Back when I was stil lurking, I read a post to a woman who's husband has AS. The wife needed help coping with the dx and with her husband as he adjusted to the dx. Lon had responded to her and said, "This disease changes you." Those words screamed at me.

Marty's current flare has lasted for about four years. In that time he has changed. But he is a man of very few words as you can see from his posts. I know that trivial things that people argue about irritate him. He has little patience for that kind of talk. But I know there is more.

Could you please explain how this disease changes you. Sometimes I show him different posts from the site and he'll say, "Yeh, that's what it is like."

Thank you in advance for your help.

Jeanne

Hi Jeanne,
Thats a difficult one to answer it affects us all in different ways.It can change your attitude to life, some people like me become very intravert stop talking about the pain and problems there having keeping it all to themselves. You can become reluctant to go out or be around other people.Depression is a big part of AS.Some people can cope better than others.
Any questions please ask.If you would find it easier PM me

Kevin

Here's what I will say on this.

FIrst life hopefully changes all of us bit by bit and sometimes drastically in a short time.

AS has two factors that have changed me and continue to mold me.
First is my more calm and rational mind that acknowledges that I am dealing with this pain and loss of my body as it was on a dialy basis. It makes me (here's comes an oxymoron) extremely intolerant of intolerance and folks who will rage over or dispute trivial matters. If I can deal with folks rationally and warmly with my aches and sub-par body then why can't other folks appreciate all they have and be patient and kindly towards others. If I'm aware of the benefit of being cordial and civil then why is the fool behind me bearig down on me at 80 mph to get home to watch tv. I have a long fuse for folks who are troubled and a short fuse for folks who are trouble and the difference between tthe two is transparent.

Second when the pain is exhausitng my fuse is short just out of frustration or inability to do something simple. I'm not actuall angry I'm just exerting so much effort and concentration to keep focused on the task that an interruption or even something like a conversation feels like and is work to a level that others don't understand

Hello Jeanne
Everything that happens in life changes you, including living with AS. You have to learn to accept and change your attitude (not always an easy task). And you have to learn to stop feeling guilty about things. Your husband could feel he has spoilt your life together in the same way that I feel I spoilt my son's life by passing on this gene.
He sounds depressed - a common side effect of chronic pain.
He has a lot to put up with - pain and frustration, depression and guilt.
I think it might help him cope with his feelings if he came here more often and read how others struggle. This site gives so much support. And when you read what people achieve it is so encouraging.
I hope he starts to feel a little better and that together you build a life that you both enjoy.
He is so lucky to have such a supportive and caring partner.

Exactly!

Oh, I am *so* with you on this one, Steve!!!

Wow.

Does it make any of you nervous that Steve so hit this topic on the head. Very insightful way to go man!
ETTE.
Darrel.

Yep I am with Steve on that one also.

I have a very short fuse with people who are just stupid or pick on small details.

For example this morning taking my daughter to school. There are bike lanes on the sides of the road so in the morning on the school side of the road you cant park there between 7-9am I was running late so when I arrived it was right on 9am. So I parked in the bike lane as it was after the 9am no standing time. The cross walk lady cracked at me and said I couldnt park there bla bla bla. I said excuse me but I can park there after 9am and it is 9am. She was like my watch says it's 8:58am.
Im like WTF 2 mins. My watch says 9am yours says 2mins until 9. Does it realy matter grrrr all the kids are in class already so it is obviously after 9 and no kids should be riding to school now.
I know I shouldnt have snapped but in the big picture does it realy matter.

This is how AS has changed me.
In the past I would have calmly explained to the cross walk lady but now I just about chewed her head off.
I have a very short fuse for this kind of trivial things.

Shhh... Steve doesn't want anyone to know he's so smart. That's why he has Bruno.

I for one have found this post very touching and insightful.

When I first got AS it crept on to start with and then attaked me very aggressively. I had severe pain which interferred with being able to sleep, walk, drive and work for a relatively short period of time, when compared to the others that have responed to this post.

