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can AS sufferers live a normal life? #244653 11/30/12 06:22 PM
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stiha Offline OP
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my partner diagnosed with AS 3 years back had to take remicade in such short period of time because of his increasing inflammation within 3 yrs..all peripheral joints are affected, rib cage also most probably as he often complains of having some sort of oesophageal spasms..has frequent flares of uveitis and puts on steroids on eyes..
his disease process started at 11-12 years of age as enthisitis,later diagnosed as juvenile spondyloarthritis,later at 18 yrs when sacroilitis was evident on xrays got final diagnosis of AS..
he is on NSAIDS, MTX, Sulfasalazine and have taken 2 doses of remicade..nevertheless he is not totally off pain...frequent uveitis troubles him..and i can find no studies regarding the disease course and its prognosis...unlike in cancer they clearly mention about the life span of affected person,,i hav not gotten any idea about AS in these matters? will we be able to live happily together till atleast we are 60's? or till how long in average am i going to get to live with my partner? any knowledge regarding the prognosis of AS starting at early age would be highly appreciated.

Re: can AS sufferers live a normal life? [Re: stiha] #244654 11/30/12 06:56 PM
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sequoia
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welcome stiha for coming here to try to find information about your partner and his dx (disease/diagnosis). it is very noble of you to try to learn how to deal with the prognosis, whatever it is.

that is the point, you haven't read anything about prognosis, because there is NO definite prognosis for anyone with the dx. none, at all. your buddy may stop this very instant and never progress more in the dx at all. or he may continue with the enthesitis and uveitis, with more damage. prayers that the remicade will bring this under control for him. we have members on this forum, and perhaps they will comment, for whom the remicade was a relief of unparalleled proportions. they were broken before. now they can live a semi-normal life. by that i mean, taking into consideration the damage that has already been done.

we have folks in wheel chairs. and folks running marathons and climbing mountains. often the limits come from ourselves.

exercise and stretching are key to trying to keep the pain and symptoms at bay. sitting around and worrying and such does no good at all. when i hurt the most i get up and move, walk, stretch, listen to music and just move as much as i can. i am fused in parts of the spine and the si joints. can't get up into our son's pick-up truck, but i do not consider that a show stopper.

i have gone on long enough. however, i also read between the lines and wonder if you are having questions by being severely affected by his condition in your own quality of life. we can all relate to that, too.

between partners the good health/bad health is a dance we do to try to make our relationship work sometimes. hey, that happens everyday when neither member of a couple has physical/medical conditions limiting movement, etc.

all i can say about that part is you have done some homework, the rest is up to you. there is no certainty about how much worse your partner will get, and anyone who tries to tell you that is not being truthful. this part is personal to you as a couple and you as an individual.

btw, my hubby has RA, so we are crips together. it is very difficult to cope with, we hate to see our loved ones suffer.

prayers to you both on this journey. you are a blessing to want to understand more.

peace, sequoia

write anytime, and read topics here that are of interest.

ps. the dx rarely causes death, and then as a complication of symptoms. very rare.

Last edited by sequoia; 11/30/12 06:57 PM.
Re: can AS sufferers live a normal life? [Re: stiha] #244658 11/30/12 07:21 PM
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our wise sequoia is right. there is simply no telling. early aggressive disease does not bode well but then again, as she said, there are no straight lines or guarantees.

but this is true with all major factors of life, is it not? we may mate with someone with a great job who is subsequently laid off and then has a touch-and-go income stream for years ... someone who is healthy and soon contracts a serious disorder or gets hit by a bus ... who seems perfect for us but who, over time, is clearly unsuited temperamentally.

just make the best decisions you can with the information you have. it is all that any of us can do. if you decide that this is more than you can handle, it doesn't make you a bad person. and if you decide it is something you CAN handle, it doesn't make you a hero smile you - your partner - all of us - we're just human, so we do the best we can and when (not if!) we make mistakes, we admit it, recover, move on.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: can AS sufferers live a normal life? [Re: ] #244691 12/01/12 08:26 PM
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Originally Posted By: sequoia
exercise and stretching are key to trying to keep the pain and symptoms at bay. sitting around and worrying and such does no good at all.


That is absolutely true. Before I got on Enbrel (about 6-7 weeks ago) I felt depressed, I thought about AS all the time and sat around worried. I couldn't even watch a movie without envying the actors' range of motion, lol.

Now that my pain has diminished greatly, and after having had a long conversation with a long-time AS sufferer who teaches maths at my former school, I can say that my attitude has somewhat changed. It's not that easy, and I still worry a lot, but trying to do stretching exercises every day, lifting small weights, push-ups, etc., and focusing on my school work has helped a lot.

When you suffer 24/7, of course you're going to get depressed, worry about the future, etc. But you CAN'T establish any prognosis with AS. Six months ago I was in pain all the time, suicidal, obsessing about my neck ROM, and now I'm much calmer about it all. When you're in a dark place you forget that light is still there somewhere. Treatments have improved tremendously in the last decade and continue to improve. Who knows what the future holds?

