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

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

sargent
New Member


Date Joined Aug 2007
Total Posts : 9
   Posted 8/19/2007 1:27 PM (GMT -7)   
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?
***************
Sargent
RA - DX 15 yrs ago
Taking: Arava, Humera injections, vicodin and naproxen for pain - among many other meds


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/19/2007 2:26 PM (GMT -7)   
Hey there Sargent.. welcome to the Forum.. you'll find lots of good people here that are all more than willing to share their stories and experiences with you... I am on Enbrel, so I don't have any experiences with Remicade.. maybe down the road I will.. but as of right now, the Enbrel is doing great.. I'm sure someone will be along shortly that can lend their 2 cents on how the Remicade is for them.. All I know is from what some of the other members have said here.. The infusions can take anywhere between 2 and 6 hours.. You'll probably get some additional meds (ie benadryl and tylenol) through the IV to help with any side effets.. What day do you go in for the infusion?
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 8/19/2007 2:32 PM (GMT -7)   
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.
"My "Trifecta" - CD, AS & RA...

Some days you're the bug, some days you're the windshield

Co-Moderator Crohn's Forum

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


sargent
New Member


Date Joined Aug 2007
Total Posts : 9
   Posted 8/19/2007 11:37 PM (GMT 0)   
Thanks for the replies. My infusion starts on Tuesday. They said they'd give me Benadryl when I get there to counter any reactions, and to make me relax. But Benadryl does the complete opposite for me - it makes me very hyper and nervous, so I have to take something else - not sure what it is, but its waiting for me at the pharmacy.

anyway - my sister in law has RA too and has been on Remicade about a year now. She's always been one step ahead of me on meds - when I was on methotrexate, she was on Embrel, when I moved to Embrel, she was on Humera, etc., etc. She is doing fine w/ Remicade -however I know that she still gets flare ups. She's not even 30 yet - and already on such strong meds. She said she still has flare-ups, but not debilitating. I just want to get back to a place where my coworkers aren't wondering if I'm coming in from day to day. If it's not a flare-up, it's a reaction to a new med (migraine, nausea, etc.). So unlike me to be undependable - but this past year has been harder than any other w/RA... well except when I was pregnant and it was unbearable (husband had to dress me, lots of time in bed unable to walk).

I find it so funny (okay, maybe ironic is the word) that I hear on the radio / tv that this or that actor was caught "popping" vicodin. I take vicodin for pain and it does absolutely nothing for me - doesn't take the pain away, just makes me not "care" about the pain. Never really gets me feeling good so I can't see the attraction to addicts.

I guess I'll check back in on Tuesday to let you know how it goes. I'm no stranger to hospitals or blood tests, etc. - so I'm not too worried about the procedure - more about the meds and the side effects. But I know that side effects can vary from person to person. I'll just have to say my prayers really loud that morning, and then just see what happens. Thank you for the support.. its just nice to write out my feelings (lengthy feelings I know)... to someone who suffers from the same thing. i think at work they think I'm a hypochondriac....
***************
Sargent
RA - DX 15 yrs ago
Taking: Arava, Humera injections, vicodin and naproxen for pain - among many other meds


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 8/20/2007 12:18 AM (GMT -7)   
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.
Curley
.........
 


sargent
New Member


Date Joined Aug 2007
Total Posts : 9
   Posted 8/20/2007 1:18 AM (GMT -7)   
Hi Curly - I see you have a hard time sleeping too? :-)

Thanks for the great post. I am sorry that you have had such a hard time, but am glad that Humera has given you back some life - out of the wheelchair!

As for the meds - do you feel sometimes like your doctors are all out of sync w/each other? I have a RA doctor, a GERD doctor, and a cardiologist. While I tell them what I'm currently taking - I don't get the good feeling that they are taking into account what the other doctors are having me take. They just keep adding to my meds. I hate taking pills - but have added some vitamins/supplements to my routine just to see if they will help at all.

Last month my GERD doctor had me take several blood tests because I was having severe stomach pain. He found that my liver enzymes were elevated s/b 30, was 85. He panicked and had a series of other tests run on me. He said part of my trouble w/ extreme exhaustion came from my elevated liver enzymes. He took me off of my cholesterol meds, prescribed some fish oil pills & niacin, and new acid reflux med. He told me to come back in 1 month to retake the tests. If my liver enzymes were still elevated, he wants to do a liver biopsy. I don't know what that biopsy entails - but it doesn't sound like fun.

