Remicade Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Napali Coast said:
Aloe, My heart goes out to you. Joint Pain is one of the main side effects of Crohn's Disease. The Doxi (antibiotic) may have compounded the joint pain some what - however, your Remicade restart will most likely help you in a very short amount of time. Before your next Remicade Infusion you may want your doctor to order a Premetheus Blood Test. This test (IFX) will messure how much Remicade remains in your system. In addition, it will identify if your body has built- up any antibodies to the Remicade.

In closing, again, my heart goes out to you - one of the most painful things I have ever experienced is the joint pain associated with Crohn's Disease. The joint pain is often transient - moving to different joints almost daily. In fact, it is similar to and often diagnosed as Palindromic Arthritis (pain in differant joint sites -almost daily and starts and ends quickly). However, as my Crohn's has progressed, the joint pain has become more constant - and worsening at night/end of day. This issue is very quickly resolved upon receiving a Remicade Infusion, thus, becoming pain free once again.
Click to expand...

Thank you Napali Coast. I'm scheduled for a Remicade infusion next Friday, so I am praying that will help. It's been very weird this week because after stopping the Doxi, the joint pain almost went away completely. The last 3 days I've felt so much better. Then I just started 6-MP, and boom, I woke up in the middle of the night with the joint pain back in my hand. I took two Tylenol and was finally able to get back to sleep. It's better this morning, but now I'm worried again. Maybe it's not the Doxi, and maybe it was just a coincidence that it stopped and it's really from Crohns. Or maybe it's 6-MP causing it now too. I'm going to stick with this program until I get back on Remicade and hope that helps. Of course I'm reading the forum and seeing that plenty of people get joint pain FROM Remicade. Arrrrg. Sometimes this forum scares me as much as it helps me.
 
aloe said:
I'm wondering how you tell when the fistula is closing. I'm hoping mine will, but don't know what to look for. QUOTE] <--- did I do the quote thing right?? LOL

Well I'm not sure what typical fistulas look like, but Makena's started like an abscess last summer that never healed. We were referred to a surgeon and she had a fisulotomy in November in which he, "filleted" it open. She was left with a shallow opening about the size of a golf ball, in the shape of a tear drop that started at her anus and extended wider about two inches up her buttcheek. It was awful. I didn't start to heal AT ALL until we started remicade. After four treatments, the tear drop opening is about the size of a dime. He also made an opening higher up to allow more drainage, thats still healing too. The surgeon had mentioned that if the fistula went deeper than he expected, we would have gone the seton route. Hers was very shallow, however the damage he saw when he got in there made him refer us to a Pediatric GI for a colonoscopy. She was diagnosed with fistulizing crohns and started Remicade the following week.
Click to expand...
 
Becky (aka Makena's Mom),

What a Blessing - incredible news! Your daughter is one strong little girl and she obviously gets that from you and her family. Her time playing on the beach and swimming in the ocean must have been so energizing for all.
 
aloe said:
Thank you Napali Coast. I'm scheduled for a Remicade infusion next Friday, so I am praying that will help. It's been very weird this week because after stopping the Doxi, the joint pain almost went away completely. The last 3 days I've felt so much better. Then I just started 6-MP, and boom, I woke up in the middle of the night with the joint pain back in my hand. I took two Tylenol and was finally able to get back to sleep. It's better this morning, but now I'm worried again. Maybe it's not the Doxi, and maybe it was just a coincidence that it stopped and it's really from Crohns. Or maybe it's 6-MP causing it now too. I'm going to stick with this program until I get back on Remicade and hope that helps. Of course I'm reading the forum and seeing that plenty of people get joint pain FROM Remicade. Arrrrg. Sometimes this forum scares me as much as it helps me.
Click to expand...

Hello Aloe,

Waking up in the middle of the night, due to pain; is disheartening. Have you been on 6-MP prior? If so, were you tested before your start-up of 6-MP to see if you are able to take this drug? (there is also a test done by Premetheus for this called TPMT). 6-MP / Azathioprine is often combined with Remicade. Some believe that it aides the Remicade treatment and possibly aides in not allowing Remicade antibodies to form. So….it may be a good strategy by your doctor knowing that you've been off your infusion schedule. If its the 6-MP, your doctor may want to reduce the dose to see if that will help and then increase the dosage - if it does. Unfortunately, I had a reaction to Imuran and was not able to take it prior to beginning Remicade in 2013.

Is there any chance that you can change your Friday appointment to an earlier date? That may be so helpful for you. I personally have received Remicade every 4 weeks and have felt incredible. However, similar to you, I needed to delay my last infusion due to a upper respiratory infection (believed to be bronchitis). My PCP prescribed back-to-back Z-Packs (2) and a Ventolin Inhaler. After 10 long weeks of waiting (the last 4 weeks enduring transient joint pain), I just received my infusion this past Tuesday morn 3/11/14. In fact, just hours prior to writing my first post on this forum; to you. Within hours of this infusion, I felt robust and my joint pain was gone - it was amazing!

However, later that Tuesday, I had received the results from my Prometheus test taken just 5 days prior, indicating I had a zero trough (no remicade in my system) and… I had surprisingly built-up low level antibodies to the Remicade. When I received word from my doctor with this info… I informed him I felt wonderful - joint pain free. Like me, he was very pleased and stated that we may need to re-infuse within the next few weeks - a wait and see.

Stunningly, within 7 hours of my infusion, my hands began to slightly stiffen. By nights end… my left hand, left elbow and ankles began to ache. The following morning (Wednesday), I was still in experiencing joint pain - I was amazed in how quickly my body turned. On Thursday, my body started to respond back to my Remicade treatment.

