Is Remicade the Right Drug? When will it Start Working?

[dealing26]

hey so i just got remicade for the first time last week . I have abscess that were no longer infected but they just wouldent close .. im hoping that they do . But what my question is .. I am so tired and i have been soo tired for 2 years .. no matter how much sleep i get .. i thought that remicade would instantly help me and take away this awful tiredness i feel like i cant even walk im soo tired ! is Remicade the best drug out there for crohns ? when will i know if its working for me? The thing is i have perianal crohns so i had an abscess and a seton in and ficuals ect but i have never experianced any pain in my stomach or anywhere really .. they know i have crohns for sure because i had a biospy done and i also have autheritis all over my body and im only 26 yrs old :ywow: ... i know everyones crohns cases are different! this is soo dibiliating .. i feel like i cant see the light and i just wanna cry ..

 

[annawato]

Hi dealing, Remicade didn't work for me although it has for heaps of people. Some people see an improvement relatively quickly (though probably not after just one infusion) others it takes longer. It should help with your arthritis too.

As for feeling tired I sympathise with you there. I feel bone aching tired every day and no medication seems to help. Maybe there is something else going on. Have you spoken to your doctor about how you are feeling?

Its natural to be feeling sad about it all. Feeling exhausted all the time just makes it worse. I wish I could magically wave a wand and make you feel better. have you got a good diet? You may want to get your doctor to do some blood tests to measure your iron, b12 and vitamin D as being low in these can make you feel pretty awful. I also swear by fish oil to help with joint pain. You need to take nine of the 1000mg capsules but it works pretty well. My gastro recommended it for crohn's too as it is an anti inflammatory.
I hope you are feeling happier soon. Talk to your doctor about everything and see what they recommend. Take care,

 

[AlliRuns]

I just started Remicade as well, my Crohn's is also perianal. My doc said to be patient, it can take a little longer to work when it is used to help heal fistulas and such. I've had 2 doses and have noticed much change yet.

 

[dealing26]

THANKS ! that does make sense about remicade taking longer to take affect because its closing fistulas .. im feeling a bit better yesterday and today actually the brain fog is kinda gone .. i dont know if its the tramadol thats making me feel better or if the remicade is actually starting to work .. i will deffinatly start taking the fish oil as of today and i also got myself some b12 pills hopefully those will give me more energry as well to keep up with my busy working life and mom of a 2 yr old crohns has just interferd sooo much im looking forward to living somewhat of a normal life ! fingers crossed !

 

[Lissa425]

I just started Remicade too. Had two infusions so far and I can't really tell if it's working. I feel a little better and I'm throwing up less so maybe it'll just take longer for it to work on us. I feel for you about the arthritis. That must be very painful. Hope you start feeling better soon!

 

[dealing26]

Thanks Lisa ! Today was my second infusion .. I'm actually feeling amazing ! Huge changes ! My head feels clear and I'm soo less tired ! Good luck to you !

 

[SdN]

dealing, here's my Remicade experience. I know how you feel!

Mar 2011 started remicade loading doses at the standard 5mg/kg ratio every 8 weeks.

Nov 2011 things weren't working so we increased to 7.5mg/kg every 8 weeks.

Jan 2012 I started to experience significant improvement. We maintined 7.5mg/kg every 8 weeks.

Fast forward to today and I'm now in 100% remission and actually thinking about going back to school while working full time, that's how good I feel.

All that being said Remicade isn't perfect. Along the way my immune system has done some wonky things like now every day I have to take half a zyrtec pill otherwise I get hives and itching all over. I also developed a rash for several months that required some topical cream to resolve. I can't say for sure that Remicade was the culprit, it could have been prednisone use coupled with salicylic acid soap, but I also can't say for certain that it wasn't to blame.

Feel free to PM me any questions I'm happy to help any way that I can. If it's not working for you over the course of a few months you should talk to your doctors about increasing the dose or increasing the frequency.

 

[sickinlk]

good to hear you're doing well after just your second infusion. looks like its been a success already. it'll only get better form now on and once all the stress on your body is eased your energy levels will rise.
just make sure you are eating a well balanced diet full of fruit and veg and water and you will reap the benefits.
ju

 

[annawato]

Great to hear that the remicade is working so well for you. I love a good news story!