Remicade Club Support Group

Crohn's Disease Forum

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Stress Kills

jasonma88 said:
Hello Everyone,

I am quite new to this forum but I have been reading a lot about ppl's posts and their experiences to Crohn's.

I was "officially" diagnosed earlier this year with Crohn's. I am still in denial with it.. since I don't feel any pain or what so ever. I only had a few flares from my previous experiences and a few times blood in my stool.

I have inquired 2 specialist and both of them suggested me to do Remicade. I have only taken 60 days of Pentasa prior to my 2nd colonoscopy where I was then diagnosed with CD.

I have some fistulas in my anus area, and that's what the 2 specialist told me that Remicade will try to eliminate it - however, I am not feeling any pain with those fistulas, only having something in that area is awkward. My specialists also mentioned that my CD is the penetrative type - does that mean more and more fistuals will develop to me ?


My question is.. do you think I should take remicade at this moment ? Like I've mentioned I have been living a normal life without having any bad symptoms or aches. At this moment I am consulting a chinese doctor, following her instructions with not eating certain kinds of food. I just turned 27, and I really don't want to take Remicade for the rest of my life without knowing their side effects.

I have been extremely stressed and depressed about this.. crying at work whenever someone ask how I'm doing or so..

Please give me some advice everyone.. :(
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...


I am new to this forum , but well versed in Remicade and crohn's disease.

I have found that Stress Kills.

When I go to the infusion center for Remicade I see people with worse diseases than me. I see people who will not live as long as I have a chance to. The experience is truely humbling. I start to feal like the fortunate one.

I would also have to say that you should trust your doctors. All other medications bounced off of my Crohns so....

I see my family doctor for stress, have for years.

The medication is called xanax. lol . It works
 
Well I guess I'm officially part of the Remicade club now!

Just scheduled my first infusion today. It's scheduled for next friday, the 9th, at 11:00 AM. I'm currently on spring break and I'm going on a trip to Universal from next Tuesday through Thursday. I get to come back from my trip and have a Remicade infusion! haha

I'm actually excited for it though. Not sure why. Guess I'm just a freak :lol:
 
Thank you! :)

I'm sure I'll have fun. I always love going to Universal. Living in Florida I have the privilege of going there every six months or so. The past 4-5 months have been so bad for me due to a horrible flare and I had to miss two vacations to visit my dad up north. I haven't been able to anything fun in months so I'm really really looking forward to this! :thumleft:
 
Hi All I am new to this website...My GI just told me today that I will be going back on Remicade after being on Humira for the last 5 years!!! I was on Remicade before in 2005 till 2007 so not sure how this will go this time!! Fingers are crossed..

The reason the GI has decided to finally switch it up ...My Vitamin D and B12 were very low and hence now I have to also go get a Bone Density Scan done!!!

It will be nice to have a somewhere to talk about this..
 
gabby'smum said:
Hi.
New to to your site. I have a 13 yo daughter with Crohns. She has been on Remicade for 14 months with good results (no symptons) but recently has been complaining of aching ankles, elbows, wrists, shoulders, back etc. I don't know if it is Crohns related or just "normal" pain from sport, school bags etc.
My question - Can you be free of the Abdominal symtoms but still develop aches and pains while on Remicade??
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hi gabby's mom...Can't tell you if can develop this while on remicade; however, what I can say from my experience that I have ankylosing spondylitis arthritis (which can be related to Crohns) and I also have fibromyalgia..I live in pain everyday and it's worst when weather is around... Granted these didn't show up till after I came off of Remicade back in 2007 and I started Humira... I would just talk to her GI doctor and let him know that there is joint pain now...
 
Remicade

I started on Remicade last month- the first infusio
Seemed to kick in within a couple of days- the second one ( 2 weeks later) didn't kick in and now it's been two weeks since that one where I feel like all the Ulcerative Colitis symptoms have come back.. Bloody diarrhea, vomiting and now since Sunday a dry persistent cough.
Is the cough common after Remicade? Or could I have contracted a cold from taking Remicade- predizone azomioprine?
I've been experirncing this severe flare for nearly 2 months now and haven't seen much relief.
Previously my colitis was limited to proctitis when current GI wouldn't give me asocol to keep in remission.
I believe the flare was caused by antibiotics Tetricycline since all other foods medicine were pretty much stable.. And flare began almost two weeks after beginning tetracycline for acne.
Has anyone else had a flare in result of antibiotics?
Any suggestions would be welcome since i am frustrated unable to sleep or eat.

Thank you,
 
Some research has been done linking certain acne medications with the onset of Crohn's disease, specifically Accutane (isotretinoin). If you google acne medication and crohn's disease several articles come up, it seems to be a small percentage but it is entirely possible. Have you mentioned it to your GI?

I've never developed a cough from the Remicade itself, I occasionally have a dry cough when the pollen here is bad (which is 11 months out of the year!).

