Remicade Club Support Group

Mine start with saline,hydrocortisone and then remicade.

I have Ulcerative Colitis. I was diagnosed in 2006 but I have been having diarrhea for 17 years ( since 1997). I had an Anal Fistulectomy in 1992 and a Rectal Abscess surgery in 2002 and another one in 2009. I had my gallbladder out in 1995. Four months ago I started to get very constipated, so I had a colonoscopy with my new Gastroenterologist on August 21st and am now waiting for the biopsy results.

My question is : how bad does your Ulcerative Colitis have to be in order for your doctor to recommend infusion drugs ? Are infusion drugs given to people after everything else hasn't worked ? My Rheumatologist sort of mentioned Remicade to me about 7 years ago for my arthritis ( ? ) but it was never taken any further than just bringing it up lightly in a conversation that we had.

My sister has RA and I think he doctor mentioned Remicade to her also but she doesn't want to have the infusion medications. I think she takes Methotrexate.

I had a severe Crohn's flareup for six months which caused severe inflammatory skin disorders, edema and anemia my GI told me that since the Prednisone, 6-MP and Asacol did not work and that Remicade was the best option for me.

Its helping a lot so far.

To my surprise during my last infusion I sat across from a lady in her seventies who'd been getting Remicade infusions for sixteen years.

Snitzer1 said:

I had a severe Crohn's flareup for six months which caused severe inflammatory skin disorders, edema and anemia my GI told me that since the Prednisone, 6-MP and Asacol did not work and that Remicade was the best option for me.

Its helping a lot so far.

To my surprise during my last infusion I sat across from a lady in her seventies who'd been getting Remicade infusions for sixteen years.

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Tomorrow will be infusion number three.The two previous times I was the only one having an infusion.Feels kinda odd sitting there all by myself for a couple hours.I'm not really a small talk kind of person,so maybe it is a blessing in disguise.

Glad it is helping you Snitzer1.It helps me also,we are fortunate. :thumleft:

I have my third one next Tuesday. I am starting to feel better.

My Crohn's isn't that bad and my GI doctor prescribed Remicade because steroids and 6MP didn't work. My colonoscopy shows the Crohn's ulcers so my GI believed in aggressive treatment to prevent it from getting worse, even though I only have occasional diarrhea.

Cat1653 said:

I have my third one next Tuesday. I am starting to feel better.

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I just got home from my third infusion.I feel I am benefiting from them as well.On to the every eight week plan now.Hope you continue to feel better.:thumright:

dear crazycat: I have been having diarrhea for 17 years and no one has ever recommended the infusion drugs. I just started having bad constipation the past four months, so something is changing in my body. I had a colonoscopy and I am waiting for the biopsy results.

dave: After the infusion do you feel weird or anything ? Can you drive yourself home ? Will insurance companies cover infusion drugs ? I have a new health insurance company this year. I know that this is the Remicade Support Group and I am not on the Remicade, but I starting writing here so I could find out more information about it. Thanks for listening.

Ann Morgan said:

dave: After the infusion do you feel weird or anything ? Can you drive yourself home ? Will insurance companies cover infusion drugs ? I have a new health insurance company this year. I know that this is the Remicade Support Group and I am not on the Remicade, but I starting writing here so I could find out more information about it. Thanks for listening.

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Hi Ann, I will jump in here - I feel a bit tired after my infusions, but I do get IV Benadryl just prior so it is probably from that. I do however drive myself to/from, with an hour drive each way. One day I even had my infusion in the morning then went straight to work!

Most insurance companies require pre-authorization for Remicade, I know mine (Empire Plan-United Healthcare) requires recertification every 6 months.

pasobuff said:

Hi Ann, I will jump in here - I feel a bit tired after my infusions, but I do get IV Benadryl just prior so it is probably from that. I do however drive myself to/from, with an hour drive each way. One day I even had my infusion in the morning then went straight to work!

Most insurance companies require pre-authorization for Remicade, I know mine (Empire Plan-United Healthcare) requires recertification every 6 months.

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When I was getting the infusions, they would give me Benedryl and Tylenol beforehand. It would usually make me drowsy.

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Ann Morgan said:

dave: After the infusion do you feel weird or anything ? Can you drive yourself home ? Will insurance companies cover infusion drugs ? I have a new health insurance company this year. I know that this is the Remicade Support Group and I am not on the Remicade, but I starting writing here so I could find out more information about it. Thanks for listening.

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I drive myself.I do get a bit drowzy during the infusion,of course I recline in an easy chair with a warm blanket over me and read.I bring my lunch with me and eat it after the infusion in my truck.When I am finished with lunch I feel fine and am able to drive.I have them on my day off from work but feel I could work if I needed to.

Infusions,like most everything,falls into the everybody is different category.

I am going through the Remicare program the company that makes Remicade offers.Your GI's office should have Remicare information or maybe check their homepage.

