Remicade with out presindone

[Soohie]

I am on 20 mg of presidone. Next week I taper to 10 for 10.days
What is being just on remicade and 100 mg azathrpine I anxious to go off presindone

Is anyone out there in same boat?
I had my remicade treatment in 4 weeks then I go to every 8 weeks
I was diagnosed in July 2015
:sign0085:
TIA

 

[Asher]

I went off prednisone right around the time I started Remicade too. I also was taking asacol. I know it was scary for me because I tHought prednisone was what saved me after my Dx. I started Remicade a few months after I was Dx.

I' was diagnosed almost a year ago, ive been on Remicade for about 9 months and have pretty minimal symptoms.

I hope it works for you! As easy as it is to say and hard to do, try not to be too anxious!

 

[Soohie]

Thank you for the reply I am working on just being happy and thankful for the good days not trying to worry or stress about future or what has not happened yet!
I biked on my trainer today and did arms work out good energy today

 

[Gail Jothen]

I have had 4 Remicade treatments and also am on Budesonide, a steroid, but am supposed to be weaning off the steroid. I had 10 good days after my last Remicade treatment but the past week and especially today am miserable with gut pain and of course I don't want to eat. When I don't eat I feel worse and can't sleep...catch 22. I am also depressed of course and have no energy. I don't know why I am telling you this as I don't want to discourage you but I guess I need to tell someone who can relate to my feeling awful...thanks

 

[Soohie]

Thank for sharing Gail
This is a great place because people do know what you going through! I hope you feel better soon

 

[Gail Jothen]

thanks.. Me too!

 

[Gail Jothen]

had a good week visiting people in the Midwest, but am now home and in pain and very fatigued. My dr. reported to me that I have developed antibodies to Remicade so must switch to something else, entyvio, but my insurance has to approve it first. So I wait in pain. I am very discouraged and depressed today, I hope tomorrow will be a new day and new attitude. Has anyone been on entyvio?

 

[shamrock15]

I was on pred for the first couple weeks of remicade and then tapered off it. I do believe that it is a fairly common approach.

 

[FrozenGirl]

I would recommend you check out thE Entyvio group/ thread. Many people on it and sharing experiences.

 

[Bunty]

I'm currently on 40mg pred and due to see my GI next Friday when I'm very hopeful he'll put me on infliximab/remicade so if I can start tapering down I'll be on both drugs for a further eight weeks.
I am very anxious to come off the pred because it's caused me no end of problems, the latest being diabetes, and am hopeful that infliximab will do the trick for me without pred.
Bunty x

 

[Gail Jothen]

Thanks Frozen Girl. I did not know that. I will go there.

And Bunty, good luck on Remicade. I know it has helped a lot of people...just my luck I developed antibodies to it! I was never on pred but am on Budesonide, which is a milder steroid which is digested in the intestine, but of course it is not helping much any more. Last week I was pain free (but very tired) but this week have daily pain which is really hard to deal with. Hopefully Entyvio will help.

 

[Bunty]

Gail, it's all such a minefield isn't it? I do hope entyvio helps you.
I see you're in the over 50s group...I'm 63 so quite a bit over 50 and finding it all a bit daunting
Bunty x

 

[Gail Jothen]

thanks Bunty. I'm 70 years old. I am retired and am quite disappointed I am spending my retirement in pain. I need to pray more!