Ankylosing Spondylitis

[fof]

Hi
Ihave had Ankylosing Spondylitis (AS) for many years and my reumy wants to put me on Enbrel (anti TNF). 5 weeks ago I had an emergency rthemi colectomy, they removed 12" of intestine and told me I had crohns. I know that Remicade is used to treat crohns but is any one here on Enbrel? Has anyone else got AS and crohns? and how are you being treated.

Andy

 

[Jeff D.]

What is it? I have never heard of it before.

 

[fof]

It is an inflamatory disease attacking the joints mainly in the back causing a fusing of the the spine. Like crohns it is caused by an over active imune system.
Andy

 

[mol]

Hey,

Yeah I have both AS and Crohns. About 7 years ago I was diagnosed as having sacroiliitis (inflamation in the sacroiliac joint) which was causing me agony. I was given ibuprofen and sent to see a physio. The physio was pretty useless and when the pain disappeared they told me to keep doing my stretches and it would be fine.

Obviously they didn't understand the problem I had. Anyways about 4 years later, after developing a fistula the surgeon who was about to lay it open suspected I may have crohns and stopped the surgery. It was a good job he did, because I do indeed have the bugger.

Apart from the fistulas (now have 2), I've been pretty lucky as my bowel has behaved itself rather well. Unfortunately my back hasn't. In the intervening years since my sacroiliitis diagnosis, my back became more and more inflamed. I would have trouble breathing as the top half of my back was bad. Eventually I went to see a rheumotoligist who diagnosed the amusingly titled AS.

Since then both my crohn's specialist and AS specialist have decided that the best way to treat the AS is to treat the crohns. So I have been on a course of azathioprine (made me ill), then 6-mp (gave me pancreatitis), then steroids, then methotrexate (which i'm still on).

The only thing that has removed the back pain was the steroids. I was on them for a couple of months and it was weird walking around without pain, I had forgotton what that felt like. Since the steroids stopped the dull pain has come back, but I haven't had too many AS flare ups.

I haven't tried Enbrel (unless it goes by another name). But just to let you know, that there are other crohn's patients out there with AS.

Mike

 

[Jeff D.]

Thanks for the info. I hope you can get some treatment for it.

 

[ruthymg]

My brother (who is adopted - so not a blood relation) has AS. He was also given ibuprofen and told to stretch but not overdo it. He has real problems with his back and because he is an exercise fanatic (mainly weights and cardiovascular) he is always in pain with his back. His theory is just to struggle on, but myself and my family worry about him. Nothing we say makes a difference, he spent 12 years in the army and so fitness is really important to him. I haven't heard of the drug you mention though, but I hope it gives you some relief.


Ruth

 

[fof]

Excersise is the best thing he can do for his back , but no excersise is is better than swimming, try and persuade him. AS does not respond to rest (it's one of the symptoms)
Good luck tomorrow
Andy

 

[DanSJVDavis]

I'm kinda afraid I might have AS as well, or at least some nasty arthritis in my back, but I haven't gotten around to going to a Rheumatologist. My back hurts so bad all the time that it hurts my ribcage and breastbone as well. When I move in certain ways or carry heavy things it sometimes feels like my ribs are grating. I can hear a noise in my neck too from time to time that sounds like dry paper being rubbed together when I turn my head. I haven't taken a full breath without a lot of pain (except when I take a bit of booze or some vicodin) in a couple years now. I dread sneezing.

 

[fof]

Yeah sneezing is not recomended.
Unlike other arthritic problems AS does not respond to rest and first thing in the morning putting on socks is impossible. It does effect the rib cage as well, You should get yourself checked, Remicade is used to treat both conditions so you could kill two birds with one stone.
Other symptems of AS include: IBS, chronic fatigue and of course aching joints, small wonder I didn't know that I had crohns until ater my op

 

[tinglebell]

I'm kinda afraid I might have AS as well, or at least some nasty arthritis in my back, but I haven't gotten around to going to a Rheumatologist. My back hurts so bad all the time that it hurts my ribcage and breastbone as well. When I move in certain ways or carry heavy things it sometimes feels like my ribs are grating. I can hear a noise in my neck too from time to time that sounds like dry paper being rubbed together when I turn my head. I haven't taken a full breath without a lot of pain (except when I take a bit of booze or some vicodin) in a couple years now. I dread sneezing.

