Just Diagnosed with Ankylosing Spondylitis

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annecal
Regular Member


Date Joined Jan 2005
Total Posts : 109
   Posted 7/16/2006 6:16 PM (GMT -7)   
A little background... I'm 29 years old, and I was married in July of 2004, got sick on my honeymoon and was dx with Crohn's disease in September '04. Horrible bout with Prednisone, which worked, but was a complete nightmare, and went into remission late Spring of '05. My husband was killed by an elderly driver in August of '05, and everyone thought I'd flare again right away, but it didn't happen until this past January of '06. The joint pain and fatigue with this flare has been intense. Mainly lower back but also knees and hips. I've been on disability since January because I often can't drive, can't stay in the same position for more than an hour, etc... finally got to see a rheumatologist and apparently it is classic AS.

I'm on Remicade for the Crohn's, but it doesn't seem to be helping the AS. I can't take the NSAID drugs because of the Crohn's. I reluctantly am taking 5 mg of Pred to see if that will help. Also on Neurontin.

Just would like some advice, thoughts, etc. The surprising thing with this for me, is that the hip and knee pain comes and goes so quickly, day to day and I never know if I'll be able to walk much from one day to the next.

Plan is to get the Crohn's under control and then switch to Enbrel for the AS.

Thoughts, experiences appreciated.

Annie

Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 7/16/2006 7:49 PM (GMT -7)   
Hey Annie.. welcome to the Arthritis Forum... sorry you are having such a rough time... I don't have AS, but I do have Spondylitis from my Psoriatic Arthritis... I don't know much about the interactions with the different biologics, but has your doc thought about giving you Enbrel for both your Crohn's and AS? Good luck to you, let us know how you are doing.. Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

curley
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Date Joined Mar 2005
Total Posts : 4305
   Posted 7/16/2006 8:09 PM (GMT -7)   
Annie Hi,I'am so sorry that you have had a hard time the past few year's.One thing is for sure you need a break.I as well have crohns and AS,oa,ra and Sejerens as well.I would like to ask are you taking any thing for your pain?are you seeing a Pain Doctor?I have been on remicade but had anti-serum-sickness so had to be pulled from that and we have to be carefull with prednisone because it effect's my lung's so there for we onlt use it when I have kno choice of the matter.I'm on Humira and I give full credit for getting me out of a wheel-chair.I was so swollen and in so much pain I could not walk.While the Humira helps with the RA it does nothing for the crohns or the oa,as.I take as well Sulfazine 3,000mg aday to help with some of the other arthritis.I do hope that you get to feeling better soon and if you ever want to talk just e-mail me and I will be glade to help in any way I can.
Thanks
Curley......
a.k.a.Mela...........


annecal
Regular Member


Date Joined Jan 2005
Total Posts : 109
   Posted 7/16/2006 8:44 PM (GMT -7)   
Hi,
Thanks very much, it's been a rough year, definitely. As far as I know, but correct me if I'm wrong-- I don't think Enbrel works on Crohn's. So that's the problem there. It probably -would- work, but I don't think it's been approved to treat, so it'd be an insurance thing, maybe?

annecal
Regular Member


Date Joined Jan 2005
Total Posts : 109
   Posted 7/16/2006 8:49 PM (GMT -7)   
Hey Curley,
The rheumatologist just put me on Neurontin(sp?)-- it's a drug that was originally used to treat seizure patients, and apparently once you fall asleep it makes it so you sleep very deeply, and is supposed to help manage long term pain. So far, so good. I do have percoset, but I am reluctant to take it because it makes me very nauseaus. Can't take the usual stuff because of the Crohn's. Have an appointment with the rheumatologist on the 21st and am going to ask about a different pain killer- any suggestions? I'm not worried about dependency- last flare, I had SUCH a bad time with the steroids, I was constantly on the percoset, and also ativan to keep me from shaking and ambien to sleep, etc- all sorts of very "habit" forming drugs and had no probs not taking them when I finally went into remission. Just want to find something to take the pain away and not make me feel so nauseaus!

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 7/16/2006 8:53 PM (GMT -7)   
How often are you getting your Remicade infusions and at what dosage? I have As and CD, the CD diagnosed first. The Remicade as prescribed for CD [5 mg/kg every 8 weeks] was not cutting it for the AS. They upp4ed my doage and moved the infusions closer together. The normal Remicade dose for AS is 5 mg/kg every 6 weeks. I currently get 6.5 mg/kg every 6 weeks and it is helping the AS much better.
CD, Ankylosing Spondylitis, peripheral neuropathy
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annecal
Regular Member


Date Joined Jan 2005
Total Posts : 109
   Posted 7/16/2006 9:07 PM (GMT -7)   
I weigh 130 and get 600mg of Remicade every six weeks. Started out at 300 mg every 6 weeks, we tried to move it to 8 and it was a bad scene. Even with 600mg every 6 weeks, by the 5th week I REALLY need to get in there for the next infusion. I've just had my second 600 mg infusion, last Thursday. It just doesn't seem to be helping with the joint pain at all.

Also taking 4000 mg of Pentasa/day, 6MP (although I JUST started that), 5 mg pred, and Neurontin.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 7/16/2006 9:13 PM (GMT -7)   
Sorry to hear that the 600 mg is helping. That is about 10 mg/kg. I haven't ever heard of anyone going higher than 10. I developed lupus antibodies so the docs are reluctant to go higher than what I am now getting. I also find that at the 4.5 week mark post infusion that my joints begin to flare. The one thing that did help me was getting the enthesitis under control. Not sure if you are having problems with that. If you are, I found getting the fluid drawn off the tendons and then coritsone injections to calm much of it down. Took six months to get most of the tendons taken care of. Good luck and hope you see some improvement soon.
CD, Ankylosing Spondylitis, peripheral neuropathy
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annecal
Regular Member


Date Joined Jan 2005
Total Posts : 109
   Posted 7/16/2006 9:18 PM (GMT -7)   
Thank you! I've only been on the Remicade for just under 6 months, but the joint pain is surprisingly unresponsive to the meds. Trying to be patient...

3kidsmom
Regular Member


Date Joined Feb 2006
Total Posts : 50
   Posted 7/16/2006 10:38 PM (GMT -7)   
Have you been tested for Celiac disease as well? You should with the Crohn's dx. Good luck to you and God bless your future.

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/17/2006 10:10 AM (GMT -7)   

Hi Anne,

Welcome to healing well.  I think someone else asked this as well, but I didn't see a reply.  Has your rheumy thought about switching you to enbrel?  My rheumy believes I have undiagnosed IBD (previous history of colonic ulcers) that is being controlled by enbrel.  I started on humira back in Jan.  It did nothing for my joints, but mysteriously my lower GI symptoms disappeared completely.  I switched to enbrel, and still not a whole lot of luck with my joints, but again, no GI symptoms at all.  Enbrel is not supposed to do a good job with  IBD, but I'm hearing of more and more cases where it unofficially works for some people.  There are clinical trials going on with enbrel and cd--Mayo clinic has one currently underway.

Thanks,

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


annecal
Regular Member


Date Joined Jan 2005
Total Posts : 109
   Posted 7/17/2006 11:50 AM (GMT -7)   
I'll ask him about it. Right now Enbrel isn't approved to tread Crohn's, so I think the current thought is stick with the REM until the Chrone's goes into remission, and then switch to Enbrel (my dad is on Enbrel) for the AS. So we'll see!
I have been tested for celiac and was negative, thank God!
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