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Remicade Club Support Group

I think maybe try the higher dose Remi ? Just my lowly opinion. Are you on any prednisone ? I'm on a low dose continuously . I'm not saying I'm ever feeling great though but it keeps me out of the hospital. ( for now ) Now my Dr.s frown upon it. I realize it's the Devils drug...however it's cheap and in the grand scheme of things ? If you read all the side effects from all the other poisons we're putting into our bodies .
I'm not sure if my Remicade is working anymore. I had a Prometheus test and it showed very little of its in my blood.i should try a higher dose . However....I can't afford more !
I'm so sorry you are in such a bad place. This horrid disease is the pits. God Bless..XX
 
I think maybe try the higher dose Remi ? Just my lowly opinion. Are you on any prednisone ? I'm on a low dose continuously . I'm not saying I'm ever feeling great though but it keeps me out of the hospital. ( for now ) Now my Dr.s frown upon it. I realize it's the Devils drug...however it's cheap and in the grand scheme of things ? If you read all the side effects from all the other poisons we're putting into our bodies .
I'm not sure if my Remicade is working anymore. I had a Prometheus test and it showed very little of its in my blood.i should try a higher dose . However....I can't afford more !
I'm so sorry you are in such a bad place. This horrid disease is the pits. God Bless..XX
Would Remistart help you as far as affording it?
 
Nope....they won't help if you are on Medicare. There are some other places that help...but all but one of them has no funding this year. I landed a small grant from a place..but it'll only cover 2 infusions. That'll help but what then...it's a very real struggle ! I not only have Medicare but also a Medicare Advantage plan . But my copays are horrible ! Almost a thousand for each infusion.
Dr's and the drug co.s are more than happy to push these drugs but when it comes to paying for it. S o r r y !
Thank you Ron for trying to help. Hope you're feeling better .
 
So sorry Gram. Nobody should have financial stress given that we already have disease stress. It totally sucks!
 
hey guyz,
I've been a Remicade patient for 9 years. Fall of 2017 will be a decade.
I was diagnosed at the age of 14, and began Remicade about 7 months following my diagnosis after being a slave to prednisone attempting to ween off and then lost effectiveness altogether.
I have been doing a lot of research to find examples of other Remicade patients that have been on the drug for this long, esp. those that began as young adults and have turned up almost nothing, apart from the cancer cases.
Any points in that direction are greatly appreciated.

Being gluten-free also hugely improved my quality of life as a Crohn's patient and I began this diet around the time I started Remicade.
I'm contemplating beginning the SCD and trying to reduce my dosage as I am concerned with long term side fx.

Thnx, peace and love,
glutenfreek
 
Hi All,

I am about to have my third infusion of Remicade (Infliximab) on the 21st. I was wondering how long people found they had to wait before it became effective?

Thanks everyone

Tom
 
Hi Tommy. My husband started feeling the effects 4 days after the first infusion. But after a year in remission, he relapsed last month. Now the schedule is being adjusted. Hope it works for you :)
 
I have had four and got my fingers crossed - no light at the end of the tunnel yet. Good luck - it's different for everyone. They can't measure the level of antibodies in my system where I am so it is a shot in the dark as to whether the dosage is right or not. This seems critical. Good luck anyway - never give up.
 
Nope....they won't help if you are on Medicare. There are some other places that help...but all but one of them has no funding this year. I landed a small grant from a place..but it'll only cover 2 infusions. That'll help but what then...it's a very real struggle ! I not only have Medicare but also a Medicare Advantage plan . But my copays are horrible ! Almost a thousand for each infusion.
Dr's and the drug co.s are more than happy to push these drugs but when it comes to paying for it. S o r r y !
Thank you Ron for trying to help. Hope you're feeling better .
Medicare is supposedly going to be covering the biosimilar of Remicade - Inflectra. It may be worth looking into for you.
http://www.medpagetoday.com/rheumatology/generalrheumatology/62393
 
Layla:

I was on Remicade for 3.5 years but at the start, it didn't seem to be doing anything. My GI added methotrexate once weekly and my rheumatologist added sulfasalazine for joint pain and that seemed to help. After 2 years when I had my colonoscopy, my GI said that I was in total remission and that she'd never seen such a dramatic change in the bowel. I had to stop it as it gave me psoriasis and went on Stelara - it didn't work at all so now, with my dermatologist's blessing, I'm going back on Remicade (if I have no antibodies against it) and Otezla for the psoriasis.