As of today, Friday, my pain has subsided and I feel as though my body is trying to accept / embrace the Remicade - back to my previous success level.

Again, today I bounced back - to about a 95% pain free level. What a carnival ride - I just pray my body was simply reacting to the delayed process in maintaining my infusion regiment and that the Remicade was now battling my low level antibodies that had formed.

In closing, I hope my experience(s), especially my last few days are helpful. However, whichever drug(s) our bodies respond to /embrace - we will ultimately be victorious - because we have God on our side.
 
That is amazing Napali Coast. I'm so glad you're feeling better.

You're very wise and it sounds like you have an excellent doctor. I talked with my doctor and she said basically everything you suggested. She wants me to get the Remicade sooner if possible, so I have a call in to the infusion clinic to see if there's a time I can come in before Friday. I had some other conflicts next week I was trying to work around, but have realized I need to move everything else and make the infusion top priority. She also said I could cut the 6-MP pill in half if I was worried it was causing the joint pain. But she was doubtful that was what it was. She suspects it's being off Remicade and the sooner I can get back on we'll know better. So I'm going to stick with the level of 6-MP I'm taking now, and just try and get my infusion sooner. She said if I stop and start with the 6-MP it could not work as well, and I want to give it every chance I can.

I'm on an every 8 week infusion cycle. I have a feeling increasing the frequency of that will be the next step if the 6-MP doesn't make the Remicade work as we're hoping.

This is my first go with the 6-MP. I've been on Remicade for about 8 months, and while I've been feeling much better, it hasn't made the stricturing go away in my intestine, or made my fistula close, so it's not working well enough. They're adding 6-MP in hopes it will aide the Remicade, exactly like you said.

I have had all the blood tests, including the Prometheus one, and I don't have antibodies.

So now I will just wait for the infusion, and take Tylenol if needed to get through.

Thank you thank you for your posts!!
 
Hi guys I have posted this in the treatment section wondering if anyone can give me some advice, thanks
Just wanted to see how often everyone in the uk gets their infusions. I have been get it every 6 weeks for the past few occasions but I have just been to get my latest one today to be told I can't get it every 6 weeks due to licensingin the uk ? Has this changed cause I'm sure people get theirs varying from 4-8 weeks.

Thanks guys
 
SubPir8 said:
My daughter has gotten remicade infusions now for about 4 years. Normally about 2 days before her infusion time, she starts showing indications of the disease (flushed face, lethargy, nausea). Once we tried to stretch her to 7 weeks and after watching her in pain for the extra days, we decided "Never Again".
Today, after missing her second day of school with her symptoms, I called her doctor to try and get her in 5 days prior to her 6 week point. Now I sit her waiting for her Doctor to call me back and explain why it is important to wait until 6 weeks.

I'm frustrated and don't understand.

Thoughts and Comments...........
Click to expand...

I would inquire with your daughter's dr about why the 6 weeks, it could be a combination of her age and trying to hold off immunity to the remicade. They may be trying to ensure it will work for her for a long time. On the other side of that, I get my infusions every 4 weeks and still tend to get symptoms about a week before I'm do. Though the severity of the symptoms seems to be becoming less with each infusion.

Hope this helps.
 
hey guys! recently started remicade after trying every other option, including 5 ASA's, Sulfa medications, 6MP, Tube feeding and Imuran. I was diagnosed when i was four and am now 19. Im going in for my 5th infusion in a few days. My dose has been doubled to 550mg and I go every 6 weeks. Its causing my severe exhaustion, joint pain that I didnt have before, insomia, and worst of all..... Face puffiness (being a 19 year old girl this sucks). I thought after i got off of 60 mg of Prednisone my face puffiness would go away and it did until my second remicade infusion. Also I have barely noticed a change in my symptoms... And i have SEVERE active Crohn's.... my doctors keep telling me to hold on and wait because the medication could take some time to kick in to full gear but i really thought i would be getting better results by my fifth one.... did anyone not get improvment until there 5th or 6th treatments? or did it work in 2 to 3 which is what i was told... all together this medication makes me feel like crap and if its not working i'd rather stop taking the risk and stop taking it... Spirits arent too high as ive been in a flare for almost two years now and was not able to attend my first year of university because of my illness. Im not sure what steps there are to take if this medication does not work, I was told test trials are the next option. any insight would be helpful
Thanks!
 
Try not to worry. I've never had any reaction, but just feel better afterwards. It's different for everyone of course, but hopefully you will be fine. You will be tired that day from the Benadryl though, so don't plan much else that day. Drink lots of fluids beforehand so they have an easier time putting in your IV.

Good luck!!
 
MMo said:
hey guys! recently started remicade after trying every other option, including 5 ASA's, Sulfa medications, 6MP, Tube feeding and Imuran. I was diagnosed when i was four and am now 19. Im going in for my 5th infusion in a few days. My dose has been doubled to 550mg and I go every 6 weeks. Its causing my severe exhaustion, joint pain that I didnt have before, insomia, and worst of all..... Face puffiness (being a 19 year old girl this sucks). I thought after i got off of 60 mg of Prednisone my face puffiness would go away and it did until my second remicade infusion. Also I have barely noticed a change in my symptoms... And i have SEVERE active Crohn's.... my doctors keep telling me to hold on and wait because the medication could take some time to kick in to full gear but i really thought i would be getting better results by my fifth one.... did anyone not get improvment until there 5th or 6th treatments? or did it work in 2 to 3 which is what i was told... all together this medication makes me feel like crap and if its not working i'd rather stop taking the risk and stop taking it... Spirits arent too high as ive been in a flare for almost two years now and was not able to attend my first year of university because of my illness. Im not sure what steps there are to take if this medication does not work, I was told test trials are the next option. any insight would be helpful
Thanks!
Click to expand...

