Remicade Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

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.
 
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.

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.
 
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.

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!
 
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!


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
 
All:
I am not taking Remicade at this time, but I keep hearing about Humira and Remicade and I don't know anything about them. Can anyone tell me how Remicade works and what is the possibility of my health insurance plan covering the cost of the treatment ? I was diagnosed with Ulcerative Colitis in 2006, but have been having problems since 1997. I was first on Asacol and now have been taking Lialda for quite a while. Thanks for any answers you can give me about Remicade. I am seeing a new Gastroenterologist on July 30th !
 
Dear pasobuff:

I had an anal fistulectomy operated on in 1992 and since then I have had two
rectal abscess surgeries. Are these common for people who are suffering
from Ulcerative Colitis? I really don't know much about my own disease and
I have been diagnosed since 2006 and I have been sick since 1997.
I am nervous about seeing my new Gastroenterologist this month, but maybe
he can offer me some more treatment options, because I really need
more help.
 
Along with the joint pain, I also have excessive sweating from my head. It truly just pours down my face. I am trying to do without Azathioprine for a little bit to see if that makes a difference for the sweating. It's very embarrassing . Those are the only two prescription meds I'm on right now. The joint pain gets worse when I'm due for an infusion.
 
Oh my dear girl..may God bless you. You're about the same age as my youngest daughter. I pray none of my 4 children or 14 Grandkids inherit this dreadful disease from me .
I too have been playing the Remi every 8 week game..since Jan. 2013 Wondering if it's still working at this point. Due tomorrow ...both eyes are blood red today..every part of my entire body hurts. I don't even want to move . I probably need Remi closer together..but can't afford it . Retired and on Medicare . I have had your prednisone moonface many times...hang tough it goes away . Honest ! I am so trying to not go back on pred. Tapers are theeee worst nightmare for me !
Oh and please get yourself some pain management..don't suffer like that . I at least have Vicodin which helps me through..it takes the edge off (until it wears off) .Thank god for my GP who is very caring .
 
Last edited:
Oh my dear girl..may God bless you. You're about the same age as my youngest daughter. I pray none of my 4 children or 14 Grandkids inherit this dreadful disease from me .
I too have been playing the Remi every 8 week game..since Jan. 2013 Wondering if it's still working at this point. Due tomorrow ...both eyes are blood red today..every part of my entire body hurts. I don't even want to move . I probably need Remi closer together..but can't afford it . Retired and on Medicare . I have had your prednisone moonface many times...hang tough it goes away . Honest ! I am so trying to not go back on pred. Tapers are theeee worst nightmare for me !
Oh and please get yourself some pain management..don't suffer like that . I at least have Vicodin which helps me through..it takes the edge off (until it wears off) .Thank god for my GP who is very caring .

It sounds like you probably do need prednisone if you're in that much pain... I know it's an awful medication, but it would probably help you a lot to be on. :(

If you have trouble affording Remicade at higher frequencies, maybe you could ask your doctor about another biologic and if that might be better/more affordable? If you feel like it's not working you could also ask for an antibody test.

I'm sorry to hear that you're suffering so much... I hope that you feel better soon.
 
Dear pasobuff:

I had an anal fistulectomy operated on in 1992 and since then I have had two
rectal abscess surgeries. Are these common for people who are suffering
from Ulcerative Colitis? I really don't know much about my own disease and
I have been diagnosed since 2006 and I have been sick since 1997.
I am nervous about seeing my new Gastroenterologist this month, but maybe
he can offer me some more treatment options, because I really need
more help.

If you have a fistula, usually your diagnosis is changed to Crohn's instead unless they were caused by something else. Once you're able to see your new GI, they can probably confirm this for you. Fistulas you really need to be on biologics (like Remicade and Humira and others) for, and otherwise Imuran/6mp helps them, too. I'm on combination therapy for my fistula, and am on both Humira and 6mp.
 