3 months after I was diagnosed with AS it went into remission by following the NSD. It stayed in remission for 10 years and I am currently having a flare.

I think the intense period of dehabilitation and pain, followed relatively quickly by complete remission taught me some important lessons. That is to say bought me up short!

It has given me extreme empathy for people living with chronic illness in a way you can't imagine if you have never been there.

It has made me realise how precious and fragile life is. To enjoy the good times with every fibre in your being and to struggle on through the bad times, trusting there will be good times ahead.

I was already an optimistic, positive person but that has escalated out of control! I am impossibly upbeat in the face of any adversity because somehow I am strong in my faith that everything will be OK.

I have an overwhelming need to help and support others who are worse off that me. That's what led me to join this site.

I have not had to suffer this disease for the duration others have and therefore I have a very different outlook on things.

It's easy to be positive when you are not suffering every single day of your life.

I want to send everyone a huge hug

I get peed off with the utter triviliality and banality of everyday TV and the people for whom it has become their 'life'. No interest in current affairs, or in watching a good documentary or even in reading a good and well constructed book, but this trivia IS their *life. So, the effect is that conversation is...aaahhhhhhh

Yes, I have a short fuse, as I try to focus on what is in hand, and don't anyone interrupt my thought process, pain of whiplash... Steve hit the nutshell: "...when the pain is exhausitng my fuse is short just out of frustration or inability to do something simple. I'm not actually angry I'm just exerting so much effort and concentration to keep focused on the task that an interruption, or even something like a conversation, feels like, and is work, to a level that others don't understand." Bulls eye SteveC!

Off topic but I just have to say this.
Tink you are an amazing wonderful person. You with the others have helped me in so many ways in the past 2 weeks.
You have patiently listened to my complaints and given me the support I dearly needed.
I honestly believe I dont know how I would have survived the past 2 weeks and still have a husband if it wasnt for everyone here and especialy you Tink.

I never thought about whether it did change me? I guess it did. The point on being on short fuse is right. Pain and less of rest due to the immense pain (sleepless nights, tired muscles, fatigue).
Other than that it made me feel that time is short and lot of work to do. Made me more focused. Made me hurry more. More intense to do the work i set out for. The fear when this disease would strike me, it could stop me in my steps makes me hurry.
I realized that you could kill mild to sever pain with a focused approach. The pain does not go away but it does make the brain feel so
Of course it made me more human, more perceptive to the pain of others. I do not mock any one since you dont know what the other is going through.

What you all have said makes such sense, like on the front page of this site, I've been missing pieces of the puzzle. One by one they are coming together. I never would have guessed that the pieces would come from all over the world, one post at a time. It must be a real struggle for Marty to be as pleasant as he has been lately. My heart aches for him. I will keep your words in mind as we go about our days left together. Thank you.

Jeanne

It's funny, the more I think about this question, the harder it becomes to answer. Here's the thing, I, like many of us, lived with this disease for many years before being diagnosed 8.5 years ago. The most profound changes in me happened after my diagnosis.

I've always had a short fuse and I've always been quite hard on myself (and often others). Now, I realize that I don't know what it's like to live without this AS affecting me. To some degree or other, at least since my teens, it always has. I often wonder what I would have been like had I not had all the unexplained (or incorrectly explained) pain and tension. When I look back on those years and how I was, I'm torn between awe at what I accomplished and shame at my horrible moods.