Don't give up hope, sometimes it takes several infusions to feel the full effect of the Remicade. Good luck, hope you find some relief soon!
 
I had my third loading dose on Friday. I'm feeling great! I have some minor pain off and on, but no nausea, no bleeding, 1-2 bathroom trips/day. I'm very happy with the Remi. My next infusion will be in 8 weeks! I'm worried it won't last that long, but we'll see what happens.
 
ChrisNSteve- were your previous infusions as successful? Or is this third one where you finally noticed a change in your symptoms?
Also do you have Chrohns or Colitis?
Just curious because my GI is having me meet with a surgeon as an option to remove colon-which I hope to not have to do but given the way I've felt for nearly 8 weeks.. May be my only option.
Are you also on other meds such as predisone or Azathioprine? I'm on both of those as well as asacol.. And rowasa enemas. I just wonder when can I expect to feel better and be able to eat normal food?
 
I've just found this thread.... Very helpful so thankyou guys :) I have my first infusion tomorrow morning, am very nervous :/ Fingers crossed I have a success story like many of you on here!
 
Thankyou stephanie....
Your right it was nothing to worry about, I was at the hospital for 7 hours. Now feeling VERY tierd, is this normal?!!
 
SEVEN hours?? Good grief. I'm usually there 30-60 minutes before it starts, then the infusion takes 2 hours. Yes, completely normal to be tired. Did you get pre-meds (benedryl)? I usually feel spacey for a day or two.
 
Had my first infusion yesterday. No reaction while in hospital but was at the loo 15 times when I got home. Spoke to my IBD nurse who has contacted my GI and they say I just need to see how I go when I get it again in 2 weeks. It could be it's just clearing my system or my body might be wanting do everything in its power to get rid of it!! Was so tired this morning and I have a stuffy nose tonight but on a positive though after being on 40mg of pred for 6 months I started tapering to 30mg today. Hopefully I'll get my old face back!! yey
 
Kayleigh- do you have Crohn's or UC?
Congrats on the tapering down of prednisone I'm currently taking 40mg as well and have not been tapered down yet. How long on it before your face changed shape? I've been on it for nearly 2 months not tapering down yet but not experiencing swelling face yet.
My first Remicade infusion made me feel hugely better the second infusion took longer than the recommended two weeks which caused me much discomfort and pain- my GI doc prescribed Azomioprine which caused me to vomit while having 2nd infusion. The Azomioprine made me feel like the Remicade didn't work. Doc took me off Azomioprine which helped me feel much better.. I've actually been able to eat. He prescribed another pill that I'm reluctant to try.

Anyways best of luck with the success of Remicade!
 
ChrisSteph- what do you have Crohn's or UC? Have you experienced nausea from the imuran? My doctor took me off and prescribed what he called a stronger med. I'm reluctant to take since the imuran made me more sick.
Are you completely off asocol?
And are you completely in remission now? So would this mean you need to take all these meds to maintain? What triggered flare? Do you know? It seems your most recent flare lasted a long time as mine seems to be. I believe antibiotics triggered it and not taking asocol for maintenance. Any discussions with GI about clolon removal? My GI mentioned it several times because of extent of this flare.
Thank you ahead of time !
Christine
 
Well on sun I started running a fever of 101.3. After I took some Tylenol and slept the whole day it went down. I've noticed that im still having some trouble with mucous but no blood so im happy about that. I go back in on the 27th so well see how I am around then. Im pretty happy that no diarrhea or stomache cramps have showed up :) *knock on wood*
 
Tantan74 said:
ChrisSteph- what do you have Crohn's or UC? Have you experienced nausea from the imuran? My doctor took me off and prescribed what he called a stronger med. I'm reluctant to take since the imuran made me more sick.
Are you completely off asocol?
And are you completely in remission now? So would this mean you need to take all these meds to maintain? What triggered flare? Do you know? It seems your most recent flare lasted a long time as mine seems to be. I believe antibiotics triggered it and not taking asocol for maintenance. Any discussions with GI about clolon removal? My GI mentioned it several times because of extent of this flare.
Thank you ahead of time !
Christine
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I have Crohn's colitis. I take my imuran at night, so I don't have any nausea. I've been off asacol for years (we didn't try it with this current flare). I'm not completely in remission, no. I'm not sure if I'll ever get there. But I'm doing a TON better than before Remicade. I was hoping once I hit remission, I'd be able to drop the lialda and imuran, but I'm not sure if that will ever happen. My flare started right before I started a new job, so maybe stress? Or just a bad coincidence. I've only had two flares and they both lasted 1+ years. I don't have those short 3-day flares that others have. I don't even call it a flare until I've been sick for 2+ weeks. Surgery has never been discussed, as I seem to respond well (enough) to meds thus far.

I think that answered all your questions! :rosette1:
 
Thank you! Yes my GI said surgery not effective for Chrohns Colitis.
I'll have to try taking imuran at night to stop the nausea. Are you on prednisone too?
 
