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Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 7/24/2009 2:14 PM (GMT -7)   

Hey, I recently stopped Humira. It was causing me severe head aches and fatigue that i couldn't handle. I had a colonscopy just before I quit using it and it showed some changes, but not enough for me to continue having headaches and fatigue. I found that humira was similar to me using immodium. It would slow down my bowel movements, but it wouldn't do much for the consistency. When I had to go I still HAD to go, if you know what I mean. Anyways since I have been off it i have started to lose a lot of my hair, about half. I did have a lot of hair before which was a good thing. I couldn't imagine starting with less hair. But as of 3 days ago i have had extreme pain in my knees, ankles and today it started in my hips. I don't know what to do about it. I can't see my doctor because he doesnt take emergency appointments and my regular doctors appointment isnt until august 10th. I'm almost ready to go to the hospital to ask them what may be going wrong. And get some pain meds while I am there.

I am currently on no meds. Im awaiting confirmation on remicade. This waiting game is killing me because i have no energy and im not even enjoying the  nice weather that has been here for a week. Im scared to leave the house because my stomach is so unstable. I also have tons of canker sores in my mouth making it painful to eat. Everything is so frustrating right now. Thanks for listening to me vent. :) hope everyone is well ttyl.


Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 7/24/2009 5:04 PM (GMT -7)   
I hate the limbo of crap in between treatments, especially when the weather is nice... extra torment, huh? So sorry you're in such a spot.

If it's remicade you're waiting on, is there any way to step it up? I know I got Remicade without it being "paid" for yet, so maybe if the hold up is financial at all you can help with a phone call? I hate waiting for medicine. I'm always pestering someone on the phone about it, it seems - it never happens as it is supposed to.

Stay on top of it, and in the mean time, maybe a good movie and then a deep conditioning hair treatment and bath. My hair is thinning lately too...just general malnutrition I think here. I'm partial to hot olive oil treatments for it. It's cheap, works, and is already in my kitchen when I get the urge to be extra nice to my locks. Or, what locks are left. :-) My hair fills back out when I'm healthy...I'm guessing yours will too.

Vent away, Chronic. I'm right there with ya today~
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. Leaning towards Failure there too.
Currently on:
Cimzia (started 2-12-09) Again, not helping much, if at all.
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Feeling a bit jaded lately, but trying to keep my chin up.


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 7/24/2009 10:09 PM (GMT -7)   
Thanks patientspider. A nice hot bath sounds good. And a movie is in order tonight :). We did go out to the lake this evening for a little bit. The water was like bath water. Perfect.my daughter had sooooo much fun in it. She is 16 months old and just loves the water. Except for the few tummy aches and runs to the out house it was fun. Would have been funner if I didnt have to worry about going to the bathroom.

Im just waiting for the approval of remicade. Should be soon I hope. The pain is getting worse and the weightloss is increasing from lack of appetite. my doctor said it should be soon that it goes through. I live in canada so I have medical. . . . thank goodness or I would be having surgery right now. I will phone him on monday and see what the progress is.
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/25/2009 6:38 AM (GMT -7)   
Hey CI,

Can you maybe get on a short dose of Pred while you wait for the Remicade approval? No need to suffer so waiting for the approval.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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