Remicade Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

sickinlk said:
Hey all ive had 2 infusions and i think i can finally say i am in remission. No bleeding, diarrhea, mucous, pain or urgency.
Poos are normal.
Woop woop.


But i have loads of other random issues since starting remicade and am thinking ill not be on it for long.
Joint pain, itching skin, spots, dandruff, every dose going around, headache and neck pain and yeast infections.
Boooooooooo!

Ju
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Ugh, I start in a few weeks and thought there were no side effects whatsoever. I seem to get the crappy of all side effects with every med I take. Feel better.
 
hi every one to be honest with you i do not take any medicines only GOD with me
im staying and waitting for some meracle
hope to be all fine
 
chattertess said:
@j.bug - Reading your post was like reading something I had written! Sounds identical to my situation, so lots of support your way. My parents are exactly the same about the doctor 'god complex' situation - they believe anything people OTHER than me say. For example, my mum was talking to a friend who's daughter had 'self-diagnosed' herself with crohns, and was saying a load of stuff about the condition that didn't actually make sense. Everyone is different to an extent, but sometimes I wish people would just listen to the individual.
Hugs.
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We know our bodies better than anyone else. Even the drs. We KNOW when somethign is wrong!!!
 
spinny chick,
be positive and you'll be fine. ive had all bad side effects aswel and everything i tried made no difference until remicade.

Bb praying you get some normals.

ju
 
Getting ready for my first Remicade infusion tomorrow at noon! I have to say, even with all of the very positive messages within the forum about the results of Remicade, I'm still quite nervous!

Hope you are feeling better J.Bug! And Spinnychick... hope you enjoy the wedding and honeymoon!
 
thisisme said:
Getting ready for my first Remicade infusion tomorrow at noon! I have to say, even with all of the very positive messages within the forum about the results of Remicade, I'm still quite nervous!

Hope you are feeling better J.Bug! And Spinnychick... hope you enjoy the wedding and honeymoon!
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I'm right behind you! I have an infusion Sunday morning...though not my first. The worst part is getting the IV in and the flushing (I always taste the saline). Then you pretty much fall asleep because of the Benedryl (and Tyelenol) they give you 30 minutes before. Ask for plenty of warm blankets (my nurse Kathy piles them on me because I always freeze) and relax. It will be fine and will provide much needed relief. I am extremely needle phobic (Humira is just not an option for me), so I also take 2 Xanax one hour before infusion appt. It also helps me to sleep during the drip.

I hope you have a good nurse like I do, and that they make you as comfortable as you can be. Try and relax, Remicade is a good thing!!

I'll be thinking of you and wishing you sweet dreams tomorrow! HUGZ!!

Nicole
 
My first infusion is tomorrow. I'm really nervous. But everyone on this thread has been really positive and informative so I'm thankful for that. Really helped in making the decision to go on Remicade.

Also.. anyone on Remicade also diagnosed with Celiac? I am diagnosed with both... Since Celiac and Crohn's are both autoimmune diseases I was wondering if anyone knew if Remicade helped with Celiac as well?
 
thisisme said:
Getting ready for my first Remicade infusion tomorrow at noon! I have to say, even with all of the very positive messages within the forum about the results of Remicade, I'm still quite nervous!

Hope you are feeling better J.Bug! And Spinnychick... hope you enjoy the wedding and honeymoon!
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'

My first infusion is tomorrow at 1pm! Go us. :)
 
Housemouse: I have sever ulcerative pancolitis and while Remicade hasn't put me into remission...it has made a huge difference!! I am thankful for what it has given back to me. I am currently flaring - so back on the Prednisone I go and my Remicade schedule has been changed from 6 to 4 weeks. I should start feeling much better (and stop bleeding) by Tues/Wed of next week (infusion is on Sunday). As much as I *hate* needles, I'm looking forward to the relief. Scary part is...husband will be hunting, so no one to hold my hand during the IV insertion. :cry:

Nicole
 
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Nicole, I can't imagine going to the appointment without someone there. I recently spent 5 days in the hospital and now have IV related PTSD, ha. My boyfriend is luckily skipping class to hang out with me during the treatment. I hope you start feeling better soon. *hug*
 
Good luck Housemouse! I guess we are both going to be trying it out for the first time tomorrow! My boyfriend couldnt get out of work, but you better bet I expect him to bring me and pick me up! lol. I've heard good things about the people and nurses at the clinic I will be going to... so hoping all goes well!

Thanks for the words Nicole! Im not liking needles either, but it feels like over the past month I get stuck every other day! (B12, bloodwork, etc)... plus I just found out I have to start iron infusions as well :(. Good tip on the warm blankets... Im always freezing! And Im really hoping the benadryl knocks me out for a bit! (Being on pred, I feel like I never get a good sleep!)
 