Ann,
My GI doctor didn't prescribe Remicade until I tried other drugs first, namely Entocort (steroid) and 6MP. It's not used unless other (milder) drugs are tried first.
Remicade doesn't make me drowsy, but the antihistamine I take just prior to it makes me a little tired, but I have no problem driving back home or doing my normal routine at home. I even work out when I get home sometimes.

My first infusion is this Saturday. I've got high hopes.

DJW said:

My first infusion is this Saturday. I've got high hopes.

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I hope it works for you.Good luck!

DJW said:

My first infusion is this Saturday. I've got high hopes.

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The best advice I can give to anyone getting their first infusion, speaking as a former hypochondirac is to read as little as possible about the potential side-effects of Remicade because your imagination can run wild during the session.

And the nurses are very attentive, checking your blood pressure periodically and the IV drip.



So far its helped me a lot. I've had weight gain but that's stabilized.
Also some other side-effects but at this point the benefits outweigh them by far.

Thanks. I'm aware of the side effects, but I have so little intestine left surgery is no longer an option.

I guess I'm counting myself out of the "Remicade club" now.I, unfortunately have recently built up antibodies to it just shy of the 1 year mark. It worked great for a while.My GI switched me from every 8 weeks to every 4, but by that time I was only getting a few days of relief and it just wasn't worth staying on. My last hope is Cimzia but the doctor has little hope for me and cimzia since I have failed Humira too.What are you supposed to do?It's worth a try, at least, right?

Once you build up antibodies, do they ever go away?Would remicade ever work for me again?

First infusion went fine. My lips got a bit tingly part way through so they gave me benadryl.

Just had my third infusion. Ate something and went home and took a nap. I feel fine now. Now I am going on the once every 8 week plan. Does this work for osteo arthritis also? I am going off Prednisone and my right knee is already starting to hurt.

I think it would.

Had a bunch of blood work done before all three infusions. Just went on line and checked today's and the counts were excellent. Hooray!!!

Had my first infusion last Saturday. Really hungry tonight. Coincidence?

Cat1653 said:

Just had my third infusion. Ate something and went home and took a nap. I feel fine now. Now I am going on the once every 8 week plan. Does this work for osteo arthritis also? I am going off Prednisone and my right knee is already starting to hurt.

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Remicade is used for rheumatoid arthritis.

I have Ulcerative Colitis. I just had a colonoscopy and the results were normal ! Say What ? I also suffer from arthritis and joint disease and osteoarthritis. I am seeing my Rheumatologist on Wednesday. All my doctors do is send me to Physical Therapy. I go to PT and spend a lot of money and go home feeling pretty much the same. I want meds ! I want to wake up in the morning and not hurt in my hips, shoulders and neck. Sometimes I cry because I cannot stand the pain ( although my pain threshold IS very low ). I think the crying is more over frustration that things never seem to be getting better and I am getting older. I am tired.

Yeah, I watch my mom who is 75 and can't walk very well at all and I see me going down the same road. Not something to look forward too. I did water aerobics for a year and a half and even after my knee replacement. When my Crohn's started acting up I quit going. I need to get back to the gym. Sometimes moving helps. Not always though.

Yeah, I really need to get into the pool here at my apartment complex. It's free and I don't have to pay for it. It is hot here in Arizona now, so this would be the perfect time to do exercises in the pool. I have only gone into the pool once this summer. We have been having storms here every week and the pools have been getting dirty.

I'm confused about flu shots.My GI wants me to have one,my colorectal surgeon does not.

I don't know which one to listen to.I'm at the midway point between infusions.

GI dr and infusion center to me no flu shot

Yep, looks like I'm definitely going to be joining the club. Either next week or the week after, they're just looking at their availability. I was hoping to avoid it with EEN and diet, but had another blockage and just can't afford to keep getting blockages. Hoping that Remicade will help.

I had my third infusion yesterday and I still feel like dog doo doo. One nurse told me it takes about 3 treatments before you will notice improvements, but a different nurse from yesterday told me it takes at least 7 treatments.

*SIGH*

So I guess I'll be one with the toilet until at least next Spring. This is really ridiculous.

I don't know when yet, but I will be seeing my doctor in the near future and we have GOT to figure out some way at least of taming my damned poops. I can't function like this much longer... I can't even really do it now.

Sorry to hear that. I was told 3 infusions.

I think it's different for all of us. Same with how often we have to get them. I've been taking max dose every 5 weeks for 18 months. The doctor just added methotrexate shots weekly. I'm down to 5 to 7 a day. Still not great but better than it was.

I felt noticeably better after my second infusion.I had my third three weeks ago and my next is 11-4.I've been feeling more fatigued since my third one,I don't know if it is related. My fistulas are actively draining,my colorectal surgeon says that is a good thing.I can put up with fatigue if it gets rid of these fistulas.

I just had my third one and I feel great. I have gained weight because I was on prednisone for almost four months. I am hoping to lose it now that I am off.

Excellent.