When I was diagnosed, a whole new realm of emotions reared their heads. I've always lived my life denying fear. Now, it impels me to do the things I love to do. The thing is, it's one thing to live with constant pain, tell yourself it's a dance injury, or you're carrying too much emotional baggage, and once that injury heals, once you've finally let go of all the negative emotions, the pain will go away. Then, one day, you find out the pain will probably never go away. Indeed, it might just make it so you can't do anything anymore, let alone the things most important to you. You might not even be able to work, to provide for yourself and those you love. There's a lot of fear for the future. Being the ornery sort I tend to be, I decided that I would use that fear. I figured that if AS might make it so I can't dance, can't perform, can't sing, can't do all the things that make my life worth living, I'm going to do them all now, as much as possible. My fear for the future trumps my general fear of life, and I use it to propel me forward fearlessly. (In my own mind, anyway )

Anger. Anger is a big part of it and seems to go cheek by jowl with the fear. Longterm pain causes anger. This is truly bad when, like me, anger has fueled a lot of your life. Now, I realize that my innate anger was actually caused by the longterm pain, but knowing that... Once you have the diagnosis, you have permission to be sick, you know? Which makes the anger OK, because it has a reason now and it's a valid reason. One day, it was brought home quite forcefully how unfair that is because the problem with anger is that it infects everything around it. Sure, be angry that you have this disease and the unfairness of it. Be angry that you have to take meds the rest of your life (or make drastic lifestyle changes). Be angry that you live with pain and it impacts everything you do. But find an outlet for that anger that doesn't involve other human beings (a nerf bat comes to mind). This pain is not anyone's fault. The people in our lives, the people we meet every day didn't cause it. So, they should not have to bear the brunt of it simply by virtue of being in the same space at the same time. I had to learn to deal with that anger, to let it go, to accept I have every right to be angry, but I have no right to vent that anger on people who's only mistake is to love me (or have to work with me every day).

Depression. Dear god, it's hard not to be depressed. I don't mean every moment of every day, and certainly, since I started biologic treatments I haven't needed anti-depressants (I have my own theories about that). I've been depressed most of my life, starting in childhood. And I've always beat myself up about it, because really, I had no actual reason to be depressed. I had a truly dysfunctional, but loving family. I had an education in the field that fuels part of my passion. I had friends. I couldn't understand why I was so damned sad all the time (and I berated myself for it). Now, I know that this goes right along with pain and inflammation, and it's been affecting me far longer than the actual pain. Therapy and anti-depressants got me through that.

So, how has this disease changed me? I don't know, because many of my, shall we say, neuroses, already existed. It was the diagnosis that changed me. First, negatively, then, once I began to get a grip, very positively.

I am much more compassionate and understanding of human failing. I still get angry quite easily, but have learned when and where to vent that anger. And I've realized quite recently that the things that used to fill me with an impotent anger, no longer do. They are simply not worth the energy. I live a much healthier lifestyle now than before; eating healthier foods for me, doing pilates, keeping myself moving. I have learned to fuel my passions through the doing of those passions, rather than through anger at what I perceived as lack of success.

I have learned what acceptance truly means, for acceptance was a huge key to much of what I've learned. I have learned to accept my disease, to accept the pain. That doesn't mean I succumb to them, that I surrender (I shall never surrender), but it does mean acknowledging that they are a part of my life, just like singing, just like loving my family and my sweetie, they are a part of what makes up the whole of who I am. They are not all I am. Once I recognized that, it became easier to move forward and let go.

There is so much more and your question must have been extremely well-timed for me, because if I don't stop now, this post could become a tome.

I'm glad Marty has you in his life to stand by him.

Hugs,

Darrel, I was about to say the exact thing. Steve has a way of putting into words things I can't seem to.
Cindy

"Once you have the diagnosis, you have permission to be sick, you know?"


I love this Kat...(haven't figured the fancy quote box thing out yet!)

I've always wondered why it matters so much to me that the doctors finally dx me with something...I need permission to be sick. I get it now, thanks.

Steve really did nail it, so to speak, on this one...
I'm more patient with my kids, and less patient with my husband's impatience with the kids, I'm more understanding of others in pain, even though I don't fully understand mine! I more fully appreciate what I can do, while I'm struggling with the things that I can't do so well anymore.
Jeez, I sound kinda bipolar? But you get the picture.
I'm really getting a clearer picture, each day, of what's important to me. And I'm pretty sure I have the constant pain to 'thank' for that.