Seeing surgeon tomorrow to have seton placed. Not happy but don't think I can keep putting it off. Spent the last few days in the hospital with partial obstruction caused most likely by combo of abscess/fistula, adhesions, and iron. So... It's back to the soft low fiber diet and no more iron by mouth. Will have to have another iron transfusion. Really worried about the adhesion issue. 3 weeks til my next Remi infusion. Feeling like Crohn's is ruling my life. Could be worse though... At least did not need surgery for obstruction.
 
If you're able to, try using Proferrin for your iron supplements. They're the only ones I've ever taken that don't cause constipation, and they're great. Considering your situation it might be a good idea to get an iron transfusion in the meantime, but they're at least not so bad. And low-fibre diet sounds good to me -- if you're in flare it's best to be on that diet.

I hope you're feeling better soon. I'm sure that once you get past this you'll be feeling more in control again. Are you going to talk to your GI about your treatment plan? Maybe something in addition to the Remicade?
 
Already on Entocort and that had been doing a good job at controlling most of the abdominal issues. Started on Remi in January but didn't seem to be doing much until they upped the dose last time. Had 10 really good days. Fistula seemed smaller and abscess was gone. Then after 10 days it was all back and bigger than ever. This latest really caught be off guard as it did my GI too. I see him again after my next infusion and yes I think a new plan may be in order.
 
I was on Remicade for a bit, but was allergic and had to switch -- I found it only helped my fistula for maybe five days, then went back to normal pain and drainage levels. I'm on Humira now, which helped tremendously and stopped the drainage within a month.

Entocort and Prednisone are just meant to be temporary treatments, unfortunately... which was why I was wondering about maybe adding something else to your maintenance medications. You could also look into combination therapy, where you would be on Remicade and an immunosuppressant (Imuran/6mp) at the same time. That's what I've done, and it's kept me in remission successfully without any problems. I hope you get things sorted out, and find something that works for you!
 
Was on 6mp for years but really didn't seem to do much. I've also tried most of the other meds with little or no effect. GI had me start Remi because of the better success rate than Humira. I think it will help to have the seton placed again even though I hate the thought. Had one for about 6 months last year prior to plugging, which didn't work. GI did mention a new drug that's been approved recently but hadn't looked at the literature related to fistulas. Will have to day it one day at a time. In the mean time I feel like I was beaten in the gut with a baseball bat. Assuming that will go away...soon I hope.
 
Ocean...I was put back on Prednisone now by my GI team.20 for a week then we'll see. Already see a "Bit" of improvement with body pain,eyes less red. Yesterday was my remi..no big gut improvements yet of course. I'm also on Azathioprine ...so lots of immune killers on board .
I probably should have an antibody test. My question is why should I have to suggest it..why doesn't the Dr. ? I'm always wondering how much money they make with these biologic things ...Hmmmmm Of course my insurance probably would balk at paying for such an overly extravagant test !! Ughhhh
Oh and the other Biologics would not be much better as far as affordability...as nobody will give you help when you're on Medicare...except Healthwell foundation. They give you a 2500 grant for the year which I exhausted now already . Remi is considered a medical treatment..Humira a prescription drug. Specialty tier 4. I would reach my donut hole with the first package of Humira. Hard to understand believe me. ..it's like you need a Masters degree to understand all the gobledegook. Thank you so much for your reply ! I'm so glad I found this place .
 
My CD diagnosis was changed to severe perianal crohns,so...I've had a resection as well.Does the most active/serious CD get top billing? SBFT showed resection site doing well and upper GI too.Stricturing and penetrating CD? I had three setons placed two weeks ago.

Start Remicade in four days.I applied to Remistart,haven't heard yet.I'll make sure I bring a book.
 
