ugh, flare again, back to 50 mg of pred :(.. Humira?

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Regular Member

Date Joined Jan 2006
Total Posts : 312
   Posted 2/10/2009 1:02 AM (GMT -6)   
just need to rant for a bit.  I had come off pred about 4 weeks ago finally.  My flare seemed to be under control and I was getting better.  Then all the sudden... joint pain in the ankles/knees/wrist/elbows.  Then a few days later, fatigue.  Then severe fatigue, then fever.. then stomach goes blammo!   Pop in 20 mg of pred..gets better a few days.. then gets worse again.  Up to 30 mg of pred... same thing.  Now I am up to 50.  The past week i was in so much friggin pain in the joints i cant even believe it could be from UC/chrons.  But I always seem to get joint pain initially as my first symptom so maybe it is.   ITs strange that everything else happens first...and the stomach pain/issues come last.  This is the opposite way it used to be. 
Anyway, as discussed with my dr... we are trying this 50 mg of pred for a week + cipro/flagyl and battery of tests..then 45mg pred, etc.  if at any point my symptoms come back full force(so far on the 50mg they are better), i will be trying humira. 
I've read about it, etc.  The usual dangerous side effects from anti TNF blockers.  My question is...
who has been on humira for a significant amount of time and in remission?  Or how long were you able to be one it before it stopped working?  I know im heading down surgery road as of this point but i just want a little more time!!! 
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 30 mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg (tapering through water titration)|Trazodone 50 mg|

Regular Member

Date Joined Nov 2008
Total Posts : 23
   Posted 2/10/2009 2:56 AM (GMT -6)   
That sucks about having to go back on the pred and at 50mg too. It's a great drug when you need it, but not when you need it for more than two or three months at a time. I hope your symptoms will improve as you taper down, though it sounds like you're wisely preparing for the alternative.
What was your experience with the 6mp? At what point did your dr. put you on it? Like you I will probably end up back on pred but I don't want to become steroid dependent. I just hope my doc will choose wisely about when its time to try something different like 6mp or azathioprine.
Best of luck Vin. Do return with posts about what you and your dr decide and how it is working out for you.
Distal UC (25cm), Nov 2008
Colonoscopy Nov. 2 08: Pathology showed inflammatory changes throughout colon, but ulcerations, friable tissue, etc. last 25cm of colon
Lialda (Nov 08) 3.6g; (Dec 08), 4.8g/daily
Canasa supp. 1g (for 3 weeks, from Nov. 5),
Prednisone 40 mg/daily 4 week taper (Nov. 17 ‘08), Back up to 15mg Dec. 20, taper 2.5mg/wk. Off Pred Jan 27…knock on wood.
Rowasa: 4g/bedtime Dec. 20 ‘08, 4g/bed time Jan 19 ‘09
Procotofoam: 1 application/bedtime, Jan 20 ‘09
Current UC meds are underlined.

My mother (UC for 20+ years) has been in remission for quite some time (at least a few years). :)
One of my cousins has Chron's dz. :(

I love Cottonelle wet/flushable wipes!

Regular Member

Date Joined May 2003
Total Posts : 297
   Posted 2/10/2009 8:39 AM (GMT -6)   
Vin I'm waiting for Humira to be approved for UC, because I've been on Azathioprine for years and it is not keeping the blood and loose stools away. Remicade worked great for me a few years ago, but I couldn't afford the treatments after 3 months...even with is so fair.
Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day

Veteran Member

Date Joined Aug 2008
Total Posts : 903
   Posted 2/10/2009 8:45 AM (GMT -6)   

To me Humira is a miracle drug. I went on the drug about a month out of the hospital in 2007. Since then I've been in remission. It's worth trying.
26 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 2/10/2009 11:44 AM (GMT -6)   
Hi, I asked on your other post,
How do you know what symptoms are UC and what are Lyme's disease? The pain you describe sounds like what Lyme's disease does to people.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 

Regular Member

Date Joined Jan 2009
Total Posts : 498
   Posted 2/10/2009 11:58 AM (GMT -6)   
Hi Vin. Hope you are better now. The symptoms which you have listed in your first mail are all steroid withdrawl symptoms. Normally this miracle drug (steroids) has these side effects. I have been on steroids off and on for over 16 years and have faced all these problems. Infact at times, one feels a shooting pain at a particular point in the palm. The joints do pain. These are all withdrawl symptom. That is the reason steroids have to be taken under strict medical supervision and not blindly, like I did. It causes lot of complications. These are immunosuppresant drugs. Your immune system goes for a six in case you use them for long. Taper down the medicine as per doctors advice. Don't stop it abruptly. That is my sincere view. about 21 years back, there was no evidence that this disease - UC runs into family. Infact, my family was the first one, from where doctors realized that It could be so as it affected four of my siblings. Strange. Only I have had the surgery and am repenting. Control it with medicines. Avoid steroids and steroid based enemas, as far as possible. They have lots of side effects, including but not limited to fertility, bone density, calcium. I hope you are having calcium with Alpha D alongwith steriods. Take care and all the best. Don'tworry be happy.

45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery

Regular Member

Date Joined Jan 2006
Total Posts : 312
   Posted 2/11/2009 1:08 AM (GMT -6)   
Hi All,

Kinda whacked out from meds now. I was admitted to the hospital due to extreme fatigue, stomach pain, D, and just feeling very sick. My stomach dr up here where i work( i have 2 of them, one where i live and one where i work) came to see me and wants me to start on remicade after my TB test comes back negative. So i will likely be starting that tomorrow or Thurs. I'll post more when I have more energy and respond to posts above. My other stomach dr down by me had mentioned humira...but the one up here seems more adamanat about remi. So I guess it will be remi afterall.

Its nice to have laptop access :).

History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 50 mg|6mp 75 mg|lialda 4.8 mg|Cipro/Flagyl|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|

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