D started back- is it the taper or the flare?

[suschex]

I started feeling poorly about 10 days ago when I got down to 10mg but no D just gradually felt worse each day...fatigue, headaches, lost appetite, nausea, general sense of feeling ill almost like the flu. Anyway, now I am down to 5mg, feeling terrible like I did when this all started and now today the D started back...no blood.

This is my first taper off pred...I know the pred. didn't get me to remission and that the Humira hasn't helped yet (6 shots so far) but should I be concerned...do I need to go back up on the pred. until the Humira works? I called by GI but he is out of the office until Jan. 17th and they said I would hear back Monday from someone. The worst part is how terribly bad I feel...at least on the pred. I felt better than this as crazy as that sounds.

Just looking for thoughts, ideas and opinions until I can talk to a doctor on Monday...

 

[tiloah]

Sometimes tapering off of the Pred just makes you feel crappy. I wouldn't worry too much until you talk to someone on Monday. Hopefully they will have more definitive answers. I also wouldn't make any changes until you talk to someone.

 

[lizzy16]

Hi Suschex,

I think that you and I were diagnosed around the same time and I have also felt crappy tapering off the pred - I feel ok on 20mg (Still going to the toilet 6-8 times a day but no nausea or blood), but as soon as I get to 15mg I feel horrible. I took myself to hospital last week because the pain was so bad and I vomited up blood as well as my dinner - scary! I was sent home with painkillers and told to go back up to 20mg, my IBD nurse told me to also double my Asacol (Mesalazine) to try and bring about some relief. I have to check in with her next week to see how I'm feeling.

I also thought that I would be seeing more improvement than this after 2 months, sometimes I feel like I'm at square one! After increasing my meds I am feeling a little better, alternating between gassy D and more solid movements (which are frankly quite painful because my inflammation is in the rectum), but every few days I have a really bad one. I think when I'm slightly dehydrated I can definitely notice an increase in pain so I really need to keep drinking heaps of water.

Sorry I can't offer much advice to you but I know what you're going through! It is so frustrating, and I know how bad the side effects of Pred are... but coming off it is worse! Hope you feel better soon! xo

 

[suschex]

We were....I was dx'd on Oct 10. It is frustrating to not be better yet isn't it?!?!? I am down to 5mg of Pred and will be off of it on Thursday. It never really did anything to help my CD...just gave me a lot of energy and unwanted side effects. I started Humira a month ago but so far not seeing a difference yet.

I hope you see more improvement soon!!!

 

[Johnnysmom]

My son was diagnosed Oct. 10 as well and is down to 5mg of Pred too. He had D today, just once but is usually constipated. I know that the Dr. said Pred can cause constipation so I am hoping it is just the lack of Pred that is causing the D and he will adjust soon. He has definitely felt worse since he has been tapering. I don't think that is unusual though. I am wondering how you know if you need to get back on the Pred? Is it just having blood or pain or D? I keep reporting to my G.I. what is happening but this waiting game is awful. Hope you are better soon. Hang in there.

 

[suschex]

After 3 or 4 days off of all Pred., I felt like I couldn't even get up much less function at all as a Mom of two young kids. I was having increased gas/bloating, sensitivity to food as well as increased abdominal pain...all of this had subsided prior to tapering. I am still not sure if this was my body reacting to the taper or just that the flare hasn't been put into remission...not sure what that really is either!

My GI is out of town until Jan 17th and there isn't a GI on call for him. I decided with my GP to go back to 20mg (half of the 40mg i had been on for so long) until I can see my GI again. It has been enough to function to some degree but I don't feel great.

I hope your sons GI helps him out as soon as he can move past the waiting game...it is really tough!