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Had my 4th infusion today! First maintenance dose after the loading doses :)... went well! Although I am already having not so fun tummy pains... boo!
 
thisisme said:
Thats just ridiculous.
They are an insurance company, not a doctor... if theres evidence showing that it is the best treatment, than that is what they should approve! That's my thought on it anyways...
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It's how it should be, but I was denied Remicade for the same reason!
 
My Tummy Hurts said:
Oooo, I am looking forward to seeing people in this thread, I have not started yet but getting ready to. I'm nervous!!
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don't be nervous, you'll be fine. its a outpatient procedure, so you'll be in the doctors or hospital fora couple of hours and then you'll go home the same day. its really helpful for ppl who also has Psoriosis, i should know i also got that.

good luck! :ysmile::hug:
 
melaniecfan4ever said:
don't be nervous, you'll be fine. its a outpatient procedure, so you'll be in the doctors or hospital fora couple of hours and then you'll go home the same day. its really helpful for ppl who also has Psoriosis, i should know i also got that.

good luck! :ysmile::hug:
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You do know the post you just answered is almost 5 years old.
 
Ahh never mind the sentiment still stands - we are all nervous when we first start.

I just had a lucky escape with chickenpox , my niece and nephew got it while I was on holiday. Don't think I would have been aloud my latest dose if I had been hanging out with them and their pox.
 
beach bum.
ive a query.
are you at most risk form infections like chicken pox after an infusion? I mean is our immune system only temporarily compromised or is it compromised all the time.
well as long as your blood work was ok.

ju
 
sickinlk said:
beach bum.
ive a query.
are you at most risk form infections like chicken pox after an infusion? I mean is our immune system only temporarily compromised or is it compromised all the time.
well as long as your blood work was ok.

ju
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My youngest daughter contracted chicken pox after having the vaccine. I was on Remicade at the time and wasn't infected. About 3 year after that I had a nasty case of histoplamosis (fungal infection) that nearly killed me. I had lab work done periodically while on remicade and the labs where always ok. Even when I was so sick with the Histo my CBC was normal. I just don't think the lab work is an accurate with of telling if you are compromised while on remicade.
 
well on average we get an infusion every 8 wks so are we compromised straight after the infusion or all the time. that's the question.

on another note about labs. my lft's were high and the nurses still went ahead with the infusion. I didn't know at the time as they said they were fine.
makes me wonder did they check them at all.
ju
 
I know the nurses at my infusion clinic are pretty strict about your health prior to giving the infusion. If we show any sign of a cold, etc. they will not give the infusion without the doctor signing off on it.
 
Hi Everyone. I had my 4th Remicade dose today. I'm feeling like a wrung out dishrag and my head is still foggy, I guess from the Benedryl. I didn't feel like this after the first 3 loading doses. Is this normal?

And to vent/rant: since it's a new year my insurance deductible started over, and I had to pay over $4000 today!! Yikes!!
 
thisisme said:
I know the nurses at my infusion clinic are pretty strict about your health prior to giving the infusion. If we show any sign of a cold, etc. they will not give the infusion without the doctor signing off on it.
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Mine too, you have to tell them everything before hand, do you go to an AIM clinic?
 
I don't quite know how it works, I am compromised all the time as I take azathioprine as well, but whether we are at more risk when we have just had an infusion than we are towards the end of the 8 weeks, I don't know. I suspect the answer would be yes.

But as the others have mentioned they always ask if I have had any infections or fevers before they do my infusion and I assume they would not let me have it if I was about to have pox or shingles because it would take longer to get over.
 
Beach Bum,
well touch wood, I haven't had much sickness and I have 2 school going kids bring all the germs in the house.
I don't feel compromised at all but I do be fearful of things like the pox and flu's. speaking of which, my youngest was up with a temp of 102 last night.. hope its not my turn to see how my immune system handles sick.
cant be avoided.
ju
 
Haha I like the idea of an "IV League" and turning something pretty unpleasant into a team thing. I've been on Remicade for a while, though I skipped my infusion last week due to insurance issues and because I honestly don't think it's working.