I mentioned this to my RA doctor and he said that as long as it was only 1 liver enzyme elevated, there wasn't a problem and he is not concerned at all - and moving me on to the stronger Remicade.

I'm not sure what to do about that... except to reiterate to my RA doctor that the GERD doctor is very concerned and see how he responds. My lower back has started hurting - not a RA hurt, but a different hurt. Not sure what that is... but my stomach feels better now since the GERD doctor put me on a new acid reflux med. Just confused w/ all the meds I'm taking and how they react to each other.. I wish I had gone to pharmacy school! Hang in there - thank you for the support! -- Shortie.
***************
Sargent
RA - DX 15 yrs ago
Taking: Arava, Humera injections, vicodin and naproxen for pain - among many other meds


sargent
New Member


Date Joined Aug 2007
Total Posts : 9
   Posted 8/21/2007 3:32 PM (GMT -7)   
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...
***************
Sargent
RA - DX 15 yrs ago
Taking: Arava, Humera injections, vicodin and naproxen for pain - among many other meds


Gladys Ann
New Member


Date Joined Jun 2007
Total Posts : 18
   Posted 8/22/2007 7:27 PM (GMT -7)   
Dear Sargent

I'm glad that your Remicade infusion was OK. I may start Remicade when my rheumatologist gets back from her pregnancy leave in October since my insurance will cover 90% of the cost if I can get approved. Humira doesn't seem to be doing much for me now.

Your boss may actually be feeling sympathy for you now. Most people don't realize the difference in oseoarthritis and rheumatoid. Even my own family still aggravates me because they don't know anything about RA--they think it only affects the joints.

God bless you,
Gladys Ann

sargent
New Member


Date Joined Aug 2007
Total Posts : 9
   Posted 8/23/2007 6:50 PM (GMT -7)   
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
***************
Sargent
RA - DX 15 yrs ago
Taking: Arava, Humera injections, vicodin and naproxen for pain - among many other meds


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/25/2007 8:25 AM (GMT -7)   
cool  hi Sargent!
welcome to HW!  i wish i had been able to write to you last week!  so glad the infusion went alright.
it's funny how each person differs in their experiences...i was so EXCITED i couldn't wait for my 1st remicade treatment.
like yourself, i too was on Enbrel for 2 years & then Humira for 2 years.  i started Remicade in October this year.
it's quite common as i found out from a few rheumatologists to have a "plateau" effect w/ enbrel & humira after a few years. seemed like for me...they each worked their best 4 & 5 months into therapy, but then they just stopped working after a good year.
 
i wish you the very best w/ the Remicade.  it's a great medication. 
 
you mentioned fatigue is a big issue for you.  i found that since starting remicade the fatigue levels i have haven't been so very severe.  it's sort of on a level path now.
 
the RA i have is really advanced; but i did notice very small improvements in my joints 9 months into treatment.
 
if you get flushed & a bit ill feeling you can always request the drip to be slowed down.  when my 2 nurses let the IV go for just 2 hours i had a bad infusion reaction (and this was like my 25th infusion too).  your BP can dip low & feels like your going to either puke or pass out...but slowing or stopping the drip for a few moments helps.
 
best wishes!
erin
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Kidney Stones (oh joy). Previous Lymes Disease for 10 years.
Meds: Remicade infusions 600mg Q3weeks; Intra-articular knee injections; 6MP 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD; Entocort 9mgQD; Meclizine; Augmentin; Tigan; Reglan; LidoDerm; Diazepam; Rozerem; Diclofenac; Celebrex; Dilaudid 4mg; Duragesic 25mcg/hour. 

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 11:29 AM (GMT -7)
There are a total of 2,732,614 posts in 301,037 threads.
View Active Threads


Who's Online
This forum has 151196 registered members. Please welcome our newest member, RAmiddleage55.
279 Guest(s), 12 Registered Member(s) are currently online.  Details
PDL17, Gemlin, 142, Mad Martha, bdbbauden, Faustmann, ASAdvocate, ~ chicken wings ~, Tim Tam, RAmiddleage55, Tall Allen, Kristvet86


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer