Bye Bye Humira, Hello Remicade!

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Jennifer

Jennifer

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I'll be starting Remicade as soon as my insurance clears it. The Humira left me sick with an upper resp cold all the time and every time I'm sick I get diarrhea, joint pain etc. So we're switching. Hopefully it will help with the minor symptoms I've been having (diarrhea, mucus, minor pain on right near resection and joint pain). My loading doses on the Humira got rid of all that but once I went on the lower dose, it was all downhill.

One question I have might be kind of silly. :p I don't have a car and rely on public transportation or walk wherever I need to go. I know this is an infusion and in the past even heparin made my head spin a bit when my IV was flushed so I was wondering if I'd be ok to just hop on the bus or even walk home after the infusion or do I need a ride? :p
 
Good Luck! Was on Remicade for 7 years and it was like a wonder drug for me.
 
Crabby, my son says it doesn't make him dizzy and we usually go eat right afterward at a restaurant of his choice and he seems fine. They do give him benedryl with infusion so sometimes he is tired and sleeps the ride home(3 hours long). Good luck on the Remi!
 
Thanks Clash. I'll be sure to keep track of how I'm feeling and if I can't handle a bus ride then I'll call a cab. Didn't know if I for sure needed to arrange a ride or not. :p
 
What can I do after my treatment with REMICADE®?
Since REMICADE® is non-sedating, you should be able to drive after your treatment and continue with your normal schedule, as advised by your doctor.

http://www.remicade.com/remicade/assets/25IN09225_Preparing_for_Your_Infusion.pdf
Click to expand...

Well we have no experience with Remicade at our end Crabby but I do notice that some people have Benadryl or some other antihistamine and /or steroids prior to the infusion to lessen the risk of an allergic reaction. I guess if you are sensitive to antihistamines it could cause some lingering drowsiness.

Good luck!

Dusty. xxx
 
Thanks Dusty! Guess I might be a tad sleepy but its a short bus ride, I should be able to handle it. I hope. :p
 
I was fine after my infusions, Crabby, but then I wasn't given an antihistamine. My temperature would go up every time, so they used to give me panadol to bring it down and advised me to take it every four hours for the rest of the day.
Can someone give you a ride with the first one, just to see how you get on? Hoping you get on well with it.
 
I'll ask my mom if she will. She helps me get around to the store and to my GI so I'm sure she wont mind (probably wouldn't want to sit around during the infusion though :p).
 
Thanks! Will I for sure be given antihistamines? Is that the general rule? If they don't give them right away is that my que to run out of there? :p

Edit: Today would have been injection day for the Humira. Now I'm officially off all Crohn's meds until I get insurance approval for Remicade. Dunno how long it will take.
 
I'm starting on the 14th next week. If there's anything else I should know feel free to share otherwise I'll update next week after my first infusion. :)
 
Sry I didn't see your post Crabby-

The meds are to help prevent an allergic reaction I have been told

I get the two Benedryl. One Zyrtec Two Tylenol. And after
my first infusion I started getting something like prednisone
in my IV before my meds. I felt flu like symptoms and that
Took care of it.

I was sooo nervous getting first infusion my BP was 204/158.

They usually offer me a drink and a snack. My nurses are
really nice. I am sure you will do fine!



Lauren
 
Hope they can offer up something besides Prednisone if they have to go the steroid route. My heart doesn't like that stuff anymore. Thanks tots, no worries. ;)
 
Do most people have an allergic reaction if they don't take an anti-histamine? I get so sleepy on benadryl it just knocks me right out.

What blood tests or xrays do they need prior to giving remicade?
 
Nogutsnoglory I know you need a TB test. I did not have to have any x-rays done.

If Benadryl makes you sleepy then you'll probably want someone to drive you after you infusion. It's a preventative measure. I'd talk to them about other possible options besides Bendaryl and see what they suggest if anything, otherwise you'll need a ride.
 
I did the opposite of you... I was on remicade and till I had a reaction and now on humira...

Just an FYI you are watched like a hawk and they usually give you benadryl and something like claratin or zyrtec and some prednesone...

If i slammed some caffeinated before and just after, the benadryl drowsiness was to a minimum... and I usually was stiff the day after the infusion (like a toy soldier lol)

Otherwise when it did work for me it was wonderful... I think I might have hit remission just a few months after starting it 4 yrs ago... make sure you get something like imuran to take with it cause of its anti rejection properties... I didn't and thats why the remicade only lasted me 4 years while my dad has been on it for 13 almost 14 years and few flares...
 
nogutsnoglory- I had to do a chest X-ray and a TB test in order to take the humira and remicade, so they may ask for that.