PT

Hey Kat, Your first sentence pretty much expains how I have been reacting to this question. Anyways, here we go, I'll give it a shot. With me, my biggest problem, I think, is the fact that I had AS for 20 years before a diagnosis. I had been told that I had RA, at that time there was only NSAIDS. I was an athlete and thought my aches and pains were from that. 15 years ago started the downward spiral. My symptoms forced me back to a Rheumatologist who immediately diagnosed me with AS. Apperantly I let things go so long that the damage was done. Anyways, sorry this is so long I'm not usually this long winded, but this story is the reason for my emotional struggles. I have trouble with acceptance. All those years I was able to work through the changes my body was demanding. The last 10 years has been a constant battle. Things that are the hardest, for me anyways, trying to appear "normal" to others. Accepting the things I can no longer do, hiking, hunting, working doing things on a whim. Then you have the whole marrital relationship that does change no matter what people tell you. My husband retired the same year I had to quit and go on SSD, that's another whole humiliating part, we had plans for our retirement and that has had to all change because I am not able to do those things now. Loosing my "identity" is a tough one. People always knew me as an athlete, a workaholic, an energizer bunny. Now on disability and walk with a cane I don't know who I am anymore. Then there is the pain, oh yes, that's a topic for another discussion. Finding myself struggling with the daily pain now because of the damage that continues after 35 years of this has broken my spirit and can't stop beating myself up because I consider this a weakness flaw of the person I am. Life goes on for everyone around you but yours changes. Relationships change. These are all things that encompas living with AS. There's more, much more, but I think I will stop here for now.
Cindy

Sure does make me nervous.. Maybe it was a very big nail so there was no missin' it either that or I just exhausted my one moment of lucidity and wisdom and there are no royalties or big payday.

Nah I can't be smart. When I got the handbook LIfe and What You Are Entitled Too just before being born, I rad the chapter on Very good looin' or very intelligent. CLearly I opted for very good lookin and have mamnagesd thus far without and inkling of wisdom.

Thank goodness for Bruno then, eh.

Warm hugs,

I used to be the eternal optimist, thinking that anything is possible if only one puts one's mind to it. i am much more of a realist these days. is that the chronic pain talking? or is it me just getting a bit older?

I'm not aging. I paid big bucks for one of them Merlin kinda arangements and once I hit 40 I started aging in reverse so I am somewhere about 33 going on 32 at present. I guess that answers the issue of me being a realisti or not too.

I used to be a pretty happy guy. My Lovely Wife liked to listen to me whistle songs while I worked around the house. She said she could always tell how I felt by my songs. That was when I was younger, and hadn't been beaten down by the AS monster, the CES monster, and the AGE monster. I can't remember the last time I felt good enough to actually work around the house, let alone whistle. I guess that's why I like to hang out in the jokes section. I'm no longer the happy guy I once knew.

dean, that sounds like my husband. he's usually whistling with mookie or singing a silly song. i can tell when he's in pain because the silly songs are the first thing to do. he rarely complains, so its these little clues that clue me in. sometimes all of this silliness would drive me a little crazy, now i just see it as a sign that he's happy. and when he's happy, i'm happy.

here's to whistling again

Jeanne,
Hi.
Tell Marty that all the wierd things he has thougth of and crazy things he has wondered, are quite normal for us AS gimps. Indeed I am changed, this stinking pain has been almost more than I could bear; it has been alsmot more than I was willing to put up with. At times it did not seem worth it to me. It affects me by making me want to be alone, and when I am alone, I shut out God, I tend to sin and I can be miserable. But when i lift my eyes to the thigns that are good, when i decide to express love rather than wait to be loved; I find fulfillment.
I have no idea who I would have been. But I know who I am now, and AS is just part of the man I will be. Marty is more than the pain he suffers. He can dig deep and find a strength to fight on.
I would enjoy exchanging ideas and expeince with him. There is a lot of helpful people here.