My experience with Remicade:
-I started in May, 2012
-I still have really intense pain after eating
-I never had any allergic reactions, although my skin has been really dry and brittle since then
-Does anyone else sometimes get mini panic attacks during the treatment? I'm not sure if it's me psyching myself out (I really hate needles, but never so bad that I fainted or anything) or if there's a medical reason for it, but one second I'll be sleeping in my Benadryl-induced dreams, and the next I'm awake and my heart just starts going bananas.
 
Yes, I also get mild panic attacks, especially if I'm flaring. My idea is it's throwing your immune system in reverse and the body responds with anxiety. I also get really bad panic attacks and anxiety if I'm flaring too and normally I'm a very chill person.
 
I'm not on prednisone anymore. I was just taking the Remicade infusion, and two Tylenol and a Benadryl twenty minutes before to prevent allergic reactions.
 
Welcome Melmonkey!

Take a good book or movie, Tuesday might take a while :) They'll put you on a comfy couch or chair (hopefully!), probably give you Tylenol and Benadryl to prevent an allergic reaction or small discomforts, and start an IV - my nurse always puts it in my hand, which I was pretty surprised by on my first visit. But it just makes it easier to move around. Then basically you stay there for two to three hours while the Remicade goes in through the IV, and when the bag runs out you're done!

Good luck:)
 
StrawberryRain said:
I'm not on prednisone anymore. I was just taking the Remicade infusion, and two Tylenol and a Benadryl twenty minutes before to prevent allergic reactions.
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Do you drink caffinated beverages before your infusion? I used to drink a Mountain Dew to settle my stomach and it seemed to make it worse. Now I don't even have coffee that morning and it is better. I hope this helps-this happened to me at first but went away over time.
 
StrawberryRain said:
Welcome Melmonkey!

Take a good book or movie, Tuesday might take a while :) They'll put you on a comfy couch or chair (hopefully!), probably give you Tylenol and Benadryl to prevent an allergic reaction or small discomforts, and start an IV - my nurse always puts it in my hand, which I was pretty surprised by on my first visit. But it just makes it easier to move around. Then basically you stay there for two to three hours while the Remicade goes in through the IV, and when the bag runs out you're done!

Good luck:)
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What if you need to go to the bathroom, can you get up and go? That is my big worry. I'll be taking a bunch of stuff to entertain myself
 
Melmonkey said:
What if you need to go to the bathroom, can you get up and go? That is my big worry. I'll be taking a bunch of stuff to entertain myself
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Oh yes! They will most likely put your Remicade pouch (it looks like the pouch they put your blood into when you donate blood) on a tall metal pole with a hook at the top (I don't know what it's called) and it will have wheels so you can roll it to the bathroom with you.

Of course I'd recommend washing your hands extra well and making sure you keep your IV hand really clean and all that. Being a germaphobe is usually a good idea when you're on Remicade :p since your immune system is being suppressed and all.

I've only received infusions at one place (a Wallgreens special facility) but before I chose Wallgreens, I "interviewed" a bunch of places, and they all seemed to use the same system.
 
Mountaingem said:
Do you drink caffinated beverages before your infusion? I used to drink a Mountain Dew to settle my stomach and it seemed to make it worse. Now I don't even have coffee that morning and it is better. I hope this helps-this happened to me at first but went away over time.
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Nope, I don't drink sodas or coffee at all, they really irritate my tummy :( Thanks for the suggestion though! I may try only drinking water that morning.

The weird thing is that this didn't happen with my first five infusions, only the last three. I don't think I've changed my habits or anything? I talked to my doctor about it today and he didn't seem worried.
 
StrawberryRain said:
I'm not on prednisone anymore. I was just taking the Remicade infusion, and two Tylenol and a Benadryl twenty minutes before to prevent allergic reactions.
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oh, its just I normally get a steroid shot into the IV during an infusion. im sure lots of other do here aswel. I didn't know I was getting it until I saw a nurse putting it in and I questioned her.
ru sure you are not getting hydrocortisone along with the remicade infusion?
ju
 
sickinlk said:
oh, its just I normally get a steroid shot into the IV during an infusion. im sure lots of other do here aswel. I didn't know I was getting it until I saw a nurse putting it in and I questioned her.
ru sure you are not getting hydrocortisone along with the remicade infusion?
ju
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Oh wow I never noticed it. I'll be sure to look closely when I go in on Friday!