Tantan I have Crohn's. I was on pred for about 2 months noticed a little change, but was taken into hospital and giving IV steroids and my face just ballooned! Went back to work today for the first time since October! It was good to be back but man alive did I get asked some questions. I work at a high school and one kid asked if I had been away having surgery...ON MY FACE!!! that's how different I look ha. I realllllly hope it goes down fast. Had a good D day today but since coming home and I'm relaxed its starting again ugh roll on next Remi infusion and hopefully sort this out!!
 
Remicade working thus far - kinda

I've been on Remicade since Q2/2011. Have had medium results, although it's not working very well on my main internal fistula. Recently, the doc bumped me up from 400mg to 900mg and reduced me to a 6 week schedule - to really go after this fistula. Going in for another MRI probably in the next few weeks to see if there's been any progress.

Has anyone noticed if allergies to pollen become worse on Remicade? I'm finding that this spring is really bringing my allergies up to the next level (i.e. in getting worse.)

P.S.
*I don't know if anyone else has mentioned this, but Tisseel is another option that my Interventional Radiologist mentioned to me, to close up the fistula.
Maybe it's something that could be worth mentioning during a doctor visit.*
 
Welcome!

The pollen allergy is an interesting question....I have never really had a problem with allergies before, and I am on Remicade now. I do live in Florida and the pollen here is out of control. Both of my parents and my son have really bad allergies.

If the immune system is suppressed and you ordinarily have a difficult time during pollen season, I could see how it might get worse.

Are you on any type of allergy meds at the moment? Perhaps your GP can prescribe something to make life a little more bearable!

Good luck!
 
I have a question. I'm just out of my loading doses now(the 6 week one was yest now I wait 8 weeks for my next infusion) everything went well and I didn;t feel as achy as I usually do. My question is though about an hour or two after my infusion I start getting really bad back pain down where my kidneys are and no rudding or anything helps the pain. It doesn't subside until roughly 10 at night and after I've had several glasses of water and after I pee. I think it's more kidney pain than back pain. Just wondering if I should be concerned or if it's normal?
 
I've never had kidney pain associated with the Remicade, I do however have a lot of problems with kidney stones b/c of the Crohn's.

Have you seen a urologist to rule out stones/other kidney problems?

Don't wait too long, I had a stone that calcified and stuck in between my ureter and kidney. It blocked passage from the right kidney, and I lost a lot of function (I think it is roughly 25% functional now). It took 4 surgeries to get it straight, so don't wait if you think there is a problem!!!

Good luck, let us know what happens!
 
I'm at 500mg every 6 weeks. It doesn't completely take care of my pain, but makes it bearable.

Have you noticed specific things that aggravate your condition? I've identified a handful of things that definitely increase my pain level...
  • Stress
  • Overeating
  • Excessive junk food (sugar)
  • Certain foods like corn

What are your Crohn's triggers?
 
I got infusion #23 today, and everything went fine. I'm still at 400mg and 8 weeks, and I'm not sliding inbetween infusions, so I am optimistic it will continue working for a while.
 
I was on a 400mg/8week schedule for about 1 year, but my fistula didn't go away - which is causing other complications. So, the doc's got me jack up on more dosage. I go for my MRI this week to see if things have improved. Next step is to jam some TISSEEL in there to see if that can seal up the fistula.

I'm finding that peanuts, lettuce, really spicy food tend to not agree with my colon.
 
Gearing up to start remicade treatments within a month or so. The side effects sound scary, but so is the pain from the crohn's!! Anyone have any major problems with side effects, other than it just not working for them? I am sure some may have said previously, but 40 some pages is a lot to read! Any helpful feedback would be appreciated. I am assuming we all get nervous with side effect possibilities!!! Thank you in advance!!
 
Dear Stacichristine: my daughter, who is now 13, has had 2 loading doses (her 3rd is this coming Monday) and she has had (KNOCK ON WOOD!) very minimal, if that, side effects. After the first dose she was totally wiped out, had a headache and stomach-ache. After the second dose, she was wiped out, but much less so. But the biggest news is the improvement after just two doses! Her numbers are normal for the first time in over a year, she's gaining weight and growing. So I hope the best for you.
 
Shansmom, awesome news!! I am quite a bit older than 13! LOL but hopefully I can have the same success! Been living with this for WAY too long! Thank you so much for your information!!! Good luck with everything!!
 
Remicade Failing

My Daughter is 9 yrs old and is on remicade at 24ml per kilo every 4 weeks this is the 3rd time the dosage has been raised and its only been 6 days since her last infusion And heavy amounts of blood are back in her stool again .they are sending us for a surgical consult this coming wednesday. Any suggestions?
 