But for crying out loud, stay away from Bruno and from Burno's side kick! My goodnes those two are more trouble than mumble and jumbel. I think the guy in the suit is Stephan or Sven or something...
Ah, I love it here.
Lon
Jeanne, you need regualr fellowship with those who are haivng the same experience. Please stay in touch. Beware of Stipehn..

OMG Cindy this post made me cry.
This is so me. I was a national athlete in a couple of different sprots. I have always been the one you could count on to help yo with anything and everything and first to put my hand up if something needed to be done.
My kids are in nippers and for the past 5yrs I have been driving here there and everywhere, pitching tents and standing on the beach for hours on end. Yes I was in a lot of pain but who didnt have a bad back. Now I just cant do this the same as before and I feel my kids are missing out that little bit.

Yes I have to agree with you Cindy
Loosing my "identity" is a tough one.
Probably the hardest thing I have had to deal with on an emotional level.

A couple of sayings come to mind: The only constant in life is change. Life is what happens while you are making other plans.

Nobody plans to grow old with a chronic and painful illness. Nobody plans to get divorced after almost 25 years of marriage or get a cancer diagnosis, either. And these things change people. When I was first diagnosed with AS I was quite optimistic about the treatment protocols and really felt that this pesky pain and fatigue would soon be a thing of the past. I've decided that this is the year I will reinvent myself based on how I am now and go from there.

I am in awe of your responses.

Jeanne

Hello there,

I think it changes us all a bit differently and the degree to which we have AS. So a hard question to answer... your husband will probably identify with different answers, but not all.

Tim

Jeane, I very much agree with Kat. As a man who has been struggling with this misserable disease for almost 40 years, I'll tell you that you can never know how very important you are to Marty. Your attitude toward the AS monster will either enable or disable Marty. That seems like a heavy burden to be placed on your shoulders, but I believe it with all my heart. That burden is and will be made easily bearable by love.

Both you and Marty are fortunate that you have the wonderful attitude you have. In a lot of ways you remind me of my Lovely Wife, who has been there for me all these many years. Of course there were times we both were depressed, angry, and exhausted as a result of fighting the AS Monster. But I always knew that she meant her vow, "... in sickness and in health...", 100%

You need to answer your own question because AS is going to, and has changed you too.

Dean

Wow, Kat.... As ever, you've given me some food for thought. I do sometimes find myself struggling with crankiness, and need to work on some ways of dealing with that.
Steve too. Summed up oh so well.
Thank you for sharing.

Wait, as you said somewhere in this thread, answers from all around the world.... This thought came to mind: KickAS, more than the sum of our parts.

Dean,

You are so right. I've been thinking about my own answer. Funny how the tears keep coming each time I swear I've got myself together enough to try to answer it again.

When we said our vows 25 years ago, we said those vows to God, not just to eachother, with the knowledge that they would NEVER be broken. But, I really thought the "in sickness and in health" part would come in our late 60's or 70's. Little did we know that he had been symtomatic for 6 years already.

I have learned just how much I depend on Marty. He 'fills my heart with gladness, takes away all my sadness, eases my troubles that's what he does.' So when he retreats to the barn, it hurts. I pull back and distance myself from him. But that doesn't fulfill my vows, does it? Being on this site has taught me that he isn't abandoning me. Instead these are the times when he needs a long, lingering hug followed by plenty of alone time for him in the barn. I can't make anything personally. It isn't meant that way to start with.

Our dreams for the furure will have to be amended. Do we plan for disablity now instead of for retirement? I still pray that he will go into another remission period. Those ten years were good ones. I refuse to let AS divide us. What God gave us in this marriage was a good thing. I don't want to lose it. I love him too much.

Thank you everyone for helping me sort through everthing. Your candidness has been instrumental.

May God grant you with His peace.


Jeanne

Hi Jeanne,

Other than turning into a crispy fossil, it has changed me to not being able to do everything I used to enjoy doing. I was another athletic type, now I can't even clip my own toenails.

