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erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/13/2006 2:37 AM (GMT -7)   
sad  man!  when does it stop?  so i had the Remicade infusion yesterday, it was my 4th .  i walked outof the hospital & that was a miracle because i could barely lift my feet off of the ground that morning. 
the throbbing pain is absent from the joints right now...but i'm still awake @ 4:30am AGAIN with severe leg pain.  ankles &  knees. just a deep, burning, hot, crushing pain.  it's awful.
useless Restaril doesn't work!  the sleep pill? took the thing at 10pm hoping i could sleep through this...NO! mad
took my limit of dilaudid & tylenol already. having a very sad feeling that i may need to go to the hospital for treatment for the joint pain.  but i really hope my PCP can pull through for me & perhaps increase the dilaudid to 6mg 2 or 3 times a day or add percocet or something else during this bad time.
i can't take any more prednisone!!!!!!  can't can't can't!  need  break for a few weeks.  when i was on it i didn't need as much pain meds, sometimes none at all. but i was breaking down emotionally and aesthetically from the prednisone & it was really making me miserable (plus no sleep while on it too!)
well anyway...thank you for listening. even my cats ran away from me tonite! they wanna sleep! lol.
hoping tomorrow i'll get some help.
erin
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions Q3 weeks; Intra-articular knee injections; Imuran; Mesalamine; Prednisone tapering from 120mg; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 12/13/2006 3:45 AM (GMT -7)   
hi erin
sorry u r in pain again. did u tried tramadol? is strong med for pain
maybe u have to change your  these meds that  is not working for u. change this remicade or find a combo that suits for your joint pain. something is wrong in your treatment,cos is not normal to suffer for so long time without proper meds for. go to hospital and ask them to find a right meds for your joint pain. can imagine such a hell, the sleep is so important . i know prednisone cause insomnia u cant live without sleep and being in pain always.goooooooooo baby to hospital to get free off these horrible pain. are u awake again in the night? here is 12.38 afternoon.
i understand u cos i get through the same i know how u feel !
good luck and take care !
erin.K said...
sad  man!  when does it stop?  so i had the Remicade infusion yesterday, it was my 4th .  i walked outof the hospital & that was a miracle because i could barely lift my feet off of the ground that morning. 
the throbbing pain is absent from the joints right now...but i'm still awake @ 4:30am AGAIN with severe leg pain.  ankles &  knees. just a deep, burning, hot, crushing pain.  it's awful.
useless Restaril doesn't work!  the sleep pill? took the thing at 10pm hoping i could sleep through this...NO! mad
took my limit of dilaudid & tylenol already. having a very sad feeling that i may need to go to the hospital for treatment for the joint pain.  but i really hope my PCP can pull through for me & perhaps increase the dilaudid to 6mg 2 or 3 times a day or add percocet or something else during this bad time.
i can't take any more prednisone!!!!!!  can't can't can't!  need  break for a few weeks.  when i was on it i didn't need as much pain meds, sometimes none at all. but i was breaking down emotionally and aesthetically from the prednisone & it was really making me miserable (plus no sleep while on it too!)
well anyway...thank you for listening. even my cats ran away from me tonite! they wanna sleep! lol.
hoping tomorrow i'll get some help.
erin


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 12/13/2006 9:12 AM (GMT -7)   
Oh Erin,
 
I'm sorry you are in so much pain sad and it looks as if they are giving you so much in the way of treatment...makes you wonder just what really works for this disease????
 
I have asthma and as a child, I took lots of prednisone, so it is a real eye opener isn't it?? they say not to take it past 3 or 4 in the afternoon if you want to sleep, but with RA, you don't have that option do you?
 
This pain is just something else and when you are expected to keep up with daily life it is just a nightmare...I am in so much pain and I have to force myself to keep up with the driving, and demands of children and my husband and household.
 
How long does it take for the Remicade to work? isn't that considered the last resort in RA meds when nothing else has worked? is it pretty strong?  I am so sorry you are doing these treatments and they are not giving you relief, that is just awful sad
 
If you have the option to rest or stay in bed, do it!  If not, my heart goes out to you even more.  As far as the pain meds go, I have taken them for other things (painful cycles) during a flare and they did nothing. (I found that disheartening)  Maybe for you, they could give you something super strong. 
 
