Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade Club Support Group


 
07-18-2017, 02:15 AM   #3931
Scifimom
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Hey Gram what about inflectra? I am on Inflectra for two years now, full remission no other medication needed, gained my weight back and generally I am fine. In Greece we have universal healthcare for everyone but with the recession and the memorandums etc hospitals had to cut back on their expenses, all new patients go directly to inflectra and old patients are ecouraged to switch too. As far as I have seen it has the same results as remicade . Its quite cheaper, its the biosimilar, since Remicade's substance was no longer protected by the patent. So its infliximab in another bottle. It may be worth looking in it.
07-21-2017, 03:49 PM   #3932
BrennieJoyce
 
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I have a question about my Remicade treatment. I've had 3 treatments so far, and am scheduled for my fourth one next Friday. I haven't seen any improvement in my CD symptoms, and my flare was so bad I decided to go on another course of prednisone 2 weeks ago. My doctor has assured me that it is safe to get Remicade while on prednisone, but I saw online that it's not a good thing to do. Does anyone have any experience with this? Thanks!
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Current Meds: Entocort, Lialda, Imuran, Remicade
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07-21-2017, 04:40 PM   #3933
More Than Pickles
 
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I was on prednisone when I started Remicade because I was in a flare. I think I stopped/tapered the prednisone after my starter doses of Remicade were done. You should start to see improvement very soon, I did. Best of luck.
07-21-2017, 04:49 PM   #3934
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HI BrennieJoyce..yes I've taken prednisone off and on for too many years to count. For the past three 1/2 years I've taken it along with my Remicade infusions. I take a low dose constantly. And I'm given a booster of it in my IV before my actual Remicade treatment to prevent an allergistc reaction. I experienced hives and B/P problems once and ever since I get Benedryl and pred.beforehand.
I think your dr. Is trying to get you under control then I'm sure he'll taper you off . I'm sorry your Remicade hasn't kicked in yet. Try to just think positive thoughts..don't stress about it because this disease feeds off of stress ! Have faith..! 😊🙏🏻 If it doesn't do the trick..something else can be tried. Good luck my dear..XX
07-21-2017, 07:04 PM   #3935
BrennieJoyce
 
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I was on prednisone when I started Remicade because I was in a flare. I think I stopped/tapered the prednisone after my starter doses of Remicade were done. You should start to see improvement very soon, I did. Best of luck.
Thank you!
12-12-2017, 10:34 AM   #3936
Hobbits
 
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I'm about to start Remicade in less than a week, after putting it on hold until I got MRI results. Can anyone offer any advice for a newbies first loading dose? I'm a tad nervous about this medication even though I have been on Enbrel for another disease for many years. I guess because Remicade is an infusion, it just seems so much more powerful than injectable biologics. Does anyone know why Remicade has to be infusions and can not be at home injectable like Enbrel?
12-12-2017, 01:12 PM   #3937
rrhood1
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I donít know why Remicade has to be IV but my guess would be that it has to administered slowly mixed with saline and itís too much to inject. You would have to do too many needles in order to get it all in. I enjoy my Remicade days. My infusion centre has a big screen tv, Netflix and I nap or read my iPad. They usually give me a drink and a snack too. I get pre-meds - Benadryl and a steroid in case of reaction (better safe than sorry) and it makes me sleepy so I nap. Other than having to have an IV needle, itís actually pretty enjoyable. Even the IV is okay - I have no nerves at the site they use so it doesnít hurt going in. But Iím used to it now. Good luck!
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Dx: Crohns - 2010
Dx: Severe cervical spondylosis/foraminal stenosis, ruptured discs
Dx: Severe lumbar ruptured discs
Dx: thyroid cancer - 2 surgeries - done with
Rx: Remicade, Methotrexate, Lyrica, Butrans patch
Vitamin D, C, B, calcium
12-13-2017, 08:36 AM   #3938
Hobbits
 
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Thank you so much for the reply. Gives me a better idea what to expect. I was supposed to start Remicade earlier but I decided to delay until after MRI results. They told me my first appt I will be there at least 6 hours, so they can monitor me for reaction, as the Bioadvance clinics is getting away from giving Benedryl. I believe they will have it on hand though if needed. Subsequent appt will be 4 hours long, they told me. I'm in Ontario, so nice to meet a fellow Canadian!