One way it has changed me mentally, is that I am way more considerate of the environment, and much more supportive for other people's health problems. I always was, but it has increased 10 times over.

During my teenage years, I used to get angry alot. Not like a maniac or anything, but I used to get angry about having AS, and used to tend to think everything happened to me because of having AS. For example if a friend didn't want to include me in just hanging out with other friends, I would think it was because of the AS. I still do grrr. lol. Anyways, I'm alot more laid back now.

Also, during my younger AS life, I used to believe I deserved AS for some reason or another, and it went on for years. Lots of negative things happened in my life that got me thinking that way. Not a pretty picture back then.

Stay away from becoming overstressed. I think this is what damaged me *mentally* for good. During a period of time (in my 30's) where everything was going wrong (including AS), I fell nose first into a very dark area of anxiety and depression. Ever since then I haven't been feeling like myself, starting at about 8 or 9 years ago I suppose. I'm always sick, very sick it feels like, even though I'm physically not. I feel things that normal people don't understand and probably won't ever feel. This hasn't changed me as a person though, I won't let it. I'm slowly making progress, and it has been great progress, but it still seems like it's a long way back out of the hole.

Take care,
James

Hello James,

Depression has stalked me since kindergarten. I always have to be aware of the path it wants me to take and run the other way. It is so easy to fall into that hole and yet it takes soooooo long to crawl out of it.

Jeanne

Well Jeanne,

This is something I'm just beginning to learn about myself. For the past four years, I have also been in a flare, if you will, and my marriage has suffered. My wife would exclaim in exasperation, "You aren't the man I married" which would only serve to further annoy me.

I couldn't see or accept the fact that I was changing but it is true. Chronic pain wears away at your mind and spirit. There are some who seem capable of remaining positive and cheery despite crippling and relentless pain but I am certainly not one of them. It works slowly and perhaps only those around us can see it? Things like irritability, frustration, easily annoyed, snapping at loved ones. The tendency to withdraw both socially and on a personal basis as well are also hallmarks.

After searching for four years, I finally found something that works and I'm rather glad of it. Medicinal marijuana has proven to be the trick for me. My wife now gets giddy and says, "There's the man I married" quite often.

I got my haircut yesterday and my barber told me that the change in my demeanor was like night and day between now and the last time he'd cut my hair (like two months ago or more...I was getting rather shabby). Hearing this from someone outside of my family really hit me. I wasn't aware of it but I had become quite an A-hole, it seems.

Essentially, what it comes down to is this...people suffering with chronic pain are often not very happy about it. Getting on his case will only make it worse.

Perhaps the best option is for your husband to try to remember that just because there is a pain in his AS doesn't give him the right to be a pain in the AS. If there were something for him to focus on other than his own suffering, he would be more pleasant to be around.

Don't give up hope, when he finds something that works you'll re-discover the man you married too.

Chris

You got a handbook?

I knew I got ripped off!

Chris

I didn't notice this trend in you, when we met Chris. You must have been on your best behaviour. So now I'm really curious to meet the man who's become so mellow.

A number of years ago I went through a black depression - really a living hell that I thought I'd never get out of. I wouldn't go for treatment for a long time, thought I could fix it myself - you know, the old pull yourself up by your bootstraps thing. Eventually I got help, although it took more than a year to bring me back to a reasonably healthy emotional state.

This physical pain pales in comparison to that black hole. I didn't want to live then - now I just want to live more. I regret all the things I can't do - hike, camp, canoe, pick up my baby granddaughter without help. I just feel like fighting tooth and nail to get as many of them back as possible. The disease hit me with full force shortly after I started an MBA program - no way was I going to let it make me give up.

What changed me was my mental illness (which I'm thankfully recovered from although I still take a very low dose of antidepressant). I see life as very precious, with or without pain, although I'd prefer the without version.

Jeanne,

So when he retreats to the barn, it hurts. I pull back and distance myself from him. But that doesn't fulfill my vows, does it?

Sometimes we do need to retreat, to pull back and gain objectivity. Don't be too hard on yourself on this. A diagnosis such as this affects everyone in the family, not just the person living with it. We go through the seven stages of grief, really, and you go through them right along with us. You came in seeking understanding of what Marty is going through. You need understanding, too. The spouse of someone with chronic illness takes on a huge burden and that burden takes a toll. Please have patience with yourself during those times when you need to retreat. It's obvious to me that your vows are very important to you, so let me put it to you this way. If you don't look after yourself and your needs in dealing with this AS, how are you going to look after Marty?

You'll find your way through this and come out the other side, I have no doubt.

Hugs,

my stepfather has crohn's. there were many times that he just wanted to be left alone, to just lay on the couch, in the dark (now we know it was uveitis that he was probably experiencing). but my mother has always been the type to "push", the more he'd pull away, the more she would push; the more she pushed, the more he'd pull away. i could sense that the best thing would have been to just let him be for a while.

i think learning this lesson from watching my parents not do it very well has helped me tremendously. often a time-out prevents my husband and me from saying something in the heat of the moment that we would later regret. nothing wrong with giving one another a little space now and then when they need it. sometimes that really is the most helpful thing we can do for one another.

well....if I can remember...I could not get out of bed for an hour, or put on socks...I could not pick up and hold the guitar, let alone play for 15 minutes (it had been my life)...I could not run, or walk fast, or get to work on time...almost fired many times...

I could not get intimate with several girlfriends at times, which helped lead to the ending of relationships...I could not exercise, I was depressed, I went through many docs trying to diagnose me, I did many drugs including Vioxx, Vicodin, pot and beer....I tried no starch diets, fish oil, glucosamine, SOD, SAMe, vitamins....

I argued with my rheumy and finally got on Enbrel five years ago...changed my life...within three days, no pain, no stiffness...got out of bed....felt I could run....

it changed my life, but now I'm worried about side effects, so am getting checked out...but my quality of life was so much greater the past five years than the 15 that preceeded them...

So yes....AS took from me some major dreams and life choices, but led me to others....I don't know the future, but I am more optimistic than I was a decade ago...
Peace
Linc

Kat,

Can feel your warm hugs in your words. Thanks for being there.

Jeanne

Sue

You are right. Pushing him always makes it worse. Thanks for your insight.

Jeanne

Hello Linc,

My husband is considering going on Humira again. I've read that some people have had a lot of success with Remicade or Enbral. My concern is for the side effects. Those are some powerful drugs. Thanks for the encouragement.

Jeanne

Jeanne, they are very powerful drugs and the potential side effects are frightening. Try to look at it from the point of view of real life rather than news reports. Take the cancer risk. If the general public has, say, a .6% chance of getting a certain cancer, it goes up to, say, 1% for those of us on biologics. That means that you have a greater risk of getting hit by a bus than you do of contracting cancer from biologics. My percentages are not the actuals, just what I'm pulling out of my morning brain as an example.

Do the research, learn the actual risks, rather than the fear based ones, and make the decision that's right for you both. I can say that having been on Remicade for the last 4.5 years has been a miracle for me. It gave me my life back...actually, it gave me my life in many ways. My risk of infection increased (as is does for anyone on these meds), but you know that saying about an ounce of prevention. Washing hands with hot water and soap, rinsing them with Purel or some other hand sanitizer, never touching eyes, ears, nose or mouth without doing one of the two hand-washing options, will go a long way toward keeping clear of that risk. During the past 4.5 years, I've had one winter with a very bad chest infection (I used all my sick days in February that year) and one cut on my toe that got infected. I broke my foot and that took longer than usual to heal (which it would anyway with AS). And no iritis!!

As with any treatment, how a med works on me will be different from how it might work for Marty, but this has been my experience.

Now that Remicade's effects are wearing off earlier and earlier, I'm switching to Enbrel. I'm hopeful it will have a similar effect on me.

Hope that helps.

Hugs,

Thanks for the reality check.

Jeanne