What is it for?
 
New here and to the disease. Been really sick with abdomal problems for years. In january of this year the finnaly figured out it was Crohn's. Had my first loading dose of remicade on tuesday. Dont really know what to think yet. Feeling a little bette. Was pretty tried the next day, but the flare I was having was gone within a few hours of my first treatment. Hopeing this medication will do the trick. This is a great forum with lots of good advice and friendly people.:ybiggrin:
 
strawberryrain,
it another precaution so that you don't react to the remicade. its a very mild dose and hydrocortisone isn't as strong as prednisolone. I think it equivalent to 8mg of pred. I had a funny reaction before xmas. my heart was racing a bit and I felt out of it. I didn't realise it was the steroids until I saw a nurse injecting something into the bag.
it could well be the cause of your palpitations.
ju
 
welcome Remus.
I had good results with it quickly too. overnight a saw an 80% improvement. im counting the number of bm's I was having to get that percentage.
now 5 month down the line im in remission. no toilet trouble at all.
hope it does the same for you.
funny that they went straight to remicade before trying everything else first.
ru not on anything else?
ju
 
Not on anything else execpt some norco to control the pain and i did not even need one yesterday. I don't know why they went stright to the remicade. I think my GI is trying this step down treatment. It seems to be working though. Today is the first day i have felt half way normal in a long time. So im not going to knock it. :ysmile:. Next infusion in two weeks. keeping fingers crossed.
 
There are a number of GIs that subscribe to the "top down" approach. The theory is to hit the active disease with the big guns in hopes of staving off stricturing/fistulizing damage or progression in the future.

I'm glad the Remicade seems to be helping you rrehmus, may it continue to do so!!!

Oh and welcome to the club!
 
rrehmus said:
Not on anything else execpt some norco to control the pain and i did not even need one yesterday. I don't know why they went stright to the remicade. I think my GI is trying this step down treatment. It seems to be working though. Today is the first day i have felt half way normal in a long time. So im not going to knock it. :ysmile:. Next infusion in two weeks. keeping fingers crossed.
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Welcome, glad the Remicade is working for you.
 
rrehmus said:
Not on anything else execpt some norco to control the pain and i did not even need one yesterday. I don't know why they went stright to the remicade. I think my GI is trying this step down treatment. It seems to be working though. Today is the first day i have felt half way normal in a long time. So im not going to knock it. :ysmile:. Next infusion in two weeks. keeping fingers crossed.
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my Gi wanted to go the step down route too, but, when I asked recently to come of remicade (now im in remission) he was out of ideas on what to put me on.....long story, but my uc was drug and steroid resistant and the 5asa's may have caused pancreatitis so im stuck on it now till they come up with a solution.
fingers and toes crossed for u
ju
 
hello all. I just had my first dose last week. Had no issues bar nearly fainting when the nurse stuck the cannula in my wrist. Not sure why that happened as I am not scared of needles, and have had an IV several times before with no problems. Perhaps I was just nervous, I do know that I had a really high resting heart rate of 130 when I went in (was down to a normal 85 by the end of the infusion).

Now I don't want to jinx things but it appears as though it has had an effect already. My bowel movements are down to 1-2 solid, normal ones per day compared to 3-4 loose with some blood before the infusion. My appetite has also increased quite a lot (in fact I can barely stop eating), and also the huge number of painful ulcers that I had on my tongue (which I have had for the last 4 months or so) have been healing very rapidly and are now basically almost gone.

My Doctor also has me on methotrexate 15mg/week (which I also recently started) in order to protect the response to the remicade. Hopefully this will do the trick. I was on humira and azathioprine for a while, which worked for a few months, until the azathioprine started making me ill (I started to develop pancreatitis so had to stop it). When I stopped the azathioprine a few weeks later the humira stopped working as well and I had a massive flare. I am hoping I can tolerate the methotrexate properly because I don't want the same thing to happen. So far so good though, no ill effects from either of them so fingers crossed :D .
 
heisenberg said:
hello all. I just had my first dose last week. Had no issues bar nearly fainting when the nurse stuck the cannula in my wrist. Not sure why that happened as I am not scared of needles, and have had an IV several times before with no problems. Perhaps I was just nervous, I do know that I had a really high resting heart rate of 130 when I went in (was down to a normal 85 by the end of the infusion).

