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dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/18/2008 3:42 PM (GMT -7)   
No more Humira for me. I'm a little worried, as it now leaves me wide open. That drug really was my last hope of any kind
of remission.
I guess I'll have to take my chances with whatever this DD wants to throw at me (sigh)
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 9/18/2008 3:48 PM (GMT -7)   
I know how you feel about being left "wide open." I did very well on Remicade - it put my guts in remission and really helped with my ankylosing spondylitis issues. Then after my Remicade and Humira reactions and my recent diagnosis of lupus, my rheumy told me no anti-TNF meds ever again. I feel vulnerable too. I am also downright angry about getting lupus from these drugs.....so many mixed feelings..

Hope everything in your system stays calm and on a steady course.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/18/2008 3:49 PM (GMT -7)   
Why did you lose access to it, Dunny?
Co-Moderator Crohn's Forum.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/18/2008 3:53 PM (GMT -7)   
They think it's drug induced Lupus. Just hoping it's not the full blown....
Still having more tests.
Thanks for getting back so quickly Ivy. You & I seem to be in the same boat!!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/18/2008 6:55 PM (GMT -7)   
So sorry to hear. It's so hard to have a hope eliminated. Hang in there!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 9/18/2008 7:16 PM (GMT -7)   
At the risk of sounding harsh, I am going "anti-TNF blockers" on my own. Remicade stopped working, and I just can't bring myself to shoot the Humira into my body. Too many of us are popping up with Lupus, and lupus-like symptoms and all this other crap... I just can't wrap my brain around it anymore. I feel "wide open" myself, and terrified - but then... what do we do when the "treatments" turn out to be as bad or worse than the original disease? Aye.

And, again it doesn't sound nice, but Humira wasn't your "last hope of remission" REALLY, was it? It might have been the last med for you (as it is/was for me), but what about food allergy testing, diet modifications, alternative therapies? I know it's "easier" to just shoot up the Humira once a week, but I'm trying to keep my own mindset positive by telling myself that the remission that I want is still possible - it's just going to involve a lot more footwork and a variety of techniques... I don't know. I know you're a veteran here, Dunny, and maybe you really have run the gamut. Just thought I'd try and counter the "what the heck am I supposed to do now" voices that I know are probably raging through your head.

~Sending good thoughts your way.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/18/2008 7:32 PM (GMT -7)   
I was also thinking that you could spend some of that Humira money on some of PB4's alternative treatments. They might not be a cure but might relieve some of your symptoms or keep them from getting worse. Or now could be the time to really try an SCD or Makers Diet. Who knows.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/18/2008 7:42 PM (GMT -7)   
Thanks guys, I guess it is something I could look into.... But after this last 6 months in particular, with the DX of chronic pancreatitis, and
now possibly lupus, I feel kinda beaten right now. It seems that everything I've tried to do for my disease has turned sour on me.
I try to keep a positive mindset and my diet has definitely been modified either by cd or cp.
Right now I feel extremely tired, and want to say to hell with it....of course this too will pass (hopefully)LOL
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Tj1
Regular Member


Date Joined Jul 2008
Total Posts : 71
   Posted 9/18/2008 8:54 PM (GMT -7)   
You know those clinical studies are for people that didn't get help from these other drugs have you given that a thought.
 DX'd with UC 2000.
 DX'd with CD 8-9-08
 
 allergic to Asacol
 Colazal made it worse
 Prednisone 20mg X2 daily   
 Flagyl 500mg X2 daily
 First Remicade infusion 8-9-08
 
 Toprol XL --  Hypertension
 Insulin   --   Diabetes 


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 9/18/2008 9:13 PM (GMT -7)   
Wow! Do they believe that Remicade and Humira can cause/induce Lupus?

I am so sorry to hear you are going through that you guys! Take care and hugs!!

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/19/2008 6:20 AM (GMT -7)   
In some cases it can happen. If it is induced by the drug, usually once the drug is stopped, lupus symptoms slowly
disappear....
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 9/19/2008 6:50 AM (GMT -7)   
Geeeez, what a bummer. Its like you trade one illness for another and then you get to keep them both. Its not fair. But I am sure some drug co. will come up with a brand new drug soon and off we will go on our very own test. I feel like a lab rat sometimes. Hope you feel better soon dunny and you too Ides. Guess I will stay on Remicade until it has a bad effect, or I trip over my tail. Do I smell cheese???
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.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/19/2008 7:04 AM (GMT -7)   
You're no rat Sniper. In fact I think you're more of a *****cat, s'cuse the spelling I'm British, I shouldve said kitty LOL
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 9/19/2008 12:41 PM (GMT -7)   
So Sorry Vicky!
 
I think you are just in some shock now, there are other meds and I am sure you can try them once the Lups goes away... will the others like Cizma and LPN also cause Lupus for you? You never know so many new meds are coming out lately...
 
Keep your chin up... I know it must be rough but you can make it. trying some natural remedies may not hurt also.
 
take care,
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 on Soma and Lyrica

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and Clonazepam 

 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 9/19/2008 5:20 PM (GMT -7)   
Sorry to hear this Vicky, hopefully there will be a new drug come along soon that will be effective for you. I agree with Fitzy, maybe try the alternative route.
Good luck
Jo

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 9/19/2008 9:49 PM (GMT -7)   
Vicky, what sort of symptoms do you have? I have a cousin with lupus and she has a rough time with it.
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.


infoarch2
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/20/2008 3:52 PM (GMT -7)   
If you're thinking of an alternative route, have you considered enteral nutrition? It is tough, but it can be very effective for some people.

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/20/2008 5:55 PM (GMT -7)   
Sniper, my symptoms right now, is total body aches, extreme fatigue, and some of my joints are hurting when they never did before,
some weight loss, all in all I feel like have the flu..
Some things are hard to distinguish, because when I'm flaring I do have some of these same symptoms. I think the one that gets me
down the most is the fatigue. It has changed my personality to a huge extent. I feel like a miserable old **** and that upsets me...
I'm sorry you cousin is having a rough time, but I understand how that could be. Right now I hope this is a drug induced episode, I
honestly don't believe I could handle yet another incurable disease. But, having said that, I put up with nothing compared to some,
especially someone like your wife. That humbles me. God bless LOL
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts

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