I take remicade every 7 weeks and have been on it 18 months with 6MP. I have taken 6MP a lot longer . I have tried humira it gave me drug induced lupus . I also have taken cimzia which caused me to get lichen planus on my leg and foot ! I have taken other meds for knee pain that has helped some to cause something else. I have a rheumatologist that has decided to take the opinion of my orthopaedic Dr who said I needed a knee replacement on the left knee and only done an X-ray . I refused Ortho Dr. He put an injected in my knee of cortisone and that didn't help me at all ! I had my infusion June 30 seen Ortho for a return visit for my wrist joint that he had injected on July 2. My knees was hurting so bad I could hardly walk, the bad pain lasted almost 3 1/2 weeks. I'm still hurting but it's not as bad . I think I'm having a reaction to the remicade ! If you need a knee replacement it wouldn't get better I would think . It does gets better then it's time for another infusion . I do have more than just knee and joint pain, I also have swelling in my ankles & feet, lump feeling in my throat, bumps in my hair, and I'm sure I'm forgetting some . I started Monday talking to Rheum Dr's nurse to get a message Thursday he agreed with Ortho Dr.! I Called my GI Dr Friday & he's on vacation nurse said he would return my call Monday. I called my rheumatologist because GI Dr consults with him on meds . It took me reading this forum and looking up medicine side effects for me to come to my conclusion . Hope this is not so jumbled up that you don't understand and it makes me just feel better to tell someone how you feel. Thanks You
 
Don't ever jump into surgery because of joint pain when you have Crohns . This tricky disease can manifest itself in so many ways . Just when you think your knees/ankles/wrists/ anything under the sun will not ever get better..lo and behold they do . I have had huge swollen knees that had to be drained..every joint pain imaginable...uvietis..iritis... episcleritis...an illieus...arthritis ...tendonitis in every imaginable place...oh and huge sores on my legs I thought would never go away let alone not scar but somehow after varying periods of time things do get better. Of course then this foe is always lurking . Flaring now even on Remicade...Aza....and just started a round of pred again. Now my hair is falling out like always when my body gets upset with me. Always just one day at a time ...I will not give in to this disease . Not today anyhow !
 
I'm curious to hear from those whose remicade wears off too early before your next infusion. How fast do you improve on your subsequent infusions?
 
Good Morning, my Remi wears off about a week before my next infusion. Considering that I'm getting them every 5 weeks, I won't complain to my GI unless I get SUPER uncomfortable. right now it's discomfort and D, and I have to be very careful what I eat. I do get sharp intermittent pains but it's not constant.
 
dear gram: I am just learning more about my disease after being officially diagnosed in 2006, but suffering since 1997. I have Ulcerative Colitis. Do Crohn's and Ulcerative Colitis really affect your joints ? I had not heard of that. The reason that I am asking is because I started to get severe constipation starting this May ( after having diarrhea for 17 years ). Then other things started to happen to my body. I already have arthritis in my neck, but now I have hardly been able to move my neck for two months and it really hurts too. And, I already have joint pain in my left shoulder, but now it is very, very painful ( and my other shoulder, undiagnosed at this time, really hurts ). And, last but not least, I already suffer from arthritis in my hips and recently my hips have really been hurting, especially my left hip. Really, something started to happen to my body during the beginning of May and bad things just keep happening ! I am in great physical pain right now and it is ruining my life. I am having a colonoscopy by a new doctor on August 21st. I am seeing a Rheumatologist about my neck on August 6. I am seeing an Orthopedic doctor on August 14 for my joint disease in my left shoulder. I do not yet have a referral or appointment with a hip doctor. The last three months have been very difficult for me, because I don't understand what is going on. I cry more. I truly need something for the pain. I already have mental health issues, and now I have this physical pain. I don't want to suffer like this. I am tired.
 
Ann I must say you are in a bad place right now. It sounds like you need to get on prednisone when I have all those things flare up ..and they do ....that is my go to. My GI knows that's what it takes. I was all flared up just 2 weeks ago and the prednisone helps almost immediately. I'm still old and have pains but there is a difference between pain and agony. I will worry about the side effects later...I do not like pain. Also Vicodin is a lifesaver for me too. I think I need my Remicade bumped up closer but just can't afford it.
I take an antidepressant too also a drug for restless legs that helps me rest at night.
If you don't get decent sleep it makes everything worse . Please hang in there and know that all of this will turn around again...I will be following you and please look into getting on a course of prednisone and a pain drug. God Bless.
 