I was nervous too - thinking that I would be sick all the time. I actually hesitated getting Remicade for awhile, but like you said, the pain become so intense that I had to give in. Anyway after 1 year of taking Remicade, I haven't had a special problems from the drug, and have felt much better. It's really helped to bring down my inflammation (before Remicade my ESR [Sed Rate] was peaking around 90, now I'm around 20-22.) So Inflammation not in the normal range, but doing better. I don't have any other 'tricks' for your first infusion, except maybe get yourself laptop so that you can watch a movie (or hulu) during your infusions. :)
 
Thank you System-X! I appreciate your input! I still have a few weeks before I can start with treatments due to all the blood tests and such, but I am still nervous! Thank you for taking time to respond!
 
Clint ~ So sorry to hear about your daughter. Is she on any other meds aside from the Remicade?

I hope surgery brings her some relief if the Remicade isn't helping any. Good luck.
 
Glad to find this thread. I was diagnosed with UC in 2000 and then rediagnosed with Crohns in 2009. I have been on Remicade about 2 years now with minimal side effects. I go every 8 weeks and it has been working well (I'm not on any other meds now, though I have been on almost all of them at some point). The past few infusions I have had a jump in blood pressure and I think perhaps I am not accepting it as well as I was. Anyone have bilirubin values jump above normal while on this? Or weight jumping up?
 
I'm not sure about the bilirubin values, but my weight did increase a bit when I first started Remicade. I'm pretty sure it was because I could finally eat and put back on the weight that I had lost.

Is the jump in blood pressure outside of the normal range? It may not be associated with the Remicade but I would mention it to your doctor just to be on the safe side.

Good luck!
 
Thank you, SaraAnne :) Yes, the diastole goes above normal during the infusion (the past two infusions) and then seems to return to normal after. My specialist is "watching" the bilirubin values (apparently this can happen when the liver reacts to the remicade, which also has given me gallstones - like we need more things in the mix lol) The weight gain was pretty substantial and my diet is consistent with what it was before the remicade so I can't quite figure that one out. It feels almost like prednisone weight gain with additional swelling above the waist. very odd. But at least I have my life back to almost normal :D I anticipate they will either change my dosage/schedule or suggest I go on Humira. Thank you again... it's nice to connect with others taking this road :)
 
I'd be interested to know if the weight gain is from the remicade. Did you ask your dr about it? I am getting ready to start remicade also, and have struggled to lose weight. I have an appt tomorrow with my GI, so I am now going to ask if that is possible side effect. I am on prednisone now and have still been losing weight, so I am hoping this is NOT the case! Could it be that you aren't reacting well to the treatments?
 
SarahAnne said:
Clint ~ So sorry to hear about your daughter. Is she on any other meds aside from the Remicade?

I hope surgery brings her some relief if the Remicade isn't helping any. Good luck.
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she is also on pred 15mg per 5 ml taking 7ml a day and omeprazole 20 mg and poly iron 7 ml a day
 
I gained 25 pounds in the past 3 months since starting Remicade. I also quit smoking for 2 of those months (I started back), so it may have been that. I'm working to get it off now.
 
I have just been diagnosed with Crohns and I also have Anklyosing Spondalitis. I have tried Humeria and Enbrel but got hives and chronic UTI's so now my GI doctor and my Rheumatologist are starting me on Remicade. Has anyone had UTI issues with it?
 
Dr wants me to star remicade which I've heard has terrible side effects can y'all tell me your side effects and if you would take it again if u had the choice
 
HI Chelsey. I was scared too, especially after reading about potential side effects. I've had 4 doses so far, and my tummy is sooo happy. So far, no side effects and I'm very vigilant. I am retaining some fluid in my extremities however, which had never happened before. Nothing outrageous but I can't wear my rings. Good luck.
 
Welcome to the Club, Shai_93, ChrisL, and Chelsey79!

Remicade has been wonderful for me!! I don't really have any side effects except for fatigue the evening after the infusion and some times into the next day. I'm not really sure if that is the Remicade though, I get benadryl as a pre-med and I think that is what wipes me out.

I believe Remicade was the push my body needed to get into remission. Hooray!!

Good luck, I hope it works wonders for all of you as well!!
 
Any troubles getting insurance in USA

My family is thinking about moving to the USA for my husbands work, I was just wondering if anyone found it hard to get insurance. I'm on remicade and have crohns disease?
Thanks,
Jaime:shifty-t:
 
Jamie, I'm sure there are a bunch of options to consider - I've noticed that in healthcare, there is next to zero standardization. Each situation will be a slightly unique.

1) You can get under your husband's insurance - Most private insurances will give a 90 day waiting period.

2) You can get insurance with state high risk pools: http://www.naschip.org/states_pools.htm. You'll likely need to make a case with them, as they also have potential waiting periods.
 
I think a lot will depend upon what insurance company your husband's company offers and what they cover. Hopefully you won't have too much trouble. Best of luck and welcome to the US.
 
Remicade Cost

For anyone on Remicade in the US that has Insurance. I have been approved for Humeria and Enbrel in the past so I am not really concerned about the approval for Remicade but does insurance also cover the charges for the infusion ? Is there normally a co-pay? I have Anthem Blue Cross.
 