I'm reading thru all the posts, but I'm only on page 12 and I really need to ask questions now.. my 12 year old son has been started on Remicade and they want to add Imuran. I'm very nervous about this combo for him. Any stories from other men who started as young boys with this combo would be appreciated. I would like him to be on Remicade alone.. even though I don't like the thought of that one either. well, actually I'd like him to be well, but....


They're treating very aggressive but his main symptoms have been vomiting, failure to grow, anemia. so i'm not sure this aggressive is needed.

I have read stories of parents who lost their sons to lymphoma, chickenpox, etc on this drug. I'm very scared.
 
Sorry Mreyn, I don't have much info for you.. but I thought I would post to try and get your post looked at!

I just started Remicade on Thursday... and I can tell you the process went pretty smoothly. I of course understand your concerns for your son, so I hope someone here has some good info or words for you!
 
hi every one and hope to be fine
im waiting for Remicade since july .im sufering and waiting i need some one help me and send me this meds
hope for every one
 
Infusion number 5 in the morning. I am pretty sure I
am dehydrated, do you think this will affect me tomorrow?

Do you think they would just hyrdeate me there?

Has anyone have this type of problem before ??


Thank you


Lauren
 
Hey everyone! I have been on the Remicade for about 3 months now. It seemed to work great for me for the first two months, but now i feel like i am really going downhill and just back to where I started with lots of pain and nausea. :frown:

About a week ago the doctor started me on Hycoscyamine. That worked great the first couple days but again....more pain and nausea.

I have also noticed with the remicade I have been having lots of mood swings and depression. Anyone else having these problems?????

Currently Taking:
Remicade
Pentasa
Hycoscyamine
Vitamin D3
 
AmandaMB, sorry to hear you are having issues with the pain and nausea. You may ask your GI to do a fecal calprotectin test, its a stool test that detects inflammation in the GI tract. He can also run a remicade levels test on you to make sure you aren't burning through the remicade too quickly or an antibodies test to make sure you aren't building up antibodies to the remicade.

Have you had your vitamin levels tested recently as that can sometime cause symptoms of depression and such. I hope you find some answers soon.
 
I have had many vitamin tests done, everytime they check them they are usually very low along with my iron. The doctors kept trying to prescribe me with these but it would just get low again so i think they are to the point where they said hopefully when the crohn's gets under control then everything else will too.
I have a bad history of skin problems and chronic infections so they were worried to start me on the remicade to begin with but it seemed like the only option at the time so thats what we went with. My GI and Dermatologist are working together to figure everything out. I have some great doctors, I travel 2 hours everytime to go visit them which is usually every 2-3 weeks...sometimes even 2 or 3 times in a week.
Usually when I tell my GI I am having my symptoms again they run an upper GI with small bowel follow through. The crohn's seems to bother me most in my upper area. Im not bothered really at all by having to use the bathroom a lot.
 
tots said:
Infusion number 5 in the morning. I am pretty sure I
am dehydrated, do you think this will affect me tomorrow?

Do you think they would just hyrdeate me there?

Has anyone have this type of problem before ??


Thank you


Lauren
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I see youve had your infusion already. were you dehydrated? i have weekly fluids for dehydration. when i go for the remi and im dehydrated, they just have trouble finding a good vein to stick. hope all went well for you!!!
:hug:
 
Jbug

It did go well and I feel the best I have felt in al really long
time. Not ready to try anything fancy with my diet yet (a salad
Or oatmeal ) though.

Now that you said about the trouble getting your IV started
this was the first time she had a hard time and it hurt. And
Needles and poking around never bother me.


I hope I am on my way into remission!!


Lauren
 
welcome Arkansas Crohny.
ive just had my 3rd loading infusion and im in remission. 8wks till next one so ill see how ling i last.
great feeling not having to look in the toilet.
ju
 
Sickinlk , I'm so glad to hear that the remicade is working for you, it gives me hope for myself and yes it would be a blessing not to have to look in the toilet ! I have failed many treatments its good to know someone that is in remission!! Thank you for good news!!!
 
Ive a question for every1.

HAS ANY1 ELSE BEEN GIVEN STEROIDS DURING THEIR INFUSION?
the nurse was putting something into the canula and i asked her what it was and she said hydrocortisone 100mg!!!!!!!
i said no that i dont normally get it and she said "oh yes you've been getting this each time"
i took her word for it and afterwards felt out of it all day.
i really dont remember feeling like that the other times.
was she mistaken?
im seeing my GI on fri and im gonna ask him.
100mg!! the most ive been on is 40.

ju
 
any reason lauren?
did you have a reaction at one time. i thought it was normal to get piriton and paracetamol only.

ju
 
I get 100mg of the hyrocortisone prior to my infusion, along with Benadryl.
I was told that it assists with making sure that remicade is accepted without any reactions, as well as that it doesnt have the same types of side effects as taking prednisone regiments.. etc.

