my weekly look for sympathy....:0)

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randynoguts
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Date Joined Jan 2003
Total Posts : 6049
   Posted 7/27/2008 10:57 PM (GMT -7)   
joint pains i assume from the remicade sarted friday night, next dose monday.
fever last night 102, started my prednisone pulse
 
   i have had some joint pains with the remicade years ago, but nothing like this! i mean friday night it hit in like 10 minutes , left knee and right wrist. could barely walk. had to search for old percosets.  then last night , left knee,both wrists, both elbows and both shoulders. holy pain pills batman! i could not even roll over in bed.  then the fever came on. sooo, i will get my next infusion tomorrow and ask for some more painkillers for the next joint party.  as much as it hurt, i will still do the 'cade cause it looks like its working on my buddy "F" head the fistula. yeah
 
   btw, can anyone come up with an emoticon of a steaming poop?
randynoguts 



     http://www.geocities.com/randynogutsweb/


potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 7/27/2008 11:11 PM (GMT -7)   
Randy I don't know how you do it. You are amazing through all your trials with this dreadfully horrid disease. You can still make great jokes even as you struggle with pain, fever, fistula's, surgeries, and all the rest. Take care you funny guy. You do have my sympathy for the week. I hope you are better soon.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/28/2008 2:26 AM (GMT -7)   
Oh, Randy, that sounds bad. Are you sure you should get more Rem? Why not Humira?
Co-Moderator Crohn's Forum.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/28/2008 4:00 AM (GMT -7)   
Talk about being caught between a rock and a hard spot, Randy. You've sure managed to find that spot. Maybe you oughtta get that rifle out and go hunting for Murphy and convince him how serious you are about him getting off your planet and staying off!!! (((hugs))), guy.
 
Hmmm. Maybe a emoticon of a pile of cowpuckie w/the fragrance rising off it might do???


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1205
   Posted 7/28/2008 8:12 AM (GMT -7)   
Dang that sounds terrible. Do they pre-med you before the cade? Sending you gentle hugs.
sm
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 7/28/2008 10:03 AM (GMT -7)   
(((Randy))) Sending big hugs your way. I hope you feel better soon. Blessings, Julie
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran 75mg
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 7/28/2008 10:29 AM (GMT -7)   

Oh all the pain we go through to have a few good days. My thoughts are with you. I have another cade treatment coming up in one week. Good luck!!!!! (((((HUGS)))))

Kgirlie


Kgirlie
 
27 year old female dx with CD in 2001. Pentasa 4 g/day, Prednisone 30 mg/day, Lexapro 10 mg/day, Wellbutrin 150 mg/day, Remicade, topamax, nadalol, Maxalt 10 mg as needed. Mother of son, 3, and daughter, 10 months.  


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 7/28/2008 11:59 AM (GMT -7)   
Well, I'm not an admin, so I can't make it an emoticon.. but...

VIEW IMAGE

its kind of crappy...
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/28/2008 12:12 PM (GMT -7)   
Bane too funny!

Randy, Please get your ANA tested.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 7/28/2008 4:20 PM (GMT -7)   

Randy, I am so sorry you are having a rough time...

I am back to my achy joints. I can barely walk down my own stairs.... it really sucks and I don't have fevers like you so I can't even imagine how bad you are feeling...

feel better

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and now new med Clonazepam starting 7/18/08

 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/28/2008 5:29 PM (GMT -7)   
Hi Randy Thanks for checking in was wandering how you were doing with the Rem , so the fistula is healing that's a plus we only need one hole in certain places . Hope your infusion goes well. Would hold your hand but I got mine full with redoing teens bedroom and a few other things around here .You'd be proud of this crohnnie this week either that or think I'am insane .Got my days work in and feeling good about myself ,something like cloud 9 . Stay good. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 7/28/2008 7:33 PM (GMT -7)   
Randy, You are the rockstart of Crohn's, if that is possible. So how often are you doing the remi and what dose? Have you tried Humira? I think it's better. The joint pain is still bad, but you learn to deal with it and when it hurts to bad, you pop a pill. Let us know how your feeling, you are the one person we all feel like we know! LOL!

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 7/28/2008 7:52 PM (GMT -7)   
Randy- I've done the Remicade, Percocet and now the Humira. I am convinced that the predinose caused or contributed to my Osteoarthritis, Osteopourous and Fibromyalgia. Considering the pain from the latter three, the ONLY pain reliever that has helped the joint pain was Ultracet (Tramadol). It was prescribed by my rheumy. He told me it is WAY better at addressing the joint pain vs. the Percocet...BOY WAS HE RIGHT! And as an added bonus, I don't feel stoned all the time! I am however dreading my next colonoscopy because I will not be able to take it 10 days prior to the procedure....this will be murder for me because I CAN NOT MOVE without it! Do you have a Rheumy? Pleaseeeee....go see one if you don't! They are better equiped to address your situation than a GP, GI or Ortho. The Tramadol also helps me with the ENDLESS fevers too!
Hope your on the track to healing your "F" buddy!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Glucosamine, Multi-Vitamin, Ultracet Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, peri-menopausal.