I didn't really notice a difference until my 6th one and I go every 4 weeks. Some people I've talked to at my clinic said it didn't start until working for them until 10 weeks. I know it's frustrating, but I would try to hang on for another couple and maybe inquire about increasing the frequency and if there is anything that can be done about the side effects. Personally I get the exhaustion and migraines. I take maxaran with the remicade and sleep for 2 days after.
 
Hi,
I have been on Remicade for 3 months (5 treatments) and haven't noticed any difference in my Crohn's symptoms, but my GI said that it can take awhile for it to take effect. I guess there is also Humira and Cimzia, but your doctors would know better than me what the next steps are. But I think it is too soon to tell if the Remicade is going to work. Hang in there!
 
I've been on Remicade for over a year now and go in for the infusion once every eight weeks.

At my last infusion last week the nurse told the that the infusion time has been reduced down to one hour. I was surprised to hear that and ask if any earlier patients who had the one hour infusion experienced any reaction. I was happy to hear their response of "no"

My infusion went well and bonus was I had gained an extra hour to my day :)

I thought I'd share this with you'll as I'm not sure what time frame others received their infusion in other countries...
 
I have had IBD since I was 17. At age 53, after having a j-pouch and being on every med I was finally put on Remicade due to a fistula. I guess I was used to feeling a bit sick all the time because since starting Remicade within 2 months I was "well". I had forgotten what it was like. I only get symptoms when it is time for an infusion. I know I am one of the fortunate ones because it truly changed my life. I was walking with a limp due to joint pain prior to Remicade. I just didn't communicate with my doc how sick I was. I hope it works for you. To the 17 year old talk to your doc about another biologic. Don't give up! For me accupuncture will also help joint pain if I get it between infusions.
 
Usually I'm exhausted on infusion day but the next day I'm back to my normal state of fatigue. I have been so drained since my last infusion. Not sure what's up but I hope it passes because I feel like someone beat me up.
 
Hope you feel better soon ngng, I known down here there has been a pretty nasty bug going around - my daughter was sick for a few days and the 'worst' symptom was her having no energy...only had 1 day of a slight temperature then it was normal. She is now back to her bouncy self - she even told me yesterday that she was feeling 'really good' and had lots of energy...as she was racing around, climbing trees, etc...lol
 
Thanks paso. That's great to hear that your daughter feels good again! A lot of people at the infusion place were sick too, with all the weather fluctuation ppl are getting sick.
 
About to start Remicade on the 20th. The clinic lady said I should take the day off work but I was already scheduled and no one is willing to cover so hopefully I will be okay afterwards.
 
MMo said:
hey guys! recently started remicade after trying every other option, including 5 ASA's, Sulfa medications, 6MP, Tube feeding and Imuran. I was diagnosed when i was four and am now 19. Im going in for my 5th infusion in a few days. My dose has been doubled to 550mg and I go every 6 weeks. Its causing my severe exhaustion, joint pain that I didnt have before, insomia, and worst of all..... Face puffiness (being a 19 year old girl this sucks). I thought after i got off of 60 mg of Prednisone my face puffiness would go away and it did until my second remicade infusion. Also I have barely noticed a change in my symptoms... And i have SEVERE active Crohn's.... my doctors keep telling me to hold on and wait because the medication could take some time to kick in to full gear but i really thought i would be getting better results by my fifth one.... did anyone not get improvment until there 5th or 6th treatments? or did it work in 2 to 3 which is what i was told... all together this medication makes me feel like crap and if its not working i'd rather stop taking the risk and stop taking it... Spirits arent too high as ive been in a flare for almost two years now and was not able to attend my first year of university because of my illness. Im not sure what steps there are to take if this medication does not work, I was told test trials are the next option. any insight would be helpful
Thanks!
Click to expand...



I have gone for 5 infusions so far every 8 weeks and the only thing i have noticed is less D. Also less stomach pain. But my joint pain is STILL so terriable ..and i still sometimes get stomach pain
 
Sickishteennerdfangirl said:
I'm about to start remicade and I'm really scared.. Any advice?
Click to expand...

I had exterme itchingy first infusion amd from tjat day on i have to take premeds (tylenol and bendryl). I am VERY tired the day of my infusion. (so tired my husband has to tale the day off work to watch our lil boy). After that Im fine. I have to sit 3 hrs at the infusion center and because its an infusion center and not he hospital i cant have someone sit with me..but TJATS ok...i usually sleep the entire time.

Good luck. The hardest part is rem to always wash ur hands..dont touch ur nose, eyes etc to keep from getting sick! Supper hard with a 3 1/2 year old ;)
 
Just had my infusion Tuesday, go every 6 weeks now. I was in a rush and asked if they could administer it faster and I was told that your doctor can request a one hour infusion instead of two. Hope my doctor approves this.
 
Hey all, just started Remicade - had my second treatment on Tuesday, got hives after the first treatment and have them again this time although the crohn's is better the itching is driving me a little batty. From reading the other posts this seems to be pretty "normal" though is that correct?
 
Grumpy1 said:
Hey all, just started Remicade - had my second treatment on Tuesday, got hives after the first treatment and have them again this time although the crohn's is better the itching is driving me a little batty. From reading the other posts this seems to be pretty "normal" though is that correct?
Click to expand...