Maybe a mix of drugs would help you like it helped me. Definitely talk to your GI.
 
Thanks for the all the advice recently. Just made it back from holiday, system totally stopped, couldn't eat. Now I have spasmodic abdominal pain and really bad diarrhoea (I can barely bring myself to use that word). Where next. A downward spiral even under constant medical care and consultation. It helps to write this - hope you don't mind me moaning. Can't think of a positive at the moment.
 
hey guyz,
I've been a Remicade patient for 9 years. Fall of 2017 will be a decade.
I was diagnosed at the age of 14, and began Remicade about 7 months following my diagnosis after being a slave to prednisone attempting to ween off and then lost effectiveness altogether.
I have been doing a lot of research to find examples of other Remicade patients that have been on the drug for this long, esp. those that began as young adults and have turned up almost nothing, apart from the cancer cases.
Any points in that direction are greatly appreciated.

Being gluten-free also hugely improved my quality of life as a Crohn's patient and I began this diet around the time I started Remicade.
I'm contemplating beginning the SCD and trying to reduce my dosage as I am concerned with long term side fx.

Thnx, peace and love,
glutenfreek
I have been on Remicade since it became available. I'm not even sure how many years that is 15-18? Maybe longer. I'll have to look that up. I was in a lng term use study for it that lasted 5 years but that was so long ago. I haven't had any side effects from the long term use that I know of yet, my concern has always been Lymphoma my mom died from that in 2004 she had Crohns as well but was never on Remicade. We think maybe the prednisone and Imuran or other immune suppressants she might have taken thru her life? I have not found any other long term Remicade users either. Would LOVE to find others too.
 
No lymphoma here but I did have thyroid cancer after being on Remicade for 2 years. Had to stop it while I had 2 surgeries but went back on.
 
-Hello everyone!! My daughter stared Remicade Feb 2017--we have averaged about every 4 weeks so far. She had her last infusion on May 24th--this past weekend she began showing symptoms (blood in stool, tiredness, cramping, etc). My question is should we go ahead & do another infusion or treat the symptoms with prednisone? They have her scheduled for another infusion July 5th but we can go earlier if needed? I just don't want to lose the progress that we have made (weight gain :)--yay!!)
 
I'm awaiting results of the blood test where the results determine whether or not you're on the correct dosage as per weight.
Rgds
Grant
 
I went today for my 7th Remicade treatment, still new to this, at 44 years old, the GI nurse and doctor wrote my order wrong. I questioned the dosage as the nurse was changing my bag. I was only going to get 200 mg vs the correct dose of 500 mg. So, check and double check and advocate for yourself. Keep good records. I also started feeling bad around 4 weeks post last Remicade treatment, so this round, I'm having my Remicade level tested at 4 weeks out.
 
Well, I did go on the higher dose and it seems to be working! Still not totally fine but certainly better than I was. The downside is that this higher dose is only covered by the health system for 3 infusions, then it's back to the standard dose. So here's hoping that this will be enough to bring me into remission and that it holds despite a lower dose.
Otherwise it's going to be a medical trial. But at least I get to go on holiday without feeling somewhat human, that's worth a lot. :)
 
Well, I did go on the higher dose and it seems to be working! Still not totally fine but certainly better than I was. The downside is that this higher dose is only covered by the health system for 3 infusions, then it's back to the standard dose. So here's hoping that this will be enough to bring me into remission and that it holds despite a lower dose.
Otherwise it's going to be a medical trial. But at least I get to go on holiday without feeling somewhat human, that's worth a lot. :)
Have you tried the Remistart program?
 

dave13

Forum Monitor
Hello. The program is now called Janssen Carepath Savings Program. I must say I have had a difficult time dealing with this program the last four years. They were friendly but not helpful. I would follow their instructions,jump through the hoops and nothing ever got accomplished.

