New to Forum: Starting Remicade Infusions this week... and very nervous!

Hi all - I'm new to this forum, but am looking for a little support. I have had RA for many years now. In the past year I have had more flare-ups than not, and the meds I've taken have stopped working for me. I've taken prednisone, methotrexate, embrel, and Humira - none of them work for me any more, my body is just rejecting those meds now.

My RA doctor suggested I start taking Remicade infusions. I've heard so many horror stories that it scares me - but it also scares me to remain in pain every day. I've always been a star performer at work, and pride myself on never allowing my RA pain to keep my down or affect my work. Once several years ago I even went to an out of town work conference w/ my arm in a sling and vicodin. the arm was in a severe RA flareup and the doctor had me wear a sling. Even then I still slaved away and just kept going. This year has been harder though. I'm tired, depressed, and feel like my RA is making me older quicker than I want to be. I'm 42 and some days I feel like I"m 82.

I get so tired so quickly - of course my weight hampers me too - I weigh more now that I ever have. After I started my humera injections I gained about 15 lbs, eating the same exact way I had for years. I guess its true that your body starts changing after 40.. but maybe it goes even faster when you have RA?

Anyway - I start remicade infusions this week, and was wondering of anyone out there has been on it a long time. What are some of the side effects?

Hi Sargent -- welcome to Healing Well, glad you found us, sorry you had to. I have RA & AS and can so relate to how you feel.

I've been on Remicade for over a year now. Best thing for me (I also was on Enbrel). I was petrified about my first infusion - more for the procedure than the medicine! I've been quite lucky, no side effects, although sometimes I'm a bit more tired afterwards. I don't get pre-meds, since I really don't need them. Everyone is different and will react differently. There are people here who have had reactions of some kind. I'm sure they'll be along to provide more info.

I suggest you bring something to read, some water and maybe a snack. If you have an IPod or MP3 player, bring that as well. I bring my IPod and something to read and just relax.

The key to the infusion is just relax - let them (whomever is giving you your infusion) know your concerns, make sure you tell them if you're uncomfortable in any way. They will (or should anyway) go out of their way to help. Don't forget to breathe! Good luck.

~S.

Welcome Sargent,

We are glade to have you and we will try to help in any way we can.I to have RA and I also have OA and AS as well and I deal with Crohns as well.

So I know where you are comeing from and I know what you mean about pain meds and I agree with you about not understanding about the addictions with pain meds.

There are so many people that abuse pain meds and they are looking to get high feel stoned how ever you want to say it.But for people that are on pain meds take it to help with the pain we are not taking it to feel high.So for us we take it to relieve the pain not feel high.

Sargent I know what you are talking about as fare as having to have some one help you get dressed.I know every thing started to snow ball me all at one time.

I first found out that I had Crohns and we blamed the sever joint pain on the fact that Crohns does and most offten cause joint pain.But after about seven months after being diagnosed with crohns I was starting to have problem with the joint pain being much more sever and I found that simple take like tieing my shoes or buttoning my shirt zipping my pant's was starting to take a toll on me and then I got severly depressed.It got to the point that I counldn't even hold a fork because I could not bend my finger enough to eat.

After being diagnosed with RA I also found out that I had OA and AS and it compleatly left me bed ridden and I got to the point that I could not walk and there for about a Year I was in a wheelchair.

I was also dealing with sever edems(fluid retention)so I was put on Lasix at a high does to get some of the fluid off.It was awful.I was all ready on high doese of prednisone and at first it helped with the crohns and it helped the RA as well.But after about three months I started having some major issues with my lungs.The Prednisone was causing my lungs to ack up.

So after that I was placed on severl other meds and no help.I could not be put on any kind of antiflamatory meds because that is a big no no.So I was placed on methotreaxate I took the shot.It had came to a point that I had to come of that one because I had to go on a different med for my crohns and the two meds did not mix well.

After trying severl meds we went for the Remicade and I was happy because for the first time in along time I felt that there was help.I was on the Remicade eight months and it did not help enough to warent staying on it.

The next med was Humira and I gotta tell you.I felt hope again and Humira for me was my Jake pit for me.After every other med out there this one was doing what we had hoped for.

I started tell a very big different's after about two months.Humira is what got me out of that wheel chair.I had to do about a years worth of theraphy so I could learn how to walk again.I also was noticed that I was able to hold a fork and I was able to brush my hair with out help.

The reason I am telling you this is to show you are not alone and we all react differently to meds.There is hope and you just need to find the right med combo.

I hope that you continue to post here and please telkl your sister in law she is welcome here as well.Keep us posted on how you do on the Remicade.

I had my first remicade infusion today. It went well - just a headache, and a slight headrush/nausea when they opened the iv drip full speed. I just got home... feel okay except a tired and light headed.

My next one will be in 2 weeks. We'll see how this goes...

Hi Gladys Ann -

Today i feel MUCH better - not 100%, but a little pep in my step. I'm sure its not the remicade, too soon to tell yet - but I've had an almost pain free day. It could be that since I had my infusion Tuesday, I've slept almost all night long. I think that is helping me a little bit. I usually wake up over and over again - and that can wear a person down!

I think you are right about people not knowing what RA or OA is. I am amazed at how many people are a part of this forum - its sad, but its so good to have the support too!

I hope you get the Remicade - since there is so much insurance help on that for you.

Thanks for the blessings! Sargent