Anyone here on remicade and having severe joint pain? Been on remicade since January of this year, started having joint pain within the last 2 weeks my last anser test from Prometheus was good, showed normal levels of remicade, however, that was in March. I am going to a rheumatologist in a couple weeks, in the mean time, I hurt so bad and dont know what to do.
 
Yes, I have joint pain, which my Doctors seem to ignore. I'm taking a big chance, and have switched from Tylenol (no help at all) to ibuprofen. At least the ibuprofen has helped a bit and makes it tolerable. Good luck at the Rheumatologist, I do hope he can help you.
 
Hi BHoffman,
I just had my first Remicade infusion this last Thursday and I would for sure say I have more noticeable joint pain. Also, I feel like I got kicked in the lower back pretty hard. I called my infusion nurse, she said this is a common side effect :/ Tylenol 650 mg extended release for Arthritis use (you can get the Equate brand from Walmart for about $14 for two big bottles) seems to help me a lot with this joint pain/back pain. Taking bath helps me too.

Hope you get to feeling better *prayers and hugs*
 
I went to the Rheumatologist about my neck. I cannot move my neck and I have neck pain. All I got were a few injections in the left side of my neck and I am starting physical therapy on August 11th. I also had x-rays taken of my entire spine. I don't know why I did not get any pain medication. I had a very detailed examination by the PA there and she really listened to what I had to say about all of my recent health issues. I don't know if I have to be more assertive when I go to all of these doctors or what. What level of pain do I have to be in in order for someone to order me some pain medication. My sister has RA but I am not sure what meds she is being given.

I go to the physical therapy place on August 11th for my evaluation. I cannot move my neck more than about one inch up and down or side to side. I think the physical therapy people are going to have a challenge on their hands. If I had pain medication WHILE also having the physical therapy, I would be happier.
 
Joshuaaa, I stopped the Remi for 1 1/2 months because of surgery on my foot. Tummy wasn't happy, but foot healed well. No problems getting back on it for me.
 
I am new here. I thought Remicade was supposed to be an anti-inflammatory. How can it cause joint pain ? My sister has RA but I think she is just taking methotrexate. I already have joint pain in both of my shoulders. I am having a colonoscopy with a new GI doctor on August 21st. I am seeing the Orthopedic shoulder doctor on August 14th. I just saw a Rheumatologist last week. There MUST be something that one or all of these doctors can give me for arthritis/joint pain and also for the Ulcerative Colitis I have. I had diarrhea for 17 years and now have had terrible constipation for over three months. I also have hip pain due to arthritis ! One of these doctors better help me. I am sick and tired of being sick and tired. I could probably handle one illness at a time, but when I am having so many symptoms at the same time I cannot handle it. I don't want to wait any longer for relief. Is Humira any better than Remicade ? How many insurance companies will cover these infusion drugs ? I have a new insurance company thing year. Thanks for listening.
 
I have been on Remicade every 7 weeks for about 3 years. I hadn't noticed joint pain or anything. I am usually up til about 4 am the night after the infusion which I attribute to the prednisone they use before the remicade. I am, however, pretty exhausted all the time. Don't know if that's the depression of the medicine or what.Has anyone had problems with their eyes being red? I walk around looking like I am having a WAY better time than I am because I look stoned.
 
Mixiestar, so glad you mentioned the eyes. I am due for my Remi infusion, and my eyes feel like I haven't slept in a few days, they are dry and sore. I've noticed this happening before. Will have to lie down with cold cloth over my eyes before I go out. Just tired tired tired too.
 
I had my second Remicade infusion today.When I get home I take the gauze off they put on the IV site.When I took the gauze off the vein in front and behind the IV site was swollen significantly and sore.The vein was swollen for an inch or two either side.It looked like the vein of some roided out body builder.

I called the hospital and talked to a nurse.She asked if it was still bleeding,it wasn't.She said to put warm wet compresses on it every twenty minutes and it will be o.k.. I've had lots of IV's and blood work and never had this happen.It's four hours later and sore and still swollen,not as much,but still swollen.

