Need advice

[kristen]

need advice

Hello I have been on this site for 2months..I am on pentasa now just left my gi's office and he will see me in two months to start remicade infusions..Wondering how y'all feel about the drug and it effects..Thanks so much I have got great advice through this site...KRISTEN

 

[Christie]

Hi my doctor has been asking me for 8 or 9 years to go on remicade, I always said no because of the side effects, I have now had 3 infusions and wish I had have gone on it all those years ago, it is amazing for me, I can not believe how good I feel and am also waiting to get my ileostomy reversed thanks to it x

 

[Gwen pippy]

Hey Kristen

I know you are asking about remicade infusion but how are you finding pentasa? I was on pentasa alone for 4 1/2 yrs no symptoms total remission, even managed to have two children in that time but ran into difficulties last nov around the time they changed the formulation, was the formulation changed where you are? I have been working with my GI and the drug company to see if there is a link.

Good luck with the remicade let me know how it works out, I went back on asacolon and if it doesn't work i'll be looking for next med to try.

Gwen xxx

 

[kristen]

I think pentasa is good but I still have bad days actually for about ten days I have this severe back pain if I am driving or doin anything ,for more than 30 minutes.I am lookin forward to this treatment I am almost in remission,which is AWESOME!!!

 

[Gwen pippy]

I was finding since they changed the formulation, bathroom visits were up big time, drugs company are really nice and have started to look into for me. but I had to change drug to asacolon and things have settled a little.
I found back pain can come and go with crohns but if you're worried just mention to doc.
Thats great news that you are heading for remission, its the best.
Take care x

 

[Gunny]

Going for my second remicade treatment this Thursday and already have noticed a dramatic change in bowel habits for the positive. I was very reluctant and scared to start this treatment and have been pleasantly suprised. I have had little to no side effects so far. I am still on pentasa and am weening off prednisone (down to 30mg/day). I wished I hadn't been so stubborn and not resisted remicade for so long. I would have been in much better shape right now and probably would have been in remission and not needed another resection 2 months ago.
Good luck, and let me know how you did.

 

[bruscar]

Hi Kristen,

I had three doses of remicade and the first was a miracle the second just ok and the third was useless.

As it was i had very little side effects, but my disease flared elsewhere and resulted in surgery and more surgery .

I wish you good luck and good health

 

[crazycanuck]

It scared the crap out of my mom with some of the side effects but after I started and the incredible improvement I've had on the drug quickly eliminated all worrries. I gained nearly 15 lbs in my first week (granted that was largely due to Mexico trip) and since then another 15 lbs and am now holding steady at 160 lbs which my doctor wants when I was a measly 128 before starting.