Hi I'm just about to go for my first treatment of Remicade and not sure what to expect? Any information you can give me would be helpful. Will I feel tired, sick or just plain old normal (what ever that means when you have AS)? I've not had an injection of Humira for over 3 weeks now and my back is starting to play up yet again, the problem in my right foot has never been pain free so hopefully the Remicade will help both sections. I've just returned from travelling overseas and while there had the worst trouble with pain. For the last 16months I've been very careful not to over do the walking, working etc as I'm with pain 24/7. Having been away for over 3 weeks and on my feet most of the time visiting friends and family it's been hell!!! Very swollen and intense pain. Thankfully I got to lay down on the plane both ways and rest my foot which helped a lot. Since returning home I've been trying to rest up and it's better but not good. I do hope that the new treatment will work as my specialist has tried everything thats possible, obtainable and even took my case overseas to see if there was anything new there, which wasn't the case. So fingers crossed.
So if anyone out there has any advice on how to cope with this treatment or things to ask I'd be very grateful.
I hope you all have a better day today than the last.
Well after waiting a week for my appointment to come through to start Remicade I get a phone call from my specialist, who wasn't so happy that my test results for blood test have been mislaid!! Therefore to speed things up yesterday I quickly (what ever that means with a painful body) went to his surgery and picked up the forms and had the blood tests for HIV, Hep A,B and TP all done yet again..... Don't get me wrong I didn't mind if it meant speeding up the process but something I could have done without. Now I have to wait to see if they ring me for an appointment this Thursday or next Thursday. I'm a little concerned about having the treatment as it is and with the waiting it's doing my head in. Meantime my body is in pain as I haven't had a humira injection for some weeks as I had to come off that before going onto Remicade. I told my specialist to try and speed up the appointment and put me out of my misery.
Sorry I'm just sounding off as I know I can here. No need to respond really just needed to express myself. lol.
Here's to a better day tomorrow.
Thanks for listening......
those kind words were much appreciated SarahObear, thank you. Feel better this morning and trying to relax and go with the flow. It's just so many things to change should I go tomorrow at short notice...mind you that doesn't mean I would go, I'll drop everything. My dear husband asked me several times during the day if I'd heard back, bless him I realised he's as uptight us I am, hence going with the flow as I don't want him to be worrying as well as me (not that I can stop that, hey he loves me)lol.
So just going about business as usual today and if I get the call great, if I don't then I'm sure it will be next week, if I don't hear by Monday I'll ring my specialist yet again as instructed. My visits and comings and goings with him have been so smooth so I suppose being under the hospital where control is not so tight is something I will have to deal with. I can't control it, so have to let it go to a degree.
I'll keep you posted.
hugs back at ya!