For me it was an indicator of allergy. (I eventually had to stop Remicade because it was so bad.) Mention it to your GI and see what they say?
 
Grumpy1 said:
Hey all, just started Remicade - had my second treatment on Tuesday, got hives after the first treatment and have them again this time although the crohn's is better the itching is driving me a little batty. From reading the other posts this seems to be pretty "normal" though is that correct?
Click to expand...

They can give u premeds..bendryl. Did u let them know ur itchy?
 
Sitting here for my regular infusion, number fifty something I believe.....waiting on the pre-meds, then nap time for a bit!
 
First infusion yesterday. Was there about 5 hours with all the talking and consent forms. 2 hours of actual infusion plus 1 hour wait with saline IV in. Feel pretty much the same as before. Tired that evening but hoping this will be the thing to kick me into remission.
 
Fosterfamily2303 said:
They can give u premeds..bendryl. Did u let them know ur itchy?
Click to expand...

Yes and they gave me Benadryl and Aerius during the infusion but I still got hives after the affects of those two drugs wore off. I reacted badly to the Imuran (got pancreatitis) so I'm really hoping that hives are a "normal" thing and that I can stay on the remicade because I'm not sure what's next otherwise.
 
Grumpy1 said:
Yes and they gave me Benadryl and Aerius during the infusion but I still got hives after the affects of those two drugs wore off. I reacted badly to the Imuran (got pancreatitis) so I'm really hoping that hives are a "normal" thing and that I can stay on the remicade because I'm not sure what's next otherwise.
Click to expand...

I take Imuran on a daily basis. I have had pancreaitis but it was from something in the formula for the TPN that caused it.

2
 
I may be becoming a member of this group very soon, methotrexate isn't working so in a week when I see my specialist it'll either be Remicade or surgery and I think we all know what I'd choose (Remicade) haha
 
Anyone else constantly getting sick after infusions? I've only had a few but something is always lurking! I had my infusion last Monday. That Friday, my son had the croup, pink eye, and a sinus infection. And of course I'm his caretaker, and of course I'm sick again. Can't stop coughing, sore throat, and soooo tired. It's so frustrating. Think I need to invest in medical masks... End rant :(
 
I try to stay isolated for the first week or so and carry a bottle of antiseptic hand wash all the time. I've only gotten sick once. I went to a Christmas party at a public venue and ended up with an abscess on my uvula.
 
Medical masks and hand sanitizer! I only ever got sick once since being immunosuppressed, and it was because I was taking care of my sick SO... If you really feel like you get sick that often, it might be a good idea to mention to your GI, though.
 
theOcean said:
Medical masks and hand sanitizer!
Click to expand...

Where do you get the masks? Also, do people give you looks like you are a walking bubonic plague? I think it would be great keeping people away from me because they'd think I was sick but I'm really protecting myself from them. But I don't know I could handle dirty looks.
 
Niminity: I've never really resorted to medical masks myself, but I also find I don't get sick since being on biologics and immunosuppressants! Just be careful, really.

booker2181: You don't have to. Just try to stay away from people who are sick and make sure to wash your hands often and be careful about germs.
 
So, I am having rotator cuff surgery on Thursday. I have 2 tears and the scapula has a bone spur that shreds muscle every time I move my arm. I called my gastrointestinal to see if remicade was doable 5 days after surgery. He said no problem. Get the infusion. I've already had sepsis once and do not want it again. Any thoughts?
 
carrollco said:
So, I am having rotator cuff surgery on Thursday. I have 2 tears and the scapula has a bone spur that shreds muscle every time I move my arm. I called my gastrointestinal to see if remicade was doable 5 days after surgery. He said no problem. Get the infusion. I've already had sepsis once and do not want it again. Any thoughts?
Click to expand...

My father (also has Crohn's) just had some corrective shoulder surgery done a few weeks ago and was totally fine, and hopefully it'll be the same for you!

Otherwise, there are concerns about Remicade just because of the immunosuppressive effects, but I'm sure you know the risks about it and so does your GI. Do your best to keep everything clean and sterile. :)
 
Has anyone experienced drug-induced lupus? I started Remicade about 9 months ago and the past few weeks have had hand and foot pain. I tested positive for rheumatoid factor and ANA was positive. The doctors are supposed to be setting up an appointment with a rheumatologist. So frustrated! My Crohn's is in remission. Had a great report on my colonoscopy from 3 weeks ago. So anyway I am guessing this is either RA or drug-induced lupus. :(
 
Angelique02 said:
Has anyone experienced drug-induced lupus? I started Remicade about 9 months ago and the past few weeks have had hand and foot pain. I tested positive for rheumatoid factor and ANA was positive. The doctors are supposed to be setting up an appointment with a rheumatologist. So frustrated! My Crohn's is in remission. Had a great report on my colonoscopy from 3 weeks ago. So anyway I am guessing this is either RA or drug-induced lupus. :(
Click to expand...

I was taken off of remicade last October because of drug induced lupus. It was awful. I was hospitalized and met with a Rhumatologist. I haven't been in remission (the Crohn's) in 2 years. For the most part all signs of lupus are gone now except for some arthritis in my SI joints (base of the spine)
There is discussion now about putting me on Humira but the fear is the lupus will react to any biological drug. *sigh* I guess I just have to wait and see.
Best of luck to you.
 
Was wondering if it took any of you (what feels like) a long time for the Remi to "kick in"?
My 13 year old has had the 3 loading doses plus 2 at 8 week intervals, so 5 total.
The 5th dose was raised from 5mg to 7.5mg but even that hasn't seemed to do much. He is on 30mg of prednisone which is what seems to be what's holding him together at the moment.
The doc says it takes time, but I'm feeling very discouraged at the moment.
 