They start me with saline,hydrocortisone and then remicade.

Just curious if this a reaction to the remicade.The IV needle did hurt more than usual this time when being placed.I'm going with the vein being 'bruised' to explain the reaction.What do you guys think?
 
After receiving my first dose of Remicade 2 weeks ago I had 4 days of very loose stool and abdominal cramping. This obviously left me weak, worn out. After the 4th day cramping and stool stopped and I starting feeling better than I have in years. I received my second dose yesterday and started with the cramping and loose stool this am. More weakness and dizziness this time too. Has anyone had similar experience with their infusions? Thank you for your input
 
After receiving my first dose of Remicade 2 weeks ago I had 4 days of very loose stool and abdominal cramping. This obviously left me weak, worn out. After the 4th day cramping and stool stopped and I starting feeling better than I have in years. I received my second dose yesterday and started with the cramping and loose stool this am. More weakness and dizziness this time too. Has anyone had similar experience with their infusions? Thank you for your input

When I was on remicade I felt quite bad for a few days after but then started feeling good, give it a few more days you should feel better, if not let your doc know
 
Have you guys ever experienced weight gain while on Remicade? I run about 20 miles a week but keep gaining weight. I am happy to feel better but I'm frustrated I have to keep buying new clothes! Any suggestions?
 
Weight gain yes. Usually I can't get enough to eat after infusion and that goes on for several days. Cravings too, mainly sweets. After about a week I have managed to reel it in and I can get off what I have gained. But overall I have gained and kept about 10 lbs since I started in January. Don't need or want it either.
 
Oh yes...I gained 20 pounds when I first started Remi. Nothing changed as far as my diet and exercise either ? Now after a year it seems to coming back off. I'm not a thin person to begin with but 20 pounds really had me in a panic ! The Remi nurse ,GI dr. ,and GP dr.all denied it would be from the Remi...Hmmmmm Thing is we're all different . No one believed I wasn't pigging out or something I guess !!!
 
Do they always give you Prednisone the Remicade treatment? I couldn't sleep either and I had to go to work the next day.
 
I don't get prednisone but I do get solumedrol IV before the remi. Also a steroid but does not have the side effects of prednisone. Made a huge difference in how I tolerated remi. First treatment without was awful. Only side effect I got this time was the usual headache and that really hasn't been bad.
 
I am not sure which steroid it is. I thought it was Prednisone. It was through an IV. I guess I better find out. I was still Prednisone and when they gave me the steriod the first time I was really wired. This time I did not take my dosage and although I was still wired it wasn't as bad. Do you know the reason for the steroid?
 
Steroids help with the side effects. I think prednisone is just in pill form. Don't know if it's IV. Maybe it was just too much. I don't seem to have a problem with solumedrol but prednisone makes me crazy hyper, shakes, and the last time I took it I developed a heart murmur. It's nasty stuff. Luckily the murmur healed on its own after I tapered off the prednisone. I would definitely tell your dr about the reaction. Maybe he can adjust the dose.
 
Hey, i've been on remicade for about a year and a half. Definitely have gained weight since, but basically going back to my weight before getting diagnosed,which i take it to be a good sign that my body is finally absorbing all the nutrients. I only get joint pains in my hands when i'm feeling off, which is rarer and rarer these days, but when it does happen, it's usually in the week before my treatment.
 
Hey, i've been on remicade for about a year and a half. Definitely have gained weight since, but basically going back to my weight before getting diagnosed,which i take it to be a good sign that my body is finally absorbing all the nutrients. I only get joint pains in my hands when i'm feeling off, which is rarer and rarer these days, but when it does happen, it's usually in the week before my treatment.

Do you have them every eight weeks? I haven't noticed a difference in my weight.If anything I lost a couple pounds.I had my second infusion two weeks ago.Not that it's my choice,but I would prefer to stay at the weight I am now.
 