Not sure if that is accurate, but thats what I remember! lol
 
i had a word with my gp earlier and she said that hydro cortisone is 60% weaker than pred. (not so scary when you know the facts) so its equivalent to 40mg of pred.
ill still ask my Gi moro as it was the 1st i heard of it last Fri.

ju
 
Hi
I haven't posted in awhile. My son was considered mild (he's 12 and was dx when 10). His blood work is never alarming and so his dr got perplexed as to how I described his symptoms. He has bad diarrhea which will have him in the bathroom for 1-2 hrs at a time. He Rhys a lot of stomach pain when he goes and aft. H will go 10 or more times a day and is so wiped out after!
He missed so much school and sports as well. The dr now feels after colonoscopy last week that to 6mp ha taken for the past 6 mos isn't working since as he dropped th prednisone, my son became really symptomatic again. this time losing several lbs in a few weeks And looking so bad as someone else here described!
So, we now have to go to remicade. I'd like feedback on how to discuss w your child?
Also he has no one to speak with about any of this other than us!!
Sheryl
 
SZellis said:
Hi
I haven't posted in awhile. My son was considered mild (he's 12 and was dx when 10). His blood work is never alarming and so his dr got perplexed as to how I described his symptoms. He has bad diarrhea which will have him in the bathroom for 1-2 hrs at a time. He Rhys a lot of stomach pain when he goes and aft. H will go 10 or more times a day and is so wiped out after!
He missed so much school and sports as well. The dr now feels after colonoscopy last week that to 6mp ha taken for the past 6 mos isn't working since as he dropped th prednisone, my son became really symptomatic again. this time losing several lbs in a few weeks And looking so bad as someone else here described!
So, we now have to go to remicade. I'd like feedback on how to discuss w your child?
Also he has no one to speak with about any of this other than us!!
Sheryl
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I would go about it with honesty. All he needs is honest answers. Remicade is a serious drug, but is relatively safe. It is made by a protien found in the immunesystem found in mice. When introduced to our bodies, it bind to our tumor necrosis factor protien, and thus, stops it from attacking our system. The infusions are symple and non invasive. It takes about 2.5 to 3 hrs. They give you meds prior to aid in any adverse effects you may have. The nurses are great. The constanly watch vitals to make sure your body is responding well. Many drs in the uk are already using a step down technique, treating with the big guns first. It seems more effective than our atep up approach. He will be nervous, maybe even scares. And that's normal. I would share with him success stories from this forum. It made it easier for me anyhow. Also, deoending on how much he wants to know about what's going on, there's a lot of useful litterature on the net, about remicade and the process, and what it does for your system. Thay being said, I would stay away from the possible side effects.

At the end of the day though, this is his body, his disease. The truth is always best. And education is power. Good luck with it all. And welcome to the remicade club!!!
 
S Zellis, My son is 12 and was diagnosed in December. He also does not know anyone else that has it or have anyone to talk to about it. He loves to play video games, so if your son does also, maybe they can become game or facebook friends. I had found one other child thru their parent and they were going to friend him, but that never happened and he was very sad about it. We have just started Remicade and he will have his 3rd infusion on nov. 28. We're still new at all this and I think I have a harder time than the rest of the family, but this has been so hard on our entire family. I don't know what all I can offer ... but I would be happy to share our experience so far , etc... if you'd like to... message me. As far as being honest , I agree...to a point. Everyone is different and we know our child and his anxieties so we handled telling him a certain way.
 
Hi everyone!

I'm not on the Infliximab yet but I thought I'd drop in and see if anyone could give me some advice. My GI originally wanted me to go straight on Infliximab after my colonoscopy in May, but I refused, had some steroids and saw immense improvement. In July, they started me on Aza... and while I've got *less* stomach ache, I'm still losing weight/no appetite. I know next time we go my GI will push Infliximab again, and do you think it's a good idea? I mean, even if I'm not on it long-term (I've heard they reassess you after a year or so here in the UK?) I could still go on the Aza afterwards. Is it totally mental to think that even though the Aza might not be enough this time, it could be afterwards? I was able to go back on Pentasa after my surgery for two years before problems started again.

Oops, I'm kind of babbling now :( anyway I just wanted to know because if I can feel better and put weight on and be HUNGRY again I wouldn't mind the drive to London and having to take days off school! Thank you all for any advice you could give :ysmile:
 
I'm not sure I will be much help as we are all new to this. my son will have his 3rd infusion nov 28. He had gained almost 10 pounds in 3 weeks and said he felt happy, and like a normal kid again. Now, that being said... he was also on steroids for 3 weeks and had just been given 2 antibiotics and hydration in the hospital... so I'm not sure yet if it was the steroids because his appetite is slowing down. but we'll see...
 