Try to hang in there, big big hugs to you.
 
 

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 12/13/2006 10:07 AM (GMT -7)   

(((Erin))).  I hope today is a better day for you and that your doctors can give you something to get through the rough spots.

 

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


seechell
Regular Member


Date Joined Sep 2006
Total Posts : 362
   Posted 12/13/2006 10:21 AM (GMT -7)   
(((((Erin)))))
Take Care,
               Chelle
    "God grant me the serenity to accept the things I can not change, the courage to change the things I can and the wisdom to know the difference."
  DX: ankylosing spondylitis, periferal neuropathy, chronic migraines/headaches, depression/panic attacks, bi-polar, hypothyroidism, hypoglycemia, sleep apnea
  RX: synthroid, estradiol, cymbalta, prozac, geodon, lamictal, inderal la, klonopin, seroquel, imiprimine, aspirin, (relpax, phenergan, esgic plus, xanax, PRN for migraine)
  Surgeries: hysterectomy 1997, tonsillectomy 2001, deviated septum 2005, cataracts (both eyes) 2006
 
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 12/13/2006 11:23 AM (GMT -7)   
Sorry you're not doing well sweetie.. hang in there and rest easy... this too shall pass
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
 


keepingthefaith
Regular Member


Date Joined Aug 2006
Total Posts : 331
   Posted 12/13/2006 3:45 PM (GMT -7)   
Erin, I just said a prayer for you.  I hope you can get some rest & be pain free.  I also couldn't sleep last night, feeling like I have the flu.  Anyway, this is about you.  God Bless.

Dx with CD 1987, 3 resections, 3 abcess sx, OA back & hips, bulging disk, depression/anxiety, kidney stones & sx to remove, now 43 yrs old.  Still trying to figure this disease out & of course all the little extra complications that come with this rollarcoaster of a life with CD. I love BON JOVI MUSIC- Keep the Faith; Living on a Pray, It's My Life
Meds:  Imuran .75 daily,xanex .25 nightly, prn in the day, vicodin  7.5 3x daily,fish oil, fovia,vit e,folic acid,Vit B12,inject monthly
 
         
 
 


Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted 12/13/2006 5:47 PM (GMT -7)   
Erin....So sorry you are having a rough time. I hope it will pass soon. Do what ever you need to feel better. my thoughts are with you......

Harley Diva
 
....RA, HPT,  drugs: Sulfasalazine, MTX, prednisone, bp meds


Swanfleweast
Regular Member


Date Joined Nov 2006
Total Posts : 147
   Posted 12/13/2006 11:00 PM (GMT -7)   
I too am so sorry for what you are going through I too am having trouble finding the right treatment. I have been in severe pain for months now and the doc wont give me anything else but the vicodin. To me it works like bay aspirin. Just hang in there. I will pray for you, that they can find the right treatment. I too had to get bumped up to 20 mg of the steroids a day and scared to death. Me and them don't get along but they work wonders on the tings that need it. I have been on them for a year now. I too get no sleep. My anxiety level rises by 10. If you feel you need to go to the hospital then go..why do they make us suffer??? Please keep us updated...really I hope you get some help.
Lori
Fibro, RA, IBS, Anxiety, insomnia,(Pluersy, Pericarditis, and now Vasculitis) in the last three months
 
Meds: Serax 10mg, Mobic 15mg, Prednisone 15mg, Prilosec 20mg, Vicodin 5/500, Flonase, Calcium and magnesium, Robaxin 500mg, Nortriptyline 50mg, Baby aspirin 81 mg, zocor 20 mg
 
 
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/14/2006 1:01 AM (GMT -7)   
Oh boy...I'm touched really, thank you all very much for everything.
I'm still up and the pain broke enough to check in to my email for a bit...at 3am of course.
So wow...almost did go to the ER today.
The joint pain in the knees & ankles was so severe it almost made me pass out.  I kinda broke down a bit...I really do not want to go to the hospital.
So I wrapped Lidoderm all over them, took the max of tylenol, had to take a lot of pain meds...and I bit the bullet and took prednisone.
It was still bad up til about 5pm.
 