LOL(sorry), I can relate to this. I was doing a search on arthritis and this thread came up. Fortunatly I don't have the ribcage problem, but do have the rest. The crunching, crackly sound in your neck is called crepitus. I had surgery to correct an improperly set wrist fx, and when I went for my final check-up the dr. took an x-ray of my pinky, because the joint was red, and said I had arthritis, but not rheumatoid. So another trip to my internist and she said it was from my crohn's and/or psoriasis. Ended up at the gastro and a rheumy and put on prednisone to treat the crohn's. Weird thing is, I have had low back discomfort for a long time, which got worse and then got the neck stuff with real bad pain. Catch 22, I dislike taking pain meds, but then with crohn's, aleve and motrin are bad for you. So I take a lortab if it gets bad.

 

[ravyn142003]

Very informative read here! I was diagnosed in March of 2005. I'm on remicade, entocort, lortab, phenegran, some spasm med and prevacid. I have barrett's esophagus, gastritis and crohn's colitis with granulomas, (dont know what granulomas are), do any of you?

I'm always in pain. If it's not my back it's my stomach, if it's not my stomach it's my eyes, if it's not my eyes it's my neck(the upper part) like right now it's killing me and my frickin head and eyes hurt really bad. Been impossible to sleep!

I had low back pain so bad for months before I got sick. So it is related to crohns' ey? Hm, my doctor said that he didn't think so , but I think it is too. When I would sneeze I would fall to my knees and hurt real bad. Now the pain, well it's all over the place. It sucks and I take the lortabs but I can't take them as much as I would like to. Noway, don't want to get addicted to them things.

Do any of you have pain like migraines and your eyes, entire face, back of neck and down into your ribcage? Sometimes I get pain in my ribcage on the left side and it last for days, my feet tingle sometimes and go numb and well I could go on and on but what is up with all this?

Somebody help me!

 

[tinglebell]

I also have had low back discomfort off and on for a while, but the hands and neck are new within past 2 months. I used to take motrin for my discomforts until I found out I shouldn't be. Now I take a lortab when the prednisone/entocort wears off, usually once a day. My face gets sore and my legs get numb and tingly from butt to toes, but that is neuropathy from B12 def. Granulomas are an overgrowth of tissue I think, that are usually benign. Try wikipedia for an acurate definition. You sound a lot like Mike with the rib thing though. Has the remicade helped with the symptoms at all?

Dianne

 

[Brando]

i know when my crohn's flares and i push on the inflammed part it sometimes sends a shooting pain to my left ribs. i get a little bit of lower back discomfort every now and then but it is mostly muscle related from exercising too hard.

 

[ravyn142003]

Exercis?

i know when my crohn's flares and i push on the inflammed part it sometimes sends a shooting pain to my left ribs. i get a little bit of lower back discomfort every now and then but it is mostly muscle related from exercising too hard.

I miss exercising so much! I used to work out every other day before I got sick with this dreaded thing. I felt pretty good about myself then, now well the outside isn't so pretty anymore! I count my blessings though! But you go on with your self and I'm happy for you that you can work out! I've tried but it disables me totally so yeah I've only tried it twice but I paid for it dearly afterwards.

 

[ravyn142003]

remicade helping?

I also have had low back discomfort off and on for a while, but the hands and neck are new within past 2 months. I used to take motrin for my discomforts until I found out I shouldn't be. Now I take a lortab when the prednisone/entocort wears off, usually once a day. My face gets sore and my legs get numb and tingly from butt to toes, but that is neuropathy from B12 def. Granulomas are an overgrowth of tissue I think, that are usually benign. Try wikipedia for an acurate definition. You sound a lot like Mike with the rib thing though. Has the remicade helped with the symptoms at all?

Dianne

I think that without remicade I'm in serious trouble. I can always tell when it's getting close to the time when my next infusion is coming up cause I get way worse. But for the rib pain, this has been pretty new the past 3 months. My mother has neuropathy and I don't know about the B12 deficiency but is this what I'm experinecing also? Remicade is what has been my big help, but I can't leave the Lord out of though because he has been my greatest help!

 

[tinglebell]

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Quote:
I think that without remicade I'm in serious trouble. I can always tell when it's getting close to the time when my next infusion is coming up cause I get way worse. But for the rib pain, this has been pretty new the past 3 months. My mother has neuropathy and I don't know about the B12 deficiency but is this what I'm experinecing also? Remicade is what has been my big help, but I can't leave the Lord out of though because he has been my greatest help!

All I know is that I never expected the sx I got from B12 def. Everyone who has crohn's and especially a resection should be taking B12 IM or SL. We have a severe malabsorption problem and even people taking meds like prilosec and tagamet can get it. It also can run in families. You need to get your lab results from your doc. Check out this website.
http://roseannster.googlepages.com/home