Now I don't want to jinx things but it appears as though it has had an effect already. My bowel movements are down to 1-2 solid, normal ones per day compared to 3-4 loose with some blood before the infusion. My appetite has also increased quite a lot (in fact I can barely stop eating), and also the huge number of painful ulcers that I had on my tongue (which I have had for the last 4 months or so) have been healing very rapidly and are now basically almost gone.

My Doctor also has me on methotrexate 15mg/week (which I also recently started) in order to protect the response to the remicade. Hopefully this will do the trick. I was on humira and azathioprine for a while, which worked for a few months, until the azathioprine started making me ill (I started to develop pancreatitis so had to stop it). When I stopped the azathioprine a few weeks later the humira stopped working as well and I had a massive flare. I am hoping I can tolerate the methotrexate properly because I don't want the same thing to happen. So far so good though, no ill effects from either of them so fingers crossed :D .
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I fainted when I got my first dose, I figured it was because I was nervous.
 
Ok friends. My Remicade is definitely not working anymore. My tummy hurts all over with sometimes more pain on the right then it's on the left. I am taking Trmadol every 4 hours which helps to keep it a little less painful, and adding a heating pad to it. I have an appt with GI on Monday afternoon, but this is getting to be a bit much. I honestly don't mean to whine and I am eating very little and non residue items for the past two days, but to no avail. I hate to think I may have to go to ER and hope I can wait until Monday for my appt.
 
3rd dose and felt kinda nausea the next day and went to bed the next night and slept 11 hours, it makes me really sleepy and i get caught up on rest
 
One year this month, every 6 weeks, and recently every 5. I don't mean to disappoint all those that are on it. It worked wonders for me for quite a while.
 
JudithC said:
Ok friends. My Remicade is definitely not working anymore. My tummy hurts all over with sometimes more pain on the right then it's on the left. I am taking Trmadol every 4 hours which helps to keep it a little less painful, and adding a heating pad to it. I have an appt with GI on Monday afternoon, but this is getting to be a bit much. I honestly don't mean to whine and I am eating very little and non residue items for the past two days, but to no avail. I hate to think I may have to go to ER and hope I can wait until Monday for my appt.
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How often are you getting it? Maybe your doc can increase the amount or frequency?
 
JudithC said:
Ok friends. My Remicade is definitely not working anymore. My tummy hurts all over with sometimes more pain on the right then it's on the left. I am taking Trmadol every 4 hours which helps to keep it a little less painful, and adding a heating pad to it. I have an appt with GI on Monday afternoon, but this is getting to be a bit much. I honestly don't mean to whine and I am eating very little and non residue items for the past two days, but to no avail. I hate to think I may have to go to ER and hope I can wait until Monday for my appt.
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hey Judith,
how ru getting on now,
sorry that you are in such distress. did they consider adding something to it like 6-mp? they could try you on humira now if remi stopped working. theres a good chance it'll be successful the same as remi was.
I would go to the ER if it gets bad and they might put you on some fluids steroids and pain killers for a night to give you some relief.
hope you feel better soon.
ju
 
Thanks ju, Just up from my first night of tossing and turning. Never hurt during night before. I had taken two tramadol late evening, so it did not hurt much when I went to bed. However cramping and some pain woke me several times. I will talk to Dr. about Humira, and am seriously considering ER. Thank you.
 
well if you will get sorted a lot quicker and get some relief. you could also try Imodium to settle the cramps. bear in mind that tramadol will slow down the digestive system anyway. they can sometimes cause constipation.
ju
 
Hugs

DS had his first rxn to remicade on feb 7th.
Scratchy throat
Tingling tongue
And trouble breathing
He is pre treated with Benadryl and Tylenol 30 minutes prior plus Zyrtec every day to keep things calm.
His fingers have started to peel on his skin with three infusions now.
He has had rashes and blisters ....
Plus dermitis now from the remicade ( on his face hands and scalp)
Not very optimistic -that he will be able to get it much longer.
We get to talk to his Gi before his next infusions - he said we discuss changing the pre meds
Any ideas to what ???
I am assuming
Just adding steriods since he is already on Benadryl and Tylenol .
 