Oh, Istone....I'm allergic to tramadol.  Bummer, but they gave it to me once & my thraot & tongue swelled up.
 
My GI looked sad when I told him that I wasn't feeling much different. But it's the 4th infusion...and that 4 week wait set me back in between infusion intervals.
He really feels that in my situation this might take a longer time to work.  The RA is far advanced and very difficult to control...so it could mean that I may be looking at another 5 infusions to stabalize at least with symptoms.
 
Faith and Diva...your prayers did work...I really didn't think the joint pain would ease up & I really thought I would be in the hospital tonite.
I really hope this passes in a few days.
I don't know what I did wrong for this to get so bad all of a sudden?
Was it because Saturday night I was on my legs for more tha usual and it's overuse pain?
 
And thanks mom...well, I am home all of the time because I cannot work, so yeah...I am in bed and on rest pretty much all of the time & do things when I can.
Tomorrow should the joint pain still be this bad I am definitely going to the ER to get checked out.  I was running a temp on monday and a few days last week.  So I have to practice what I preach right?
 
Man this is hard.  This one struck kard and fast; started sunday & just got worse & worse.  After the infusion monday I thought I was a bit better...but it just turned a bad corner yesterday.
My mother was good...she sat with me while I balled my eyes out.  I have a high pain tolerance...but this one did make me cry.
I'll let you al know what my PCP says tomorrow should he call me back & advice me what to do.
luv you all
erin

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 12/14/2006 5:17 AM (GMT -7)   
(((((((hugs))))))))

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 12/14/2006 3:44 PM (GMT -7)   
love you girl...
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
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/14/2006 4:09 PM (GMT -7)   

hey ya'll

managed so far to keep myself out of the hospital.  went to the PCPs today for bloodwork...i am proud that i actually made it there.

well, have a fever, case of the "D", a little rash across my face, very pale too...recieved a depomedrol shot...and sent home for bed rest for today and the next week.

doubts it's any sort of sepsis, personally i rule that out too.  so it's agreed that this is just a major MAJOR RA FLARE. and perhaps even the possibility of a drug induced lupus. which in reality this one does qualify me & is bad enough to be admitted....but he did leave it up to me.  but, i have gotta keep my butt put for a while.

also could be a trigger of fighting off a germ from being in a room full of people saturday.

nothing has got worse pain wise...so for that i'm grateful.

the next big flare iget i think i will be alright with getting admitted to the hospital..but i'd really hate it now...might seem petty, but with the holidays soon coming...i feel it would drive my mom off the rocker right now.  so if i can tough it out at home till' after christmas????  i wonder if i can get a visiting nurse??????? hmmmm???????

thing that bites is  i KNOW i HAVE to go sometime soon.  there's too many things that need to get checked out, and i do need administered pain meds that are stronger. and all the physicians keep badgering me to really go & be admitted for a few days.

well folks, when this get rough they sure get rough.  for anyone going through the same thing...you'll make it through as sure as i will too.

peace/love

erin

 


Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions Q3 weeks; Intra-articular knee injections; Imuran; Mesalamine; Prednisone tapering from 120mg; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted 12/15/2006 1:44 AM (GMT -7)   
Erin....Hope your feeling better. If I knew anything that would help I would package it and send it your way. There are many good thoughts and prayers that everyone here are sending you. When I feel bad I try and do anything that takes my mind off the pain. I watch monster movies and eat something that is not good for me. In other words pamper yourself.
Harley Diva
 