I had to wait a long time, but eventually we got an antibody test and I found out I was highly allergic to it. I would recommend getting that done if you can if it still isn't having any effect. Your son may have to try another biologic.
 
Has anyone stayed on antibiotics while on Remi ? I've had 4 infusions and developed a new abscess. After 2 weeks on flagyl and Cipro abscess is nearly gone. Of course fistula is still there. Having CT in a week and back to GI. Want to continue remi because it has helped with symptoms but definitely don't want another abscess.
 
I have. I was on cipro/flagyl as well as minocycline. Eventually stopped the cipro/flagyl for my fistula after eight months, but I've been on my antibiotic for acne this whole time additionally as well. You should have no problem getting an infusion.
 
Thanks. I hope I can stay on both. The antibiotic combo seems to work better. I had my last infusion 3 weeks ago and don't get the next one for about a month so at the very least maybe I can stay on antibiotics until then
 
pasobuff said:
Sitting here for my regular infusion, number fifty something I believe.....waiting on the pre-meds, then nap time for a bit!
Click to expand...

Does ur pre meds make u sleepy all day? I have had pre meds day one due to a reaction...and i cant figure out if its the Remicade or the pre meds ..but Im soooo sleepy the day of my infusion. Today is my day
 
Niminity said:
Anyone else constantly getting sick after infusions? I've only had a few but something is always lurking! I had my infusion last Monday. That Friday, my son had the croup, pink eye, and a sinus infection. And of course I'm his caretaker, and of course I'm sick again. Can't stop coughing, sore throat, and soooo tired. It's so frustrating. Think I need to invest in medical masks... End rant :(
Click to expand...

I havent gotten sick but Im ALWAYS waahing my hands. Maybe if ur child sick..get aask for the first week..to let your body recover .
The only issue i have is hair falls out ALOT
 
Angelique02 said:
Has anyone experienced drug-induced lupus? I started Remicade about 9 months ago and the past few weeks have had hand and foot pain. I tested positive for rheumatoid factor and ANA was positive. The doctors are supposed to be setting up an appointment with a rheumatologist. So frustrated! My Crohn's is in remission. Had a great report on my colonoscopy from 3 weeks ago. So anyway I am guessing this is either RA or drug-induced lupus. :(
Click to expand...

I dont know what lupus feela like...but i have been dealing with pain EVERYWHERE for a while...toes, fingers, arms, legs..everywhere but the head Haha
 
I have experienced drug induced lupus but I experienced it from sulk and 5asa medications. Now that I am on remicade I have been experiencing strange side affects and I've tried speaking to my gi about it but since remicade is my last hope they are just watching me closely with blood tests. has anyone experienced problems with their jaw right after the infusion? mine gets clenched and extremely sore to the point i can barely open my mouth. I also have pain everywhere and sometimes problems with my vision. as the weeks go by after my infusion things seem to simmer down. But I am constantly sick swell. if someone coughs within a hundred yards of me I'll have a cold for weeks! this will be my second infusion on wednesday with my dose doubled and my 8th infusion in total. however, i haven't been seeing great results. Had a colonoscopy last week and I still have a lot of inflammation just waiting for my appointment about my biopsy's. Starting to get very frustrated though, really hoping ill finally be able to start university next year after not being able to go because of being sick this previous year and two years in high school. It sucks being 19 and not being able to live my life the way everyone else can! But thats my life I guess haha
 
Fosterfamily2303 said:
Does ur pre meds make u sleepy all day? I have had pre meds day one due to a reaction...and i cant figure out if its the Remicade or the pre meds ..but Im soooo sleepy the day of my infusion. Today is my day
Click to expand...


Nope! Usually the pre-meds would wear off by the end of my infusion and then I'd be fine the rest of the day. It's definitely a possibility though, since they basically sedate you.
 
MMo said:
I have experienced drug induced lupus but I experienced it from sulk and 5asa medications. Now that I am on remicade I have been experiencing strange side affects and I've tried speaking to my gi about it but since remicade is my last hope they are just watching me closely with blood tests. has anyone experienced problems with their jaw right after the infusion? mine gets clenched and extremely sore to the point i can barely open my mouth. I also have pain everywhere and sometimes problems with my vision. as the weeks go by after my infusion things seem to simmer down. But I am constantly sick swell. if someone coughs within a hundred yards of me I'll have a cold for weeks! this will be my second infusion on wednesday with my dose doubled and my 8th infusion in total. however, i haven't been seeing great results. Had a colonoscopy last week and I still have a lot of inflammation just waiting for my appointment about my biopsy's. Starting to get very frustrated though, really hoping ill finally be able to start university next year after not being able to go because of being sick this previous year and two years in high school. It sucks being 19 and not being able to live my life the way everyone else can! But thats my life I guess haha
Click to expand...


I would definitely raise the issues you've been having to your GI. That doesn't sound right to me. Ask for an antibody test for the next time you get an infusion -- you will probably have to call the GI about this. If you have antibodies, it may explain the reactions you're getting and if you are rejecting it or not. If so, you may have to try another biologic. In the meantime, you can ask for benadryl and/or steroids as pre-meds for the reactions.

It also sounds like you're too immunosuppressed to me. What other medications are you on?
 
Fosterfamily2303 said:
I havent gotten sick but Im ALWAYS waahing my hands. Maybe if ur child sick..get aask for the first week..to let your body recover .