Now got my start date for Remicade. I will be getting my first dose on 2nd October. So a little wait yet, but that's fine as I have active inflammation but I'm not really in pain. Just keep getting blockages because of the inflammation.

gemling said:

Now got my start date for Remicade. I will be getting my first dose on 2nd October. So a little wait yet, but that's fine as I have active inflammation but I'm not really in pain. Just keep getting blockages because of the inflammation.

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Not too long a 'hurry up and wait'. I hope Remicade works for you.

dave13 said:

Not too long a 'hurry up and wait'. I hope Remicade works for you.

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Thanks, Dave. I hop so too. So tired of EEN, which I've been advised to stay on at least until I start on Remicade.

I just made the jump and told my GI's office to start the ball rolling on insurance approval to start Remicade last month. I've had sporadic SBOs for about 9 years that usually resolve on their own with no day-to-day symptoms, so have really dragged my feet about starting medication. I just had a repeat MRE that showed that my inflammation has intensified over the past 18 months (despite felling OK and no SBOs for the past 5 months) with an impression of the beginnings of fistulization at one spot, so it looks like it's time to get started. Kinda freaked out about it...

syzygy said:

I just made the jump and told my GI's office to start the ball rolling on insurance approval to start Remicade last month. I've had sporadic SBOs for about 9 years that usually resolve on their own with no day-to-day symptoms, so have really dragged my feet about starting medication. I just had a repeat MRE that showed that my inflammation has intensified over the past 18 months (despite felling OK and no SBOs for the past 5 months) with an impression of the beginnings of fistulization at one spot, so it looks like it's time to get started. Kinda freaked out about it...

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I know the feeling. I keep getting SBOs too, but have only been fairly recently diagnosed. I am at therapeutic levels with my Azathioprine and it's really not been doing anything to help, so I've had to make the same decision to step up my treatment. I start next Thursday. Hope you get your insurance approval soon so that you can get started soon.

I am now apart of the remicade club too! I had my first infusion on Tuesday, and I am already noticing a difference with my fistula draining less and the other ones that I have that are blind ending that were very swollen and painful, are less swollen and don't feel them as much when sitting! I am very excited and can't wait to see what else happens!

And question, in my stool this morning I noticed there was this clear mucous looking stuff, almost looked like clear phlegm, very weird. Has anyone else experienced this?

Glad it went well.

Melissadempsey728 said:

I am now apart of the remicade club too! I had my first infusion on Tuesday, and I am already noticing a difference with my fistula draining less and the other ones that I have that are blind ending that were very swollen and painful, are less swollen and don't feel them as much when sitting! I am very excited and can't wait to see what else happens!

And question, in my stool this morning I noticed there was this clear mucous looking stuff, almost looked like clear phlegm, very weird. Has anyone else experienced this?

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Good for you.I noticed a difference right away as well.A certain amount of mucous is o.k. I believe.I had some too.Perhaps someone will enlighten us on the mucous content in stool.

Wow,I'm writing this during breakfast.Adds the extra ambiance to meal time,I guess. :yfaint:

gemling said:

Now got my start date for Remicade. I will be getting my first dose on 2nd October. So a little wait yet, but that's fine as I have active inflammation but I'm not really in pain. Just keep getting blockages because of the inflammation.

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I just had to move my infusion date to the 2nd also (due to one of hte nurses getting called for jury duty! :boring: ).....this will make it 4 days 'early' - but shouldn't be a big deal...I hope I can go back to my normal day after this which will make my next one 4 days 'late'...I have gone a week either way in the past with no ill effects.

One good thing - it will put a little more time between the infusion and my annual scope, which is on the 10th!

pasobuff said:

One good thing - it will put a little more time between the infusion and my annual scope, which is on the 10th!

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Good luck with you scope, pasobuff! Hope it will show the infliximab is working for you.

Thanks gemling! So far it has, this will be two years between scopes o hoping all still looks good

Good luck with the scope pasobuff, I haven't had one in nearly 3 yeas, and hoping not to need one for a while.

Thanks Judith.....I have always been told they should be done every year to two....depending on disease involvement.....I'm at the point now that annual scopes are recommended......I always say the drugs are the best part!

pasobuff said:

Thanks Judith.....I have always been told they should be done every year to two....depending on disease involvement.....I'm at the point now that annual scopes are recommended......I always say the drugs are the best part!

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Good luck on the 10th! I like being 'knocked out' during these procedures.

dave13 said:

I'm confused about flu shots.My GI wants me to have one,my colorectal surgeon does not.

I don't know which one to listen to.I'm at the midway point between infusions.

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I've never had the flu nor have I ever had a flu shot.I plan on keeping it that way!

Dixiedoll23 said:

I've never had the flu nor have I ever had a flu shot.I plan on keeping it that way!

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Yeah,I really didn't want one.I never had one before either and had to think on it for a few days.If I wasn't on Remicade,I would have opted out of the shot.Here's hoping your 'not getting the flu' streak continues for a very long time. :thumright:

I get the flu shot every year and it is worth it to me. I had the flu really bad before and I would like to avoid it if I can. I have enough gut issues already.

Hopefully we all avoid the flu this year,flu shots or not.