I hope the Remicade works wonders for you Crabby! It made me feel great while it was working. Let us know how you do!
 
nogutsnoglory- I hope the insurance goes through quick for you. It always sucks having to jump through all of the hoops to get into a new treatment. Everything had always gone pretty quickly for me except trying to get on Tysabri. That took almost 2 months. whew!
 
good luck! I initially responded really well to humira Crohn's wise but had constantly blocked ears and a nasty ear infection....and then it completely stopped working for my Crohn's. Started infliximab last month and so far so good, have an appetite for the first time in a year and feel amazing, no side effects at all, third dose tomorrow, cant wait!
 
Thanks Afidz. :p

2:15pm on Monday. Not long from now. Hope there's no crazy reaction. My parents will be taking me. My husband should be home by the time I get home.

One more question, should I do nothing the day after? I usually do Physical Therapy with my Grandpa on Tuesdays which is the day after my first infusion. It's a bit taxing on my body. Dunno if that matters or not.
 
I usually feel a little sleepy immediately following my infusion. THat's because I get IV Benadryl. Only people who display an allergic reaction (hives, wheezing, redness, etc) receive the Benadryl and steroids at my infusion center. After a quick nap, I feel great. I wouldn't worry too much about the day after. I've never had any issues. Good luck to you! It's really not nearly as scary as it seems at first.
 
I have been taking Remicade since 1999. Never needed any benadryl or anything. Once they unhook the IV..i generally run to the restroom to..get rid of all that extra fluid..then its off to lunch and back to work. Everyone is different, just pay close attention to your body; it will tell you whats going on if you listen.
 
So Crabby how did ur infusion go for u? I am nervous not knowing what new med to start but knowing I need one soon cus the Ento just didn't do anything for me
 
Hi MrsC and Lustforlife. Thanks for asking. :)

It went well. Made me a little tired but I'm told that some people do feel a tad tired during the infusion (from the Remicade itself, not the antihistamine, I was given Zyrtec instead of Benedryl). The fatigue started to go away about an hour after the infusion was over. It wasn't extreme at all though. I was able to function. Other than that it was pretty uneventful. No reaction as of yet and I hope it stays that way.

First one took 2 1/2 hours. They kept me for an extra half hour to watch over me.
 
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Might be too soon to tell but so far I'm tired, my bowel movements are looser and more frequent, I feel like I might be getting a cold (feel run down and a tad achy but it has been pretty cold here), I haven't been sleeping well (but that could be related to my husband starting his new job) and I fear that the same thing that happened with Humira might be happening with Remicade (I take Junel as my birth control and it makes me not have a period but with Humira I was having a full period and when I stopped taking it, I went back to not having them. Now its nearing the time where I should be starting my period and I'm starting to have pre-menstrual pain that I used to get before I was on birth control. I don't know why these meds would cause someone to have a period and I don't know if its also making the birth control less effective. Judith, do you have any idea? I feel I asked you before with the Humira possibly. I'll know for sure next week (next Wednesday) if Remicade is also causing me to have a period just like Humira did).
 
my bm were looser and more frequent too and i was like i wasn't going as much before, but today i only went once. I really didn't have any symptoms before going on the meds but i have a bit more energy and not as tired after getting home from work. I was real sleepy last weekend after the infusion could have been from the zyrtec.
 
hope all is better, changed my ? to the entocort thread SORRY
 
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Been on Remicade for about 5 months now, it does not make me dizzy at all. The only side effect that I have is that I get sleepy and ususally sleep thru most of the infusion. When I am done, we usually go out to eat and I am fine. Good Luck
 