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 7/28/2008 9:39 PM (GMT -7)   
Dude,,,sounds like your in the hands of a dilemma. Between a rock and a hard place. Like there is nothing between you and blazes but a barbed wire fence ,,,and its down...All I can do is hope you get some relief soon. Remicade helps my joint pain , maybe it will turn the tide for you too.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 7/29/2008 4:08 AM (GMT -7)   
My goodness I am so sorry....my thoughts are with you!! I hope you're given something good to stop this pain. Get better soon..
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking prednisone and asacol.
Surgery for ectopic pregnancy in July of 2008.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 7/29/2008 7:51 AM (GMT -7)   
Randy, I dont' have the fevers, but the joint pains I can relate to.  I can't roll over in bed and they wake me up every 1/2 hour cause my hips and knees are killing.  Pain pills dont touch it.  I never thought it would work, but acupuncture helps.  Not 100% or anything, but I do get a good 70% relief as long as I keep it up with weekly visists.  I found a clinic where it only costs me $15 a visit so it isn't too bad cause my insurance won't cover it.  It might be worth a shot! 

Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 7/30/2008 1:23 AM (GMT -7)   
  a calming blue hue to my post may help my mood.. 
 
  went for the infusion, joint pain was all gone. no problem..got all hooked up sittin' there reading. about and hour into it i got the shakes, told my nurse, hey i am getting the shakes . so she came over and stopped the pump, shakes got worse, called the GI down fever went up from 97 to 101 in 20 minutes. got the benedryl and some tylenol.  shakes stopped after about 1/2 and hour. fever was down by 2.5 hours... its now the next day tuesday, and all is well.
 
   any way, my dr is going to talk to a guy up at the UW, to see what they think abou continuing the remicade. i want too cause it seems to be working on the fistula.  and i think the shakes and fever spike was one of my usual fever incidents. thats how they act. and i had no other symtoms of reaction.
 
    we may just to be safe do the pre-med system and slow down to 3 hours on the pump. i think that should work.  i really want this to work, so i dont get to cut my butt.
 
    i thank you all for all the suggestions and support.  i means alot  .   oh and as a side note i am down to 195..  i gotta dig out my medium clothes box soon, i think some of my favorite t-shirts are in that box! tongue
 
    you know my scar on my abdomen that has been so wide, well its kinda getting "unstretched" as it seems. maybe i should look into getting it sewn together?  or i can have a bellybutton made!   or have a folding picture drawn on like the old mad magazine back covers!
 
 
   thanks everyone for caring, back at ya!!! cool
randynoguts 



     http://www.geocities.com/randynogutsweb/


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 7/30/2008 5:33 AM (GMT -7)   
Hey Randy. When I get remicade I get a pre med shot plus they give me an extra bag of saline as an extra dilution. They also slow the drip down so its very slow. Makes me stay longer but what the hey, I sleep some. All this because I had some numbness in my lips about 30 minutes after one infusion. Well better safe than sorry. Hope they find a way to get you feeling better. Maybe you just have an aversion for mouse juice. Next time eat some cheese before you go...Low fat of course, so you can wear that favorite T.....
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 7/30/2008 9:13 AM (GMT -7)   
Ah Randy, I'll be prayin for ya! I'm glad you are feeling a little better. Congrats on bein down to 195! Keep us updated on your Remicade status!
turboemma.blogspot.com/


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 7/30/2008 9:20 AM (GMT -7)   
hey i dont know if you've tried this but i was on remicade for 3 1/2 years and i always took the tylenol and benedryl 1/2 hour before the infusion started and it tended to prevent those side effects and usually put me to sleep too which makes the process a little more tolerable. hope all keeps going well.
18 year old female- diagnosed with severe crohn's in December of 2004, only one mild remission since being diagnosed
have been treated with prednisone, 6mp, and remicade. now trying humira


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 7/30/2008 8:27 PM (GMT -7)   
to all, yes i had many infusions about 10 years ago. i was always pre-medicated at my old place. this one just has not done it routinely since they have had so few incidents. but thats the plan for the next dose.. pre-meds and slow it down. no problem it think...
randynoguts 



     http://www.geocities.com/randynogutsweb/


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 7/30/2008 9:29 PM (GMT -7)   
Yeah Sniper...I forgot about the extra bag of saline...they did that to me too and had to slow the drip wayyyy down as well. One time they didn't start the Rem soon enough and it ran into an after 5:00 situation. The nurse on duty was the wicked one and decided she wanted to get out of there. Well she sped up the drip the last half hour and I broke out in major hives. Had to do the benedryl injection and drive home. Needless to say my GI heard about it on my next visit. Anyhow, Randy....ask about the extra saline too.
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Glucosamine, Multi-Vitamin, Ultracet Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, peri-menopausal.


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 7/30/2008 10:36 PM (GMT -7)   
Yes broomhilda, that extra bag of saline is the reason for the hooks on the wall in the restroom..
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


humboldtmom
Regular Member


Date Joined Jun 2003
Total Posts : 280
   Posted 7/30/2008 11:19 PM (GMT -7)   
Gosh Randy, always doing it the hard way! Hope the premeds and slow drip do the trick.

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 7/31/2008 2:44 AM (GMT -7)   
well sonofawitch! here i thought that crap was working, fistula kinda dried up the last 2 weeks. well gee no f in wonder! it was piling up inside somewhere!!! frickin crap just broke through again like a gusher. i mean really can a guy catch a freakin break. im so pissed off i cant see straight. i see the end of my rope and there aint no knot to hold onto... sorry for the language but its how i feel tonight.. the end
randynoguts 



     http://www.geocities.com/randynogutsweb/

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