Hello all, Soon to be new to this club (they will tell me this coming thursday what they are putting me on)....

A few quick questions...

1. What is the longest anyone out there has been on remicade with success?
2. I have an anorectal fistula/abscess situation and currently have a seton in going on 3 years now. Has anyone out there had a similar situation that remicade has successfully helped? i am in a ton of pain back there and have been just dealing with it.

Hopefully someone out there can relate. I have avoided ALL medications since being diagnosed 3 years ago out of fear. I don't really have BM problems, just pain. But in reading some of the success stories, I'm really hopeful that this is the best way to go, just hoping to hear back with something a bit more similar to my situation...

Thanks for reading.
DB

DaveNotRoach, I've also been looking into that too. I had resisted meds for over a year, but recently decided to start Remicade after getting a repeat MRE showing expanded inflammation. If you dig around on the threads in the Remicade section of the forum, you'll definitely find a sprinkling of people who have been on Remi for a while and a bunch who had very quick responses, especially in situations with fistulizing Crohn's. There are certainly a few stories around about people developing resistance to Remi, but a few people have written about being on it for 8+ years, such as one here:

http://www.crohnsforum.com/showthread.php?t=65074

Good luck with things.

DaveNotRoach said:

Hello all, Soon to be new to this club (they will tell me this coming thursday what they are putting me on)....

A few quick questions...

1. What is the longest anyone out there has been on remicade with success?
2. I have an anorectal fistula/abscess situation and currently have a seton in going on 3 years now. Has anyone out there had a similar situation that remicade has successfully helped? i am in a ton of pain back there and have been just dealing with it.


Thanks for reading.
DB

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I have been on Remicade since 2005 with great success.....it took care of the multiple fistulas I had and I have been able to remain in remission with good/clear scopes.

Remember that your symptoms with the fistula/abscess mean that the disease is active, even if you don't have other symptoms and the longer you stay off medications/treatment the more damage that can be occuring in your body.

I'm happy for the Remicare program...of course,if it wasn't so expensive....I wont go down that road. :ymad:

I was on Remicade for 12 years. Work really good for me.

Has anyone experienced joint pain approx 24 hrs after infusion? Daughter's first infusion was fine until 24 hrs later. Excruciating knee pain woke her up. She is ready for second infusion Friday and is a bit concerned about same thing happening again. Dr told her it happens to some...???? She is planning to take Tylenol for a day or so after infusion. Any thoughts?

Dear Desperatemom,

This also happened to me, however, only after I completed the induction doses and had received a few regulars doses….many months later. In short, the Remicade itself can cause this horrific pain or if the body builds up antibodies. If I understand your post correctly, this is the induction period, thus, it is highly likely it is the Remicade itself. Please proceed with great caution, the joint pain associated with this is extremely painful. With that said, the transiant joint pain I endured prior to begining Remicade - was equally painful. In fact, Remicade was like a miracle drug very quickly ending my joint pain. Until my body built up antibodies. Then suddenly within 24 hours after receiving my infusion, the pain was horrific. The next infusion, the pain ensued with a vengeance within 48 hrs.

God Bless.

Napali Coast, than you for your feedback. Yes, the joint pain she had was about 24 hrs after her first infusion. She never had any joint pain prior to Remicade. I did take her to hospital where her GI looked at her knees for signs of redness or swelling and found nothing. He attributes it to the Remicade. Bloodwork has been done and she had built no antibodies. She says the pain was excruciating and she only had that one episode which lasted about two hours. Pain was relieved with Tylenol.
Im pretty frightened of her second dose even though she says she will just take pain killers for 48 hrs after infusion. Keeping fingers crossed same thing doesnt happen again.

If I understand correctly you
suffered of joint pain prior to any Remicade treatment? Did you build up antibodies which brought on the pain?

Thank you!

Warm Greetings to everyone....I hope those of you achieving relief from Remicade will continue to do so....I am new here to offer, hopefully, support and share info on Crohn's and info regarding attempted treatments, diet and generally living with this disease....I began having probs when I was 7 but had my first surgery when I was 10....at first the thought it was Ulcerative Colitis but soon became apparent it was Crohn's......more surgeries to follow through the years....I am now 48.....

Regarding Remicade.....my post here is not to alarm anyone and I hope this does not happen because my intent is only to inform.....stay well researched and on top of the info regarding that 'drug' because I am one of many who have had the infusions for years....am no longer on it, I took myself off after the intolerable side effects and also after more research discovered more about it......it is derived from the antibodies taken from the spleens of mice among other components that are questionably experimental and controversial....it has indeed now been "Black Labeled" by the FDA due to the permanent damage it has done and is doing to many of us and the rise in lawsuits ....and deaths.....the makers of Rem have stated on some previous links in forums I've been in that Letters to Doctors regarding this information have been sent out, and Remicade is being forced to the feet of the FDA again to be removed from the Market entirely but thus not yet the case, obviously.......

