Crohn's and ankylosing spondylitis

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Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 4/17/2008 8:30 PM (GMT -7)   
Hi all,
 
I normally hang out at the ostomy forum, but I have a question for you. Our 21-year-old son was diagnosed in 2004 with severe Crohn's disease. He currently takes Asacol, 6MP, and adds Prednisone and/or Rowasa enemas during flare ups. He was in the hospital for a week and had eight units of blood when this first started.
 
He has been doing pretty well with occasional flare ups. My husband is HLA B27 positive and has ankylosing spondylitis and psoriatic arthritis. Our son with the Crohn's is also HLA B27 positive and we knew that the possibility of AS was possible but not probable. Well, it happened. Right now he's dealing with bilateral sacroiliitis and he's starting to fuse. There is also something going on with his bone marrow, so we're going to have more tests from that - it's possible that it's Crohn's related.
 
My question is, we're most likely going to be offered Humira, Remicade, or Enbrel as a start for treatment. What route would you take?
Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


neon cactus
New Member


Date Joined Apr 2008
Total Posts : 9
   Posted 4/17/2008 9:57 PM (GMT -7)   
Both AS & Crohns run in my family - and I have both. Check out http://www.spondylitis.org for detailed spondy info. Apparently most Spondy patients have Crohns - either "silent" or active, according to recent research (from Spondylitis.org website).

Remicade did nothing for me, but pack on 20 lbs. Humira just started a few weeks ago and it IS helping. Yay!

Good luck.
BTW - we are all HLA b27 NEGATIVE. And Normal CRP and sed rate blood values. Strange nasty disease(s), indeed. confused
 
 
(edited to make link active)

Ankylosing Spondylitis & Crohns

Post Edited (neon cactus) : 4/17/2008 11:04:09 PM (GMT-6)


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 4/17/2008 10:08 PM (GMT -7)   
I have no experience with Embrel or Humira. I have been on Remicade for about 3 years now. I seldom use my cane now and even ride my Harley. I still can not sit or stand for long periods and it is painful when I have to bend down to the floor or move in a way that is unusual such as reaching into the back of a cabinet. I know we are all different but Remicade has done wonders for me. What ever path your son takes I hope he gets relief soon...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 4/17/2008 10:12 PM (GMT -7)   
Well...I'll be a case study for you. I am about to go for my first Rheumy visit after complaining for 2 years about the various joint pain. I have been on Humira for about 6 months and I know I've lost bone density from the predinose because I'm already taking Boniva monthly as well. The Humira has been wonderful for the Crohns. I built antibodies to the Remicade. My Humira injections are 40mg weekly and my CD is moderate to severe. I still have breakthrough joint pain enough to require 2-3 percocet a day. Tylenol is useless. I'll continue to post on this topic as I progress/digress and I'm sure you'll remember my pen name. Have they told you anything that your son could have done to divert the fusing? I'm just curious because I'm just learning about AS.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 4/18/2008 7:43 AM (GMT -7)   

Neon

Thanks for the reply! My son is taking this pretty good; blaming it on his dad. LOL  Luckily my husband doesn't have Crohn's. There were concerns about it long before my boys were born, but nothing ever came out of it. He does have Barrett's though. Now for an even stranger bit of information, my 82-year-old mother is being worked up for it! Strange huh? Thanks for the link!

Sniper

Thanks for the good wishes. The way my hubby explained it was that during his fusing process, that was the worst part, and then it wasn't as bad. He continues to work but has started having shoulder pain that he needs to get checked out. He has lost the use of most of his fingers due to fusing and a couple of his toes are in the same condition. He of course can't bend over but has figured out creative ways to tie his shoes.

Broomhilda

I remember when my husband was diagnosed with it that they gave him a bunch of different exercises to do. I'm assuming that they'll do the same for my son. I'm just having flashbacks to how bad it got with my husband when he was fusing, and I don't want our son to go through that. Whenever my husband has certain x-rays they always ask him when he had the 'back surgery'.


Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1205
   Posted 4/18/2008 8:48 AM (GMT -7)   
The bone marrow problems can be from the 6-mp its is know to effect it.
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 4/18/2008 11:47 AM (GMT -7)   
I started with Remicade for my AS and Crohn's. Prior to starting the Remicade, I had to use a walker to get around, needed help on and off the toilet and a chair, I could not bend. I was scheduled for hip replacement surgery because of severe hip pain. After my third infusion [at 6 weeks], I no longer needed the walker, assistance getting up or down and could squat down for the first time in 2 years. My hip pain completely went away - and I canceled the hip replacement. In addition, my gut symptoms completely went away.

The Remicade worked great for 2.5 years. Then it slowly started losing effectiveness. I was switched to Humira. It seemed to work okay though not as well as the Remicade. That could be due to the fact that after 2 1/2 months I had a severe reaction to the Humira. I am no longer on any biologics.

I hope that your son gets great relief from whatever medication he chooses. I will add that Enbrel is not known for controlling Crohn's as well as Remicade and Humira.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Blonde Crohnie
New Member


Date Joined Dec 2007
Total Posts : 6
   Posted 4/18/2008 1:21 PM (GMT -7)   
I've been on Remicade and it has definitely helped my CD and I feel strongly that it also helps my back problems.
But, Humira is marketed for AS, RA, etc. So, it may be that there's something about it that would work better for your son.
 
I've wondered if I have AS...I've had chronic back pain for years. I've gone to physical therapy, gotten TENS therapy, massage therapy, and have been doing yoga regularly for months and still no relief with the dull, aching pain.
Can I ask, how did you find out about the HLA B27? Is it a blood test?
 
In my own research on AS, they say the best thing to do is exercise...ultimately you can't stop the fusion, but you want your back to fuse in a good position..so exercise and physical therapy techniques can help.
 
I wish you the best of luck with your son.
 
Erica

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 4/18/2008 9:34 PM (GMT -7)   
Sugarmarie
I was thinking that it might have something to do with the 6MP since it suppresses it. Thanks for the info!
 
Ides
That's great that you got some relief with the Remicade. Our main decision is whether to go with Enbrel which would just be for the AS since it's not indicated for Crohn's, or go with Remicade or Humira which would be good for both diseases. Luckily I work at a doctor's office so I can get a lot of information, but it's always nice to hear from someone that has actually taken it.
 
Blonde
Yes, the HLA B27 is checked though a blood test. The AS can be diagnosed by an MRI scan or by an x-ray of the SI joints. It's pretty sad at this point. He can't even get out of bed to go to the bathroom; we have to help him. Not too many 21-year-olds would have to ask someone to help them to the bathroom. I can even remember my husband crawling on his hands and knees to the bathroom when he was dealing with this.
 
You're right about the exercising. That's the first thing they told my husband to do. It helps by strengthening the back muscles. My husbands takes methotrexate for his AS and PA. Most of his joints are pretty shot though.
Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


Blonde Crohnie
New Member


Date Joined Dec 2007
Total Posts : 6
   Posted 4/20/2008 8:38 PM (GMT -7)   
It is so sad to hear that about your young son and your husband. How awful it must be. I know I have had days where I feel that Crohns is so unfair and I feel so old! But, I guess your stories show us that it can always be worse.
I hope that things go well for you and your family. God bless.
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