Here's hoping the 3rd biologic works..Remicade here I come

Hello everyone,

So it looks like I am onto my 3rd biologic--tried Humira last year, then Cimzia as my insurance wouldn't cover Remicade and my recent symptoms necessitated either another increase in my Cimzia dose or Remicade and my insurance wouldn;t cover the upped Cimzia dose, so it looks like I am headed toward Remicade.

The last year and a half have been bad, the last six months the worst, with a hospitalization and couple rounds of prednisone. I am told I have a weird case in that my main symptoms just this year have been severe mouth ulcers, sinus inflammation, and skin issues such as large painful pimples all over my body as well as erythema nodosum on my legs.

I have been doing the Paleo diet for over two monhths, the goal being to reduce intestinal permeability, but my symptoms(mainly the mouth sores, absolutely brutal, haven't been able to eat any solid foods for about two weeks) just aren't going away.

Any advice about Remicade? I have heard the infusions take awhile and that they usually give you Benadryl or something, right?

I am actually kind of excited to get this started as I would LOVE to get into a real remission, one that lasts more than a month.

They don't always pre-treat. My infusion center offers Claritin or Benedryl tabs if you want them; your dr has to order IV Benedryl or steroids. If you take the Benedryl, it will probably wipe you out. Otherwise, you may just feel a bit tired. Clear your schedule for the rest of the day so you can rest. If you can, get someone to pick you up.

They say the infusion can take up to 4 hours but I have always finished in 2 hours. Bring something to do. Before my dr started ordering IV Benedryl, I managed to get a lot of studying done but now I just watch Netflix on my computer (headphones are recommended). Depending on how nice the infusion place is, you might have your own TV but it is good to have a back-up plan. They will probably provide you with water or juice but bring a snack in case you get hungry.

I hope it works for you!

Thanks for the feedback and support everyone! The Benadryl thing is interesting, I don't know yet how that is handled where I will be going, but being out of it for a day does kind of suck..I will keep you all updated!

I was on Remicade for about 5 years and then got off. Here's my story if you want to read it....http://simplisticwholistic.com/blog/2012/06/my-gaps-gut-healing-journey

Best of luck!

I hope this helps you! I've been on Remi since last September and I am in a really great remission :)

I have the pre-treatment of Benedryl and Solumedrol (steroid) before each infusion. My doc tried having me do them without the pre-treat but I had a reaction after my 3rd infusion (hands swelled into horrible painful claws and elbow became swollen). Since the pre-treat, my reactions are almost nil now. The only thing that I get after each infusion now is a slight headache, stomach "pings" (but minor), slight nausea and muscle cramps (especially my thighs). But these only last for one day.

A very belated thank you for all the support. Between our power being out for a couple days, the holiday and then going out of town for the weekend, I wasn't able to reply to any of you.

I talked to my Dr the other day and since I am doing better, mostly the mouth sores calming down, he tried to talk me out of Remicade and wanted to just wait and see with the Cimzia. Well, I just about lost it. I am tired of waiting and seeing with a drug that in the last 6 months has allowed me to have three bouts of severe mouth/throat ulcers, sinus inflammation, skin issues, two rounds of prednisone and one hospital stay. To me, that's not remission and I want remission so badly I can taste it!

I will continue to stay gluten free and get back to being dairy free and let all of you know how my first infusion goes, which will probably be in a couple weeks.

Ronnielee,

I am very much hoping to have the success you have had so far with Remicade!! Thank you!