Oh my, I'm so sorry he is going through all this. I would think that Remi is not quite the right fit for this little boy, but I have no ideas what to suggest. Perhaps someone with children on this forum might be able to discuss more thoroughly with you. Meanwhile I'll send along prayers and healthy thoughts.
 
JudithC said:
One year this month, every 6 weeks, and recently every 5. I don't mean to disappoint all those that are on it. It worked wonders for me for quite a while.
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I read somewhere recently that studies show that 50% of people on remi and humira grow immune to it after a year. Is this true? Perhaps you will be switching to humira, I think I am. Find out tomorrow when I see GI.
 
I'm seeing GI this afternoon. I'll let you all know what he says. Thanks so much for all your support. It's good to chat with people who truly understand.
 
I had my 3rd infusion on Thursday and felt sick and a bit of diarrhea the next day and slept for 11 hours anyone else have this kind of symptoms. Will start the 8 week process.
 
Elf, are you taking pre meds? Yes the fatigue I think is just part of the process, for me it got easier.

Went to GI today to discuss what's next? He is going to double my dose and is running a series of tests on my stools. He seemed really puzzled that Remicade did not seem to be working at all any more.
 
yeah take 500 mg Tylenol and Zyrtec and have been sleepy before but haven't had the sick feeling and diarrhea. I feel great today! Hope they can get everything worked out for you and start feeling better.
 
I did take Remi for a whole year though and it worked for me for quite a while. I hope this will be good for you too.
 
has any of yous had high LFT's on a few occasions? mine have been up since January. I wonder will I not get my infusion because of it on Monday. I have to give another blood sample 2moro to see if they're still elevated.
ju
 
Not that I know of. No one seems to be concerned about the results of my blood tests, and those that I have seen are pretty normal. Are you taking Tylenol? That can affect the liver too.
 
no i don't take anything usually. i work through the pain or find alternatives. im on no other drugs apart from remicade. my gp also mentioned primary schlerosing cholangitis!!! been looking it up and praying its not that.
ju
 
how long you been taking remicade? I had two doses and my liver levels were mildly elevated but they said to go ahead with the 3rd dose and they would check again in 3 mos. what my levels are. I'm not taking any other meds either, but I take tyneol and zyrtec before the infusion.
 
don't actually remember. I was slightly elevated the 1st time and then had risen the 2nd time. ill have to ask again 2moro and record it.

ju
 
Well had my second loading of remicade today. No problims with side affects or anything elese thus far.:ybiggrin: next infusion now in 4 wks. Been feeeling pretty good. Tummy still a little upset but has not that bad. Still this is the best I have felt in years. Hopeing that I will continue to improve.
 
Considering starting remicade. I am currently on 2000 a day of pentasa, and 25 every other day of 6mp(my body doesn't agree with it) they aren't working, so doctor says maybe stepping up and finally kicking this into remission.
-I was diagnosed in February of last year.
 
Chronie4ever said:
Considering starting remicade. I am currently on 2000 a day of pentasa, and 25 every other day of 6mp(my body doesn't agree with it) they aren't working, so doctor says maybe stepping up and finally kicking this into remission.
-I was diagnosed in February of last year.
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hi crohnie,
looks like there no other option for you. what symptoms are you having.
ju
 
Had my 3 loading doses, finding a flare at 5 weeks and saw GI yesterday and he is adding Imuran to the mix although my genetic testing said I'm not a good candidate?? Insurance still won't cover the remi, but am hopefully getting this dose as a freebie.
 
that's quiet a cocktail spinny. guess they're clutching at straws now. wonder why they wanna go ahead when the test says you're not a good candidate
 
spinnychick said:
Did you try just remicade alone first? Any side effects from Imuran? Were you tested for it prior to starting it?
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I started Imuran first, back in October, I think. It takes up to twelve weeks to start working.

I was supposed to work up to three pills a day (150mg) but I was HORRIBLY nauseous, so I ended up taking two a day(100mg), and I am fine with that dose. I take them at night, and I notice my urine is bright yellow in the morning. I had my three loading doses of Remicade- the last one being Jan.9th, and I go next week on March 6th for my next treatment.