I get Remicade, azathiprine, and also arimidex, for post cancer surgery. My bones are ACHING! I'm thinking it might be a combinations of everything, but all I'm getting from Drs. is kind of like, Oh, that's too bad. Has anyone tried gWhat else should I be doing?
 
@ JudithC ~ The only of the 3 aforementioned drugs that I take is Remicade. I wouldn't know if a combination of these could be your culprit, but I do know that IBD is often associated with other diseases such as arthritis. Arthritis is the reason that MY bones are achy.

I have noticed, however, that my bones ache a lot more as I am nearing my next infusion. Remicade helps with my psoriatic arthritis.

So if you are achy in a different kind of way, then I'm sorry that I can't be of any help. But here's a BIG HUG for you!!!! :hug:
 
My reaction was more body aches, headaches and throwing up

After my first treatment they started with the additional "pre meds" and
I no longer have any trouble. Now iftue Remicade would only work for me!!


Lauren
 
I am in the process of getting qualified to begin Remicade...jumping through the insurance hoops. I am really looking for some relief but concerned about the increased cancer risks and the extremely high out of pocket costs - at least for a NC state employee. Currently on Pentasa 4000 mg/day. thanks for sharing...
 
Don't forget to apply for the RemiStart program from the manufacturer. Your Dr.'s office should have the forms. After my insurances had paid my balance was $800 some odd every 6 weeks. The RemiStart program pays that off. Thank goodness.
 
@Judith C...so with the Remistart program, you had no out of pocket costs? wow!!! that is awesome. Health care is crazy with the costs right now... thanks, I will look into it if I get the qualification complete.
 
make sure you sign up and get approved for remistart before your first remicade appointment. they will not pay for any treatments received prior to getting the remistart card/approval. (at least, that's what happened to me)
 
Hello, I am a relatively new Crohn's patient (just diagnosed this year) and starting on Remicade IV treatments. I will have my first one in a couple of weeks and will be using this forum for tips, concerns, and guidance. Thanks for letting me join, hopefully I can find out about this RemiStart thing before I get this started, any cost that can be taken care of would be lovely!
 
Cathie is right, they will not pay retroactively. Apply asap. LonghornGirl, please read above info in the Remistart program. It will save you big money. My remicade is really working well with me, and I certainly hope it does for you ladies too.
 
Wanting to ask for a little advice...
Remicade has failed for me :( causing a lot more bad than good. My Dr, who isn't the most helpful Dr in the world, has said I probably need to try another treatment. The first of which, which I knew he would suggest, is Humira. Does anyone have any suggestions? I'm finding it so hard to make a decision, as I really really don't want to be on any drugs at all. However, I have too much going on in my life to not.

Hope you're all well.
 
JudithC said:
Cathie is right, they will not pay retroactively. Apply asap. LonghornGirl, please read above info in the Remistart program. It will save you big money. My remicade is really working well with me, and I certainly hope it does for you ladies too.
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Thank you, I just found the paperwork and sent it on to my Doc for signature and missing info. Hopefully it will help, I've already been thru the ringer this year financially with all this junk leading up to this treatment so any assistance I can get is much appreciated.

Thanks to all for the helpful tips already posted, I plan to be more active here as much as I can, and hopefully I can learn more about what to expect down the line.
 
Welcome LonghornGirl , I also signed up for remistart , as everyone knows how high treatments can be. I took my second infusion yesterday I done ok . I'm hoping to start seeing a difference in my crohns ! I take my third one December 3 !
 
Remicade- be very, very careful ! This drug is either a miracle drug for some or a curse for others. Do your own research before letting your doctor convince you to go on it. Once it's in your system the only way to get it out is Time. Remicade , Humira, etc. are all in the same catagory. Look at all the lawsuits against the manufacturer. It appears to be the last tool before the Gastroenterologist turns you over to a surgeon. I tried it for almost 2 years back in 2000 after it first came out, little info so I tried it with no affect (good or bad). Had surgery couple years later. This time I had an abdominal fistula, was desperate but stupid not doing my research. 2 infusions (5 mg) no improvement so 3rd infusion (7.5mg) big mistake, fistula got worse and draining more then before. Surgery in 2 weeks. Went back and did my research, like I should have done first, and determined Remicade has minimal if any affect on abdominal external fistula. Some small affect on Anal fistula. I confronted my GI with the data, he obviously didn't research either. The Remicade lawsuits are extensive, with a number of major law firms pursueing! But's its a great cash cow for Centecor (now Jannsen Biotech) and Johnson & Johnson the parent company. After being in business for 50 + years it's what I call Marketing BS. They do some studies, spin the results to sell the product, shove it to market and be willing to pay some lawsuits to keep the profit's up!
CONCLUSION: Do your research before getting pushed into this family of drugs- ask, ask, ask questions then if YOUR convinced do it. Good Luck
 
spinnychick said:
Eek I'm starting Monday and now I'm scared.
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You're back!!!!! How was it???!!! Are you going to post some pics so that we can see???!!!

