And so it begins...

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elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 3/23/2007 8:09 AM (GMT -7)   
The rebound arthritis from stopping the enbrel is here.  I've been gradually stiffening up for the last week or so.  I'm now officially walking like an old lady until around 1-2pm or so and I continue to experience the pain throughout the day.  I told my husband last night, though, that the time to try something different isn't until the pain starts affecting my sleep.  So far, it has not.  Unsure if I can up my ultracet or not--interaction with tb meds and mtx, but none of my doctors have told me otherwise, and I have been prescribed up to 6/day.  I currently only take 2-4.
 
I am determined not to let the arthritis center my whole life.  I'm going to force myself to walk everyday in some capacity, and I'm going to stretch every morning and every night.  Perhaps if I lose some weight, it might help--I only have about 10 pounds to lose, though, and those last 10 pounds are reluctant to come off!!!  But at least I'd feel better about myself.
 
One question for ex-enbrel users.  Does enbrel have a program that accepts unused and sealed enbrel injections back so that they can be distributed to others who may not be able to afford the meds?  I have 2 unused and sealed boxes (two months worth); they're just sitting in my fridge collecting dust--I won't be able to use them for at least 9 months and I don't know what the shelf-life of this drug is.  I'd be willing to ship it back to enbrel if someone else can use it (at my expense)
 
El
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


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 3/23/2007 9:53 AM (GMT -7)   
el, sry to hear all that is going on. i know u r a fighter so keep fighting.
it is a shame u have that med thaqt someone could use, but i would guess the FDA has strict rules due to tampering of packages. i wonder what the shelf life is? no exp. date? hmm, maybe ur pharmacy would know?
well good luck and many hugs yalin

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 3/23/2007 5:09 PM (GMT -7)   
How long has it been since you had Enbrel? I thought I was "getting better" so I thought I'd try and quit taking the Enbrel to see how I do.. uh yeah, I made it a week and a half and I felt like 6 tons of dog crap.. it was awful, and it took me longer to get BACK to where I was.. never again..
Moderator of Arthritis/Epilepsy Forums
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
 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 3/23/2007 6:17 PM (GMT -7)   
Hey ducky. I've gone 3 weeks without so far--first felt it after about 1.5 weeks, but it has steadily gone downhill this past week.. This morning was the worst I've felt in a long, long time. I'm a bit sore right now, but not like this morning. Right now I think I'm going to take a nice hot bath and wrap a giant heating pad around me (wouldn't that be a great invention?).

Cheers,
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


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 3/23/2007 6:43 PM (GMT -7)   
Do you have an electric blanket? Before I got diagnosed, that was my BEST FRIEND! I would wrap myself up and go to sleep.. so nice, so warm... Good luck to you El.. we're pulling for ya!
Moderator of Arthritis/Epilepsy Forums
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
 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 3/26/2007 8:59 AM (GMT -7)   

Hi Elcamino,

I don't take enbrel, but I am on day 5 of my medrol dose pak, and the pain was so terrible last week, I seriously considered taking myself to urgent care, but then tell them what? I am in pain from my unspecified inflammation? eyes   I like the Medrol, but sheesh, the rebound after it wears off is really unpleasant!!  So I know where you are coming from. 

Keep your chin up, I know its hard!


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 3/27/2007 7:42 AM (GMT -7)   
elcamino said...
Hey ducky. I've gone 3 weeks without so far--first felt it after about 1.5 weeks, but it has steadily gone downhill this past week.. This morning was the worst I've felt in a long, long time. I'm a bit sore right now, but not like this morning. Right now I think I'm going to take a nice hot bath and wrap a giant heating pad around me (wouldn't that be a great invention?).

Cheers,
Elcamino


Elcamino,
I must have missed it, why did you stop Enbrel?
I would love to as well, but am concerned about going back into the old, sick me.

... how you beat it ... Craig

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 3/27/2007 9:52 AM (GMT -7)   

Hey Craig,

I had to stop the enbrel because I'm being treated for latent tb.  I don't have a positive ppd, but I have scars in my lungs indicative of an old tb infection combined with a low-grade fever for the past year or so.  I'm still taking mtx and plaquenil, though, so I'm doing ok so far.

I guess now I know what happens when you stop taking one of the biologics--I've been wondering.  Does this mean we may need to consider being on these types of drugs for the rest of our lives?  Am I a DMARD junkie :)?

 

El


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


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 3/27/2007 2:07 PM (GMT -7)   
just thinking of u el and keepin u in my prayers. how u doing? dumb question i know but i can hope better?hugs yalin

cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 3/27/2007 7:25 PM (GMT -7)   
Elcamino,
I do recall that topic now. I hope things get better real soon

... Craig

Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted 3/30/2007 11:16 PM (GMT -7)   
Elcamino Hope your feeling better soon. I looked at my Enbrel sure click box and it is good for a year. Maybe you can just hold on to it until you are done with your other treatment. I know how you feel though. I just got three months worth of Sulfasalazine and prednisone filled and now I am off of it. It seems like such a waste when there are people with no money who could use the help.
Harley Diva
 
....RA, HPT,  drugs: MTX Enbrel, bp meds,folic acid


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/31/2007 8:58 AM (GMT -7)   
hey el,
regarding what you said about "being on dmards the rest of our lives..." both my GI & rheummy said that the meds i'm on for RA will be for the duration (aka forever).
but i'm sure a patient has a lot of say in treatment if he/she would like to experiment and go off of some meds...
maybe this doesn't apply to everyone but that's just one thing i've been told.

((((((((((((hugs)))))))))))))))))
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 

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