Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Home frome rheumy visit........not good

Hi KickAS friends.Well im back from my rheumy visit i had yesterday and got my results.Apparently i am starting to fuse on my entire spine.She said my mobility i have now wont get any better but only physical therapy will retain what i have left.........hopefully.She said it is whats known as bamboo spine.She is changing med to sulfasalazine.Said she has seen good results fron it and has to try it so the health insurance knows we have tried all avenues before biologics.The biologic she will try is Enebrel.She said it is the cheapest of biologics and in some works very well.I would have to give myself the Med by injection.......GEEEZZZZZZZ i hate needles.Cant see my self doing that but gotta do what ya have to do.She said med takes 12 weeks to show effect and will need monthly blood tests.Man the doctor visits never end.Also have to get a better physio therapy.Someone who teaches stretching .Also said the AS will eventually burn itself out or stop at any time.

On the brighter side my wife and i had a good 150 mile drive ,was sunny all the way....with stood the trip not too bad.I was a little down after the visit and still am.I had hopes for a fun retirement with my wife.We had plans of things we wanted to do.Kids are grown and house is paid,but now i will be on disability and all has changed.

Well thats about it.You will see me here often as i still search for relief.
Thanks to all for there well wishes prior to my Rheumy visit.Everyone here is a true friend to me.

Thanks

Fonzy

Hi Fonzy, she's right about having to exhaust other med avenues before starting on biologics. Sulfasalazine has been known to have very good results. Ask Mig about it, as she was on it for years.

You'll get used to giving yourself needles. My sweetie is on Enbrel and I've had to learn to give him needles, as you cannot inject the same site too frequently. The usual is both thighs, both sides of the abdomen, then both arms, then you go back to the first thigh you injected six weeks before. It's kind of hard to inject your own arm, so your wife will have to learn to do this, as well as you. It's easy, once you get started.

She's right about the stretching and PT to maintain the mobility you have. But she's not entirely right about AS burning itself out eventually. Some people go into remission for years, and alot of people experience a decrease in pain levels when fusing is complete in an area, but that's about it.

You and your wife can still enjoy a happy retirement together. I know I sound like a broken record on this, but you just may have to adjust how you do things, and how you look at life.

I know it's all very overwhelming for you right now, but I promise, eventually it will get easier.

Hugs,

I agree with Inanna. Life will change, but you can still have a good life. My husband has been disabled for years and still has a active life. I am now disabled but I am learning I too can still do more than I thought originally.
The meds and PT will help. Be patient with yourself. That is what I had forgotten for a long time.

Fonzy,
I am really very sorry to hear that kind of news....But both my hubby and I are on disability and we both thought it was about the end of the world but there is really life after disability.... We know it even if it did take us some time to figure it out!!!!! I see you and your wife like to ride around on good days... now with disability you can take the time to smell the flowers.... Don't give up on that fun retirement.... just work around that AS... I am sure you already know your limits... work around them... I tell folks my social life is doctor visits... a lot may changed because of money ... but you can learn to deal with that... that is minor to the pain you have been hand to deal with ...just replan retirement to what you can handle... We have had to do lots of changing really we have but I can now say it is not near as bad was we thought it would be.... I see you seen a good side already that fun 150 mile ride!!!!!!

Hey as doing shots... here I go again... you can do it!!!! I do ... I am diabetic and have a shot a day...thought it was the end of the world again but it is not hard and lots of times it doesn't even hurt... you get to know the good spots for the shots...LOL Hang in there... I know just how hard it all can be... but this site is here for you (listen to me (Ha Ha) I am so new.. I don't know many here but there has been lots of hands out reached to me already!!!!!)Take care my friend
Carrottop

Best wishes to you, and sorry about your discouraging visit.
Hugs,
Jan

sounds like a lot to take in and adjust to all at once, but as said above, things are often easier than we imagine, just a matter of adjusting.

still a lot to wrap the head around......

sue

Hey Fonz

I felt the same way when I had my Rhuemy visit. I came out of his office kind of bummed. I had already been on Sulfasalazine without good results (bad effects actually) and was really shocked and had not expected him to suggest the biologics.I guess that's not what I expected to hear. After thinking about this path I was about to go down, it dawned on me that in a way it was really good news. All the other things I had tried that did absolutley nothing for me could now be put to rest and finally, hopfully I will be doing something that will actually help. I hope Sulfasalazine works for you. My Rhuemy told me alot of people get excellent results from it. At least now it seems you may be on the right road to feeling better( I hope so!!). Keep us all posted. We are all hoping for the best

Sorry to hear this, Fonzy. I'm wondering what the typical length of time from onset to fusing is. How long do you think you have had active AS? I'm also wondering whether most people have a slow onset of symptoms or a big wallop.

If the new meds work, maybe you and your wife will still be able to enjoy most of the things you had planned!

All the best

Hi Fonzy, I too am afraid of needles, cant even stand to took at them on TV. But I have been injecting myself once a fortnight with Humira for the past 2yrs, I still get a little sweaty & shacky when I have to do it, I'm the biggest sooky la la in the world, but if I can do it, you will master it too. I dont now much about Enberal, but the Humira kicked in for me after 2wks, & after 20yrs of hell, I now feel like I'm living in somebody elses body, Its' an amazing med. I have a friend with A.S. his spine is fused, his ribs now sit down near his hips, He was on Remicade, & what an amazing person he is. He skippers big boats on the ocean, lives life to the full, & is always the life of any party & he does eveything with his two little children. I know every body's different, & the med's work for some & not for others, But dont give up on a wonderful retirement just yet Fonzy. Before Humira I was realy in trouble, could'nt leave the house much, & was unable to do much with the family, Now I'm never home & in a few weeks I'm going to jump out of a plane. Dont ask me what that's all about, (mid life crisis I think). No, I'm going to do it because I can now. I hope I have been able to help you in some way Fonzy & give you a little encouragement. Mez

Hi Wendy, there's no hard and fast answer to your question. How quickly the disease progresses and fusing occurs is completely different for pretty much every patient. One of our longtime members went from completely straight to severe kyphosis and bamboo spine in about five years. I had been experiencing symptoms for the better part of 20 years before damage showed on an x-ray (10 years after my first full blown flare), with a fused left SI and 4 squared off thoracic vertebrae. I've been at that stage for almost 8 years (although there is some small progression in my lumbar area during the last two years).

I don't know what your progression is, but I'd be willing to be that you have had your own unique experience as well, as has Fonzy.

It's one of the more difficult aspects of AS, because doctors cannot point to model and say, "First this happens, then in a couple of years this happens and it happens that way for every patient." Doctors thought that it was like that for too many years (like 50 years or so), so when they were with a patient who presented differently, it was confusing and they didn't think it was AS. Now, they're starting to recognize that each patient is different, but it's slow in happening.

Hugs,