Don't be scared. This is a good thing! And for most it is their 'magic bullet!' Just have faith and stay strong! You can do this!

You still have not made your way over to 'last one wins' We are a buncha loonies and have a blast! :ylol:
 
j.bug said:
You're back!!!!! How was it???!!! Are you going to post some pics so that we can see???!!!

Don't be scared. This is a good thing! And for most it is their 'magic bullet!' Just have faith and stay strong! You can do this!

You still have not made your way over to 'last one wins' We are a buncha loonies and have a blast! :ylol:
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It was GREAT, such a good time. And the best part was no meds, tests, appointments for 2 whole weeks. I saw an endocrinologist Monday and now have osteopenia from the prednisone and the crohn's. I see my gastro Friday and start remicade Monday. Lots going on with all that. How do I post pics on here? Are you on fb? I'll go over to your thread and jump in!! It's the last post one, right?
 
leader77 said:
Remicade- be very, very careful ! This drug is either a miracle drug for some or a curse for others. Do your own research before letting your doctor convince you to go on it. Once it's in your system the only way to get it out is Time. Remicade , Humira, etc. are all in the same catagory. Look at all the lawsuits against the manufacturer. It appears to be the last tool before the Gastroenterologist turns you over to a surgeon. I tried it for almost 2 years back in 2000 after it first came out, little info so I tried it with no affect (good or bad). Had surgery couple years later. This time I had an abdominal fistula, was desperate but stupid not doing my research. 2 infusions (5 mg) no improvement so 3rd infusion (7.5mg) big mistake, fistula got worse and draining more then before. Surgery in 2 weeks. Went back and did my research, like I should have done first, and determined Remicade has minimal if any affect on abdominal external fistula. Some small affect on Anal fistula. I confronted my GI with the data, he obviously didn't research either. The Remicade lawsuits are extensive, with a number of major law firms pursueing! But's its a great cash cow for Centecor (now Jannsen Biotech) and Johnson & Johnson the parent company. After being in business for 50 + years it's what I call Marketing BS. They do some studies, spin the results to sell the product, shove it to market and be willing to pay some lawsuits to keep the profit's up!
CONCLUSION: Do your research before getting pushed into this family of drugs- ask, ask, ask questions then if YOUR convinced do it. Good Luck
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I'm not too sure coming on here and scaring people who are already scared, confused, and looking for assurance is the best thing to be doing. Yes, there are some side effects to Remicade, as with any drug. But there has been a lot of success with these treatments. I am sorry if you have had a bad experience with Remicade, that is a horrible thing to go through. But many Remicade is a fairly commonly used drug. It not only helps with CD, but it helps with other medical conditions.
I am also sorry if you feel that you were forced into this drug, but like you said yourself, it has been a miracle drug for some people.
I agree that it is important to educate yourself before treatment. I know that I read just about everything that I could find. Some things scared me. There have been many success stories with Remi though. Its my opinion, that every person needs to weigh the risks against the benefits.
Not being able to eat, or keep things down, having constant D, suffering from malnutrition, anemia, dehydration, severe weight loss, stunted growth, constant pain, etc... are all very real symptoms to CD. Many of these being life threatening. Un-treated CD can be terminal. To some patients, dealing with these symptoms, it is worth the risk to start biologics treatments.
I was one of those people. I have CD of my terminal ileum, and the very rare esophageal CD. After only 2 treatments, my inflammation levels started dropping. I am now able to eat (most days) the frequency and urgency of my bms has improved, and my ulcers (which run from my throat, down my esophagus, into my stomach, and then return again in my terminal ileum) are healing.

Everything we do, everyday, carries a risk. Some risks are worth taking.
 
spinnychick said:
It was GREAT, such a good time. And the best part was no meds, tests, appointments for 2 whole weeks. I saw an endocrinologist Monday and now have osteopenia from the prednisone and the crohn's. I see my gastro Friday and start remicade Monday. Lots going on with all that. How do I post pics on here? Are you on fb? I'll go over to your thread and jump in!! It's the last post one, right?
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lol, I see you found me on LOW!!! Did you figure out photos??!
 
