if you have arthritis...

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ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 7/24/2008 9:19 AM (GMT -7)   
I really don't want to put a damper on everyone's day, but thought I would share what information my rheumy gave me yesterday regarding my crohn's related arthritis.  Next week will be the fourth Humira treatment and I had huge relief after the 2nd injection, but no response to the 3rd. GI told me that he couldn't get it approved for once a week for crohn's but that the rheumy could for arthritis, so that is what I have been counting on. But, rheumy told me yesterday that she can't get it approved either, that she has tried with many patients.  She said she does not think the Humira will ever help enough that I can stop taking pain or arthritis meds every day also.  We are being careful on what meds I take, as I ended up with 3 ulcers a few months back, possibly from the Salsalate.  She said most of her patients get the most arthritis relief from Remicade, which I had to stop due to allergic reaction and loss of response due to antibodies.  So, her answer for now is a 6 day Methylprednisolone DosPak.  She said to see if that helps and let her know if not and we'll try something else.  Supposed to see her again in 6 months, which sounds very long if stuff ain't working. 
 
I was extremely discouraged to hear that I can't get Humira once a week and that she doesn't think it will ever help enough to get me off of pain meds (just taking tramadol).  Also discouraged to hear that Remicade seems to be helping her patients the most, since a lot of us on here can't have it anymore.  I hope most of you have more luck than I am right now with the arthritis.  She said to give the Humira a couple more months to see....I guess if it doesn't help more, I'll switch back to Cimzia. 
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 7/24/2008 9:21 AM (GMT -7)   

oh crud that sucks!!!!

I am on humira and my joints from arthritis are bad. My back is the worst and my hands. I was hoping for some relief. tonight is my 3rd humira injection (on the 2 week schedule) I was hoping the joints would get better some day. 

thanks for the warning though!

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 also on Soma

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and now new med Clonazepam starting 7/18/08

 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 7/24/2008 10:18 AM (GMT -7)   
I would try appealing to your insurance company. Tell them that without 1/week you will not get better and that the cost of surgery would be more than the cost of the medication (if that is true).
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.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/24/2008 11:09 AM (GMT -7)   
Thanks for sharing that Zena. You know I have alot of problems with my joints, but have continually put off any of these strongers meds, because I keep hearing these stories of how they don't help the pain. And then there is all the side effects. I basically have given up and just continue to take my pain meds, at this point they at least make life a little more livable. I sure wish they would come up with a medication we Crohnies could take that would give us relief from the arthritis and joint pain. Hope you get feeling better.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 7/24/2008 11:20 AM (GMT -7)   
I'm so sorry that Humira isn't working for your joint pain. 
I have never been on it yet.  I did do the Remicade about 7 years ago but after the 3rd injection it landed me in the hospital. So I was never on that long enough to see if it was going to work. 
 
I currently just got put on Methotrexate and I'll tell you what, as much as its been rough with the side effects, its kicking in and really starting to help my joints.  I'm still not all that fond of it, but the side effects do seem to be getting better and I'm really trying to stick with it here.   Maybe something like this would help you??  I'm winging off the prednisone and hopefully will be able to get off it here in a few more weeks.
 
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin
No Surgeries
 


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 7/25/2008 9:11 AM (GMT -7)   
LBJ, I asked my doctor about Methotrexate, as I heard about it through someone else, but he said the new data suggests you shouldn't take it with Humira.  I am currently on 6MP, but he said we will be tapering off of that soon.  I guess since the Cimzia and now Humira has kept my gut in remission, he wants to stay on that.  I just wish something would take care of the arthritis also.  Fitzy, my rheumy hasn't tried with my insurance company yet, but said she's tried several times with no luck, so it sounds to me like she won't even try unless we get to the point where nothing else we can try will work.  Since my gut is in remission, I don't think we can use the cost of a surgery as a way to get insurance to approve it.  I'm giving the 6 days of steroids a try and we'll go from there, I guess.  Karendee, I hope the Humira takes care of your joints. 
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 7/25/2008 6:50 PM (GMT -7)   
I am on once weekly Humira & daily Imuran. My CD is moderate to severe. I have Osteoarthritis, Osteoporous, CD joint pain & Fibromyalgia. The Humira has done wonders for my gut that Remicade never could. However, Tramadol (Ultracet) and daily stretching after warming up the muscles has been the only thing that keeps me physically functional. I still have breakthrough pain but it is bearable. The Tramadol has also helped with my fatigue because I don't feel as though I'm stiff and running a low grade fever 24/7. Just thought I'd add my 2 cents here for those of you who are making decisions about the big guns.
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Glucosamine, Multi-Vitamin, Ultracet Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, peri-menopausal.

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