Crabby said:
Might be too soon to tell but so far I'm tired, my bowel movements are looser and more frequent, I feel like I might be getting a cold (feel run down and a tad achy but it has been pretty cold here), I haven't been sleeping well (but that could be related to my husband starting his new job) and I fear that the same thing that happened with Humira might be happening with Remicade (I take Junel as my birth control and it makes me not have a period but with Humira I was having a full period and when I stopped taking it, I went back to not having them. Now its nearing the time where I should be starting my period and I'm starting to have pre-menstrual pain that I used to get before I was on birth control. I don't know why these meds would cause someone to have a period and I don't know if its also making the birth control less effective. Judith, do you have any idea? I feel I asked you before with the Humira possibly. I'll know for sure next week (next Wednesday) if Remicade is also causing me to have a period just like Humira did).
Click to expand...
I hope you are feeling better soon Crabby. Your Menstrual Cycle effect from [wiki=TNF - Tumor Necrosis Factor]TNF[/wiki] Blocker treatment is interesting....... and an extremely complicated topic. In fact, the role of TNF in the Ovulation, the Menstrual Cycle, and Pregnancy is not fully understood. So far, researchers have shown TNF plays a Major role in each aspect of female reproduction.

TNF Blockers have been shown to cause Menorrhagia (painful, heavy periods) in some women. There is not a lot of data on this subject but treatment with estrogen / progesterone appears to help with some symptoms.

Your Junel is a moderate dose oral contraceptive formulation. Hopefully it will help combat any negative side effects you may have related to your period. Your physician may choose to modify your formulation if you are having too many side effects but just be aware of the risks involved with the higher dose pills. Please keep us updated, it is very interesting and there is not a lot of information out there on the topic - yet.

Have any other ladies experienced similar effects with Humira, Remicade, Cimzia, etc?

Thanks for the interesting post!
 
I think my main concern Judith is the possibility of pregnancy. Does it make it less effective or is it an unknown at this point? I like kids and all and would love to have them just not right now and not so unexpectedly.
 
Oh. :)
I have not been able to find any significant warnings regarding oral contraceptive failure and Remicade therapy. There have been minimally increased rates (.01% increase) of oral contraceptive failure during use of TNF blockers and 100% of these cases occurred during the first month of therapy.

This may be one reason for the increased rates:
7.5 Cytochrome P450 Substrates
The formation of CYP450 enzymes may be suppressed by increased levels of cytokines (e.g., TNFα, IL-1, IL-6, IL-10, IFN) during chronic inflammation. Therefore, it is expected that for a molecule that antagonizes cytokine activity, such as infliximab, the formation of CYP450 enzymes could be normalized. Upon initiation or discontinuation of REMICADE in patients being treated with CYP450 substrates with a narrow therapeutic index, monitoring of the effect (e.g., warfarin) or drug concentration (e.g., cyclosporine or theophylline) is recommended and the individual dose of the drug product may be adjusted as needed.
Click to expand...
Source

Cytochrome p450 induction is one of the major causes of oral contraceptive failure during antibiotic therapy.

However if you compare oral contraceptive failure rates in the general population (0.3% - 9%), an increased risk of 0.01% is quite low.

But, is still an increased risk and all of the information is not in yet.

Your risk of oral contraceptive failure increases with vomiting/diarrhea (decreased absorption of the drug), antibiotic use, and use of other medications that increase Cytochrome p450.

I would consider using a backup method of birth control the first month.

Sorry I do not have more information on the subject.
 
So far I did not have my period after my first infusion of Remicade but time will tell if it does affect it.

I'm having my second infusion today at 2:00.
 
Glad to hear its Your Doing well crabby I hope you continue to feel better, if I may ask though, your signature says you've been in remission 14 years and counting, are you using remicade as a maintenance drug?
 
Yes Joshuaaa I am looking to find my next maintenance medication. I was on 6MP for over 15 years but it started to affect my liver and had to stop taking it. I was switched to Humira but started having upper respiratory infections after each injection day that would last almost the full 2 weeks before my next injection. So now I'm trying out Remicade to help me stay in remission. :)

Edit: I did bring a movie this time Afidz. :biggrin:
 
Thanks for the response :) I'm starting imuran this week I'm hoping to go into a long long remission from it, glad to hear you had such success with it, has your liver been recovering alright? You should try glutathione boosting supplements if you Havnt already, look up max gxl :)
 
Ya I don't remember the numbers but both my GI and Rheumy called me the same day to tell me to stop taking it. Blood work has been fine since. Ultrasound showed a slight fatty liver, GI was supposed to get the test results and then let me know if that was related to the 6MP or not but I doubt he's done that.
 
Well apparently the liver uses more glutathione than any other organ in our body, so if your glutathione levels are depleted it has to work over time, (I used to be a real heavy drinker before I was diagnosed) my liver is in good shape though, I think it's because of the gxl. Anyway I hope your liver gets back to good health soon :)
 

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