I am leaving the Remicade Club after 3 good years. It worked well and now it doesn't. I am having a real bad flare 40mg prednisone, Cort Enema's. I will start Humira with Imuran soon. Good luck to all and thanks for your support.
 
j.bug said:
lol, I see you found me on LOW!!! Did you figure out photos??!
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I honestly haven't had a moment to figure out photos. I've been swamped at work, busy with getting back from vacation ... housework, errands, groceries, Christmas shopping, wedding thank you notes, cotor's tests and appointments, etc, etc. I promise to get ther as soon as I have a bit more breathing room lol.
 
#2asap said:
I am leaving the Remicade Club after 3 good years. It worked well and now it doesn't. I am having a real bad flare 40mg prednisone, Cort Enema's. I will start Humira with Imuran soon. Good luck to all and thanks for your support.
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Good luck with Humira.
 
#2asap said:
I am leaving the Remicade Club after 3 good years. It worked well and now it doesn't. I am having a real bad flare 40mg prednisone, Cort Enema's. I will start Humira with Imuran soon. Good luck to all and thanks for your support.
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I hope so much that Humira with Imuran work well for you. I am sorry you are having such a bad flare! Good luck to you, let us know how things work. :hug:
 
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spinnychick said:
I honestly haven't had a moment to figure out photos. I've been swamped at work, busy with getting back from vacation ... housework, errands, groceries, Christmas shopping, wedding thank you notes, cotor's tests and appointments, etc, etc. I promise to get ther as soon as I have a bit more breathing room lol.
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Oh I am sure things have been crazy!!!! When is the first infusion day?? Congratulations on becoming a Mrs!! ;) :soledance:
 
Spinnychick-

I just had my 5th infusion. And ended a 4week course of
prednisone. I am still having trouble and have an appt to
see my Dr next week. When you were in remission with the
Remicade there was no doubt right?? I am tired of the pain
Etc.....


Good luck and I hope you get back into remission very soon!

Lauren
 
Lauren - (and jbug) - I start my first infusion this coming Monday, a four hour appointment. I am finally off prednisone after 5 months on. Lauren, I haven't been in remission yet, but hope the remicade is my miracle drug to get me there. I don't even really know what to expect from remission ... does the weight loss stop? Do I have regular bms? Am I pain free? I don't ever want to take prednisone again, my body didn't much enjoy that drug lol.
 
spinnychick said:
Lauren - (and jbug) - I start my first infusion this coming Monday, a four hour appointment. I am finally off prednisone after 5 months on. Lauren, I haven't been in remission yet, but hope the remicade is my miracle drug to get me there. I don't even really know what to expect from remission ... does the weight loss stop? Do I have regular bms? Am I pain free? I don't ever want to take prednisone again, my body didn't much enjoy that drug lol.
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Deanna and Lauren, in remission you should not have any crohns symptoms. Your blood levels should bd back to normal and inflammation gone. So yes, in remission you should start to gain some weight back, you shouldn't be in pain, and you should have regular bms. remission sounds so dreamy!!! Lol!

That being said, some people are told they will always have some level of the big D. And some people develop chronic abdominal pain syndrom. Its my understanding that in remission you are you again. Being there is no cure for CD, remission is as close as we will get to normal!!!

Lauren, remi may not be a useful drug for you. Have you seen symptom improvement? Sometimes people just respond a bit slower, but I would think after 5 infusions you should KNOW if you are feeling improvement. Your dr may chose another course of action for you. I just hope that you start to feel WELL!!!

Deanna, be excited for Monday! This may be your magic bullet!!!!

SMILE AND HUGZ!!!!!
 
HI all, sorry im having trouble with my laptop. im searching for a new 1 but its tough times b4 xmas so money is tight.

hope you are all feeling well.

ju
 
Jbug

I know remission is out there somewhere! I just haven't
looked around the right corner yet. Meds are just as selective
for each patient as are the symptoms so as of yet I don't
feel defeated.

Thank you for the encouraging thought!


Lauren
 
Tots,

Just wanted to send my support too. You definitely hit the nail on the head with varied symptoms and responses! C responded right away to his remicade infusion so of course we were all excited thinking we were on the way to remission but as soon as we moved out past loading doses the symptoms would return about a month out from the infusion. We were so disappointed at first but we keep tweaking the dose and schedule and recently added methotrexate and I am truly hoping we are back on the road to remission.

Hope you are able to find the right treatment, dose and schedule whether it be remicade or another treatment regimen I hope you find relief and remission soon!
 
Clash said:
Tots,

Just wanted to send my support too. You definitely hit the nail on the head with varied symptoms and responses! C responded right away to his remicade infusion so of course we were all excited thinking we were on the way to remission but as soon as we moved out past loading doses the symptoms would return about a month out from the infusion. We were so disappointed at first but we keep tweaking the dose and schedule and recently added methotrexate and I am truly hoping we are back on the road to remission.