Some people have no change at all after having been on it......some seem to benefit.....others have dark consequences or perm damage from it and I am one of those people ...there is no reversing the effects. Remicade and Medical data show that most probs begin after having been on the infusions for two years or more...and side effects or damage can occur years after having being taken off the medication. I was taking the infusions for over five years and have been off it even longer......

Intensive Research by many of us 'old Cronies' of many years show the best results for calming our Crohn's symptoms are less stress, more hydration, more organics and diet proves to be a very individual thing......something called LDN had proven to do wonders for us Crohn's patients ..... Low Dose Naltrexone .... however not easy to get your hands on depending on where you live and your individual Medical Team or Family Doctor.....there are many Crohn's support groups and I am finally excited about something so cheap to purchase makes a bigger difference for us with few to zero side effects......but the dosage and red tape is not yet cleared in The States for proper use of is for Crohn's.......not a money maker like Rem.......... :/

I wish all of you healthier happier lives and tons of love is coming your way xoxooo
Do your Research....YOU decide your treatment to the best of your ability...and listen closely to your body.....no one knows your body better than you.....xoxo

~ Little Doe

This is so freaky! As Im writing these posts my daughter just texted me to say same knee
Pain just woke her up but this time one knee! She is such a trooper. She said she took Tylenol and put a heating pad. I wanted to head to her house and she said " no mom, I have it under control this time! It will eventually pass". Wish I had her strenght! I dont know how all of you do it! You are all amazing warriors of this horrible disease.
Little Doe, I hear you! I know there has to be something out there that would be effective and less risky...but its all about pharmaceuticals and making money! Sad!

Grandpas Little , Thanks for the information . I have done some research but not as deep as you have .
I'm going through severe knee pain rite now. My rheumatologist has done everything but check for build up of antibodies . I have been taking remicade almost 2 year along with 6mp that I have been on over 3 years . I done good for almost a year then the movement of my knees hurt and ankles and feet swelling was so bad the top of my feet looked like water jiggling when touched and my muscles are sore with spasms. I have reported to both GI and Rheumatologist Drs for onset until now Rheumatologist won't do the test but GI has it order in 3 weeks because I just had infusion 10/6/14 . My GI said there was something new we could try . I will ask about the Naltrexone. Thank You again for information!!

My next infusion is 11-04,my first maintenance dose.I had bad joint pain after my first infusion,mild pain after the second and no pain after the third.I do worry about future side affects.

I see my colorectal surgeon in two days for a post fistulotomy follow up.I'm gonna ask him about Entyvio and Naltrexone.

Dave13 thats a great idea to ask. My daughter is the one that communicates with her dr and Im going to mention it to her. They communicate via email because dr says its the quickest way to respond to his patients unless its an emergency. Obviously, cant meddle too much in a 26 yr old's life! Thank you for sharing the joint pain issue after Remicade. Her present demon is the Predisone. She says she is 100% sure its the culprit for her current issues. Says she hates dosage times because once it starts fizzling out, her stomach is fine. Still has a few more weeks of weaning off but she is going to check with dr today and see if she can start cutting back more than 5 mg every four days.

Dear Desperatemom,

It's a pretty amazing feeling having a daughter who is a warrior - no doubt, the apple doesn't fall far from the tree. I have been Blessed with one too.

Yes, one of the excruciating side effects of Crohn's Disease is joint pain, and at times it is transient. My transient joint pain was prior to starting Remicade and after verifying with a Rheumatologist, tests, etc. - completely Crohns related.

In short, by the end of a typical day, I would have tremendous pain in a joint or even several joints. When I would awaken the following morning, the pain would be gone. The pain would come back the next evening, at times, in different joint(s). It was like a bad movie - I would awaken and it would be gone and then by nights end it would come back. However, as time progressed, the pain remained longer and longer each time. This was clearly associated with my Crohn's Disease flaring. My drug choice was very conservative; Asacol with an occasional Norco for pain. The Norco would only take the edge off, and my doctor later prescribed Ibuprofen (NSAIDS) which worked extremely better. However, relying on Ibuprofen for too long can create issues… such as, blood loss. In my case, ulcers formed in my stomach and I slowly lost blood over time - ultimately leading me to immediate hospitalization so I could receive four (4) blood transfusions.

It was at this time, I finally pulled the trigger to aggressively treat my disease, thus, I began Remicade. The induction period was amazing, it was as though my prayers were answered and I received immediate healing. This lasted for several months, however, after taking a 9 week break from Remicade; my joint pain was back shortly after receiving my next maintenance dose. My doctor prescribed me small doses of Prednisone to help with pain, however, it really did not help much. After my next maintenance dose, within 48 hours I again had excruciating joint pain and my doctor suggested Nopraxam (NSAID) which was not the best idea given my previous blood loss due to Ibuprofen (NSAID).

My results from a Prometheus blood test proved, that although my Remicade trough was zero, I had built-up antibodies of approximately twelve (12.0). My doctor then suggested we double the dose to 800mg every four (4) weeks - which I tried for two (2) cycles before slamming on the brakes. In short, it gave me no relief and I believe it was clearly the Remicade, at this point, causing the excruciating joint pain. For when time would lapse after my maintenance dose - I began to feel better. Or in other words, when my trough (Remicade almost out of my system) was low I felt significantly better. My doctor wanted to continue with the Remicade and I said NO!

