicade to be working, but this is super-frustrating.
 
Hi fellow Remicade patients. I have been on Remicade for nearly two years, infusions every eight weeks. My gut and fistulas have really calmed down a lot about 6 months into the treatment. I almost feel normal apart for the few flares every couple of months, normally when i'm in a really stressful situation. since about May of this year after having stopped regularly practicing yoga i felt the need to stretch my legs quite often. I just figured it was because of the lack of exercise (even though i walk a lot in a day and am often on my feet). But for the past two weeks my legs have really been bothering me. They get really tingly and even numb to the point that it almost hurts underneath my feet. I've tried various positions to promote the blood flow. I haven't changed anything in my clothing that would interfere with the blood flow, no change in eating habits, nor exercise nor medication dosage. I still practice yoga occasionally. I just phoned my GI nurse and she claims she's never heard of it being a potential side effect of the Remicade and that she'll have my GI look at my blood work and call me back next week, she wasn't alarmed. It could probably due to a bunch of things, but i've read of a few cases on this site. Wondering if anyone else has recently experienced this tingly/numbness in their legs? Had it been looked into? Was it found to be associated with the Remicade? Was anything changed with dosage or medication all together? Did the sensation improve or go away with changing medication? Curious, let me know. Thanks!
 
I have not experienced any sensations in my legs since starting Remicade. Today's infusion was my 5th and I did experience something with the catheter. When it was inserted it was a little painful.Once it was in it felt fine.I was told it may hurt a little when it is removed because it was near a valve.Wow,did it! It was brief but painful. Anyone else experience this?

I was wiped out after today's infusion.The hospital rescheduled on me at the last minute and I had to do it before work today.I was able to go in late to work and nap for a couple hours after the infusion.I did go in and was in zombie mode for the remainder of my shift.I even slept during the infusion and I rarely do that.I put the chair in full recline,the nurse put a warm blanket over me,I got my book out and promptly fell asleep. :yfaint:

The catheter may have hurt but this nurse used tape sparingly and I had minimal loss of hair/skin when everything was removed as well as a nap.I call that a successful day. :thumleft:
 
Has anyone had the test done for antibodies and remicade levels in bloodstream ? I received an email from my GI today saying my levels was very high in my bloodstream but wasn't building antibodies against remicade . My Drs nurse needed to know how long sense last infusion before they made a decision on what to do ! It had been 3 weeks after remicade when blood was drawn . I've been having a lot of bad joint pain could this be the cause ? Thanks in Advance for any information.
 
My stool test was preliminarily clear, so my GI cleared me for infusion #2 tomorrow. I'm way less anxious about it this time, though bumming that this flare seems to be continuing. I was able to do some solid food for a few days, but a burrito at dinner did me in. :poo:
 
Started remicade 10/31/14, felt bad over the weekend and Monday morning came and I have felt good since!!! I hope this keeps working!!
 
sammyb22-I hope you continue to feel better! I feel I am starting to benefit.I have more energy for longer periods of time.I'm gaining some weight.Hopefully indicators I am benefiting from the food I am eating,now absorbing what I need.

Good luck to you! It may take a while to benefit from your infusions,feeling good is a great start.Our attitude is a big part of healing.
 
dave13 said:
sammyb22-I hope you continue to feel better! I feel I am starting to benefit.I have more energy for longer periods of time.I'm gaining some weight.Hopefully indicators I am benefiting from the food I am eating,now absorbing what I need.

Good luck to you! It may take a while to benefit from your infusions,feeling good is a great start.Our attitude is a big part of healing.
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Thank you so much for the kind words, it is very reassuring to read that it is working for others!! congrats on the weight gain and energy level...
BTW, a really big congrats on getting dog back. I do have 2 girls, both grown, and now just me and my buddy!! Don't know what I would do if that happened to him!
 
sammyb22 said:
Thank you so much for the kind words, it is very reassuring to read that it is working for others!! congrats on the weight gain and energy level...
BTW, a really big congrats on getting dog back. I do have 2 girls, both grown, and now just me and my buddy!! Don't know what I would do if that happened to him!
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Thanks,I was quite worried with Dobby gone over night. I almost missed that infusion.They are both home safe now. :thumleft:
 
I have had three infusions and I have a colonoscopy Friday...Hope the scope goes through. Doc says I need surgery if not. This will be the third attempt.
 
Good luck Cat 1653 I've been there before. Took surgery for me but that was when I was first diagnosed back in 2000 and Remicadee was just in clinical trials. Treatment has come a long way since then. Hang in there!
 