@dave13 yup, every 8 weeks. i've stretched it out to 9 weeks a few times due to travels, which was a little rough, but 8 weeks seems to be ok... i would say that i've only noticed weight gain recently.... actually summer really gave it away, when i noticed that my summer clothes was a lot more snug in comparison to last summer. So at least after a little over a year of remicade did my weight begin to finally go up again. I personally don't mind the weight gain, so long as it stabilizes. It took years to even gain a steady 10 pounds back, so i'm happy.
 
Celebrated my 9th annual 29th birthday with my son. Even though it was my birthday, he still got the cozy chair.

63aff909-cdc0-48f5-a2a8-43b48deed39a_zpsad939d2b.jpg~original


His BP was awfully low. I didn't see in the paperwork where the nurse recorded his baseline, but I seem to remember it being around 117/90 ish when he was first cuffed (I wish I could read what it was in this picture as it was right when the nurse put in the Remicade line). After a bit, his readings were averaging between 90/44 to 90/58 ish. I called the nurse, and she said it didn't vary much from his other current readings.

I snooped around his paperwork and all his past Remicade readings were in the 110-117/70ish range, also.

I'm not too pleased by this. I read that a drop in the lower number is cause for concern. I didn't see any other issues going on at the same time though.

Does anybody have any wonderful insight for me about this?
 
Hello everyone. Looks like I might be joining the Remicade Club soon. My IBD team have said that my Azathioprine has reached therapeutic levels in my blood. But when I tapered off my steroids the inflammation came back and caused me to be hospitalised with an intestinal blockage.

I've actually been offered the choice of both infliximab or Humira by my IBD team, but my doctors when I was hospitalised talked about infliximab, so I am thinking that would probably be the best choice. Cannot say I'm really looking forward to it, in fact I was almost in tears on the way back from my appointment. I have been doing EEN alongside my steroids since coming out of hospital and was hoping that this might give more time for my Azathioprine to work, but doesn't seem to be the case. I have another appointment with my IBD team early September, so we're going to review again how I'm getting on and then make the decision I guess. :(
 
Sorry to hear you're not doing so well, don't sweat the remicade though, try not to worry of the list of possible side effects, there's a good shot it's gonna fix you right up :)
 
max: You are the first person on here to mention Solu-Medrol. I had optic neuritis in 2001 and I had to take solu-medrol iv, twice a day, for three days. Then I took prednisone for two weeks. A nurse actually came to my apartment to put the iv in my arm ( it stayed in for three days ) and he showed me how to use the iv bag myself and do the iv myself for three days. A healthcare supply company actually delivered a pole to put the iv bag on, sort of like the ones in the hospital. The solu-medrol and the prednisone helped significantly with my optic neuritis recovery.
 
The benefits of steroids often out weigh the risks. There are many people out there who can say these drugs have been helpful and even life saving. So often they are the only thing that helps an auto immune disorder.
 
max: Is it wrong for me to say that I care more about the quality of my life than the quantity ( longevity ) ? I say, give me the good drugs that will make me feel better NOW. Every drug has side effects. Sometimes I think that if I felt good for just 24 hours those would be the happiest 24 hours of my life. I want to wake up refreshed from a good nights sleep, I don't want pain ( physical and mental ) and I don't want to be tired all of the time.

Well, I am having a colonoscopy tomorrow and I must start my Prep in 17 minutes. Ahhhhhhh. The last time I had a colonoscopy was in 2009 and the Prep stuff made me nauseous for five hours. I think I had dry heaves too.
Fun, Fun.
 
ps: my sister has auto immune issues in addition to RA and MANY other things. She is ten years older than me. I am 54 years old. She just retired. We both want to feel good. She will surely have less stress now that she is not working. Stress makes symptoms worse. I hope she can relax and feel better now.
 
Hang in there Ann. I agree it would be so nice to feel good and pain free. We have to all hope and pray that all these treatments and tests we subject ourselves to will eventually lead to just that. My thoughts and players are with you.
 
The benefits of steroids often out weigh the risks. There are many people out there who can say these drugs have been helpful and even life saving. So often they are the only thing that helps an auto immune disorder.

