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cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 6/29/2010 12:35 PM (GMT -7)   
I never had this problem before I started on Humira.  Since switching to Cimzia a year ago things are better.  For those with the same problem (which in my case both I and my rheumatologist believe is drug induced) has your doctor combined your Humira or Cimzia with another drug to help with the muscle pain?  I've been on a low dose of prednisone (8-10mg/day) but am tapering off it before anything nasty happens.  The rheumatologist seems to be at a loss as to how to handle this whole situation.  Suggestions? 

DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/29/2010 1:17 PM (GMT -7)   
I am experiencing leg cramping and muscle control loss. I can walk but it is like my legs are asleep all the time. My doc thinks it is the Pred. I moved from 30 to 10 mg of pred every other day and put on hold the Pentasa until the cause is isolated. I will be off Pred at the end of this week. I am not sure where I will go from here but potentially I can not do pred…
It is a little freaky when all of sudden your legs do not work quite right. Crohns … so much fun
David

Symptoms since I was 15 (now 50), 2 “definitive” IBS diagnoses but no treatment except “eat more broccoli, you are not getting enough roughage"..lol, CD in small bowel diagnoses with Pill Cam 06/2010, Kapidex 60mg, Prednisone 30 mg (tapering down over the next couple of months), Pentasa 4,000 mg, Amitripyline 10 mg, SCD, Freeda  - Multi Vitamin  & 2000 UI D3,  Melatonin 9mg


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 6/29/2010 1:58 PM (GMT -7)   
dave, your symptoms sound a lot like nueropathy - but you're not on flagyl.

DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/29/2010 3:37 PM (GMT -7)   
Cleo - I just looked up nueropathy and I do not like what I saw. My doc did not indicate that that this is a big deal, Right now my fingers are crossed the sypmtons disapear as I get off pred. Any insight or comments are more than welcome
David
 

Symptoms since I was 15 (now 50), 2 “definitive” IBS diagnoses but no treatment except “eat more broccoli, you are not getting enough roughage"..lol, CD in small bowel diagnoses with Pill Cam 06/2010, Kapidex 60mg, Prednisone 30 mg (tapering down over the next couple of months), Pentasa 4,000 mg, Amitripyline 10 mg, SCD, Freeda  - Multi Vitamin  & 2000 UI D3,  Melatonin 9mg


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 6/30/2010 6:12 AM (GMT -7)   
dave: my input is that after I'd been on flagyl for several months I started getting a feeling in my legs like they were going numb - the day I reported it to my GI was the day I was taken off the drug and I'm now considered allergic to it. The symptoms disappeared. It was your comment that your legs felt like they were "asleep" that made me think of it. I don't know if the cramping and muscle control loss is related or something totally different but you need to report this to your GI. Call his office and ask to speak to his nurse - that would be my next step if I were you. She'll consult with the doc and give you an answer over the phone or tell you if you need to come in to see the doctor (and get you in sooner than if you call reception and set up an appt). Keep us posted.

DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/30/2010 6:46 AM (GMT -7)   
Thanks Cleo
Today is the first day not pred in weeks. I actually slept past 3.
It seems like the legs thing is getting better but still I have issues. It is really wierd. The doc asked me to come back either at the end of this week or next week depending on if the symptons are lessing or remains the same. I can now wiggle my toes and I could not even a few days ago, so hopefully I was having a pred reaction and as the pred leaves my system so will the symptons.
Of course stopping the pentasa concers me but I guess the doc needs to isolte what is going on.
 
How are you doing Cleo with your pain, getting better...good thoughts your way
David
 

Symptoms since I was 15 (now 50), 2 “definitive” IBS diagnoses but no treatment except “eat more broccoli, you are not getting enough roughage"..lol, CD in small bowel diagnoses with Pill Cam 06/2010, Kapidex 60mg, Prednisone 30 mg (tapering down over the next couple of months), Pentasa 4,000 mg, Amitripyline 10 mg, SCD, Freeda  - Multi Vitamin  & 2000 UI D3,  Melatonin 9mg


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 7/1/2010 12:56 PM (GMT -7)   
Thanks for asking David, things are much improved since switching from Humira to Cimzia but not completely gone. I pretty much told the rheumie that he needs to come up with a plan B - what I didn't tell him was that my next appt. with him will be my last if he doesn't - I can have my blood work done at my GI appt. thank you very much! I want to get off prednisone - I'm only taking 7-10 mgs a day but I know what this is going to do to my adrenal gland etc. because over the years I've been on it several times and at much higher doses. Get this: after two years of going to this guy he's NOW testing for gout - this tells me everything I need to know about the level of care I'm getting. I don't fit the profile to be diagnosed as having RA or lupus (which I'm happy about) and my symptoms are random and migrate all over the place but come on, we ought to be further along dealing with this than we are IMO.

firecracker1
Regular Member


Date Joined Apr 2007
Total Posts : 208
   Posted 7/1/2010 6:23 PM (GMT -7)   
I have a lot of muscle pain with Cimzia. I used to take Humira, but that did not work out for me. I am also on Cipro, which is causing tingling in my fingers, but I have no choice. I am waiting for surgery for fistula. I am allergic to Flagyl, so the dr said this is what I have to be on until after my surgery on 8/6. Regarding the muscle pain. I have found that drinking 2 liters of water a day helps. I also take 250mg magnesium a day. The most annoying muscle pain is in my chest and my forearms. It's almost like I am bruised, but there's not any bruises around. Good luck and hopefully the dr can find a better treatment for you. That is what I hate most about Crohn's. Some of the treatments are as bad or worse than Crohn's. 

Love_Art_Baby
Regular Member


Date Joined Jun 2010
Total Posts : 59
   Posted 7/1/2010 7:14 PM (GMT -7)   
They are combining 6MP w/ Cimzia for me..
23 y/o
Diagnosed in 2007
Misdiagnosed w/ Lactose Intolerance @ 11 y/o
Misdiagnosed w/ IBS @ 16 y/o
3 hospital stays in the last 6 months
been on Asacol, Pentassa, Remicaide, Humira, Prednisone on and off (I think it's the devil) and lost more random things.
Right now 6MP,about to start Cimzia, just went off prednisone AGAIN, just stopped Humira
 
Married with a 3 y/o
~Want to get this back in control so I can try for another baby! :)

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