Saw my GI on Friday and he had no real good news. I've been trying to taper down Entocort for the last 2 months. Down to 3 mg. but my joint pain has increased significantly in the last few weeks and my labs show an increase in my CRP. So it's back to 9 mg of Entocort and he added 6 mp. So my hope of decreasing meds backfired. We lost prescription coverage as of Nov 1st so now I get to pay for scripts out of pocket, including Entocort. Swear I will be working to pay for meds. On a brighter note my joint pain was significantly better after going back up on Entocort. They told me to get a flu shot before starting 6 mp. So I did that on Friday too. So today I wake up feeling awful. Achy, cold chills. Don't know if its reaction to 6mp or flu shot. Felt really good yesterday though. Got to take what I can get right lol!
 
I've had it done. From my understanding, high levels of remicade in your blood and low antibodies means that the drug is "working". This doesnt necessarily mean that it's controlling your disease, but it means that it is actually able to bind and do its job. If you had low levels and/or antibodies, your body would be attacking the drug before it can do anything to help you. They probably want to know how long it was since your last infusion so they can see how long the drug is lasting in your system. Again, my understanding is that around 8 weeks is the normal time where blood levels decrease too low and that's why we need another infusion. If it had been 3 weeks since your infusion but you showed low level of the drug in your blood, that's probably a sign that it isn't working for you.

I know people have talked on here about joint pains as a side effect for remicade. Maybe it could be that? I always have pains in my legs for a few days after infusions. Also, I think we all forget that we can have other things wrong with us besides our crohn's, so make sure you get fully checked out before attributing it to the medication. You wouldn't want to stop taking remicade (especially if it's working for you!) and then figure out that the joint pain was unrelated!
 
alyssa519
My Dr said very high levels but I don't know the numbers and I have my infusion every 7 weeks . The joint pain in my knees starts to increase about 4-7 day after my infusion and at the 3-6 week they are hurting burning and sore . I They are so bad I can barely get up and walk and can't sleep because of the pain. I can't stand for very long . It's not just my knees it's other joints to its just my knees is weight bearing and I still work. They have done X-rays on both knee and said I have arthritis. I've tried looking up what the high levels mean but couldn't find anything but stuff a Dr mite understand. I do have a very high pain tolerance and glad I do but it's beginning to take a toll on me. I've been seeing a rheumatologist for over 4 years to help with side effects from humira and cimzia. He has put me on some meds to try to help and didn't, but now thinks I should lose weight and exercise and come back to see him in January and people like us know in my case crohns and other IBD you can't take a lot of the meds for arthritis or your insurance won't pay for meds and with IBD you can't afford to pay full price for those meds plus all the other bills. I did not start having this bad pain until I started doing biologic drugs . I'm just beginning to think the damage is done from taking prednisone and and all the other meds I have taken in the 36 year, with most of it being tried in the last 6 years ! Thank You so mush for your information.
 
Hello. I'm very excited to be in this group. I had my first dose about a week and a half ago. I've noticed some improvement. My joints are aching less. GI stuff not quite there yet but I'm very hopeful.
 
First infusion day with Remicade. It went smoothly with approximately a 125/75 ish or less blood pressure range maintained throughout the course of the infusion. I was given Tylenol prior to starting & to my surprise a Hydrocortisone infusion to start as well...Guess I now have to read why hydrocortisone may be given with Remicade infusions : )
 
Had my Colonscopy today. Much better results thanks to the Remicade. I do not have to have surgery. This is after only 3 infusions. I will be getting my fourth on Monday. dave 13 your were right. The third time was a charm. Thanks for the support.
 
I had the Anser IFX test done. I had to wait 4 weeks after infusion to have it done. Levels were reported to be therapeutic. They claim that my joint pain is not related to Remicade. Had an infusion today and they are doing more tests. Discussed possibly increasing Remicade or trying another agent.
 
I found out today the Dr told me 3 week after infusion and mint 3 days before . I have to wait until January infusion to redo the test . They tell me they don't think it's remicade causing my joint pain either but I've also took humira caused drug induced lupus and cimzia caused a rash on my legs & feet . I did not have this joint pain until I started on the biologic drugs ! GI tells me crohns patient has joint pain . I have known to have crohns 37 year and joints never hurt like this until the last 5 years and has been bad pain for 6 months ! Rheumatologist has said lose weight & exercise . Good luck and I hope you find your cause for joint pain .
 
Jay Woodman said:
First infusion day with Remicade. It went smoothly with approximately a 125/75 ish or less blood pressure range maintained throughout the course of the infusion. I was given Tylenol prior to starting & to my surprise a Hydrocortisone infusion to start as well...Guess I now have to read why hydrocortisone may be given with Remicade infusions : )
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If I remember right.The hydrocortisone is given first to help the chance of reaction to the Remicade.
 