....RA, HPT,  drugs: Sulfasalazine, MTX, prednisone, bp meds


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/15/2006 2:56 AM (GMT -7)   
thanks Harley Diva
tonite...distraction wise...has been very good to me.  a little bit of an increase in pain tonite & this fever is annoying and keeping me up.  6 and 7am seems to be the magic number for falling asleep.
so yeah, distraction tonite was good. Top Model marathon...then i fell asleep from 10am till1am and now still up redface @5. 
with my honey tonite we're going (hopefully) to see Raul Malo at a place in Montclair. He's from the group the MAVERICKS...i hope i make it (another reason why i was avoiding the hospital)
you know...i feel so bad sometimes that i spoil plans.  i almost hate it when we have to RSVP or buy tickets to shows because 9 times outa 10 i can't make it.  there were soooo many shows and events we missed because i ended up in the hopsital.  see what i mean? almost puts a fear in ya.
so i pray to God that by 6pm tonite i can get dressed and go.
my good friend of mine once said to me..."it must be impossible to set goals like this"
his words are so true.  and i'm sure this does not apply for every case, because there are so many folks you have AI diseases and have minimal symptoms & it barely interferes with their lives...that makes me happy that there are people like that.
hah...so for some strange reason...i made a nice donation to the arthitis foundation. :-) really don't have it to spend, but that made me feel better too.  heck...it was only 25 bucks, but every penny counts.  there needs to be a cure for this one day.
 
you have all been a major help during this bad time.  i'm taking off to my honey's for the weekend...to recoup & hopefully tuesday come back doing better.  a lot of rest & HOPEFULLY SLEEP!  well here's to actually gettin' to sleep this morning.
 
peace/love
erin
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions Q3 weeks; Intra-articular knee injections; Imuran; Mesalamine; Prednisone tapering from 120mg; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 12/15/2006 4:28 AM (GMT -7)   
hang in there and dont over do it tonight..... luv ya yalinda

Jim-N1BRP
Regular Member


Date Joined Jul 2006
Total Posts : 165
   Posted 12/15/2006 10:04 AM (GMT -7)   
Erin, remember rest, rest then rest some more.
Take care

Jim, 53, 5 level Cervical Laminectory-2003, sclerotic lesions in hip found Nov 2006, GERD, 30% Carotid artery blockage, Kidney Cyst, Asthma, Eye problems, Prostate BPH, Tripling of PSA.

Meds, Tramadol HCl, Flexeril, Omeprazole, Nitrostat, Plavix, Albuterol, Saw Palmetto, Multi Vitamin Mens 

 

Post Edited (Jim-N1BRP) : 12/15/2006 10:16:07 AM (GMT-7)


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 12/16/2006 6:58 AM (GMT -7)   
Hey Erin... how are you feeling?
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
 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 12/17/2006 6:54 AM (GMT -7)   
thinking of u!

Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted 12/17/2006 11:55 AM (GMT -7)   
Erin......Hope you can go and have a good time. Rest after you have some fun. You need the fun right now. Thoughts and prayers.
Harley Diva
 
....RA, HPT,  drugs: Sulfasalazine, MTX, prednisone, bp meds


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 12/17/2006 11:06 PM (GMT -7)   

Hi Erin - I hope you feel better soon. I've been thinking of you a lot these last few days wondering about you since I haven't been online...now i know why, must've gotten the vibe you weren't well! I'm so sorry to hear how much so! sad

Take it easy and rest rest rest!!!!

****


 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/18/2006 3:46 PM (GMT -7)   
hey ya'll
thanks so much.
i had me some fun friday night at the concert.  it was a sitdown one...boy i needed that. :-)
still took a lot out of me...saturday & sunday & today were bad joint-wise, but hoping this flare ends soon.
going back to bed. redface
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions Q3 weeks; Intra-articular knee injections; Imuran; Mesalamine; Prednisone tapering from 120mg; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 12/18/2006 5:39 PM (GMT -7)   
huggs and rest up so u can go out and buy me a great gift for christmas hehehehehe yalin

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/20/2006 1:17 PM (GMT -7)   
dangit, dangit, dangit...looks like this holiday will play out like Thanksgiving because...
i'm GLANDULAR again.
sad  blah.  without fail, the timimg was right.  Remicade, then wait...then fever & the darn big lymph node on the right neck.
bee festering since sunday...today woke up with it bad.
luckily my PCP was able to take me today. wow...that was a surprise!
got me some Levaquin & stuff for the chest pain.
i'm just happy that it happened today and not saturday...or worse, need to go to the er.
guess this explains why i haven't felt well & running constant fevers.
i'm beat...back to bed.
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions Q3 weeks; Intra-articular knee injections; Imuran; Mesalamine; Prednisone tapering from 120mg; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 12/20/2006 9:49 PM (GMT -7)   
hang in there girl.. we're pulling for ya
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
 

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