Was I tested for what what before starting it? Sorry, must have missed part of discussion.

My GI dr. said he has had the best success with combining these two meds.

So far, Remicade is working great. I have issue with an abscess on my bottom which may threaten coninued use of Remicade, but I hope not because it really helped my stomach and fatigue issue!

Abscess is great right now though, barely there. Hoping the fistula has stopped.

I did have one bad day last week where I had bad pain that started in my kdney(I think) and moved to the front/side and throbbed and I was worried that an abscesshad formed on an organ or something to cause that amount of pain. I went to bed early that night and it was fine the next day. So I don't know what that was?
 
I was taking both Imuran and Remicade, but the Imuran had too many side effects. Blood shot eyes, painful joints, and nausea. So now I'm only on Remicade.
 
Remicade and azathioprine are much more effective in combination than just Remicade alone. I believe the figure is 40% stay in remission after 1 year on Remicade alone vs 60% on both. Azathioprine not only helps to treat crohns but also protects you from becoming resistant to the Remicade. There is obviously an increased chance of side effects but I think this is outweighed by the benefits. Personally I am on methotrexate as I am allergic to azathioprine, however it works in a similar way.
 
spinnychick said:
Had my 3 loading doses, finding a flare at 5 weeks and saw GI yesterday and he is adding Imuran to the mix although my genetic testing said I'm not a good candidate?? Insurance still won't cover the remi, but am hopefully getting this dose as a freebie.
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So the drug company agreed to a freebie dose? That is excellent. I hope your insurance situation gets sorted out.
 
JoFowler said:
I started Imuran first, back in October, I think. It takes up to twelve weeks to start working.

I was supposed to work up to three pills a day (150mg) but I was HORRIBLY nauseous, so I ended up taking two a day(100mg), and I am fine with that dose. I take them at night, and I notice my urine is bright yellow in the morning. I had my three loading doses of Remicade- the last one being Jan.9th, and I go next week on March 6th for my next treatment.

Was I tested for what what before starting it? Sorry, must have missed part of discussion.

My GI dr. said he has had the best success with combining these two meds.

So far, Remicade is working great. I have issue with an abscess on my bottom which may threaten coninued use of Remicade, but I hope not because it really helped my stomach and fatigue issue!

Abscess is great right now though, barely there. Hoping the fistula has stopped.

I did have one bad day last week where I had bad pain that started in my kdney(I think) and moved to the front/side and throbbed and I was worried that an abscesshad formed on an organ or something to cause that amount of pain. I went to bed early that night and it was fine the next day. So I don't know what that was?
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Did you have the TPMT test for the Imuran? It's a test to see if your genetic makeup is compatible with this drug. My test came back saying I was not a good candidate and that it was dangerous for me to take yet my GI put me on it anyway.

Horrible (and stupid) question - abscesses on your bottom - I have a teeny bump on my butt, right near the hole and if squeezed, pus comes out. It is kinda dark black but only really the size of a mole. Is this an abscess?
 
spinnychick said:
Did you have the TPMT test for the Imuran? It's a test to see if your genetic makeup is compatible with this drug. My test came back saying I was not a good candidate and that it was dangerous for me to take yet my GI put me on it anyway.

Horrible (and stupid) question - abscesses on your bottom - I have a teeny bump on my butt, right near the hole and if squeezed, pus comes out. It is kinda dark black but only really the size of a mole. Is this an abscess?
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My fistulas when they first came to the surface were purplish-black, they were a little bigger, but it certainly sounds like an abscess.
 
spinnychick said:
Did you have the TPMT test for the Imuran? It's a test to see if your genetic makeup is compatible with this drug. My test came back saying I was not a good candidate and that it was dangerous for me to take yet my GI put me on it anyway.

Horrible (and stupid) question - abscesses on your bottom - I have a teeny bump on my butt, right near the hole and if squeezed, pus comes out. It is kinda dark black but only really the size of a mole. Is this an abscess?
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I had a lot of tests and bloodwork done before starting the meds. That one doesn't ring a bell, but I was really overwhelmed at the time with being sick, in pain, surgeries, diagnosis etc etc etc, so I may have! lol

For me, abscess was under the skin, it starts out by really hurting to sit and then I could feel the huge lump under the skin. I couldn't really see it though. Although the skin did get red when it was really infected.