Cat1653 said:
Had my Colonscopy today. Much better results thanks to the Remicade. I do not have to have surgery. This is after only 3 infusions. I will be getting my fourth on Monday. dave 13 your were right. The third time was a charm. Thanks for the support.
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You are very welcome! Happy to hear you do not have to have surgery.(not as happy as you are,of course :ybiggrin:)
 
sammyb22 said:
Started remicade 10/31/14, felt bad over the weekend and Monday morning came and I have felt good since!!! I hope this keeps working!!
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I could feel it working right after I went on it too. I tend to feel quite yucky after an infusion, so I make sure I take the day after off from work (my infusion center isn't open on Fridays!) Hope it continues to work for you! :)
 
Ok, i could use some advise. I had my first infusion of remicade on Halloween, everything has been fine so far, 3am Saturday i woke up with pain in left hip. By 3pm the pain had gone into thigh and was quite severe, i took 1Tylenol p.m. (its all i had), i crashed until midnight! When I woke up the hip hurt just not near as bad. The othr thing that i noticed yesterday but again not horribly painful, my right forearm feels like it is freezing on the inside? Today the freezing is getting painful almost a burning now
 
sammyb22 said:
Ok, i could use some advise. I had my first infusion of remicade on Halloween, everything has been fine so far, 3am Saturday i woke up with pain in left hip. By 3pm the pain had gone into thigh and was quite severe, i took 1Tylenol p.m. (its all i had), i crashed until midnight! When I woke up the hip hurt just not near as bad. The othr thing that i noticed yesterday but again not horribly painful, my right forearm feels like it is freezing on the inside? Today the freezing is getting painful almost a burning now
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Have you told your doctor about this?
 
dave13 said:
Have you told your doctor about this?
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Yes, Dave, I called Saturday and they said I could take the Tylenol. I emailed doc yesterday morning and I have an apt to go in this afternoon to get it checked out. The hip is much better but the arm still hurts...I can only explain it as if someone was constantly giving me an Indian rug burn.
 
UGH...I really am so frustrated!! I left work an hour early, paid $20 copay, all for doc to say "well if it was me, I would go for second remicade infusion and see if this persists" REALLY!!!!
Thank you for asking! I am sorry for the venting.
 
sammyb22 said:
UGH...I really am so frustrated!! I left work an hour early, paid $20 copay, all for doc to say "well if it was me, I would go for second remicade infusion and see if this persists" REALLY!!!!
Thank you for asking! I am sorry for the venting.
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vent away,no apology necessary.
 
Was diagnosed with crohn's less then two months ago and have been constantly suffering since, I am currently taking prednisone (40mg) and am going for my first remicade infusion today. Hoping this drug makes me feel better
 
joesch01 said:
Was diagnosed with crohn's less then two months ago and have been constantly suffering since, I am currently taking prednisone (40mg) and am going for my first remicade infusion today. Hoping this drug makes me feel better
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I hope you start to feel better soon. I had my first infusion on Halloween, it went ok and by Monday felt really good, some good and some not so good days since and going for my second infusion tomorrow.
Good luck to you!!!!
 
Hi, hello! I have been a member of the remicade club for two hears without ever knowing there was a club!:dusty:

Remicade has always worked beautifully for me, but I had an infection in January and missed a dose, and things have been a little screwy since then. I had a terrible flare two weeks before my last infusion (always symptom-free right after, without fail) and my doctor is moving me back to every six weeks.

But he wants to add Mercaptopurine to my treatment, and I am so scared I want to cry. It looks like it can cause hair lossand increase the chances of the same kind of cancer my grandpa died of, and I'm terrified. I do not want to be Involved with it.

Help! Has anyone here taken this with Remicade before? Side effects? :frown:
 
rsilverlining said:
Hi, hello! I have been a member of the remicade club for two hears without ever knowing there was a club!:dusty:

Remicade has always worked beautifully for me, but I had an infection in January and missed a dose, and things have been a little screwy since then. I had a terrible flare two weeks before my last infusion (always symptom-free right after, without fail) and my doctor is moving me back to every six weeks.

But he wants to add Mercaptopurine to my treatment, and I am so scared I want to cry. It looks like it can cause hair lossand increase the chances of the same kind of cancer my grandpa died of, and I'm terrified. I do not want to be Involved with it.