My insurance company decided I had to go to a different hospital for my infusions recently. Out of the blue,no notice kinda thing. This was a blessing in disguise. The new place has an employee who is an patient advocate. Someone who works with/for the patient to take advantage of reimbursement programs and help with billing questions. What really irritates me is these people can get information in a relatively short time while we jump through hoops and get nowhere slowly. A rant for another time.
I do encourage everyone to pursue this program. To be turned down for funding you didn't expect is no big thing. You just may get it and that is worth going for. Help with the bills,right?
 
Jansen ..and many of the other programs will not help if you are on Medicare. Something to think about...I can't help being old as well as sick !
The place that helped with my Remicade copays last year said all there funds were fully allocated . I did find a little help from another place. ..but not enough to carry me through till the end of the year. After my next infusion I'm going into panic mode ! Can't live without it and can't afford to take it !
Next time I need to choose what insurance to take to supplement my Medicare...I'm going to get professional help as I must be on the wrong plan ? My plan is
called a Medicare Advantage plan. The only advantage is it keeps you from wondering what to do with your money !
 
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Have you tried the Remistart program?
Hi Ron and others, these kinds of programs only work in the US sadly. No idea why, but it is what it is.

You can sometimes get help from the manufacturer on compassionate grounds but that is also just temporary.
 
is anyone doing remicade at home? Ive been getting my infusions through Amerita in Austin... my first nurse and I didn't vibe, but since the switch things are going great. Its much better for me than having to sit in an office for hours getting infused.
 
Wow ..never heard of that being possible ! I don't think it's offered here.
I just this past week got what was probably my last Remicade infusion. My funding is now all used up and I have a big out of pocket copay to pay . I had 200 left in the fund...but I owe 700 . The remaining two infusions that I " should " get this year will / would be a 900 dollar copay for each one. I spent all last week on the phone trying to find help . Sadly ..There is nothing that fits my situation . So I'm now ready to throw in the towel.
I can't not get the remaining two and start again if or when I'd find money at the beginning of the new year. It'd be risky due to possibly building up antibodies till then. I already need pre infusion meds because of a previous reaction.
I see my GI Dr. Next month..going to see what's available that's non- biologic and hideously expensive !
Ok..sorry for rambling on...I hope everyone is doing well and God Bless you all. XX
 
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.
 
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!
 
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.
 
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
 
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?
 
I don’t know why Remicade has to be IV but my guess would be that it has to administered slowly mixed with saline and it’s 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, it’s actually pretty enjoyable. Even the IV is okay - I have no nerves at the site they use so it doesn’t hurt going in. But I’m used to it now. Good luck!
 
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. :ysmile:
 
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 [emoji4]
 
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!:sun:
 

dave13

Forum Monitor
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.
 
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.
 
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??
 
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.
 
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.
 
My 17 year old son was diagnosed with probable UC/ but can't rule out Crohn's yet- so they are calling it unspecified. Its been a tough year with many meds,
currently we are transitioning from everything he is on orally and rectally to remicade infusions. Complicating it all is a recurrent c-diff infection confusing the response.
He is currently in the induction phase of remicade and I don't know if he is improving, or whether its the antibiotics or steriods.

How long do people give remicade a chance? How soon should we see a response?

(I'm sure its a common question)
 
I didn’t see any significant response for 6 months after the loading dosage. It’s certainly not immediate. However my blood tests began to improve and I’m now in complete remission.
 