I found booking my appointments very challenging, especially these loading doses, as I cant keep taking huge chunks of time off work, it makes me question this drug, since I know there are other newer drugs in pill form like Jxeljanz or injectables. I thought perhaps because Remicade is infusion it may be a more stronger drug, but sounds like its more like what you said, just the delivery system via IV

Well I have a pretty picture in my head now for a pleasant experience and will try to relax and not stress over it.
12-13-2017, 09:46 AM   #3939
Madhu
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Hi Hobbits, only the loading doses are close to each other. After that you will have a fixed schedule for each infusion and it will make life much easier. The first infusion is the slowest, because they load it very slowly to check how you're reacting to it. Once it's all clear, the other infusions will be quicker. By quicker, I mean around 3 hrs. Take a book or music with you. Or you can just sleep. Good luck

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Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
12-13-2017, 09:58 AM   #3940
Hobbits
 
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Thank you! Trying to stay calm, and not stress over it. I like to be prepared and know what to expect. Thank you for the tips!
12-21-2017, 09:09 PM   #3941
dave13
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Hi Hobbits. I have been on Remicade for four and a half years. My insurance offered at home infusions. My GI was against it. The reason was,in my case,I live 30+ minutes away from the nearest hospital. If there was an issue it would take 30 minutes to get to me and the same to get back to the hospital.

There are many people that do at home infusions. Talk it over with your GI,perhaps it is offered in your area.
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02-21-2018, 12:51 AM   #3942
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I started remixed in September of 2017. I thought it was gonna help with my UC tho I am in a remission finally. It has gave me a horrible rash loozed like pustular psoriasis at first I have painful sores all over my body. I've lost the skin off my feet everything they have done so far isn't healing it. Finally they took a biopsy I am allergic to it. This also done me this way with humira took over a year for my skin to heal :-( I have been battling UC for 10 years now just lost my dad to colon cancer and I'm afraid I am heading that way as well. My Dr told me of a book that cured him of his UC Called Breaking the vicious cycle I've bought it and when I get myself mentally prepared to battle with giving up my favorite foods I'll let you know how it goes. But seriously those of you that's on these biologics if you get a bad rash don't just take their word as gospel get a biopsy. Before it gets to bad.
05-14-2018, 08:21 PM   #3943
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I have been on Remicade for well over a year. 8 week infusions but lately my eye lids have been swelling and I have a hard time with blurry vision. I had my last infusion 05/11 and I really have been itchy. Like I want to rip my skin off. EVERYWHERE. Head, face, Ears, extremities, privates. Has anyone had this? Is it a reaction to Remi or low dose AZA??
05-14-2018, 09:20 PM   #3944
More Than Pickles
 
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Are you doing the pre meds? Sounds like an allergic reaction, the Benadryl should prevent that. Iíve never experienced your issues, sorry I canít offer any advise.
05-14-2018, 09:24 PM   #3945
Madhu
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I have been on Remicade for well over a year. 8 week infusions but lately my eye lids have been swelling and I have a hard time with blurry vision. I had my last infusion 05/11 and I really have been itchy. Like I want to rip my skin off. EVERYWHERE. Head, face, Ears, extremities, privates. Has anyone had this? Is it a reaction to Remi or low dose AZA??
It does sound like a remicade reaction. Like pp said, are you taking pre meds? My husband developed back acne, so his dr added Tylenol 650 mg, benadryl through IV prior to remicade.

05-15-2018, 06:29 PM   #3946
Dyana
 
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Yes I always pre med. benadryl and 2 regular strength tylenol. Wonder what it is. better today. Gastro Dr said it is not the remi or aza without a rash and PCP told me to take antihistamines.
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