Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group First Remicade Infusion

I have been on Biologics for many years. Started with Enbrel. For me it was the best for the AS. Unfortunately it did nothing for my Colitis. Switched to Remicade. Not quite as good for the AS as Enbrel but still better then anything else previously by a long shot. It seems to be doing wonders for the UC so I'm happy.
Good luck

One thing I forgot to mention. I never noticed this with Enbrel or other drugs but it seems to me to be really important to get good sleep while on remicade. I've noticed the last few months I have not been sleeping well and been feeling it. When I go through phases like that if I spend a week geeting long hours of sleep (even if it is a bit broken) I feel better. BTW I had noticed it before the last few months.

Thanks to everyone for your advice. unfortunately I now have an infection so had to miss my 2nd infusion this week. So im on antibiotics anx a plethora of nasal wrinses and sprays. Also had my first flare up of plantar faciitis in a while yesterday so have been hobbling around all dat at work. But on a positive note when the foot started hurting the SIJ stopped. And i would prefer a sore foot ti a sore SIJ any day! The unpredictability of my symptoms never ceases to amaze me. Hope to have some positive news to report once Im back on the Remicade.

Bummer on the infection. And the PF flare. Mine hurts nearly all the time and I'm hoping the Remicade can help it. It's miserable trying to figure out how to walk without the feet touching the ground too hard. (still trying).

I've got a sinus infection now, but it's between infusions....next one is 12/22. Hope to be well by then. Also doing the saline rinses twice a day or more.

Hope you get well soon, so you don't have to delay very much.

Hey Rumble,

Hope the infection clears up. Don't you hate those sinus rinses - so painful.

As far as the PF goes, I bought some gel pads from the pharmacy for my heels which I thnink might have helped a bit (that or the extra anti-inflammatory I took this morning!)

How long have you been on the Remicade? Is it helping. I have heard that it is more useful for spine/SIJ than peripheral joints so maybe that's why the PF is still playing up

Anyway, I'm off to squirt some saline up my nose

Bummer about the infection.

I was told that if you are lucky, Remicade may kick in by the second week.

It started to help me around week 6, so I was average

Hang in there! A real shame you've had to miss your next shot as it needs to soak in to start working.

All the best,

James

Thanks James,

I am now getting a cough so fngers crossed the infection is not spreading! I have never been so paranoid about germs in all my life. Working in a hospital doesn't help.

Cheers!

A cough is not good.

I asked my rheumy about that on last visit, he said it should help every part of inflammation-spine and peripheral. I'll wait and see. 4th infusion coming on 22nd. And I just got refill of antibiotics for another week, finishing on 12/9. It's going to be close. Maybe it's just that I've been fighting this infection that I don't feel better, but I don't think so. Going to call rheumy's office next week and petition for a dose increase.

Hope the heel pads help-I didn't get much help from them. You are a nurse, right? I am in the lab, so can spend a bit of time standing on the anti-fatigue mats, but we don't have too many of them. I got the cushy inserts from the New Balance store...every part of my foot gets cushion that way. PF really really sucks. I don't know how bad I'd be doing now if I hadn't had the release surgery done on both feet, long before other symptoms of AS started mounting.

The saline rinses don't really hurt me (as long as the water is the right temp...too cool or too hot hurts). I'll blow my nose to start, then do the rinses. I know when the congestion is bad because water goes out the other nostril, but also through the mouth. When it's clear, I don't get the water coming through my mouth. Got the green stuff out again today, so dr is refilling the biaxin for another week. And I didn't have to make an office visit! If I'm not better in another week, I'll have to go in, though.

Makes me wonder if I'm just not going to be able to get good treatments in the winter. Last winter I got sick and missed 3 months of MTX. I was in bad shape at that point. Then everything was fine. Now it seems to be starting again. I'm washing my hands all the time at work and staying out of crowds the best I can. I'm not exposed to patients, only while walking around the hospital (only for a trip to the cafeteria for dinner). Grrrr.

Hey Triathlete,

Sorry to hear of your woes...

Have you tried these for your PF?

http://www.schollorthaheel.com.au/orthotic-solutions/orthotics/gel-heel-device-orthotic

They are the best I have found for folks with PF as well as heel spurs - they seem to be the only ones on the market that include hindfoot pronation correction as well as the gel cushioning...

Oh, BTW - you can get 'em here:

http://www.schollorthaheel.com.au/wp-content/uploads/2009/11/ACT_Orthotics.pdf

Hope your URTI goes soon and that you can start back on the Remi,

PS: I HATE THIS DISEASE!!!