Thursday, May 31, 2012

Remicade treatments?

By AudreyBee Wednesday, December 12, 2007

After being diagnosed late August of 2007, things have really been going down hill.  I'm going to a rheumatologist now, I'm on 6 (2.5mg) mtx once a week, one folic acid daily, 2 Celebrex 200 mg daily, Lyrica 75 mg once daily (for neuropathic pain in my feet and legs) in addition to all my 'regular' rx's like sythroid, nexium, detrol la, zetia, prozac, diovan hct.....I feel like a pill freak at 60 years of age.  I take more than my 82 year old mother!  My doc told me my RA seems more agressive than he thought because the mtx is obviously not stopping the inflammation so he's recommending Remicade infusions.  I'm a little scared of that, but I've told him I'd try anything to prevent the crippling my mother has.  I've heard good and bad about this drug, so any advice from ya'll will be greatly appreciated! 

 

What gets me the most (besides pain) is the unbelievable tiredness!  Just out of the blue, I have to put my head down or lie down somewhere and nap for a few minutes.  It's hard to explain - I'll be fine for a few hours, then I feel totally exhausted!  My co-worker seems to doubt me when I call in and say I don't think I'll make it in tomorrow for 8:30, I'll be in for maybe 10:00.  I take sick hours when I miss, but it's getting obvious to me and my workers things are getting harder for me.  I always keep copies of my blood tests which show the results of the inflammation so my family knows it's not my imagination, it's a real problem!

 

I guess I just needed to vent - to come somewhere where I'm understood!  Thank you all for understanding!

RA meds caused lower immune system
Anonymous
Louise
12/13/07 1:11pm
Hi Audrey, my name is Louise and you're going through the exact same process I went through when I was diagnosed 15 years ago and I'll be 49 in a few days.  For me the first symptoms were my index fingers and from there in 2 weeks I couldn't walk.  I was immediately sent to an RA doctor who told me over and over..."from here on out your life will be different".  I couldn't imagine what she meant, after all it was just in my fingers.  In no time I knew exactly what she meant.  To look at me no one knows I have RA.  When I relocated to a new state my new Doc thought I had to have been misdiagnosed because I looked too good to be an RA patient.  He took me off of all of my meds and in no time my RA came through.  Luckily we were able to get it back under control quickly.  Notice here I said "we" and not "he".  You are more responsible for your ability to live a full life more so than your doc.  Do the research and take care of yourself.  Don't worry about what anyone else is thinking, they don't live in your skin, you do and the RA is not going to go away.  "From here on out your life will be different".  I stick to a wheat free, dairy free diet,  I REST and I take my meds!  Fatique is the hardest part of this for me too.  I take one weekend day and just crash!  I have too and honestly it's kind of nice.  I'm using Humira 2x per month and celebrex 400mg a day for my RA and that's it.  RA is an aquired taste.  My case was much worse and much more aggressive than my Grandmother's but it's managable because of the tech age we're living in.  I'd jump all over the Remicade if I were you.  It will work.  For the first 2 years of living with this I couldn't wear high heeled shoes...which I loved, but I decided from day one that I wouldn't let RA have me completely and I worked as hard as my docs on my treatment of me.  Today I'm in 3 1/2" to 4" heels everyday of the week.  ACCEPT that this is your life now and be 100% in the know of what's going on with your body and how best to treat it.  Keep a journal of everything because it all tells a story.  An example--I love pasta but it's wheat and I know it will kick up my inflamation, so once in a while I'll have pasta but only on a Friday or Saturday night when I know I can rest the next day...sleep in and take it slow.  I'll do this maybe 4 times a year, but that's it.  Again, stop worrying about what anyone else is thinking, they don't live in your skin.  Put down your blood test results and start working on living with this.  In this day and age it really isn't impossible.  Oh and--find a support group.  I'd die without my support group!  Take care! 
12/13/07 3:33pm

Louise, you have no idea how much your post means to me!  I have printed it so I can read it over and over again and show it to my family and workers.  It's sooo awesome to know others are out there!  SHOES: I've worn nothing but 'Crocks' shoes since last fall when I fell and broke my foot and tore the ligaments in my ankle.  I had a cast for 6 weeks but never could go back to regular shoes for daily use.  I haven't worn heels in YEARS and I used to wear 3" heels (I was in my late 30's then).  I had two doctors tell me to wear low heels or wedges for safety sake because my ankles were weak and had both been sprained really bad.  So HOORAY  for you with the heels!!  Once again....did I say thank you for your post??  Please tell me all about the diet thing.  Is there a book?  I'm always trying to diet anyway but I always fail at it.  In 2005 I lost 27 lbs on South Beach diet but within 2 years I've gained it all back.  No wheat?  Pasta?  Please let me know where I can find this info.  And I will start a local RA support group because I'm pretty sure our little town of 9,000 doesn't have one.  Any info on that will be helpful too.  I'm shooting for a great new year and all of this info will help me get it started.  I hope to be healthier, thinner and smarter about my disease. I do inform myself (thank God for the internet) about as much as I can.  I have consulted with my doctor about hormones and my thyroid disease and we've changed my meds to help them work better because of something I read online.  So I will be informed.....I'll try really hard at that.  Thanks again and please keep in touch. 

 

AudreyB

12/18/07 6:13pm

I think you should give the Remicade a try. Does your insurance cover it? I just started on Enbrel. I currently take plaquenil 200 mg 2x a day,methotrexate 2.5 mg 8 pills once a week,folic acid 1mg daily,azulfidine 500 mg 2x a day.I also was diagnosed with cardiomyopathy which may have been caused by the ra and take coreg and altace and lasix.

 

I just take each day as it comes.

My best to you.

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By AudreyBee— Last Modified: 09/21/10, First Published: 12/12/07