ChrisL - I know that Remicade costs my insurance $21,000/infusion (Washington State). I pay my premium and deductible, the insurance covers the difference. I guess it depends how much is covered based upon your insurance plan.
 
Hello everybody. This is my first post. I've been on Remicade for approximately 6 years and it has worked great for me. Before Remicade I had multiple surgeries and was in the type of agony that many of you know too well. A couple of resections and several for fistulas followed by an ileostomy to help the fistulas heal. I remember being asked by a nurse to describe the pain on a scale of 1-10 and replied teeth marks in the counter top. The Remicade healed my fistulas and I was able to have the ostomy reversed and the plumbing put back to normal.
I have a slight reaction every time and am tired the next day but but then am good for the next six weeks. Great quality of life!
The reason for this post is that I am from Ontario, Canada and rely on the Ontario Trillium foundation, a government department put in place to help pay for expensive drugs. Anybody that has dealt with them knows what is involved. In short, I have been a patient advocate in the past and have been chosen to participate in a round table discussion on dealing with Trillium. If there is anyone from Ontario that has or is having problems dealing with them, specifically with their "Exceptional Access Program" let me know and I can put it forward.
 
Joining the club

Hi, all-

I had my first infusion this morning, and I'm feeling okay, if a little rundown. I was able to get it in my student health center, which was really convenient and I had a private, quiet room. The whole process took about 3 1/2 hours total, and I believe I received 400 mg. My GI didn't want me to take prednisone or benadryl prior.

Fingers crossed I start to experience relief soon and don't experience any side effects!
 
I've posted this elsewhere on this site but thought I would post it here too so that others that are wondering or worried about starting Remicade might see my experience:

I was diagnosed in 1993 with Crohn's. I had a colon resection in 1994. Another in 2000. I was on Cipro and Flagyl with minimum syptoms until 2006 when I had serious flare ups and started getting perianal fistulas. The fistulas got worse and increased in number. After a half dozen surgeries to try to fix them the sugeon decided I should have an ileostomy to try and give everything the chance to heal. I didn't recover well from the surgery and my bowels refused to restart. I was in hospital over a month without eating and lost almost 50 lbs even on TPN. When I got out I was put on Remicade and the fistulas started to heal. I was able to have the ostomy reversed about five months later. I am still symptom free, back up to a normal weight (5' 11", 180) and have an excellent quality of life. I get Remicade every six weeks and always have a mild reaction where my head turns bright red and feels like it's going to explode. After a brief pause I'm good to go for the rest of the infusion which takes about 5 hours for me. All in all I'm pleased with how things are and keep my fingers crossed that the Remicade keeps working.
 
Trip - awesome to hear that Remicade is working for you. It's begun to really work on my internal fistulas, once I doubled my dosage and went every 6/weeks.
 
remicade

Have only been diagnosed with crohns for about 8 months now. Was on Cimzia but will be starting rem wed, this stuff just keps getting beter and better.
working on my seconf abcess, this one is taking over a week to drain and filed up half of one butock.
 
Vein issues :(

My problem is although I havent started Remicade yet, Ive had CD for 21 yrs, lots of iv`s & blood drawn. Ive had them in my feet neck, everywhere. Running out of veins! Where do they usually start iv for infusion?
 
HI Kendra....They can only use one arm on me, and my veins are old and tricky. The usually use the ones on top of my hand. I've had cancer so understand the 'lots of' blood drawn and iv's. The hand works fine for now.
 
I've been lucky to date and have good veins that are prominent and don't roll away. One thing that is a good idea is to drink an extra glass or two of water the night before infusion to ensure hydration which does help make the veins easier to find and as we know only too well dehydrarion can be a problem when the Crohn's is acting up. I usually get the IV in the forearm and most of the nurses that do this are good at it. They have heating pads too which also helps find a vein.
 
Last time my hand was used, we rotate from spot to spot and my veins are still good after 30 plus years of needles.
 
ur lucky

JudithC said:
HI Kendra....They can only use one arm on me, and my veins are old and tricky. The usually use the ones on top of my hand. I've had cancer so understand the 'lots of' blood drawn and iv's. The hand works fine for now.
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i have none in my hands arms or feet left. Last 4 times i was in hospital they had to use the vein in my right side of my neck done by an Anesthesiologist, he blew that one, so the turned me almost upside dwn in bed & Finally got one started in my left side of my neck....it lasted about 1 day with all the anti-biotics I was having to have during the stay :( I have had to leave against Medical advice 3 times cause i dnt have any income, or insurance. Im going Bankrupt for Medical bills. Just no help financially for someone my age.....believe me ive looked & called EVERYONE where i live. :ymad:
 
Have you asked or looked into asking for charity paper work at the hospital. Some hospitals won't inform the patients that this is an option.

Don't be ashamed. I had to ask for that paper work during my hospital stay, as my insurance was only going to cover a small portion. But I'm making over the 400% above poverty limit. I had to work out a payment plan with the hospital - cost me a small mortgage.

http://www.ehow.com/how_5175569_apply-charity-care.html
 
SystemX- I used to live is Kirkand Wa.- Evergreen Hosp used to have a plan to help pts with medical costs.

I am going to start Remicade soon. I had my TB test done my blood work done. Now I wait for my drs office to call me tomorrow. The "Ins lady", I am guessing she will tell me how long the approval process will take. I am hoping not long. I am not afraid exactly but, anxious. And that leads to cramps and diarrhea. Its kinda hard to work that way as I work retail and I really dont like leaving my customers.

I am wondering if its better to go the hosp out pt direction or infusion ctr. I may not have a choice. I do not have an HMO so hopefully this will not be a painful process of getting the approval.:rof:

Does anyone have any advice? What should I take? What can I expect on my first go round? ( I am sure one of these posts have all the answers! but, thank you in advance for your answers!!)

Oh the unknown......It sucks!

I am guessing I cant get my tattoo while on Remicade??:(


Lauren
:Flower:
 
I make too much money to apply for their charity program - but not enough money to get heavily damaged by medical bills. The middle class is doomed.
 
Hi Judith - It was Evergreen asking for my income when I had a hospital stay due to my Crohns. (All my employer offered was a mini-medical plan! It's like selling a car without a seat belts without telling you until you're going 100mph).

I was going to tell them to send the bill to:

Mr. A. Hole
3 Times Daily Ave
Crampsville, MA
 
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Starting remicade & methotrexate

First time poster. Have had seronegative spondyloarthropathy (basically anklyosing spondylitis) since 2003. Took flurbiprofen and sulphasalazine to control it. Stopped sulphasalazine in spring 2011 to get my wife pregnant. Late summer 2011, back pain ramped up with Crhon's like symptoms. Turns out I have Crohn's colitis.

GI stopped flurbiprofen and prescribed pentasa. Only saw minor improvement with pentasa, and it won't manage my arthritis, so GI is starting me on Remicade, Methotrexate, and folic acid. My first injection of the remicade is next week.

What should I expect at an intitial injection appointment?

Will I be able to drive following the injection?

Would love to hear anyone's experience with the Remicade/Methotrexate combo.
 
I had my first infusion of Remicade yesterday. I do not have medical insurance. Thankfully the Cleveland Clinic (which I am lucky enough to live so close to one of the best hospitals in the world), has been willing to allow 10 0% financial assistance as I currently have no income either. This was very helpful since I just had an $85,000 surgery and hospital stay in Feb of 2012.

My GI dr tried to get me into a study of Remicade so I could receive the med for free for a few years. It turns out I did not qualify due to having in place a mushroom catheter.

Anyways my GI turned me onto Remicade assistance through Johnson & Johnson. They are supplying me with a years supply of the medication while waiting to hear about medicaid & disability.

I am thankful for all the help the Cleveland Clinic has offered me. I was in desperate shape and down to 125 lbs. Quite thin for a person who is 6'5". Glad to say I have already gained back 16 lbs. and another 50 would be great but I don't see that happenning.

I must say for those that do not have any coverage, ask dr, or hospital about financial assistance. I was always embarrassed to ask for help. It finally got to the point where I was suffering so much, I had no other options. DO NOT feel embarrassed about needing help, it is out there!!!
 
Hello! New member here. I have been on remicade since spring of 2004 and it has been a blessing to say the least. The only side effect I get is a little bit of fatigue after the infusion. I recieve my infusions once every 8 weeks in the same spot (inside arm bend). The reason my doc put me on Remicade was because I had inflammation and a dozen ulcers in my ileum along with a fistula, which is a horrible and uncomfortable thing to deal with. However, Remicade healed the fistula, ulcers and relieved all inflammation. I used to take imuran along with the Remicade but it suppressed my immune system too much, so now I'm just on Remicade only. Luckily, I have only minor scar tissue from the flare up, but fortunately I don't have any pain to this day and it's been eight years. I'm thankful that Remicade has put the Crohn's into remission.

I was diagnosed in 1994 at 12 years old and went through an everyday nightmare with oral medication such as Asacol, Imuran and Prednisone, which was basically hellll due to the terrible side effects. These oral meds only helped a little and I was in constant pain and running to the bathroom frequently. I was on these three meds for 4 years and eventually the disease went into remission and then in 2004 a flare up occured as listed above.

The only downside is the cost of the Remicade infusions and my $400 a month (cheapest i could find) premium because I have independent health insurance. I'm back in college so I don't have insurance through an employer. The Remi-start rebate program helps with the cost, however it wasn't set up until about 2 or 3 years ago so I have major out of pocket balance piled up and I can only make minimum payments. Needless to say I'm not gaining any ground on what I owe to the GI provider.

When it comes down to it, the high cost of Remicade is absolutely worth it in my opinion.
 
