Fatigue when remicade wears off

[Phillyrose]

Hi! I am new to the forum but was diagnosed October of last year. I have since had a seton placed and am currently on Remicade (10 m per kg /6 week intervals). I notice that by week 4 I start to really feel BEAT. Either I get an abscess, infection, or simply more pain, all in addition extreme fatigue. And, honestly,I wish I could get rid of the fatigue more than anything. It often feels like a chore to take a shower or brush my teeth! (ugh!) Anyways, I am in law school and just trying to fight through my readings! I enjoy them and wish I could just muster enough energy to do it all! Any advice?

Btw- my last infusion I just increased from 5 to 10. I feel better but still hit a wall in the middle of week 4-5. Think I should reduce from 6 wks to every 4 wks?

AND- I have the disease in my terminal ileum and most distal part of my anal canal. Surgery is looking like a more promising alternative, daily, but I REALLY would like to push it off another year or so for personal happiness reasons!

Thanks!

 

[Clash]

My son just dropped from 8 weeks to six weeks and upped his dose. That didn't quite get him to the next infusion as he started having the extreme fatigue, low grade fevers, mouth ulcers and joint pain. In stead if dropping to 4 weeks his gi added methotrexate but his GI said he did have a couple of patients on 4 week intervals so I guess it would be an option. Hope you find some relief soon.

 

[Phillyrose]

Thanks! I have my next infusion next friday and will ask my gi fellow about the option! Did your son have any adverse side effects with the added methotrexate?

 

[Clash]

No, he hasn't had any yet but we just added the methotrexate two weeks ago, so every Friday he takes his methotrexate. Also talk to your GI about supplementing with folic acid as it can help with the side effects of methotrexate. Not sure if that is why my son hasn't had any but I have my fingers crossed it remains this way! Good luck at your appointment and I hope you and your GI come up with a plan to give you some relief!

 

[klwbaylorfan]

I think 6 weeks is the minimum. Believe me, sometimes I wish I could go in early, but it's not possible. I'm due for an infusion on Wednesday and I know it's only 3 days away, but it feels like a lifetime when you are so achy and worn out! I actually look forward to my Remicade infusions, I don't even mind the I.V. because I know I'm going to feel great in a few hours. I also get pre-meds...Solumedrol and I.V. Benedryl which knocks me out. Anyway, I know his you feel!

 

[tots]

I just went from 5 mg to 7.5. I am on my last week if prednisone- it was a four week course. This was infusion #5. I thought I was finally turning the corner..... not so much
though. I really need to figure out what to do at this point.

Lauren