In closing, I suggest that you and your daughter keep a detailed log of everything - from food consumed to when the pain emerges, etc, etc. In addition, ask about supplementing your daughter's Remicade with 50mg of Imuran - for it has been studied that Imuran can help reduce your bodies ability to build-up antibodies aganinst TNF blockers.

I understand that it is only when your quality of life and pain is at excruciating levels do we decide to aggressively treat our disease. For me, the building of my antibodies could have been because I went 9 weeks after my succesful Remicade treatments until I received my next maintenance dose. Unfortunately I will never really know. I have now begun Humira - and the jury is still out.

How bad is your daughter's joint pain on a scale between 1 - 10? Also, has she had any other pain other joints, etc.

My thoughts and prayers are with you both.

Napali Coast, sounds like you have been through the wringer with joint pain.

My daughter has had Crohns for about 15 years but diagnosed about six years ago. No dr really knew what she had and treated her for everything and anything related to stomach issues.

Her only Crohns symptom is stomach flare ups. After reading posts on this forum, I truly feel blessed that her symptoms are limited to that in spite of her struggle. She has never ever had joint pains, not even growing pains. The knee pain she experienced was so bad she said it was off the chart! She said it was the worse pain she has ever had.

Today, three days before her next infusion, she said knee pain woke her up at 5:30 am. She said it was only one knee and it was tolerable. She said she took two tylenols, put hit pack on knee and it went away pretty fast

It seems like everyone in this forum have their own unique stories and side effects but are bonded by the same horrible disease!

I truly admire the strenght and endurance each and everyone here has!

Thank you once again for your feedback and advice. It is indeed very helpful and educational. I thought I knew everything about Crohns, but now I see I knew very little!

Dear Desperatemom,

I was diagnosed with Crohn's in 1993 and feel blessed that I would only have 3-4 flares per year. Then one of the Crohn's side effects came my way…. severe transient joint pain.

Many years ago doctors took the approach of saving the "big guns" (drugs) for later down the road - as the disease significantly progressed. After many studies it has now been deemed to be aggressive taking the bull by the horns. Thus, the disease is stopped quickly from destroying your small intestine, colon, etc. In addition, the severe side effects are held at bay.

I have no doubt your daughter will thrive throughout her treatment(s). She sounds very determined and strong - hence, Remicade, Tylenol and heat.

Medical science is advancing so quickly and her age is a significant advantage - she will overcome this disease and live a very productive happy life. The overwhelming majority of us on this site is a testament to that. There will be some bad days….. but there will be many many more - good days! In fact, there will be times (months and years) thats she forgets that she even has Crohn's.

The following is a link to upcomimg free web and teleconference educational seminars hosted by CCFA:

http://www.ccfa.org/assets/images/wrapper/e-news-header.jpg

She is so Blessed to have you as a mother and right by her side!

God Bless.

Below is a new Link to the upcoming free CCFA web and teleconference educational seminars:

http://online.ccfa.org/site/MessageViewer?dlv_id=169254&em_id=166397.0

Napali Coast, thank you so much for the links! Every story is inspirational! We must have faith that one day, there will be a cure or safer drugs to tackle this! In the meantime, we need to enjoy every single great second of our lives so that we can take on those tough minutes sent our way.

God bless and warm hugs from sunny Miami! Lol

Grandpas Little Doe said:

Warm Greetings to everyone....I hope those of you achieving relief from Remicade will continue to do so....I am new here to offer, hopefully, support and share info on Crohn's and info regarding attempted treatments, diet and generally living with this disease....I began having probs when I was 7 but had my first surgery when I was 10....at first the thought it was Ulcerative Colitis but soon became apparent it was Crohn's......more surgeries to follow through the years....I am now 48.....

Regarding Remicade.....my post here is not to alarm anyone and I hope this does not happen because my intent is only to inform.....stay well researched and on top of the info regarding that 'drug' because I am one of many who have had the infusions for years....am no longer on it, I took myself off after the intolerable side effects and also after more research discovered more about it......it is derived from the antibodies taken from the spleens of mice among other components that are questionably experimental and controversial....it has indeed now been "Black Labeled" by the FDA due to the permanent damage it has done and is doing to many of us and the rise in lawsuits ....and deaths.....the makers of Rem have stated on some previous links in forums I've been in that Letters to Doctors regarding this information have been sent out, and Remicade is being forced to the feet of the FDA again to be removed from the Market entirely but thus not yet the case, obviously.......

Some people have no change at all after having been on it......some seem to benefit.....others have dark consequences or perm damage from it and I am one of those people ...there is no reversing the effects. Remicade and Medical data show that most probs begin after having been on the infusions for two years or more...and side effects or damage can occur years after having being taken off the medication. I was taking the infusions for over five years and have been off it even longer......