Help! Has anyone here taken this with Remicade before? Side effects? :frown:
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Rsilverlining : ) I just had my first Remicade infusion last Friday. So glad to hear Remicade has worked so well for you in the past. My GI has also added another medication to the Remicade - it's called Methotrexate. I also preferred to start with Remicade only & not have to take another drug. But the more medical trials I read the more I am beginning to understand that two drugs or what our GI will call Combo Therapy may be helpful. Someimes our GI's will add a medication to help increase the efficacy of Remicade - in other words to help it work better. Methotrexate is an alternative to Mercaptopurine. It is added at a low dose and taken once weekly. I've read a lot of articles about Remicade + Methotrexate. You are usually advised to take Folic Acid supplement to help alleviate the symptoms of Methotrexate (ie. Nausea, Hair Loss). Maybe you can also discuss Low Dose Methotrexate with your Dr. as an alternative to Mercaptopurine.
 
Hi, Jay! I wish you the best of luck with the Remicade and I hope it works as well for you as it has for me! The hair loss is the thing the I am most concerned about... and of course, I know that's stupid. But frankly, I refuse to take anything that can result in hair loss. Again, it is really dumb, a completely ridiculous decision, but my hair is naturally very thin, and I am happier accepting the pain of occasional flares than any possibility of hair loss. I just can't handle the idea of it. Do you know of any alternatives that don't have that as a possibility?
 
@rsilverlining. I'm afraid that Mercaptopurine, AZATHIOPRINE and Methotrexate all list hair loss as a possible side effect. But Rsilverlining remember that hair loss is just one of the "possible" side effects. This doesn't mean that everyone who takes each of these drugs experiences hair loss. As another thought let's say one of these combo drugs doesn't agree with you then there is no reason you couldn't discuss switching to one of the alternatives with your GI should you experience any of the side effects : ) For you to focus on refusing the medication due to the possibility of experiencing one particular side effect may actually leave you in a more vulnerable position with your Crohn's flare. On another note maybe you could also discuss with your GI that you agree to combo therapy for a short term trial say
6-9 months & then revert back to Remicade or monotherapy again. That's what I hope to do with my Remicade + Methotrexate combo.
 
Jay - I'd be interested to hear how the Remicade + MTX combo goes for you. I'm on Remicade right now, and have taken MTX in the past for about 3 years, but unfortunately it gave me such horrible side effects that I ended up having to drop out of school and only do online classes. Hopefully it will be better for you! I've heard that the combination of Remicade plus another drug can work miracles.

rsilverlining - I've experienced hair thinning with several of my drugs - Imuran, MTX, and others. I think that's just a possible side effect of most immunosuppressants, unfortunately. But maybe if you haven't experienced it with Remicade, you won't for the others either? I don't think it's a silly reason...it's something that will affect you day to day, so it's definitely a consideration.
 
Thank you, astarks! That's really what I'm hoping. If you don't mind my asking, what's the hair thinning like? I mean... is it noticeable? Are there ways to keep it from happening? I'm only twenty, and I haven't been able to be properly vain about my body with all of the weight fluctuations, and this just terrifies me. I've worked all of the less-mentionable inconveniences of Crohns, but I don't think I could handle something that I couldn't hide or just work through.
 
@astarks I'll keep you updated on the Remicade+Methotrexate ComboTherapy. I'm on a very Low Dose Oral Methotrexate starting at 12.5Mg-once weekly. Perhaps your dose was higher? I did have D after Week#1 and Week#2. I had my first Remicade Infusion following Methotrexate #2. I wanted to discontinue the Methotrexate but hung in for Week#3 and I'm doing much better with D subsided. I was thinking of perhaps lowering the dose to 7.5 mg or 10 mg. weekly to see if that would alleviate the D symptoms that I was linking to the Methotrexate.
 
hello Acrohn42/all

I just wanted to say thanks for offering your support. My 12 yr old son is very quiet and will not talk to anyone about his crohns. He is to start remicade very soon after failing mtx. I feel so sad that you all have to go through this, and need these terrible drugs to feel better. I dont think anyone realizes this crohns journey is as terrible as it is. I will try to get my son to read through this in hopes that one day he will find support and a place to come for comfort and advice. I will have to see if there is a forum for teens?



sincere thanks,
scared momma
 
mhertner said:
hello Acrohn42/all

I just wanted to say thanks for offering your support. My 12 yr old son is very quiet and will not talk to anyone about his crohns. He is to start remicade very soon after failing mtx. I feel so sad that you all have to go through this, and need these terrible drugs to feel better. I dont think anyone realizes this crohns journey is as terrible as it is. I will try to get my son to read through this in hopes that one day he will find support and a place to come for comfort and advice. I will have to see if there is a forum for teens?

Here is a link to the teen support group http://www.crohnsforum.com/showthread.php?t=48125. I hope your son will check the Forum out.Perhaps with a group of those around his age he will feel secure to ask questions and seek support.He may be surprised his own experiences can help others.
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Hello all - I am not quite sure if we are to jump right in?