I would definitely get it checked though!! They need to know if it is an abscess and if you have a fistula.
 
I had a reaction to the Remicade today(well a severe reaction I always have reactions though) thankfully the benedryl kicked in and I felt better in a few minutes but it was scary. I felt really itchy(like usual) then all of a sudden it got really hard to breath my face felt really hot ad there were red sploches all over the iv site. I let a nurse know but downplayed it a lot to finish the infusion. She had me moniter myself the rest of the infusion and I felt fine after that. I just called my gi to let them know about the reaction so well see what happens next. I premedicate with a steriod, 2 tylenol and a benedryl...

:( I may be leaving this group...after a year of great success with Remicade my body may hate it to much now but well see what the doc says
 
Alright dr says stay on Remicade esoecially since once the benedryl kicked in I was ok and its the one drug that has worked wonders. Hopefully next infusion will go fine.
 
I'm also on Imuran and Remicade -- and my GI pretty much said the same as everyone else -- that it's more effective in combination. She also said the imuran will not assist me with my fistula, but that the hope was Remicade would take care of that!
Had tests before imuran... but not the TMTI (or what it was that ya said before)... And had to get weekly blood work. Now up to my full dose of 150mg, and getting blood work only every 6-8 weeks (YAY!)... For me, Imuran causes the aforementioned very yellow pee (alllll the time!).. and a lot of joing pain. I also had a lot of nausea, but my GI gave me Tecta to help with that which has worked... she also said that if Tecta helped, then it was likely not the Imuran causing it, but rather the Crohn's being higher up my digestive tract (yippee! :p)...

I hope everything is getting worked out with your insurance spinny! And hopefully if you start imuran, that will help things along as well!
 
lookame said:
Alright dr says stay on Remicade esoecially since once the benedryl kicked in I was ok and its the one drug that has worked wonders. Hopefully next infusion will go fine.
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Good luck with the next infusion lookame! ...I had a reaction on my 3rd loading dose, but it didnt kick in until later that night. It was similar to yours, but my GI didn't seem concerned. I was paranoid for my 4th dose though, but everything went fine for that one! Hopefully your next one will as well!
 
thisisme said:
Good luck with the next infusion lookame! ...I had a reaction on my 3rd loading dose, but it didnt kick in until later that night. It was similar to yours, but my GI didn't seem concerned. I was paranoid for my 4th dose though, but everything went fine for that one! Hopefully your next one will as well!
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Yeah I thought it was a bad reaction but I guess according to my gi that its not a bad reaction. *shrug*
 
I've been fortunate to not have any reactions so far. My dose has been doubled however and we'll see what next Friday will bring. The infusion problem I run into is bad veins and I actually feel bad not only for myself but for the poor nurses who are trying so hard to find a vein and limit the hurt they are causing. Other question for all of you: Are you still limiting your diet?
 
JudithC said:
I've been fortunate to not have any reactions so far. My dose has been doubled however and we'll see what next Friday will bring. The infusion problem I run into is bad veins and I actually feel bad not only for myself but for the poor nurses who are trying so hard to find a vein and limit the hurt they are causing. Other question for all of you: Are you still limiting your diet?
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I'm slowly trying to add foods back. I'm nervous about it though.
 
Like Alli trying to add some diffrent things, but this the first time in a while that I have felt pretty good constantly so im being real carefull. Doing ok with the stuff iv added so far.
 
OMG, I must have jinxed myself yesterday talking about Burt! (what I have named my abscess) It flared right up last night, worse it's been in weeks :(
 
amyh said:
Does anyone notice you bruise easier or get hematomas? Today I broke a blood vessel in my wrist while chipping some ice away in my freezer, and got a hematoma in my wrist. I didn't hit it on anything, it was just from normal wrist usage. I saw a doctor just in case and he said it will just heal in time, and its not dangerous to me. (I was concerned about the possibility of a blood clot traveling through my system)
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No I haven't noticed that. Hopefully it doesn't last with you!
 

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