The story so far... ugh

[KayleighK]

So 6 weeks ago I started Infliximab was so looking forward to it. I had in my head I was going to go back to feeling well again. Well it hasn't happened. I'll give it it's due, I'm going to the toilet far less often. That's making life easier. I can now go to work and go out with my husband again. But I still feel rubbish. Sore sore pains, and now after 7 months I'm off steroids I'm back to being sick/ feeling sick. It's a pretty scary drug and It's scary being on it when I can really justify being on it i.e it's making me feel better so it's worth it. Yesterday I saw my specialist who is brilliant and he thought maybe I have a stricture. I'm being put on a liquid diet :boring: I do like my food so I'll just have to hope it tastes nice...but I've heard it doesn't ha!

So happy days just wish my body would hurry up and respond to treatment but suppose I still need to be grateful I can now leave the house!

Have a nice weekend everyone

 

[Manzyb]

well, I hope you start feeling better soon! 6 weeks isn't very long yet for Remicade to help a great deal yet. I would give it another couple infusions and see how it goes. Although, if you do have a stricture, than Remicade probably won't help that. Are they going to do any tests to see if that is what is going on?

 

[notfullyfathomed]

KaleighK, I am in the same boat! Started Remicade 8 weeks ago and waiting for it to kick in. I thought it was working initially, but then I hit 20 mg of prednisone and my energy level tanked Talked to my doctor and I can tell there's not much he can do at this point, other than wait to see if the Remicade will kick in.
:hang:
(or at least that's what I keep saying to myself!!)

 

[KayleighK]

I no 6 weeks isn't long, it's just I heard so many stories of people feeling great instantly after the first infusion! Thought that was going to be me too. He just said he wants to see me again in a months time. Took some blood and said he'll see what the results of the bloods show. I'm the same coming off pred! Have done nothing but sleep this week. My skin has all broken out on my face and have thrush. I don't know if that the infliximab or just my body going to pot since coming off the pred. Yup hanging in there is all we can do.

 

[notfullyfathomed]

Ugh, it's killer though!! I don't like it, waiting is not my strong suit. My boyfriend and I are supposed to take a trip to SE Asia in July and I just want to be well. I've been looking forward to it for a year!

I had problems with skin and thrush too -- I started the SCD and cutting out suger and most carbs has helped a lot with it. It's a side effect of the Remicade I think.