I started Remicade 9-12, had one infusion, and got extremely ill, and was diagnosed with CMV Colitis. None of it went away, and only got worse. And then started Remicade again. Here is my update:

**UPDATE: for No longer a Lurker

Hello! So - I went back to lurking. I continued to feel sicker and sicker and sicker, with each Remicade infusion. It actually started with my end of Dec 13 infusion. I go so so so sick with that one. The doctors wanted me to try Claritin in stead of doing the double dose of IV Bendryl. From the moment the infusion started, I became sick, as the medication was entering my body, I got hives along the trail that made me itch beyond all imagination. I could barely speak. They stopped, gave me Benadryl, waited a half hour, asked me if I wanted to continue, and I said of course - always threatened in my head - a possible flare lurking. What I had was my one and only flare, and as soon as symptoms started I went straight to hospital. There was no lead up, no time for me to dilly dally. No siree-of course we were going to continue. And it had been a battle ever since. My reactions from that day forward were awful and numerous. Gone was "just" the 3 week exhaustion and fatigue. In August, I was so desperate, and frustrated that no one was listening to me, I asked to speak to the Rhematologist, who felt I was a miracle because I made an amazing comeback from osteoporosis, a few weeks earlier. He said as soon as the infusion was done, he would give me the Prometheus Test. With this infusion, came the rib pain, the costochondritis - that hit as I was parking my car. My symptoms this time around did not leave.

I thanked God I was still on Oxy at this point, called my Drs. and they said it would be two weeks for the test results to come back. Through a comedy of errors, I did not get my results until 7 weeks later, a week before my next infusion. The doctor called and said he had never seen this before, but I had 100% antibody against the double does of Remicade I got. (He is only in his late 30's - so maybe other doctors have seen this. HA!!) He said obviously, I am in remission, and at this point, he was going to email my other doctors and recommend, I take a 3 - 6 mos break of all drugs. He felt my body was way to stressed.

Once again, I go back to - was this all just C-diff? I had c-diff for 10 mos. After my 5th blood transfusion, the doctors in "one day" started me on a course of Vancomycin, 6MP, double dose of Remicade and I was still on 60mg of Pred. After vomiting for 4 weeks and loosing my gall bladder and my appendix, and breaking bones from the violence of the vomiting, (my bones were like swiss cheese then) I was taken off of 6MP. Took three mos to wean me off of Prednisone. Three days after the start of this protocol, I went into remission. Two days off of a ten day course of Vanco, it started back. This put me on a 10 mo course of Vancomycin. After a long wean, I was off Vanco, and fine. It was around this time that the symptoms of Remicade became almost unbearable.

I have no idea of what to make of all of this. I am now, 5 weeks past my date of when my last infusion was to take place. The bone pain continued (not to be confused with joint pain, it has always been bone pain for me. The pain radiated from inside the bone) and the symptoms became much worse, and my brain fog was off the charts. it has been almost 2 days now, that I am starting to significantly feel better. I feel light, and different kind of fatigue, and weak, but more normal that I have in over two years.

I am at a loss. I have started Diatomaceous Earth, and Nux Vomica 6C as detox's. My bowels were never this great on Remicade, lol. My doctor called me last night and wants me to get a Calprotectin Test. He said, we were too afraid to stop the Remicade - I had been begging for months as - as soon as the infusion started I felt toxic, the taste in my mouth was unbelievable - my body did it for us. He said if this text comes back okay, I am free to go med free, and we will see what happens.

It has always been my thought that I had C-diff Colitis. And nothing more. I do have the IBD gene. My brain is so tired. So is my body.

BTW- my diagnosis, has been all over the place. As of my last colposcopy 8/14 I now have been told, it is UC, not Crohn's colitis. Also - in all the time I have been sick, I have not been sick with anything else. During this two year period, two of my daughter's - late in the game, lol, came down with Epstein Barr. I tested negative.

Blessings to all of you. I think Remicade is amazing.

Thoughts?
 
HELLO I have been on remicade for over a year now with no adverse effects besides fatigue and stuff. But recently, I have been getting welt looking irritations across my abdomen and on legs. They come and go. Its like when a few come they hurt and itch, then heal, then others appear. They almost look like bug bites. I do not know the cause, but am wondering if the remicade may have something to do with it? Anyone else have this dilemma?
 
acrohn42 said:
HELLO I have been on remicade for over a year now with no adverse effects besides fatigue and stuff. But recently, I have been getting welt looking irritations across my abdomen and on legs. They come and go. Its like when a few come they hurt and itch, then heal, then others appear. They almost look like bug bites. I do not know the cause, but am wondering if the remicade may have something to do with it? Anyone else have this dilemma?
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When do you get the welts, and itching? Do you pre-med you? I used to get benedryl, double dose before my transfusion. One time, they decided to try and give me Claritin. It didn't work, I got welts and extreme itchiness, and pain. They stopped immediately, gave me benedryl and with my permission, proceeded with the transfusion.
 