Intensive Research by many of us 'old Cronies' of many years show the best results for calming our Crohn's symptoms are less stress, more hydration, more organics and diet proves to be a very individual thing......something called LDN had proven to do wonders for us Crohn's patients ..... Low Dose Naltrexone .... however not easy to get your hands on depending on where you live and your individual Medical Team or Family Doctor.....there are many Crohn's support groups and I am finally excited about something so cheap to purchase makes a bigger difference for us with few to zero side effects......but the dosage and red tape is not yet cleared in The States for proper use of is for Crohn's.......not a money maker like Rem.......... :/

I wish all of you healthier happier lives and tons of love is coming your way xoxooo
Do your Research....YOU decide your treatment to the best of your ability...and listen closely to your body.....no one knows your body better than you.....xoxo

~ Little Doe

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Hello Little Doe,

You have a interesting story. I'm on rem now I've just started with first three doses. I will be getting my 4th dose at end of this month.
I will look into this Naltrexone. Thank you for sharing. Hope all goes well for you.

Thanks for the information. I also just started Remicade and am experiencing relief for now. This forum a great place to learn what to look for. I have always experienced minor symptons until this year. It amazes me how people keep going. Keep up the support we are all in this together. No one else understands what we go through.

Hi everyone, I just had my second dose of remicade on Tuesday, and am feeling discouraged. After my first dose, my fistula that was draining a lot came to a complete halt, and stopped draining and started shrinking, and the other fistulas I have that are blind ending, stopped hiring and werent swollen. It kept getting better and better until the day before my second infusion (Monday) I noticed they were hurting a little bit again, and the one fistula drained a tiny bit, didn't think much of it. Now today (two days after infusion) it is draining a decent amount, although not as much as before, but has steadily increased since Monday. Has anyone experienced a "relapse" so to say around second infusion? Should I just continue to monitor symptoms and not worry about it for now? Thanks for any input

I had same experience. It did eventually get better, but still had some issues until doctor added methotrexate to the mix.

Melissadempsey728,

Hang in there! I would give the full induction period/dosing an opportunity to work for you. In addition, you may want to keep a detailed log of what you are experiencing. I believe you soon will be witnessing very positive results. You did not mention any joint pain associted with your first infusion - this is a very good thing. Even if you did experience some mild joint pain, etc., I would continue with the induction period.

In a few posts above, I posted a link(s) to some free CCFA educational web and teleconference forums - there are three in total which may very helpful.

Better days are coming - hang in there!

God Bless

Hey all, so it's official. Starting on remicade (don't have a date yet though) along with 6MP. I'm a little worries about the mix! So much misinformation out there... Does anyone have knowledge or experience with these two as a mix? Does it really increase the chances I the big C or is that just old outdated thought process at this point? Thanks all!

Melissadempsey728 said:

Hi everyone, I just had my second dose of remicade on Tuesday, and am feeling discouraged. After my first dose, my fistula that was draining a lot came to a complete halt, and stopped draining and started shrinking, and the other fistulas I have that are blind ending, stopped hiring and werent swollen. It kept getting better and better until the day before my second infusion (Monday) I noticed they were hurting a little bit again, and the one fistula drained a tiny bit, didn't think much of it. Now today (two days after infusion) it is draining a decent amount, although not as much as before, but has steadily increased since Monday. Has anyone experienced a "relapse" so to say around second infusion? Should I just continue to monitor symptoms and not worry about it for now? Thanks for any input

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I've had a similar issue after my second infusion. My energy didn't pop this time and my skin ulcers didn't look any better. One of the Remicade veterans reminded me remission isn't necessarily going to happen after two infusions. I'm keeping that in mind and not going to be discouraged.

I hope you feel better soon.

Have Remicade infusion tomorrow. I've been tapering down Entocort to 3mg as of this week. I've noticed these last few days an increase in joint pain. Today almost unbearable. Had to cancel work in fact. Praying Remicade helps the pain although have not noticed it having an effect on pain before. Would like to know what seems to work best for joint pain. Seeing Gi end of the month and he wants me to try combo of remi and 6mp. Not too thrilled about that. Like the previous post would also like to know if you all have found that to be safe

Maxwelljax said:

Have Remicade infusion tomorrow. I've been tapering down Entocort to 3mg as of this week. I've noticed these last few days an increase in joint pain. Today almost unbearable. Had to cancel work in fact. Praying Remicade helps the pain although have not noticed it having an effect on pain before. Would like to know what seems to work best for joint pain. Seeing Gi end of the month and he wants me to try combo of remi and 6mp. Not too thrilled about that. Like the previous post would also like to know if you all have found that to be safe

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Hi Max,
I'm new to the remicade but I'm am taking 6MP 2-50mg daily. I was taking 3-50mg but that didn't work out for me my white cells dropped. They lowered it to 2-50mg and I'm starting my 4th does of remicade in the end of this month. Like others I noticed my drainage from my fistula started to slow down that made me happy then it would drain more, It's up and down for me. So it drain every day. I'm a plumber and I'm on my knees all the time, I haven't seen any signs of joint pain thank God! This fistula is more then I want!! Everyone reacts differently but this sight is very helpful. Only we can understand what it is like to live with this pain in the ass! LOL

I'm a Master plumber and I can't fix my own plumbing!
I hope it goes well with you.