Sorry I've been away for a bit everyone, hope you are all doing well!

Off to my Remicade appointment now. Looking forward to the break, things have been non-stop lately. Although I'm not looking forward to being completely wiped out tonight. Maybe not this time, right?
 
June 4th is the date of my first Remicade treatment. I dont know how I feel besides I have faith it will work. There are other feelings I am just not sure what they are!

After your treatments I have read here that you can feel tired. Anything else? Anyhing I need to have on hand that night? I plan on going to work the next day. Hope that works!


Lauren
:tongue:
 
I've been on Remi for the past 8 months. For those asking about what to expect, my experience was not much besides feeling a bit tired afterwards and during (they load you up with Benedryl to avoid allergic reaction). Unfortunately, I'm flaring right now and have been for the past 6 weeks despite having an infusion only 4 weeks ago. My blood tests show that I have an adequate level of Remi in my system so it "should" be working, however it's not. I had been doing so good on it before, but I was also taking it with 6MP which I stopped because of the side effects I experienced. So now we're looking at either doubling the dose, or going every 4-6 weeks or switching to Humira. Anyone else had this happen?
 
I've had 5 doses of Remi so far and only had some problems with the very first one. It's the benedryl that will make you sleepy and groggy a bit so be careful if you're working with machinery. I'm sorry, Empress, that yours seems to have stopped working and I do hope that some med adjustments will help you regain stability soon.

I'm facing another problem in that my breast cancer has decided to return so am dealing with possible bilateral mastectomy. I'm just making sure that all Doctors involved with my body are speaking with each other, and taking it all one step at a time. So far, even with this stress, the Remi is helping to keep tummy under control, so that's one blessing.
 
Sorry to hear about your cancer recurring, but glad at least the Remi is working! Good that your doctors are coordinating so as to account for the immune suppression. Good luck and prayers for the best possible resolution and a strong recovery!

Tracy
 
Hi New Poster here-
My son was diagnosed with Crohns in 11/2010. He has been on Pentasa & Enticort. The steriods seemed to help his intial flair -The Pentasa seems to be worthless :(
He now has a new doc that ordered the works-Fresh labs-colonoscopy/endoscope and ct scan. The resuls were alot of diseased bowel-the illium was almost completly shut-ulcers-1 polup and a fistula forming. He has been put on arthropine (*please forgive spelling errors) an imune blocker and he wants to start him on remicade Monday.
My son is 18yrs old & due to graduate HS next Thursday-
I am trying to find out if you guys have any advice-I know he needs to start quickly but it would break his heart if he cant walk across that stage-Also I am worried about T-cell Lymphomas-
What questions should I ask-What expierences have you guys had? Does this sound like a good treatment plan? Any help would be greatly appreciated
Thanks :)
 
Also does anyone know whay they always seem to start remicade first then go to humara? Seems like the humara has fewer reported side effects-It seems like they would start with that one-Am I missing something?
 
Hi,

Sorry to hear about your son! I don't have any experience with Remicade or Humira, and don't want to hijack this thread by talking about another treatment... but, please read through some info re Enteral Nutrition. My son was 16 when diagnosed last year and this has been his only treatment thus far (only medication is an antacid). It's not as commonly used in the U.S. as it is elsewhere so your GI may not have suggested it. However, it does have a comparable success rate at inducing remission as steroids, provides nutrition, has anti-inflammatory properties and has NO side effects!! :D It is not as successful, however, at maintaining remission and, I have read, that it is most effective if the disease is in the TI or small intestine... In any case, it has kept my son almost symptom free for a year now! It can also be used in conjunction with medications.

Lots of info on EN in the Parents with kids w/IBD and in the Treatment section.

Just one comment on Remicade though... my understanding is that Remicade may be the most effective at treating fistulas - perhaps why your son's GI recommended it???

Sending good wishes for your son! And, congrats on the Grad - my son is also graduating HS next Thursday! :D
 
Hi there and sorry to hear about your son. The reason they suggest remicade first, as it was explained to me, is that it's been studied and used as an induction therapy to quickly get inflammation to subside with the goal being remission. Remicade has been around longer than Humira so there are more studies and if you're flaring badly as your son is with significant inflammation and/or blockage you want to go with a biologic that can quickly get things under control. I asked the same question as I'd wanted to go on Humira also because it's made with a human protein you don't have the anitbody issue you can get with Remi (mouse chimera), however chose to do the induction therapy (infusions closer together 4,6 then 8 weeks out) and, for me, that worked to stop the inflammation. My dr said there was no reason you couldn't try the same thing with Humira as they do a loading dose in a similar way, but he said there weren't studies of the drug being used that way and that there were proven results with Remi.

