Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications First Remicade infusion this morning

Had my first infusion this morning. I don't think I've ever been in a doctors office for so long in my life. Was at my rheumy's office for 4 hours. The infusion itself took about 3 hours. So far I haven't had any bad reaction or anything from it and I'm just kinda crossing my fingers that everything goes well.

That said, I'm still kinda worried about going on a biologic. Defintely don't feel great about starting such a serious med with such potentially bad side effects. Considering the pain I've been dealing with though, I don't think I could have resisted starting a biologic for much longer.

I'd been doing the NSD for about 5 months, and really my symptoms have just gotten worse and worse ever since I started it. I'll stay on the diet for a bit longer because while the diet might not have helped my pain, I'm definitely healthier for it. I am greatly looking forward to the day I can eat a pizza again though.

I hope you find relief with remicade. I just had my 5th infusion this morning. Don't get discouraged if you don't have immediate relief as my rheumy told me it can take up to five before full effects. I was just switch over to a 6 wk schedule as the meds were working for me but not lasting long enough. I can tell you though it has been life changing in combination with my diclofenac. I too was worried about all the dangerous side effects and still am but I have not been sick since starting this in April. Just make sure you go for your routine blood work it is very important. I wish you luck and I do hope this works for you

Thanks Nat!

Ya right now I don't feel great, but I'm just hoping for the best. It would be really nice if I was well enough to do something with my Fiance over the holiday other than stay home. So I'm really hoping this drug lives up to the hype.

My first treatment made me pretty sick and then the following week I got some relief. Now after my infusions I get super tired for 2-3 days sometimes headaches and mild nausea but nothing sleep doesn't cure. Don't get discouraged it can take a bit I'm still waiting for a full 6 weeks of relief. Hope this works for you. Are you also taking anti inflamatories I find in combination it works better

Hang in there Mike. It might not help so much with the pain so I hope you have some pain med's. It was designed to slow the progression. As one who is on a rampant progression, I am thankful that you all now have the opportunity to have biologics whereas, I had nothing like that when I was your age to take. Now at 54, it is a beast. Give it a go. It is a medication to take seriously but if you have done a lot of research on A.S. it is a disease to take very seriously. You keep us updated and rant if you need to. That is what we are here for. This is not a disease, nor are many to suffer alone with.

There are a lot of things to have in your toolbox for flares, for chronic pain and lot's of other things to help with relief. When the NSAIDs and the over the counter med's don't help much anymore, then there are now pain clinics to help. They start you at very low doses at first but you want some quality of life so stay on the diet if you can. If it is not helping, it certainly isn't hurting you. I wish you the best Mike and I hope we are all helping you maneuver somewhat on how to work with this disease.

You know, I'm jelous of those people who have flares. I can't identify a "flare" because my pain never goes away.

The first few days after the infusion I thought I was doing a little better. Some of the hip pain seemed to dull and go away. The upper back pain on the other hand... Well, I woke up this morning and my neck was incredibly stiff. My whole upper spine feels like its on fire now.

I have a 6 day medrol dosepak that a doctor prescribed me a while back and I'd really like to know if it's safe to take it, but my Rheumatologist's office isn't open today. So I won't be able to get a hold of my rheumy until at least monday. I am taking nsaids, but they only help so much.

Call your pharmacist they will tell you if it's safe and in my experiences they know far more then doctors about meds and have contacted mine to switch to something else lol. Good luck with everything

I just wanted to update this thread. It's almost been a month since my first infusion and I gotta say I think my back and body in general is finally starting to feel a bit better. (I hate saying things like that cause we all know tomorrow I'm probably gonna feel like crap...) Anyway, my back still hurts quite a bit, but the morning stiffness is definitely a bit lessened and the peripheral pain is a bit better as well.

My hips had been feeling great up until about a week ago and then they started hurting again, they're feeling pretty good right now though. The only real bad thing thats happened so far, about a week and a half ago I started developing some sores in my mouth. Those sores spread all over my gingiva and got really painful. Luckily I think they're starting to get better.

Anyway, so far things are mostely going in the right direction. I'm trying not to get to optimistic because knowing this disease, setbacks are always right around the corner. I'm really hoping 2013 is alot better than 2012 though.

Not to bum you out, but I felt like after the 3rd infusion that I had 4 good weeks, then it crapped out again. So I was excited for the 4th infusion to really be doing well. It must have been a fluke because it never happened again. After the 6th infusion, we gave up. Enbrel sort of helped, but not enough for my taste. Now on Simponi and it's doing pretty good. I'd like better, but don't think it would help to try something else. One shot a month is much better than two shots a week! I'm staying with this till there is a good reason to stop. Hope you have another good time with the 3rd infusion. Yea!!!!!

Thanks for the info rumble. Ya my next infusion is this monday and I definitely feel like the remicade is starting to wear off. My neck is very stiff and my back is really hurting. I actually had to start prednisone a couple days ago because the pain and stiffness was getting so bad. I'm really hoping this next infusion works some sort of miracle, but I am getting sort of pessimistic.