maggiesfour said:
When do you get the welts, and itching? Do you pre-med you? I used to get benedryl, double dose before my transfusion. One time, they decided to try and give me Claritin. It didn't work, I got welts and extreme itchiness, and pain. They stopped immediately, gave me benedryl and with my permission, proceeded with the transfusion.
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No I do not do any premeds. I never had problems in the past with treatment. I have been getting these welts almost continuously. They come and go but non have appeared on my face or injection site. Mostly legs and abdomen. So the benedryl works for you?
 
oh yes! very much! Please ask your you doctor if you could do it. That is an allergic reaction, and well, my doctors had tried to keep them minimal. Do let us know how it goes. Andy other reactions?
 
maggiesfour said:
oh yes! very much! Please ask your you doctor if you could do it. That is an allergic reaction, and well, my doctors had tried to keep them minimal. Do let us know how it goes. Andy other reactions?
Click to expand...

OK. Thanks, I will bring it up. Well before these started I had a rash on my thighs but doctors said that was a fungal type infection--which is why I did not really think anything of these welts. But no other reactions that I know of. I'll let you know what my doc has me do.
 
acrohn42 said:
OK. Thanks, I will bring it up. Well before these started I had a rash on my thighs but doctors said that was a fungal type infection--which is why I did not really think anything of these welts. But no other reactions that I know of. I'll let you know what my doc has me do.
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I get a antihistamine before the Remicade too. I forgot about that when I read your post.
 
rsilverlining, I definitely understand that. I was on MTX (which gave me the worst thinning) from about ages 15-18, and it's no fun. For me, I have pretty thick hair to start with. So, my close friends and people who knew me really well could notice, but I don't know that it was necessarily apparent to strangers. It was mostly that I noticed it happening, especially when I was washing my hair, for example, and I'd end up with a lot of hair coming out in my hands. But, like I said, I don't think it was ever totally visible to people who didn't know me well.

Jay, it's been a while, but as I recall, my dose was at 19 mg a week, which with a drug like MTX could make quite a difference. I'm glad you hung in there, and that things seem to be improving. Fingers crossed that you can get the dose down as low as possible!
 
acrohn42 said:
No I do not do any premeds. I never had problems in the past with treatment. I have been getting these welts almost continuously. They come and go but non have appeared on my face or injection site. Mostly legs and abdomen. So the benedryl works for you?
Click to expand...

The first time I took Remicade, they always gave me benadryl. Then I switched meds for a couple of years and came back, and now they double dose me with benadryl, as well as Tylenol and Solu-medrol, and I've never had any bad reaction as long as I've got my pre-meds. Definitely ask about it!
 
I get premeds also and have not noticed anything unusual other than being very tired the next day. Tylenol, Claritin, anti nausea med and some kind of steroid. I am not sure what the steroid is for.
 
Yes, premeds are giving prior to the infusion. My first four infusions were given to me in hospital, and I was given high doses of Benadryl, prednisone, and tylenol. I had been given a dose of Remicade a year before, and became extremely ill - I had gotten CMV Colitis. So, when they attempted this time, they gave me the premeds. Once I was out of hospital, they only gave me the benedryl. It does work wonders. It is very, very important, that all of us pay special attention to our side affects. Any odd occurrences that happen over time, and then please report it to your caregivers/doctors. Lol, I did that, and I was still ignored, until I had a hissy fit, picture whatever you will in your mind - I had that - ;) - and then they gave me a prometheus test, and found I had 100% antibodies against remicade. I can no longer take the biologic anymore. The good news is, I had been in remission for a very long time. Note here: pay attention to your bodies.
 
I get a patchy rash which is worse on my back and legs, also scalp flaking. I have been on Remicade since December, and Benedral, Allegra and/or Zyrtec as pre-meds have done nothing to prevent the rash. I have been seeing a dematologist, who has prescribed various steroid creams that help, but it never really goes away. Remicade is known to cause skin issues in some people, and the first thing my derm said is to stop the remicade. But when I delayed the Remicade by a month, I got a flare, so I went back on it. I'd rather deal with a rash then diarrhea all day.
 
KrazyKat - your pre-meds

Krazycat said:
I get a patchy rash which is worse on my back and legs, also scalp flaking. I have been on Remicade since December, and Benedral, Allegra and/or Zyrtec as pre-meds have done nothing to prevent the rash. I have been seeing a dematologist, who has prescribed various steroid creams that help, but it never really goes away. Remicade is known to cause skin issues in some people, and the first thing my derm said is to stop the remicade. But when I delayed the Remicade by a month, I got a flare, so I went back on it. I'd rather deal with a rash then diarrhea all day.
Click to expand...

