Second Remicade Infusion

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Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 6/20/2009 9:41 AM (GMT -6)   
Hi all:
Well I had my second dose of Remicade yesterday.  At first I felt ok when I got home, Nikita and I went to the Credit Union and then to Walmart to pick up a couple of things .  I rode on the put put car and managed to get what I needed.  Once I got home this overwhelming feeling of tirdness came over me and I felt like I was gonna be sick.  So I took some Zofran and laid down, well that was it I was down for the count I slept for 4 hrs before waking up and I once again feel totally wiped out.  Plus this time I'm having chest pain and some pain in my joints too.  I'm not sure if this is a good idea or not.
This is not what I need to be happening with my life.  As most of you know I struggle on a daily basis anyway with everything that I have.  My 16 year old daughter is going off the deep end and something is up with my hubby.  I don't need or want this additional stress.  I know a lot of you have been having a tough time and I've not been there a lot and I'm deeply sorry for that.  It's like my life has taken a huge turn for the worse, I know lots of folks say I won't be given more than I can handle but #@(% it feels like more than I can handle.  I'm just grumbling and I'm sorry I just have NO ONE sad sad that I can talk to except you all.  People just don't get it, you know what I mean?  Well enough of this pity party and I want to say I love you all and thanks yet again for being there for me.  I want to wish the DAD's here a happy Father's Day.  I hope that we all have a great pain free weekend and please know I love you all, YOU ALL, are my life line tongue tongue tongue tongue tongue   w/o you I think I'd be alone in this world of trouble and suffering.  Thanks for reading and listening and may you all feel physically and emotionally better.
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 6/20/2009 10:04 AM (GMT -6)   
(((((((Hugs))))))))))). You will be in my thoughts and prayers.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; pregablin 75 mg

Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 6/20/2009 11:53 AM (GMT -6)   
Hey Barb! I wish you the best and hope you will be able to better tolerate the Remicade ASAP! thinking and praying for you and Nikita. Sending some hugs!!!



21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...


Forum Moderator

Date Joined Jun 2006
Total Posts : 1534
   Posted 6/20/2009 12:43 PM (GMT -6)   
Hi Barb. You're such a dear. I'm flaring now and feel pretty bad too. Right now I don't want words like I can handle this either. Can I join ur pity party? Besides intense pain and fatigue, I'm having tremmors and awful jerking movements. (Typing's a bear) but I'm fortunate that Tim is still such a good caregiver and my daughter Tory helps also. I sure hope u have a good weekend and I love you too. Donna

Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, IBS, stage 1 kidney disease  Rx: Cellcept, plaquenil, prednisone, celebrex, lisionpril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, xanax, ambien, neurontin, tylenol arthritis, flexeril, nasonex, phenegren, vitamins, Acupuncture.  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 

Veteran Member

Date Joined Jun 2008
Total Posts : 669
   Posted 6/20/2009 1:14 PM (GMT -6)   
 ((((Barb))) So sorry your heart and shoulders are bearing such a heavy load.  I hope the side effects back off and you can get some rest.  My daughter and I have a saying when trying to encourage one another when life isn't cooperating. "Well, you never know what good thing is waiting just around the corner unless you keep going".   Corny, I know - but it's our code for "hang in there".  Blessings to you and your daughter.
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn

Forum Moderator

Date Joined May 2005
Total Posts : 6947
   Posted 6/20/2009 2:56 PM (GMT -6)   
My thoughts and prayers are always with you. And Bill & Nikita as well,

Call anytime if you need to cold/flu/whatever is over now so I can talk on the phone without drowning you in coughing!

Many comforting, encouraging hugs.
Lynnwood, Co-Moderator: Lupus Forum
Life is far too important to be taken seriously. - Oscar Wilde, 1882

Regular Member

Date Joined Feb 2009
Total Posts : 108
   Posted 6/20/2009 9:43 PM (GMT -6)   

you and your family are always in my thoughts and prayers . . . i know it feels like more than you can handle right now - please remember that we are all here for you, all pulling for you, all praying for you . . .

There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
-Albert Einstein

Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy

Regular Member

Date Joined Mar 2009
Total Posts : 31
   Posted 6/21/2009 11:21 AM (GMT -6)   
Hi Barb
I just wanted to say that I was exhausted a day or so after my first couple of Remicade infusions, too. I also had bad nausea with my second Remicade only. I hope you can tolerate it better next time.

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 6/21/2009 1:44 PM (GMT -6)   
I just wanted to say how sorry I am that you are feeling so bad and overwhelmed! You and your family are in my thoughts and prayers. God love and keep you. Judy

Regular Member

Date Joined Jun 2009
Total Posts : 90
   Posted 7/7/2009 8:38 PM (GMT -6)   
Hey Barb,
Hope you are feeling better now.  I will be having my second Remi infusion this Thurs. 7/9/09.  With the first I remember that I too was very tired, just down for the count and had nasaua the next day, joint pain and almost chest pains (very mild).  I just try to lighten my load for the following day or two.  I too have much stress, with the family and huband.  Keeping the teenagers busy (in a good way...during the summer) and with my husband fighting his own alcoholic disease.  A good man, that just needs to realize that his anxiety needs to be treated with medications from a physician and some therapy and of course the AA support.  He went back to the MD today, refilled meds and hopefully will continue to work his program.  What a mess...didn't think my life would be filled with all of this.  So enough of my pity-party....seems like we all have something.  The remi has helped with much improvement, and hopefully will continue.  Hang in there.  I am grateful that this forum is here for us...people who really understand how frustrating this disease is.
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