The only issue i have is hair falls out ALOT
Click to expand...


Hair loss should eventually stop! I'm sorry you've had to experience that, though -- it's always unpleasant. :( Usually I only get that from prednisone.
 
Fosterfamily2303 said:
Does ur pre meds make u sleepy all day? I have had pre meds day one due to a reaction...and i cant figure out if its the Remicade or the pre meds ..but Im soooo sleepy the day of my infusion. Today is my day
Click to expand...

The benadryl makes me tired, but I bounce back for my (hour long) drive home - then I veg out and go to bed early...am fine the next day.
 
Hi everyone! I started Remicade January 2nd (happy new year to me...!). I've had 4 infusions so far, but unfortunately have to keep putting them off due to infections. Hopefully I'll be able to get on a schedule here soon. My doctor wants me to get them every 4 weeks and I'm hoping the medicine will break through all my scar tissue and start working!
 
I'm new to the club, my third loading dose is next week..yay! I was wondering if anyone else has joint pain now that they're on Remicade? I've noticed almost immediatly after my first infusion that my knees and finger joints are very achy. Anyone else?

Thanks for the responses!
 
I definitely had REAL joint and muscle pain for at least the first 6 months on Remicade. It seems to come back now when I'm due for an infusion, as does the tummy pain, but it's all very mild. Of course, I'm pushing 70, so that might have a bit to do with achy joints....LOL
I'm thinking I'm close to remission, and am accepting now the aches I do have and the few "go quickly" episodes. Hope your aches get better soon. Remi has done well by me.
 
JudithC said:
I definitely had REAL joint and muscle pain for at least the first 6 months on Remicade. It seems to come back now when I'm due for an infusion, as does the tummy pain, but it's all very mild. Of course, I'm pushing 70, so that might have a bit to do with achy joints....LOL
I'm thinking I'm close to remission, and am accepting now the aches I do have and the few "go quickly" episodes. Hope your aches get better soon. Remi has done well by me.
Click to expand...

Have you spoken to your GI about possibly adding an immunosuppressant, like Imuran, 6mp, or Methotrexate? If you're still getting a bit of pain, it may help, and could prevent the aches and pains you get close to infusion-time. :)

Otherwise, it's great to hear it's been helping you!
 
I was on Remicade for 9 months. It worked wonderfully... clean colonoscopy 6 months into my infusions. I started developing severe joint pain in my hands, wrists, and feet. I had been sick with a sore throat around the same time, so at first I thought it was viral. My family doctor ordered some labs and all my inflammatory markers were elevated (rheumatoid factor, CRP, SED rate, positive ANA). My Crohn's was not active, so the inflammation markers were puzzling. My GI doctor had me meet with a rheumatologist so she could help pinpoint it. She ruled out drug-induced lupus and some other things. Turns out, I had developed antibodies to the Remicade. I had high levels of antibodies, and ZERO Remicade in my blood. Meaning, the antibodies were attacking the Remicade. I was put on Prednisone to help with the pain and I was taken off Remicade and I am switching to Humira next week. I don't mean to scare anyone, but PLEASE have your GI monitor your joint pain as it could be a sign of antibodies. I can never go back on Remicade due to the antibodies. If I did, I could have a severe reaction to it. Good luck and I hope this is not the case for you! Just wanted to create awareness.
 
Hey guys
So I was sent the the hospital today for an appointment with a hemotologist and hopefully I'll be able to start getting iron treatments. Feeling lucky that I go to a private infusion clinic for my remicade because getting a infusion in the hospital seems to be a whole new thing... I've been here for two hours and am still waiting for my appointment. Does anyone have experience with iron infusions and the side affects? Really hoping my hair won't start falling out again like it did when I was on pred. Any feedback would be greatly appreciated!
 
I've had two iron infusions before. I didn't have any side-effects -- if anything I felt better almost immediately since I was so deficient in it at the time, and it should actually help your hair stop falling out! :) Good luck!
 
momofthree said:
I'm new to the club, my third loading dose is next week..yay! I was wondering if anyone else has joint pain now that they're on Remicade? I've noticed almost immediatly after my first infusion that my knees and finger joints are very achy. Anyone else?

Thanks for the responses!
Click to expand...

I've been having joint pain and I've complained to my GI doctor about it multiple times, but he insists it's from Prednisone I'm on.
 
Alley2231, so what's he doing about it? The Remi also causes joint pain, and you have a GI like mine that seems to put his head in the sand anytime I talk about pain anywhere but my tummy. I hope you feel better soon. I really do.
 
Has anyone had their blood levels go crazy after remicade? My levels have always been fine but now my red blood ct is low. .my mch is high. My white blood ct was border line low and my mchv was borderline high. I am also on imuran and pentasa.
 
As far as joint pain..I have always had bad body aches everywhere. My gi insist it's from the crohns. That remicade would help..but my body aches have not improved. I have been on Remicade since nov 2013.
 
JudithC said:
Alley2231, so what's he doing about it? The Remi also causes joint pain, and you have a GI like mine that seems to put his head in the sand anytime I talk about pain anywhere but my tummy. I hope you feel better soon. I really do.
Click to expand...

He feels that when I get off the steroids it will go away....but the day after my Remicade infusion I have bad joint and muscle pain, so I don't think it's just the steroids. The joint & muscle pain comes and goes though, it's not a constant, everyday thing.
 
MMo: I've had iron transfusions and the only bad part was the time it took. Like 9 hours! No side effects at all. They run it slow in case of allergic reaction risk. I didn't feel better immediately but did within a week or so.

I'm reading the posts about building up a resistance to remi and getting concerned. I've had 4 infusions. GI is upping the dose next time. I developed a new abscess after the last infusion and recently finished a month of flagyl and Cipro. Cipro caused severe muscle aches and tendon issues. Developed cyst on tendon in my hand and could barely walk due to knee pain. Nice huh...remi was helping joint pain. Now I think it's completely out of my immune system because joint pains are back. But abscess seems gone, for now. Still have fistula though. Never a dull moment!
 
Maxwelljax said:
MMo: I've had iron transfusions and the only bad part was the time it took. Like 9 hours! No side effects at all. They run it slow in case of allergic reaction risk. I didn't feel better immediately but did within a week or so.



I'm reading the posts about building up a resistance to remi and getting concerned. I've had 4 infusions. GI is upping the dose next time. I developed a new abscess after the last infusion and recently finished a month of flagyl and Cipro. Cipro caused severe muscle aches and tendon issues. Developed cyst on tendon in my hand and could barely walk due to knee pain. Nice huh...remi was helping joint pain. Now I think it's completely out of my immune system because joint pains are back. But abscess seems gone, for now. Still have fistula though. Never a dull moment!
Click to expand...


I've had my GI tell me that Remicade only really stays in your body for five days, though I'm not 100% sure about that. I definitely noticed it the second it left my body though, so I would believe it.

I developed a fistula within a month or so of being on Remicade and my GI said he had at least two/three other patients who had the same thing happen to them.

I'm sorry to hear about your fistula! I really hope it heals.
 
Thanks for the support. I've had the fistula for almost 2 years now. Started as an abscess. Had a seton for 6 months and then surgery that didn't work. Remi is sort if my last ditch effort to close it. Don't know what's left after that.
 
Surgeries to close fistulas artificially rarely ever work because of the nature of them, unfortunately. I don't believe in them at all myself. Biologics are really your best bet, and sometimes adding immunosuppressants to the mix helps, too. Humira has closed mine, and I'm very lucky for that.
 
Hey there...so when I am not pre-medicated, my bones and joints hurt right away, and the pains stay for three days. The pain is a 9. I have never experienced anything like it. If I am pre-medicated, then I just get occasional aches and pains, in random places, knuckles, knees, joints. Thought it was more from ostopenia.

I have had two iron infusions, and to be honest with you, they were very, very painful experiences. I had extremely slow infusions, but the pain was crazy. A lovely nurse came and put heating packs on the infusion site, and wow, what a difference.

I have severe side effects to pretty much anything

Cheers!
 
My girlfriend is on Remicade,every 8 weeks she just had an infusion May 15th,and is already having a flare up with vomiting and diarrheah. My question is this do you think the Remicade is not right for her, what is this humira some of you speak of. Of course we will speak with her G.I. Dr because I will be taking to the hospital today, she is dehydrated and not eating well.
 
Beany, I'm so sorry your girlfriend is feeling so bad. My Remi infusions were increased in dosage to 600, and now I get them every 5 weeks. So far, so good. My tummy is not perfect but much much better than it used to be. Speak with her GI about options with the Remi or other meds. Meanwhile taking her to hospital is a good thing. Good luck.
 
My daughter has an appointment today to disuss where we go from here... Her last scan showed almost complete blockage so the azathioprine and other mess are not working. When the doc called he said we would be probably starting remicade. No problem,,, whatever works. Here is my dilema. We are supposed to be leaving for Costa Rica in 2 weeks. He stated that we could possibly do a bout of Remicade in the hospital instead of outpatient or a hospital stay with drip antibiotics to see if whe can get the inflamation down so that she can go on this trip with her Girl Scout troop. Has anyone ever done this type of agressive approach or do you have any suggestions? Right now she is on straight liquids.
 
Alley2231 said:
I've been having joint pain and I've complained to my GI doctor about it multiple times, but he insists it's from Prednisone I'm on.
Click to expand...

Hi Carrie
I've been on prednisone a couple of times now and I did have muscle soreness but never in my joints. Now being on Imuran and Remicade, I have a hard time gripping things because the joints are sore and stiff feeling. It's weird! I see my GI in July, I'll ask him about it. Hope your feeling better!
 
I had my 10th infusion yesterday! I have noticed that when I come home after my infusion I usually have some diarrhoea. Has anyone else noticed this? I am very well on the infliximab so know its a change rather than normal.
 
Question for those talking about fistulas: How do you know when you have one, and when it's getting better? Do you keep getting colonoscopies or is there some other way to tell?
 
I went to a colorectal surgeon who was able to visualize my peri-anal one, the recto-vaginal fistula showed itself by drainage....both were confirmed via barium x-ray.

I knew mine were improviong when I no longer had air/feces expelling from them.
 
Maegans mom said:
My daughter has an appointment today to disuss where we go from here... Her last scan showed almost complete blockage so the azathioprine and other mess are not working. When the doc called he said we would be probably starting remicade. No problem,,, whatever works. Here is my dilema. We are supposed to be leaving for Costa Rica in 2 weeks. He stated that we could possibly do a bout of Remicade in the hospital instead of outpatient or a hospital stay with drip antibiotics to see if whe can get the inflamation down so that she can go on this trip with her Girl Scout troop. Has anyone ever done this type of agressive approach or do you have any suggestions? Right now she is on straight liquids.
Click to expand...

Hey Maegans mom,
So sorry to hear about your daughter going through this. As I am sure you are finding out, we all react differently to everything, with this disease. If your daughter is on liquids, which is bowel rest, I would try the approach your doctor suggested. I went into remission 3 days after my first infusion. I would recommend a good probiotic to counter the antibiotics. What other medication and or supplements is she on?

Has she been tested for C-Diff?

Please let us know how she does, and if she goes on her trip. I loved Girls Scouts!
 
I have not started yet, but dr wants me on it asap! Ive had Crohns for over 15years and it has always meed mild until this last year and now it is severe. I am sure it has alot to do with all the stress ive had lately. I am super nervous but ready to feel better!! It has been a long road being a single mother of a beautiful daughter who is my life! She will be 4 next month. Love her!
 
cvassar01 said:
I have not started yet, but dr wants me on it asap! Ive had Crohns for over 15years and it has always meed mild until this last year and now it is severe. I am sure it has alot to do with all the stress ive had lately. I am super nervous but ready to feel better!! It has been a long road being a single mother of a beautiful daughter who is my life! She will be 4 next month. Love her!
Click to expand...


There are side affects that you have to push through for a bit, but it is worth it. My dad has been on it for 15+ years (went off for a while to try Humira when it came out and he ended up with another resection) and it doesn't even phase him anymore. I have been on it for two years, and I still get a stuff head and a headache in the evenings, but I am looking forward to being where he is at.
 
Hello!
I have been on Remicade since October. The insurance we had was pretty spectacular since I only had to pay my $30 co-pay for my infusion appointments. My husband's company changed hands and we started a new insurance. I've had one infusion and just got my first bill. $325. That's a big difference to be paying every other month from $30.
I'm wondering if anyone here has signed up for the remi-start program. Wondering if I need to qualify and if I will even though most of it was covered (the whole bill is usually around $7,000) and if its easy enough to get started.
Any info would help really. Thanks!
 
I have the Remistart start program. I don't think it's based on income or anything like that, at least no one ask for any info. I believe it was based on our high insurance deductible. It's $5000.00 and our copay is 10%. There is a limit to the amount they pay annually. I still have a copay of about 75.00 but my deductible was covered which was a big relief. All I had to do was sign a form that was completed by the infusion center and they basically handled the rest.
 
I thought they did ask income..but it was set pretty high...I think a.family of 3 income couldn't be no more then 65,000. (I think). U can look up remistart online for info. I had each infusion covered..All I paid was $135 ..ins gets paid..but that goes towards your ded. So after 3 times my ded. Was meet and the ins had to pick up my 4th infusion by 100% and didn't need remistart ..All least not til next year.
 
We used Remistart and when that expired we moved on to the Extended program. It pays all but $50 of the cost of the Remicade. It only pays for the Remicade, not any other charges that are incurred. But it has been great. Instead of us owing $600-$700 after insurance, now we usually end up paying about $100.

I don't believe income was a factor. We filled out our part of the form, and our GI's nurse filled out the rest and sent it in.

Best of luck to you!
 
So I called Remistart today. Before my first infusion, my doctor had me fill out the enrollment forms and shortly after I received the credit card ready to be activated. I just tucked it away in a safe place. I asked today what I needed to do to get started. She said the EOB along with an itemized receipt was submitted perfectly and the card was already loaded with 216 dollars! She said keep doing what you're doing. I said that was all my doctor's office! So I sent the payment in the mail today and all I owe is $76. I could not be more happy. I need to make a big batch of cookies for the staff as a thank you. I was dreading what I would have to go through. Thanks so much for all your experiences!

Habbymomma, how long does this program last until it expires and is it as easy to get into the extended program?

Thanks again!
 
Hello everyone,

About a year ago I was on the RemiStart program and it paid for everything except for a first time fee of $50 and that was it! Basically, you just fax over your EOB to them as soon as you get it and they load up your card straight away.

Right now I am on the extended RemiStart program and I am responding to the person who asked about the extended program - it will kick in as soon as you have exhausted either 1 year or $8000 I believe.

I'm lucky this year that I don't have to be on the extended program because my company now has amazing insurance that covers everything.

The Remistart program is a godsend and really eased my anxieties about cost of the Remicade.

Best of luck to all of you,
Jules

Diagnosed with Crohn's disease in 1993, been on years of Prednisone and Sulfasalazine, then Asacol, then Humira in 2007 (worked for 2 years) then Cimzia (1 year and made the Crohn's active again) and now on Remicade and 6-MP since February 2011.

Diagnosed with clinical depression in 1997, generalized anxiety in 2009 and ADD in 2012.
Also diagnosed with Fibromyalgia in 2010. Osteoarthritis in 2012 (but not related to Crohn's)
 
Knees hurting !!

Is anybody having knee & joint pain while taking remicade ? I'm also have these bumps coming up in my hair
 
Last edited:
My remi start stop after 3 treatments. Then it won't start again till again till Oct. Couldn't extended. My co-pay was any where from 3800 to 1200! Way to much on MTX now cheaper no side effects yet. Blood test have been good during first month. Applied for bone marrow transplant they said I would be a good patients for it but mostly likely insurance would deny it. Figures
 

Similar threads

B
My healing story: towards full recovery from UC
Replies
2
Views
2K
kisseefitzrandolph
K
awoenker12
Starting Remicade
Replies
10
Views
3K
Jelly loves Peanut butter
J
M
SIBO & Infection Experience (Crohn-like symptoms)
Replies
1
Views
13K
chrohnotrigger
C
T
Remicade/Inflectra issue
Replies
1
Views
3K
Scipio
Scipio
awoenker12
Don't know what to do
Replies
43
Views
5K
NuttyGuts
NuttyGuts

Latest posts

Back
Top