My son's doctor really, really, really doesn't want him to be on prednisone any more as it's a crucial time for puberty. She doesn't (nor do I) want him to have delayed or missed puberty.
 
Hi Ann

I have had a knee replacement a year and a half ago. My hips, neck, and other knee is always in pain. It needs to be replaced also. I got real sick after my knee surgery. This is when I developed a stricture. I was put on Prednisone and all my pains went away. I know it is not a permanent fix but I sure enjoy it when I am on it. At least that part of it. I know when I am on Prednisone, I can walk with no problems. I am hoping the Remicade keep the pain away since I am tapering off the Prednisone.
 
I only hope that Remicade will keep any joint pain away for others . I for one have no luck with that. I am finishing a course of prednisone for the umpteenth time and believe me I would rather be staying on it than coming off it. The difference is so pronounced each step down the ladder I come. Hip..feet...just plain pain all over. Nothing out there helps the pain like good old prednisone. Then yet the price of that drug !! Why can't everything cost so little ? I know I must get off of it but it's so depressing to know I'll just be riddled with pain again. Another 4 weeks till my Remi. and belly issues already starting .
 
Cat1653 I was on Remicade back in 2005 to 2007 but stopped when I had a reaction to it and it also wasn't really doing the job either. I had break through bleeding all the time . After that I was just on Azathioprine ,and prednisone countless times .Then January 2012 had a very bad flare and was in the hospital for a month. High IV steroids..TPN..you name it .
My colon looked like a huge mess...also has moved to small intestine. and they also found I have a hiatal hernia. GI doc decided we should try Remi again so have been on it since then..no reaction but now it may be coming to the point where it's not helping as much. I can't afford the co-pays to have more frequent treatments. My insurance pays 80% . I've exhausted the grant I received from Healthwell foundation. No funding available for this year anymore from the few that would help Medicare recipients. Just taking pain killers for my miserable joints and feet....steroids..and staying close to bathrooms at this point. Fun life...but at least I'm retired. God bless those who still have to hold a job with this blasted disease !!
 
Gram214 Have you looked at the remistart rebate program ? It helps with cost it's not based on income. My insurance pays 80% after my $500. deductible .. I pay a $50. Copay plus 20% of costs they charge at infusion clinic . It cost me $100. Every 7 weeks . I'm still working and it's hard to some days ! Thanks for the blessings and I'm sending blessings for you to .
 
Arkansas Crohny ..yep been there done that. They won't help if you receive Medicare. Booooo on them. Very few programs will. Guess they think when you're older and on medicare you have more time to plant money trees ?
 
