Ankylosing Spondylitis

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chattycat
Regular Member


Date Joined Aug 2004
Total Posts : 334
   Posted 4/14/2008 7:38 PM (GMT -7)   
 Who here has AS? Are you seeing a Rheumy for it? What are you doing for it? I was just recently diagnosed with AS, and am waiting to see a Rheumy. For now, my family doc has me taking Oxycocet for the severe pain. It's hard to find a med that I can use to reduce inflammation, because I also have crohn's disease. So I have to be careful the meds don't cause stomach issues.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 4/14/2008 8:30 PM (GMT -7)   
When they learned I had AS on top of my mild CD, it was strongly suggested by my GI and rheumy that I begin taking Remicade. The only other med that would not potentially cause the NSAID type gut problems was Sulfasalazine. However, it turned out that I was allergic to sulfa. So Remicade it was -- and that put my gut into remission and greatly improved my mobility and decreased my back/SI and joint pain. Then Remicade failed after 2.5 years. Took Humira which helped but not as good as the Remicade. It probably didn't work as well because I was working up to reacting to it after only 3 months.

The GI/rheumy put me on Celebrex because it has less gut issues than the other NSAIDs. That helped but I developed hyponatremia. Then the GI said that NSAIDs could be tried and if it impacted my CD he would fix it. Well, they really helped get the inflammation down but developed kidney problems and had to stop that.

So the current plan is to treat the enthesitis by withdrawing excess fluid and injecting cortisone in the problem areas plus pain meds. I have a huge long list of the joints and tendons I have treated. I had my right SI joint injected in September and it has really helped. I am now just getting some pain in that area if I sit too long. I take Tramadol and Neurontin together for my neuropathy but it also helps with the other pain. I have a stronger opiate for breakthrough pain. I also got a lot of benefit from seeing a wonderful physical therapist. I had a different PT for a couple years which was only marginally beneficial. This new guy has improved my strength, balance, and reduced pain in some areas.

I almost forgot - I also have a TENS unit which I can use. I used it alot the first two years on my SI joint. since getting my SI injected, I don't need it as much.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 4/15/2008 4:32 AM (GMT -7)   
Hey there chattycat.. yes, there are a few of us here that have AS.. I see that you have posted on this forum before, what ailments do you suffer from? what other meds are you on? good luck to you and keep us posted on how you are doing..
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR/Methotrexate
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots/HCTZ


chattycat
Regular Member


Date Joined Aug 2004
Total Posts : 334
   Posted 4/15/2008 12:29 PM (GMT -7)   
Hi there Ducky!
It seems that each year that passes, they keep adding new things to my already full plate. I have polycystic ovaries with dysfunctional uterine bleeding, have had a bad back since my late teens, but when I went to see a Rhuemy about it then, he told me nothingwas wrong with me, even though I had days that I couldn't take a step forward if my life depended on it! The in my early twenties I had my first bout of Iritis. I get this nice eye thing at least twice a year. Then in my later twenties I was diagnosed with Crohn's disease, which they said probably explains the Iritis flares. My back has always been quite sore, at forst they said it was probably just RA or OA which runs in both sides of my family, but after some testing, it was found that I do indeed have AS with some damage already done to the SA joints! I was also diagnosed with fibromyalgia a couple of years ago. For me, it's kinda hard to decide what is causing me pain on any particular day, it all ranges from cramping, knife like pain, to not being able to move without wincing. My family doc and my gut doc have both discussed Remicade/Humira as treatment, but want me to see the Rhuemy first. I am just looking forward to a pain free day, that would be really nice!!!
Ides...my family doc tried me on Celebrex a few years ago, but it did absolutely nothing for me! What is hyponatremia??? My best friend is a physiotherapist, which is GREAT, she is helping me with some stretching excersises and posture training(I am already a bit hunched over).
Makes me wonder if I should just go straight to trying Humira instead of Remicade first. My GI doc said he is just starting to see some negative results come in about remicade failing after a while, or not working at all.
I know a woman that has Enbrel injections and said it works great for her, that she wouldn't be able to move without it, will have to research that one a bit more to see how it would affect the crohn's.

chattycat
Regular Member


Date Joined Aug 2004
Total Posts : 334
   Posted 4/15/2008 12:41 PM (GMT -7)   
oh I forgot to tell ya what meds i am on at the moment, sorry!! Ok, here goes....
Divalproex 1000mg- for fibro
Prednisone 40mg - hoping to start taper at end of this week
Vesicare 5mg-- to help control overactive bladder
Pariet 20mg- for GERD
Spironolactone 25mg- water pill
Furosemide 40mg -water pill ( I have pitting edema in my legs from the knees down)
Citalopram 20mg- my happy pill!!
Buscopan 10mg- for bad tummy pain days
Oxycodone HCL/ACET A5/325- one at night before bed for pain

chattycat
Regular Member


Date Joined Aug 2004
Total Posts : 334
   Posted 4/15/2008 12:43 PM (GMT -7)   
oh, and B12 injections weekly.....did I mention that I am also getting VERY forgetful lately???!!

Kate81
New Member


Date Joined Apr 2008
Total Posts : 8
   Posted 4/16/2008 2:44 PM (GMT -7)   
I am guessing that you will probably be put on an immune-suppressant like Enbrel. Anti-inflammatory drus are so hard on the GI system, and these TNF blockers are the only thing I know that can actually stop or slow the progression of Sponyloarthropathies like AS. I have Sacroiliitis, which is in the same family, but the inflammation is in my SI joints. I am told it may progress to my spine and my diagnosis would change to AS. I haven't tried Enbrel yet, but my Rheumatologist thinks it's my only option at this point. I have developed a severe allergy to all anti-inflammatory medicine. I have injections for the pain, but they only help hide the symptoms. Enbrel may actually help the disease.
 
I know it's really scary at 1st b/c there's so much you don't know yet. It sucks, but it is what it is. Hopefully you'll find a great doctor and the right treatment. Best of luck.
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