I think what is important to note is that your premeds should be given through IV, not orally. Your dermatologist is correct, however, when given my mouth, they are not as effective as IV. Is it possible for you to request or demand if need be, the IV? With that, though, you will need to have someone drive you home. IV Benedryl does make one quite loopy and unable to drive. That though, to me is certainly worth it. There is no need for skin issues, either! Just a thought! Have a lovely day.
 
I get the clariton and Tylenol orally when I get to the infusion center. I get the steroid and anti nausea through the iv. This is before the Remicade.
 
Cat1653 said:
I get the clariton and Tylenol orally when I get to the infusion center. I get the steroid and anti nausea through the iv. This is before the Remicade.
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I did that for over 10 years and never had a problem. Actually I took benadryl, but close enough. :)
 
Well I went to the doctors and he thinks the sores are from a staph infection. Yippie. So he's got me on antibiotics. hopefully that'll take care of that
 
acrohn42 said:
Well I went to the doctors and he thinks the sores are from a staph infection. Yippie. So he's got me on antibiotics. hopefully that'll take care of that
Click to expand...

What makes him think it is a Staph infection? Are you on Probiotics?

So sorry to hear this. I hope within 72 hours you see a marked improvement.
 
maggiesfour said:
I think what is important to note is that your premeds should be given through IV, not orally. Your dermatologist is correct, however, when given my mouth, they are not as effective as IV. Is it possible for you to request or demand if need be, the IV? With that, though, you will need to have someone drive you home. IV Benedryl does make one quite loopy and unable to drive. That though, to me is certainly worth it. There is no need for skin issues, either! Just a thought! Have a lovely day.
Click to expand...

I've always been given 50 mg benadryl and almost 600 mg tylenol orally, and that's been enough for me, though they do the solu-medrol through IV. Personally, I'd rather have at least the benadryl orally, because if they give me IV benadryl there's no way I'd be fit to drive. If it fixes the issues to have the meds given through IV instead though, it might be worth the switch. It all comes down to priorities!
 
acrohn42 said:
Is it one you take yourself? Or do they give it to you right before treatment? Did you have problems before you started using an antihistamine?
Click to expand...

I get it at the infusion.I'm not sure what is wacking me out.I'm told and I cant find the lab report right now(of course)before the Remicade I get a med that is the same family as prednisone.When this hits my veins I literally start nodding off.I can feel the coolness of it being in the fridge as it enters my bloodstream and then I nod off and sleep.I told myself at my last infusion to fight the sleepiness and I was woken by the nurse after it was over. The fatigue is awful.
 
astarks said:
I've always been given 50 mg benadryl and almost 600 mg tylenol orally, and that's been enough for me, though they do the solu-medrol through IV. Personally, I'd rather have at least the benadryl orally, because if they give me IV benadryl there's no way I'd be fit to drive. If it fixes the issues to have the meds given through IV instead though, it might be worth the switch. It all comes down to priorities!
Click to expand...

I made a huge difference for me, getting IV. Yes, I had to be driven, but, three days later I was functional. Prior to that, I had no idea that something so simple like that, worked out so well! I never needed the tylenol, but I have been on Oxy - forever. And I have finally been off of all steroids for over a year. Definitely something to think about.
 
That is a type of steroid, and it used as an anti-inflamatory. Most people are pre-medicated in one way or another, just to be cautious.
 
maggiesfour said:
What makes him think it is a Staph infection? Are you on Probiotics?

So sorry to hear this. I hope within 72 hours you see a marked improvement.
Click to expand...

Thanks! The appearance and location apparently led to his conclusion. Yes, I am on probiotics. He took a skin sample and blood test. Waiting on the culture, but the blood test showed possible problems with my liver. My AST and ALT are very elevated. I'm thinking it could be from the remicade. One thing after another!
 
New issue...just when I thought it was finally working. Would like to know if anyone has experienced this. 2 weeks after my last infusion started feeling numbness in 2 fingertips left hand. Thought maybe I had pulled something. We had been out on the boat in rough water and hitting lots of wake. Since then it's only gotten worse. Entire hand some times and even feels like it maybe be going up my arm. Other times just 2 fingers. Due for next infusion this week. So I've stared researching and apparently this may be a Remicadee side effect. Rare risk if drug induced MS! Seriously...wtf! Any thoughts anyone?
 
I have it too. it is my left middle finger and my ring finger, on the tips. It its always there, some days worse than others. Sometimes, I don't feel it for days.