Three treatments now and if anything, I am getting worse.

Thanks Kevin and yes I too am use to having a pain in the ass lol. I have to say though that fistula seems better. Still have 1 seton in but I hardly notice it now and there's really no drainage. Not sure whether that's good or bad. Don't see the surgeon til December so I won't worry unless I have pain.

Lofnewt... Hang in there. I really didn't see much difference til about #5.

Just wondering how many of you still had to watch your diet and alcohol intake while on remicade?

I do watch my diet, but I wasn't told to in relation to my treatment or anything.

My GI has just recommended Remicade + Methotrexate (to prevent antibodies) so will now join this Forum. I had been following the Humira Forum as this had been the anticipated course of treatment subsequent to completing latent TB treatment. However, we have now switched treatment choice.

Welcome Jay! There's lots of great info here. Good luck with treatment.

@MaxwellJax..I'm finding this so confusing. I had just started to accept Humira as the treatment option for me. My current GI has so recommended Remicade + Methotexate in the current "go forward plan". I understand people have had success with Humira for perianal fistulas but it is the Remicade trials that measured fistula closure as a study endpoint? Plus,the Methotexate is used to prevent antibodies from developing? Again, it will take me some time to understand this...

I've not heard that about Methotrexate but that doesn't mean it doesn't work in that way. I do know that Remicade has a much better success rate in closing fistulas but you will read success stories here from those who are on humira too. This disease is crazy and treatments seem to work differently for all of us.

Hi Max I am looking to see this fistula to dry up. I had mine seton in place since last September 2013. For the first 6 months I couldn't work or sit. Then we tried Humira for about 7 months. Then switched to Remicade 10 weeks ago. I have another fistula in fact I'm going in next week to have my second seton put in. I do hope this works. I asked about diets and there claim to me food is not the issue. Oh another issue for me I had large intestine removed 17 years ago because they said UC and I have J-pouch. After my abscess last year they I don't have UC but Crohns. LMAF what else can you do! Doctors call them selves a practice for a reason right.

i have been off remicade for about 1 and a half years, Gi wants to restart me on it, plus im taking Prednisone and Immran. Ive heard some have bad reactions starting Remicade after being off of it for so long. Any advice?

Need suggestions! What's the best drug recommendation in addition to Remicadee to help joint pain. Have been tapering off of Entocort. Down to 3 mg and joint pain is worse. Don't want to go back on Entocort if I don't have to. May have to switch insurance companies and will have no prescription coverage (hate the company husband works for!). GI recommends 6 mp with remi but I'm wondering if Imuran might work better. Appreciate knowing what works for you guys.

I have heard the risk is primarily developing antibodies and having a reaction. If you decide to go on it again make sure whoever is doing the infusion knows you were off it and are prepared for a reaction in case.

After waking up to another perianal abscess this morning : (( .I'm calling my Drs office this week to order Remicade & start the process. I just met with her this past Wednesday on October 8th. & told her I still needed time to think about the Remicade. On Wednesday I didn't have an abscess... I no longer need time to think...Do most of you have Methotrexate with the Remicade to prevent antibodies? OR has monotherapy with just the Remicade been successful?

Oh no Jay...I'm so sorry! That is just how unpredictable and fast acting this disease is. Definitely sounds like a decision to start Remicadee. I can't tell you what to take to keep from building up antibodies. I'm tapering off Entocort but will need something to support the remi and help with joint pain so I will be addressing that with GI later this month. Good news for me though... Excruciating pain yesterday almost gone today after yesterday remi infusion. Good luck and keep us posted.

Maxwelljax said:

Oh no Jay...I'm so sorry! That is just how unpredictable and fast acting this disease is. Definitely sounds like a decision to start Remicadee. I can't tell you what to take to keep from building up antibodies. I'm tapering off Entocort but will need something to support the remi and help with joint pain so I will be addressing that with GI later this month. Good news for me though... Excruciating pain yesterday almost gone today after yesterday remi infusion. Good luck and keep us posted.

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Isn't that unbelievable..The GI on Wednesday was so awesome. Recommended Remicade ASAP for Perianal Fistualizing Crohn's . I thought I'm watching my diet, bloods are great, colonoscopy looked pretty good. I can hold the fort & live with the three existing perianal setons no need for big drugs : )

It's crazy! But the fact that you must still have active disease means you really have to treat it. I know when I formed the 2nd abscess and fistula I had been told no sign of active disease too. When I had the setons placed again there was supposedly no sign of active crohns. I think the docs don't really understand either. We know how we feel so we are our best advocates.

Remicade ??

Ive been off remicade for over 2 years n my new Gi wants to put me back on it. Ive heard it wont work. Any advice?