stay or stop Humira

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Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 10/23/2008 10:33 AM (GMT -7)   
confused I'm taking a shot once a week and, for the crohn's its great no pain, no urgency problems, only once a day or every other day, so its great... smilewinkgrin

But the problem comes from the side effects: mussel pain in my legs, so bad I can't make it through WalMart walking, I have to use a scooter, I can't sleep even though I take sleeping pills, if I'm lucky I get 3 or 4 hours a night, and I'm having really bad mood swings. confused And my cholesterol is went sky high.....

My question to anyone is if you went off the shots did the crohn's come back with a vengenest??? And do you get side effects from coming off ??? And does all the other problems go away???

I'm going to my GI on the 5th of Nov, Called and hes out of town until next week so, I was hoping I could have some comments from you all to help me make up my mind what to do.

yeah yeah


Dawn turn yeah
49 Female
Dx June 07 Crohn's take asacol 2x3 a day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08 , vit-B shots ,
Dx Bipolar May 08


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 10/23/2008 10:54 AM (GMT -7)   
I've been without Humira for about 9 weeks, my symptoms are now beginning to re-appear, but it did take this long...

I'm glad you mentioned your cholesterol, my triglycerides also went very high. Since I've been off it they've returned to near normal 150.
Quite a change to the 500 levels I was getting...
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 10/23/2008 11:10 AM (GMT -7)   

Wow, that is awful. I did not realize Humira can cause those type of symptoms. I don't see any yet but my Fibro is acting up more and I am having more joint issues so maybe I am next to have problems.

I would wait to talk with the Doc. the problems could be other things, maybe a vitamin deficiency or something. who knows. I sure hope that he can help you somehow.

if it is the Humira there are other options now there are people here on the newer drugs that can give you advice.

Also, I think I better get my Cholesterol checked now...

Good Luck at the Doctor!!!

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 

 


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 10/23/2008 1:11 PM (GMT -7)   
dunny2, did you have any problems going off the humira???



Dawn turn yeah
49 Female
Dx June 07 Crohn's take asacol 2x3 a day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08 on 1 shot a week, vit-B 12 shots , crestor,
Dx Bipolar May 08


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/23/2008 3:42 PM (GMT -7)   
I went off. I was clinically assessed as being moderately sick in ten days; was severely sick within four weeks.
Co-Moderator Crohn's Forum.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 10/23/2008 4:50 PM (GMT -7)   
Ne ne, I didn't have any problems coming off Humira, but now my crohns is coming back..

The one thing I need you to know, is that, my GI had to take me off because of Lupus. So please do let your doctor know
everything.... Good luck sweetie.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 10/23/2008 7:38 PM (GMT -7)   
Ne Ne-

How long have you had the muscle problems? When was the last time your iron was checked? I'm just curious why you associated the muscle cramps with the Humira and I am suspicious that it's not something else going on. Have you done a prednisone taper lately?
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 10/23/2008 8:26 PM (GMT -7)   
broomhilda, I have had a lot of blood work and my iron is ok. The reason I think its the humira is because my GI drs nurse said it was a side effect. And I've only taken endocort, and i got off it in Aug.I went to MAYO the end of Aug and they upped the dose of humira, from twice a month to once a week. I started the middle of Sept, and after a few weeks my legs started hurting and they keep getting worse.


Dawn turn yeah
49 Female
Dx June 07 Crohn's take asacol 2x3 a day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08 on 1 shot a week, vit-B 12 shots , crestor,
Dx Bipolar May 08


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 10/24/2008 7:13 AM (GMT -7)   
Hmmm..... I take my Humira once a week also. My muscle aches have been dx'd as Fibromyalgia. I used to think this was a knockoff diagnosis until I saw a Rheumy. Tramadol is what I take for the osteoarthritis & it helps me greatly with the Fibro pain (even though they say the Fibro wouldn't respond to that)?! Alot of times when I have problems in my lower back I don't feel the pain there but deep and achy in the bones of both legs. It is an annoying pain isn't it! Even though I understand increasing your dosage of Humira and the leg pain increasing would be why your are questioning the Humira I would still maybe consider seeing a Rheumatologist. Crohn's has all kinds of freaky autoimmune responses and I would hate to see you ditch the Humira if something else is causing the leg pain or your leg pain from the Humira is actually being exasperated by something else. Get my drift. Let us know how things are going with you because this could benefit others here. I don't remember seeing this side effect mentioned by others but it is always possible since each of us have a different response to Crohns and medications.
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 10/24/2008 8:45 AM (GMT -7)   
Ne Ne,

I see you are taking Crestor. I am worried that the muscle pain you are experiencing could be due to rhabdomyolysis, which is a known side effect of the statin drugs, of which Crestor is one. Your doctor, or another doctor in the practice if your doctor is out of town, could easily check for this with some blood tests. It is something I would check up on relatively promptly, because left unchecked it could cause kidney damage. I hope things improve soon.

Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 10/24/2008 9:37 AM (GMT -7)   
broomhilda, and Writer, I've only been on the crestor lees than a month, and I'm going to have it checked in 3 weeks. I saw a Rheumy before I started the humira. I have arthur but nothing bad just achy joints. I've had them for years. I have to do a lot of blood test for my GI ,I'm doing them next week. I just want to have all my ducks in a row so I can bring up good questions when I see the GI. He knows I come on here and ask questions and he said if anyone had something that could work Hes up to try.



Dawn turn yeah
49 Female
Dx June 07 Crohn's take asacol 2x3 a day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08 on 1 shot a week, vit-B 12 shots , crestor,
Dx Bipolar May 08

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