Hope you are able to find the right treatment, dose and schedule whether it be remicade or another treatment regimen I hope you find relief and remission soon!
Click to expand...

hey Clash, have there been any remicade trough levels drawn?? I know this can be helpful
 
It would be helpful if we were willing to tweak the schedule closer in but since he went from 8 weeks to 5 then out to 6 and we have the dose at its highest then knowing trough levels wouldnt change anything. If he tanked now then we'd move to the next med. He's only had one infusion since adding MTX but has lasted longer than any previous infusion(knock on wood).
 
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I think you have things lined up pretty well spinnychick. Don't forget to drink a lot of water evening before and morning of to plump up those cute little veins (no liquor or caffeine). Good luck to you.
 
j.bug I saw you post about last one wins...pop over to two truths and one lie thread amberly created...pretty neat game!! Good luck spinny chick, I hope Remi fixes you right up!!
 
Just a question...

When you go for your treatments, is the IV in your hand or arm?

I am meeting with the nurse to discuss starting remicade next week. Still nervous about it and questioning if its the best choice for me.
 
Thanks Clash. Part of me is tired of trying all these meds and just want them to cut out the bad part but I've heard thats not good either. Fingers crossed remi works.
 
barrett said:
Just a question...

When you go for your treatments, is the IV in your hand or arm?

I am meeting with the nurse to discuss starting remicade next week. Still nervous about it and questioning if its the best choice for me.
Click to expand...

Hey barrett, looks like we can be nervous and start together next week. I hate getting the IV in. I have small veins and often takes a couple tries. I wld love to keep chatting on our journey and compare notes on progress, side effects, etc.
 
Hey barrett!
The nurses at my clinic give me the option as to where to put the IV, which arm, and whether or not its the arm or the hand!

I generally have small veins, but I have to say... the nurses have been great and with the whole TWO infusions Ive had to date, the IV has been in on the first shot!

Drinking lots of water the night before definitely helps!
 
Spinnychick, alcohol and caffiene are dehydrating, which makes it harder to get a vein. Usually, C's infusion takes just under 3 hours and afterward we go out to eat at whatever restaurant C chooses. We have a 3 hour drive home so C does generally sleep for part of it, not due to the Remi so much as the benedryl they give him right before Remicade. By the time we get home he is usually good to go, out and about. I do know other members have mentioned being tired the rest of the day after infusion but that hasn't really been the case with us, just maybe an hour or two.
 
Thanks for sharing Clash. Hope mine goes as well as C's. I had a choice of which area of town and I chose one within a big outdoor mall lol. Retail therapy!
 
I am starving after an infusion.
Maybe because I don't eat much on the Sunday
before my treatment?? But it feels good to be hungry
And not get sick!!


Lauren
 
Yeah, C's is at his GI's office so he's playing Wii with other IBD'ers getting Remi, watching movies, they are provided snacks, drinks and of course all of us moms send bags full of snacks so it's all fun and games but I will say that C does say that it gets chilly in the infusion lab and the nurses do provide warmed blankets. You may want to take a sweater til you know how it is at the one you are going to, Spinnychick.
 
If you have trouble veins, make sure to let the nurse starting your iv know. Also, if you have one that works better for you, let them know that too. they can 'hot pack' your arms too. the heat helps the veins expand. If you go in there cold, they will be contracted to begin with.

I am one of those that is tired afterwards. The reason you get cold is because the infusion meds are kept at room temp. Our bodies are so much warmer than room temp, so as your blood carries this 'cold' liquid through your body, it becomes cold. Most nurses will try to hep control your temp with warm blankets.

First infusion tomorrow!!!! How you feeling??!!! You will breeze through it. Some people feel a difference after their first infusion!
 
When I get my infusions, the IV is started where ever the nurse finds a good vein lol....sometimes my hand, or wrist, or crook of the elbow (I have really GOOD veins there, even after years of sticks!).....

I am usually tired after, but that is because of the benadryl....I have gone to work after, but try to time my appointments so I go to work first, then to my appointment then home....I usually don't restrict anything, even drive myself the hour home....but tend to go to bed early - I also am up about 5am the morning of, so I'm tired anyway!

Good luck with the infusions - I have my next one on Dec. 3rd.....
 
Had my hopes built up but been let down bad.I had my 3rd last week so will be starting maintenance in january. It's every 8 weeks and takes about 2 hours to go in you and an hour checks before you leave.I do feel slightly different as in not needing the toilet as much so can see me possibly increasing my weight.After my first i thought i was cured coz i had a week pain free but that's all i got and the story keeps repeating itself.Seems to only last about a week and at the mo i'm having a little trouble with my throat feeling swollen,not sure if it's linked but feel it is.Kicker is,pain comes back too quick.Not holding out much hope on this one but it's all i got at the moment.
 