Again, this is all personalized. Each person is an individual. Watch yourself, and pay attention, and ALWAYS make sure your doctors understand you are having these reactions. This may be it for you, and if this is as bad as it gets, this might be fine with you. :)
 
Thanks Maggie. Curious what the docs had to say to you as far as Dx and did you continue Infusions? I want my next infusion so bad but also don't want this anymore
 
I think I'm having sympathetic numbness.I swear my left pinky is tingly...the power of suggestion? I'm not being flippant,I swear my pinky and ring finger are tingly.Strange.
 
I have to tell myself that not everything I experience is the fault of crohn's. Paranoid,me? I prefer energetically cautious or something similar.
 
I find myself always blaming crohns or Remicade. Can't help it but you're right. Everything can't be related. But this just has to.
 
I've had intermittent numbness in my pinky and ring finger for about a year now. Sometimes it happens in my feet too. I saw a neurologist a year ago to get it checked out. He did a complete neurological exam and an MRI and in the end concluded that it was a form of migraine. I still think it has something to do with remicade though....
 
Hello!! okay, what we are experiencing are forms of neuropathy. Google it, and yes it is related to autoimmune and to meds used for autoimmune. Sometimes, it goes away, and sometimes it doesn't.

Sassycat, I am surprised your doctor didn't tell you that, it is quite common amongst us. I don't get the migraine part at all.

Max, where I stand now is I am off all meds and wearing off of oxy. My lupus symptoms became so bad, that they took a Promethus test, and I was found to have 100% antibodies to a double does of remi. I am now, 6 or 7 weeks past the last time I was to get an infusion. My body had been very very very strange, but in the last week or so, getting better. I am pretty confident I don't have Lupus, as are my doctors. My osteoporosis is gone, I have been in remission for 18 mos, and I show absolutely no signs of any form of UC coming back. There was always a question of me just having a very very bad case of C-Diff -- of course -- you all know, time will tell. My poor body gained so much weight from the Remi, which I was fine with as long as I was well. I had no idea I could experience so much pain, brain fog, and weakness from going off of Remi. I am, they say, an odd one with all the symptoms I get. The only drugs that worked on me were - oxy - and --- oxy. But I develop no tolerance to them. I'm rambling, and I am going to get ready for bed - oh yeah, and for the past two weeks now, I can sleep. I never slept more than 4 hours when on remi.

My doctors are optimistic - about what? who knows, but - they are all in agreement that I need to be off all drugs fro 9mos to a year and give my body a break, since it really doesn't like drugs at all.
 
Maxwelljax said:
I find myself always blaming crohns or Remicade. Can't help it but you're right. Everything can't be related. But this just has to.
Click to expand...

In no way did I intend for you to not consider Remicade was causing this.Sorry for the inference. :worthy:
 
Dave... Not a problem at all. I agree with you and wasn't upset or concerned. After reading Maggie' post I'm hoping I can keep the nasty drug going lol. Will see what happens tomorrow.
 
I have intermittent numbness in my hands/fingers - but in my case I have for the most part been able to trace it back to the nerve in my elbow being pinched when I rest my arm in a particular position - I can be ok one day, but have it bother me another. Not saying this is the case with everyone, but it is something to look at. I can lay in bed on my back, put my arms by my side with elbows on the bed and feel my pinky and ring finger start to go numb....

As far as 'true' Remicade side effects for me - I have started to notice I am more tired the next day after my infusion, and had another fairly decent sized headache too for a day.....need to keep an eye on that one and see if that continues...sigh....
 
Maxwelljax said:
Dave... Not a problem at all. I agree with you and wasn't upset or concerned. After reading Maggie' post I'm hoping I can keep the nasty drug going lol. Will see what happens tomorrow.
Click to expand...

Ugh...The drug is great -- I am new to the site, and don't know how to tell you to look up my other postings. Where I got my treatments, there was a woman I made friends with who has been using the drugs since the trials!!! she is a stunning, gorgeous woman - she was my inspiration.

I happen to have a weird body. There is a new DNA test, I will try to find a link, and the test shows how well your body metabolizes drugs. My body doesn't. Because I spent 54 year, healthy, happy and in great shape, until I needed an antibiotic, we never knew. And we actually didn't know until this year. It has helped a lot, and put a new spin on things for my doctors. My take has been, let me go back to what I have always done, and lets see what happens.

I just think we should note changes, and tell our doctors about them, that is it. I am a hopeful - forward moving person, and I wish the best for you. I have just had a lot of drugs and a lot of things happen in a small frame of time, due to nothing worked!! lol ...I know...say good night, Gracie...ciao!
 

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