gram: I have been reading all of your posts here recently. I just wanted to tell you that I understand about the cost of things. When I was working 5 1/2 years ago I had great health insurance through my employer, the insurance company basically paid for everything. I was very spoiled for quite a number of years. I had to pay very little for any services I received. Then I got let go from my job due to "workforce reduction" in 2009. I kept the good insurance through Cobra for 18 months. After that 18 months I had no insurance for the year of 2012. That was very tough on me, especially the prescription medication part. For 1/2 of 2012 I had no income whatsoever, my sister was paying all of my bills because I was broke. She couldn't afford to give me money for ALL of my prescriptions, so I had to only keep taking the medications that were the bare necessities. At the time I was taking many psychiatric medications for my mental health. Guess which drugs I couldn't afford to take ? The psychiatric ones. ( One year later I ended up in the hospital because of this). Anyhow, in 2013 I started collecting SSD, so I had regular Medicare. Stupid me screwed up and I did not apply for prescription medication coverage that year ( 2013 ). I had no idea what I was doing. So, for 2012 and 2013 I had to pay cash price for all of my prescriptions ! Ahhhhhh. In 2014 I signed up for AARP Medicare Complete insured through United Healthcare HMO. I had no idea how to chose a health insurance plan, so I picked the AARP one. I did not know about "donut holes" or "coverage gaps" until February 2014. ( Sigh ). Right now I can afford the co-pays for my PCP and my Specialists and my Physical Therapy and my custom made orthotics. BUT the only reason I can afford those things NOW is because I received back-dated settlement pay when I won my SSD case. The back-dated settlement is something I knew NOTHING about when I was sitting before an SSD judge with my attorney. I did not know about the back-dated settlement until my attorney and I left the courtroom. He told me about the back-dated settlement and also that I qualified for Medicare right away. I sobbed all the way home during my cab ride, I couldn't believe it. I had been broke, with no insurance and my sister was paying my way previous to this. I just wanted to say that the only way that I can afford these co-pays and things NOW is because I am supplementing my monthly SSD income with the back-dated settlement pay that is in my Savings Account. Without the Savings Account money I would not have all of the money for these co-pays. And once THAT money is gone, I just have my little bit of monthly SSD deposited into my checking account and no more. Once my savings is gone it is gone. PS: I take Lialda and the cash price for that each month comes to $432.00. I got this prescription for free in 2012 because I was broke and I applied to Shire Cares for the free medication. I recently applied again, but was denied because of my small co-pay at the beginning of the year. But now that my coverage gap has been met, my monthly cost for the Lialda has gone from $45.00 to $197.00 ( 47% of the total cash price ). I have a new Gastroenterologist, so if he decides to have me continue on this medication I will apply again with Shire Cares and quoting them the price of $197.00 per month. I will have to pay $197.00 per month for six months of every year with this donut hole thing. The first half of the year I will have to only pay the $45.00 per month. Thanks for listening. Sorry this is so long. This is my story.
 
I am sorry you had to through this but it is ok to vent. This makes me realize I should start saving now because even though I am working, when I retire I am going to have to be prepared.
 
I went on Friday for a remicade infusion, My feet are really swollen the past two days. Has that happen to anyone else out there?? thank you Diana
 
Dear Cat: My sister just retired at 63 1/2 years old. She worked very, very hard at her job. She worked for a Title Company for over 30 years. She deserves to have a happy and healthy retirement. I guess she and my brother-in-law must have the funds to live on until they start collecting Social Security ? I think my brother-in-law got some inheritance money in 1999. I don't know the sum of the inheritance, but I don't think they will ever be hurting for money. My sister is getting Cobra insurance for the next 18 months and then I believe she will start collecting Social Security when she is 65 years old. She has a whole bunch of physical health issues too. She has RA, I guess that is the biggest one. She still manages to do everything in life that she wants to do, regardless of the RA. I believe she takes Methotrexate for that. At my last job I worked there for 24 years and I did not save a dime. No savings account. No 401K. Stupid on my part, but that is just the way it was. When I first started working at the bank, they matched dollar for dollar on their 401K ! I could have saved a lot during those first few years ! Later on they merged with another bank, and then later on they merged with another bank.....so the matching did not continue. Good luck on your saving. I would encourage everyone to save as soon as they get their first paycheck. Even if it is a small amount each week, it will add up and you will have a "nest egg" as they call it.
 
Yes my ankles & feet swell . I've been on remicade almost 2 years . Look up side effects of your meds most can cause swelling. I'm on 6mp and no prednisone . I took meds for my joint pain that caused my ankles & feet to swell really bad ! Dr didn't think that was what it was but when I quit taking it they went down a lot !
 
Just had my 10th infusion of infliximab (remicade to our us cousins :).
Been a life changer/enhancer of my crohns with strictures.
Good to be a member here.
Shalom john
 
Has anyone ever experienced severe anxiety and confusion the day after their Remicade infusion?
Not sure if the Remicade itself caused this for you, but consider that you may have also received other medication in your infusion. Ask your infusion nurse if they co-administered methylprednisolone. If so, that can also lead to this sort of reaction.
 
yes they usually give you a steroid before the infusin and this can really wire you and make you anxious. At least it does for me.
 
I just assumed that there was only Remicade in my IV.

When I was first diagnosed and put on Prednisone it never made me nervous or wired.



What I had was a combination of high anxiety and confusion so bad that I could not remember what day it was.
 

Latest posts

Back
Top