Don't read about AS dramas and worst-case scenarios. It won't change a thing and it'll just bring anxiety. And YES you can still live a long and happy life with AS. But it will take some action on your part. You have to fight against the disease both physically and mentally.

Your partner may find the right meds and exercise plan for him and do a complete 180 in a matter of months. Nothing is lost if you try and keep a positive attitude. Getting AS in 2012 is a lot less depressing than getting it in the 80's I can tell you that.

Feel comfortable asking all the questions you want. People here are great.

Re: can AS sufferers live a normal life? [Re: stiha] #244694 12/01/12 09:43 PM
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Only stats I have ever seen have confirmed a fairly near normal lifespan (maybe a year or two less than average), but a reduction in working life (i.e. greater likelihood of giving up work before retirement age).

But, as others have said, in reality we are all different, and there is such a huge range of possible outcomes you really can't predict.

FWIW, I really don't think my dad was obviously limited in any way, though it may have contributed to his mitral valve problems which indirectly were the cause of his death at 67 - but even that wasn't particularly young in comparison with others on his side of the family, and significantly he never ended up with the cancers that several of his 2nd degree relatives had, so in some ways had far more manageable health problems.

One thing I read years ago about "prognosis" that really made sense to me was the story of a guy who was diagnosed with a nasty form of cancer. As you would, he asked the doctor what the "average" survival was, and was told about 3 months. Very depressing thought. Then he re-thought it and started to research what the "longest" survival was and discovered some people still living after 10 years. From then on, his plan was to do whatever he could to keep himself in the top part of the probability curve and give himself the best chances.

I think thats the way with chronic disease too. We could look for the "average", or we could take control, do all the exercise, diet, healthy living, keeping well informed about treatments and options and retain control with doctors and treatments, etc , and give ourselves much better chances than the "average".


Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
Re: can AS sufferers live a normal life? [Re: stiha] #245572 12/18/12 07:07 AM
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You want the true to life answer? There are going to be years where it is hell. He is not going to be able to move, go to events with you and you are going to get frustrated. There are days my wife has to put my socks on for me!

With that said, there are years that are wonderful when the disease goes into remission. I spent 5 amazing years with my wife traveling the world until my disease got bad. Now, I can't travel and have a lot of limitations.

With that said, my wife and I love each other and I would stay with her through anything. With AS, you need to be sure that you are with the right person if you decide you are going to deal with it.

Its a VERY VERY difficult disease mentally and physically and there are going to be times he won't be able to go with you or will be very tired or moody.

Personally, I think you have to make sure its the person you truly love b/c you are going to go through some very challenging years together unless he is one of the lucky ones who doesn't have symptoms and the disease stays calm.

I would expect the worst and hope for the best. You are going to have to be a nurse some days. If you have any doubts you can handle it, walk away. Someone with AS needs to be with someone who is there 100% through good and bad and never waivers.

The disease is mentally challenging and someone with AS with a partner who isn't sure if he or she can deal with it will make it 10x worse.

Now I will also tell you that if you are ready to do it, he will walk through hell for you if you are there. As a result of my wife standing by me, I would do anything for her. I would pour gasoline on myself and light it and walk through hell if I had to without thinking.

Its a double edged sword - yes, you will have to put in the work and deal with the bad of the disease. With that said, you will end up with someone who will walk through hell for you if you do.

You have a hard decision to make and don't want to sugarcoat it. My wife just cries some days b/c she watches me suffer in pain. Some days she is just upset with the disease but she helps me all the time.

Keep in mind you can also marry someone who is in perfect health who loses their arm the next day or a leg or gets cancer. You need to pick the person based on it being the right person - not their heath.

Re: can AS sufferers live a normal life? [Re: stiha] #245829 12/25/12 09:17 AM
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You're right about work life. I've had AS since early 20s. Worked about 25 years beyond that. Good thing....it's long enough to get full disability and if you pinch pennys you can live comfortably!


Diagnosed with AS December of 2011. Neck fused and ligaments calcified. Taking norco, soma, duragesic patch for pain. HLA-B27 positive. Probably Lupus, and Sjogrens. Raynaud's off Humira for now frown 6 months ...we'll see from then smile lovin" live with adderall!! Hehe and hormones hehe
Re: can AS sufferers live a normal life? [Re: stiha] #245842 12/25/12 10:21 PM
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Stiha- I know lots of AS'ers in their 60's. I'm approaching 50 and have many years ahead of me still. Real love is a hard thing to fine for a lot of people. I'm very lucky, found my wife in my 20's, and we've built a very nice life together. When you love somebody, its scary to think you could lose them early. There's all kinds of things that could happen to him when he walks out the front door that could shorten his life besides AS. If you love each other, part of it all is walking together through all of these unknowns, taking chances, and short life or long, you could build something amazing together. AS isn't everything. At times, it gets bad enough where it feels that way, but you build good things that make you happy and after a while, AS is just a piece of the puzzle of your life. Best of luck to you.


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