Hi Susan, I think it depends. Varies per individual. For my husband, it took just 3 days. He was diagnosed in the middle of a horrible flare. After the first remicade infusion, he sat up like a spring on the 4th day. Until then, he was bedridden for 3 months. But it also takes a while for many people.
 
Looks like most of the posts in the Remicade club are old, but I will be starting my infusions Sept 25, so looking for any info on effectiveness, side effects, etc. I am on 20mg prednisone a day now, and 100mg azathioprine. Still have belly pain most days as I do have a stricture with partial bowel obstruction. The doc wants me to start the Remicade and then get off the prednisone, and possible surgery in Oct/Nov timeframe. I am scared stiff, as I haven't had surgery since tonsillitis at seven years old. From what I have read so far, Remicade doesn't seem so bad.
 
I have been able to avoid surgery since diagnosis. My GI started me on biologics and Humira didn’t put me into remission but it did help a little. Remicade put me into remission.
 
Hi,
I had my 1st Infliximab infusion 8th June this year. About 1 month after the 3rd infusion I became very ill overnight, waking up on a Sunday morning with shivers, joint pains and a temp of 38.7C. My partner called 111 who arranged for me to see a GP approx 20 miles away in Derby. After some checks he told me to go straight to the Royal Derby Hospital which was only 1 mile away.Within 30 mins I was put on Tazocin as I had sepsis from a water infection (Urosepsis) !! CRP 57
As we acted so fast and was given antibiotics quickly I only had to spend 4 days in hospital. I was given a course of antibiotics (co-amox) to take at home. Since this experience around 2 weeks ago I have never felt so fatigued in my life. Even after 35yrs of dealing with Crohns disease !!
I have now got swollen lymph nodes in my groin in the last few days !! My GP as checked me out and is baffled as to why they are swollen (bloods taken and awaiting results).
It makes me wonder if its worth the risk of taking infliximab as my 4th infusion is due 14 September !! The events of the last few weeks have made me very scared to go ahead with more infusions. Has anyone had anything similar ?
 
Hi DavidAntony, I'm sorry you're in this situation. It's not the same but my husband has been on remicade for 3 yrs now. Recently, his GI noticed his blood protein levels were very elevated, so she ran a bunch of tests and sent him to a hematologist/oncologist to rule out lymphoma. It was a very tough month for us but the oncologist ran millions of tests and said there are no signs of lymphoma or multiple myeloma and it's just the crohn's causing abnormalities. His lymph node on his right temple was swollen for a few hours one day and then quickly went away.

It's good that your Dr is running tests and I hope you're still cleared to use remicade. Good luck [emoji177]
 
Reaching out to anyone in the General Toronto Area (Canada) who has a GI that has prescribed Remicade - 10 mg/kg every 4 weeks. My son is currently on 5 mg/kg every 4 weeks and it isn't doing the trick but GI said he would gladly make a referral to a new GI who has more experience in regards to Remicade as he personally doesn't usually prescribed 10 mg/kg every 4 weeks. If you have a GI that you think could help in my area, I would appreciate your help.
 
Reaching out to anyone in the General Toronto Area (Canada) who has a GI that has prescribed Remicade - 10 mg/kg every 4 weeks. My son is currently on 5 mg/kg every 4 weeks and it isn't doing the trick but GI said he would gladly make a referral to a new GI who has more experience in regards to Remicade as he personally doesn't usually prescribed 10 mg/kg every 4 weeks. If you have a GI that you think could help in my area, I would appreciate your help.
I don't know about her Remicade prescribing practices, but I do know of Dr. Anne Griffiths at Sickkids in Toronto. She is a very prominent pediatric GI specializing in Crohn's. She or another Dr. on her team could very likely help you.

http://www.sickkids.ca/AboutSickKids/Directory/People/G/Anne-Griffiths.html
 
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