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Crohn's Disease
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Posted 12/4/2011 3:52 PM (GMT 0)
I am a long term crohn's patient. Had one bowel resection 9 years ago been in remission over since on no meds! However had developed anaemia over the last year and needed two iron infusions, recent investigations of anMRE of the bowel(MRI) says my disease has returned and now recommeded to go on a years course of Remicide (Infliximab) . Don't know much about it but would appreciate anyone's experience of this drug (been told is very expensive - I live in UK).

Due to start my first infusion before Xmas !!

many thanks.

ZIGGY
Posted 12/4/2011 4:02 PM (GMT 0)
Hi Ziggy, it is an expensive drug, but I assume because you're in the UK that shouldn't effect you:)

As far as the drug, it has done some wonderful things for so many people. I'm not on this at
present, so I'll let those that use it regularly tell you more.

Good luck with your first infusion!!
Posted 12/4/2011 4:11 PM (GMT 0)
Vicky

Thank you for your kind reply, thought I had got away with this disease returning for a while.... it keeps you guessing....

regards

ziggy
Posted 12/6/2011 3:45 AM (GMT 0)
Hello! I'm new here but I've had 2 Remicade infusions & haven't seen much of a relief in symptoms(I don't expect their to be) but it hasn't been too bad of an experiance.

   As far as cost: I have the best insurance in my state and it's WELL over a few thousand dollars for EACH infusion. Thank God for financial programs to help out with the cost.

  As far as the setting it can be done in: I know in the U.S you can get it done for sure in a infusion clinic/hospital/doctor's office(like a Rhuematologist/GI office).

  As far as side effects: I have no room to talk because I'm not fond of eating at all but the nurses always say to drink tons of water and try to eat before/during the infusion so it's not as draining and I decided to stay well hydrated my second infusion to see if it would help the fatigue I felt for days after the seond infusion. The nurses were right! I still felt very weak but it wasn't as bad. My main side effects I always get are: Muscle cramps, more joint aches, tightness of chest, little hair loss(vitamins to help that)and a slight fever. It may seem like the side effects outweigh the benefits at first but if this gets me into remission then I can handle the above mentioned things with a smile! All in all, it hasn't been too bad.

Posted 12/6/2011 8:29 AM (GMT 0)
Hi Ziggy!

I have been taking Remicade for about 8 months, and while it took awhile to kick in, it does seem to help! Do you know if you are doing loading doses, such as first infusion , then 2 weeks later the 2nd infusion, then 4 weeks later the 3rd? If so, this was the hardest for me as I was getting headaches from the Remicade at the beginning, and during infusion #2, after 8 attempts they were unable to start and IV so I ended up with a picc line. Do NOT let my bad start up experience frighten you, I was very sick and dehydrated at the time, and this is not the norm from what I understand!

I do not feel instantly better from the med as I know some patients do, but I start feel better after about a week. As for side effects, I had headaches when I first began, and I also do get a little bit of muscle soreness, weakness, and some nausea. I find that the benefits far out weigh the side effects. Do you know if you are getting any pre-infusion medications administered? I started with none, and now I get both Solu-cortef, and Benadryl. I find the side effects are less noticeable with the pre-meds.

As for the infusion itself, it takes a little while to administer, so dress comfortably and bring something to occupy your time! They start the infusion slow, and increase the speed slowly, so eventually you will be getting through the infusions quicker. As for the cost, I hope it is covered for you in the UK! I am in Canada, so I am lucky enough to be completely covered for the costs, and I hope you will be too!

Good luck, I hope it goes easily for you, and have a great Christmas!
Posted 12/6/2011 7:40 PM (GMT 0)
Thanks to all for you imput.

Have infusion next week.

Will keep updated.


ZIGGY
Posted 12/6/2011 10:15 PM (GMT 0)
Ziggy - I was on remicade for 6 years. It was a life saver. It really helped me - I saw immediate (within 24 hours) improvement. I hope that you have success with it! Please do keep us posted!

Stef
Posted 12/6/2011 10:47 PM (GMT 0)
Good luck! I've never tried Remi, but it's next in line if I'm not better by January.
Posted 12/7/2011 12:23 AM (GMT 0)
It worked pretty good for my crohn's.
Posted 12/7/2011 12:38 AM (GMT 0)
hello... i just finished my loading doses and i must say i LOVE remi.... I have had crohns for 3 years now, and went through 5 different drs..I finally found one who started with the lower meds and then worked his way up...i eventually hit 6mp and that effected my liver, then i tried Humira which helped a little but didnt put me into remission adn now im on Remi and I am able to eat! and i am soooo happy...... I do get tired, but compared to the fatigue from having diareah for days i will take the remicade fatigue... good luck and im hope its as good to you as it has been for me!
Posted 12/7/2011 1:15 AM (GMT 0)
I Was on it for 7 doses and up until the last does was doing great, bleeding stopped , able to eat, no d..but after doing a few rounds of blood work ( which you should do on a regular basis)it shot my liver count up way to high..so alas the dr is taking me off of it and am going to try humira and hope it works just as well.
Had a few minor side effects from it, but nothing i couldn\t deal with.
remember to give it time to take effect. good luck
Posted 12/7/2011 3:57 AM (GMT 0)
Wishing you the best of luck with it to a speedy and long lasting remission!!
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