DAVID KINGHAM said:
Had my hopes built up but been let down bad.I had my 3rd last week so will be starting maintenance in january. It's every 8 weeks and takes about 2 hours to go in you and an hour checks before you leave.I do feel slightly different as in not needing the toilet as much so can see me possibly increasing my weight.After my first i thought i was cured coz i had a week pain free but that's all i got and the story keeps repeating itself.Seems to only last about a week and at the mo i'm having a little trouble with my throat feeling swollen,not sure if it's linked but feel it is.Kicker is,pain comes back too quick.Not holding out much hope on this one but it's all i got at the moment.
Click to expand...

I think they usually say you will know after the 4th if it will work for you. A couple of things that may be helpful to you though:
My drs draw blood at every infusion. They check all of my levels. Ask your GI if your inflammation markers are getting better. I know for me, I still have a TON of pain, and I am just about right where you are with infusions, though my fourth would have been last Tuesday, and I had to postpone due to emergency surgery. I am rescheduling for next week. If you took a long time to get as ill as you are, it would only make sence that it would take a long time for you to heal.
The other thing you can ask your docs about, is a Remicade Trough level. They take this level at i think, week 6 and 7 once your 8 week schedule is in place. This test tells them the level of remi left in your system. Some peoples bodies use the Remi at a faster rate. They may need to increase the dose, and or frequency of infusions.
Hope that this helps some. I would say to red everything that you can. your docs dont neccesarily know everything, and sometimes they need guiding. be your own advocate!!!
I hope that you start to feel WELL very soon!!!
 
I love all the support and info I get on this thread, thanks to everyone for all the posts! It's great being able to chat about this with others going through the same crap (literally) haha.
 
spinnychick said:
I love all the support and info I get on this thread, thanks to everyone for all the posts! It's great being able to chat about this with others going through the same crap (literally) haha.
Click to expand...

poop puns are fun here arent they??!!! lol! This forum has helped me sooooo much. And I have met some of the most amazing people ever too. I am rather sure Ive got some life long friends here.
 
Thanks thisisme.... I too have small veins and they always have a tough time getting the IV in my hand... for my scopes they just put it in the arm which is must easier.

Spinnychick... yes it would be great to be able to compare experiences with... are you going to be on any other meds while taking the remi?
 
Barrett - I am not going to be on amything else right yet. I am not a good candidate for Imuran due to my genetics and methotrexate didn't work well with me. Are you going to be on anything else?
 
Hi Spinnychick,

I am still currently on pred, on 25 a day now. Tapering by 5 per week. I am currently taking pentasa and nexium and proctofoam. I had a bad reaction to imuran. The reason I chose remi over humira is because on humira I would have to go on methotrexate and on remi I can opt for the steriod injection on my treatment days. I didn't want to try the methotrexate yet because of all of the side effects and if the remi works as well as I hope, there may be a chance for another child. If on humira on methotrexate that wouldn't be possible.
 
I was on the pred for five months and between that and the crohns have suffered bone loss and now diagnosed this week with osteopenia. I hated the pred, lost alot of weight, never hungry, anxiety, dizziness. I chose remi over humira because I didn't want to self inject needles and figured infusions every two months would be better. Do you load up (first dose week zero, dose two at two weeks, then for then eight)?
 
spinnychick said:
I was on the pred for five months and between that and the crohns have suffered bone loss and now diagnosed this week with osteopenia. I hated the pred, lost alot of weight, never hungry, anxiety, dizziness. I chose remi over humira because I didn't want to self inject needles and figured infusions every two months would be better. Do you load up (first dose week zero, dose two at two weeks, then for then eight)?
Click to expand...


Yes, that's how they did my remi dosage. I was lucky enough for some of my major symptoms to go into remission and get off if it. I had only 3 infusions and consider myself one of the lucky ones. I think my symptoms were more due to raw skin on my buttocks causing moisture and what i thought was anal leakage. Now that this has healed, the itching has subsided and the moisture has dried up.:thumright: Hopefully I won't have to go on it again. Good luck with the treatment and wishing you speedy results!
 
cmichael said:
Yes, that's how they did my remi dosage. I was lucky enough for some of my major symptoms to go into remission and get off if it. I had only 3 infusions and consider myself one of the lucky ones. I think my symptoms were more due to raw skin on my buttocks causing moisture and what i thought was anal leakage. Now that this has healed, the itching has subsided and the moisture has dried up.:thumright: Hopefully I won't have to go on it again. Good luck with the treatment and wishing you speedy results!
Click to expand...

So are you off remi now?
 

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