Hope this is helpful and good luck to you and your son!!
 
empressreggie said:
Hi there and sorry to hear about your son. The reason they suggest remicade first, as it was explained to me, is that it's been studied and used as an induction therapy to quickly get inflammation to subside with the goal being remission. Remicade has been around longer than Humira so there are more studies and if you're flaring badly as your son is with significant inflammation and/or blockage you want to go with a biologic that can quickly get things under control. I asked the same question as I'd wanted to go on Humira also because it's made with a human protein you don't have the anitbody issue you can get with Remi (mouse chimera), however chose to do the induction therapy (infusions closer together 4,6 then 8 weeks out) and, for me, that worked to stop the inflammation. My dr said there was no reason you couldn't try the same thing with Humira as they do a loading dose in a similar way, but he said there weren't studies of the drug being used that way and that there were proven results with Remi.

Hope this is helpful and good luck to you and your son!!
Click to expand...

Yes-That was extremly helpful!! I know that his Doc is ready to be aggressive. I am just worried about the really bad side effects-If it goes well it will be great but if it goes bad it can be fatal :/
I am not sure that we really have a choice
 
The fatalities from Remicade were due to bacterial infections in elderly patients. Dr's require a TB test first as that was an early issue with using the drug. From the studies I've read and the information that's available on line, Remicade, like all the biologic drugs have associated risks but if you look at the numbers they're not common. Some people do have allergic reactions to Remi, they give Benedryl to avert some and titrate the med slowly. I was also scared at first reading the potential side effects of Remi (and frankly all biologics) but in balance especially if the disease is progressing and surgery will be required if it's not checked, the potential good outweighed the potential bad for me. I was in danger of a blockage due to severe inflammation that was in my transverse colon and the Asacol did nothing and I wouldn't go on prednisone given my past experience with it.

Let us know how it works out.
 
Hey Tess-I pulled up the information on Enteral Nutrition-I can see how taht would make it much easier on the lower intestines & I will definatly keep it in mind.
We go to the Doc Fri & he is suppose to meet with the remicade nurse for labs on Monday-
He has National Honor Society Awards Tuesday-that he really wants to go to & of course he takes the big walk (graduation) on Thursday-Got a full ride acedemic scholorship!!
I used to e-mail all of his teachers at the begining of each semester to explain his condition-Sadly few of them ever read it..They never even tried to understand.
Poor kid busted his buns for years to go to college-Now he is right there-can almost taste it and has the mother of all flairs :(
 
empressreggie said:
The fatalities from Remicade were due to bacterial infections in elderly patients. Dr's require a TB test first as that was an early issue with using the drug. From the studies I've read and the information that's available on line, Remicade, like all the biologic drugs have associated risks but if you look at the numbers they're not common. Some people do have allergic reactions to Remi, they give Benedryl to avert some and titrate the med slowly. I was also scared at first reading the potential side effects of Remi (and frankly all biologics) but in balance especially if the disease is progressing and surgery will be required if it's not checked, the potential good outweighed the potential bad for me. I was in danger of a blockage due to severe inflammation that was in my transverse colon and the Asacol did nothing and I wouldn't go on prednisone given my past experience with it.

Let us know how it works out.
Click to expand...

Thank you so much Empress :)
I have been doing the research but some of the studies are hard to read & even harder to understand.-I am literate-have a masters degree but when it comes to reading medical studies my eyes cross and my mind turns into a fruit salade lol
The study i found stated that the fatal hepatosplenic T-cell Lymphomas were found in young adult male patients-
He is in an intense flair-Doc couldnt even get the scope in to see the ilium so I am sure this has to be done
 
ellewoods said:
Hi, all-

I had my first infusion this morning, and I'm feeling okay, if a little rundown. I was able to get it in my student health center, which was really convenient and I had a private, quiet room. The whole process took about 3 1/2 hours total, and I believe I received 400 mg. My GI didn't want me to take prednisone or benadryl prior.

Fingers crossed I start to experience relief soon and don't experience any side effects!
Click to expand...


My nurse says that drs that do not order benadryl have a god complex. :yfaint:
 
Hi, all-

I'm desperately in need of some guidance/insight on an Remicade insurance issue. I have a GI provider at a major hospital, but my primary care provider agreed to write my Remicade orders so I could get my infusions at my much closer university health center. I've had two infusions so far; both went off without a hitch.

I just spoke with my GI about an unrelated issue, and he raised the possibility of my insurance not paying for a Remicade order not written by a GI or Rheumatologist. Has anyone been denied because of what type of doctor wrote the order? I'm freaking out about possibly having to pay for both infusions out of pocket. I have a PPO, so did not need pre-approval for the infusions. Any guidance would be greatly appreciated!
 
ellewoods ~ I'm not really sure, I think it would depend on which insurance carrier you had. If the insurance does deny the claim is there any chance your GI would step in and write a letter to the insurance company stating the medical necessity of the drug? Even if he didn't write the initial order, it might suffice.

If it was me, I wouldn't contact the insurance company just yet. They are notoriously terrible about not wanting to cover things we need for various reasons. If it slips by and they cover it, great! If not, get your GI involved and fight it.

Good luck!
 

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