Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group broke my back again!!!!.... I hope???

Thanks so much Gay , you have helped just by leaving me this post. it real helps to remind even us old AS Kickers that we're not alone in this. we have friends that understand what we're going through and are always ready to give a helping hand/post when its needed the most.
I didnt know that the BIO'S only worked about 2 years ! no one has ever bothered to mention that to me ! thats good to know..knowing that could help in future decisions regarding treatment. I wonder if the doc's do that on purpose? why would they "forget" to mention something like that to you? Anyway thanks for telling me..
I cant take MTX (Methotrexate) or Sulfasalazine Had a reaction to both of them in the past. Hmmm when i think about it i've had alot of reactions to alot of drugs over the years.
So anyway thasnks again for your support really means alot to me, take care and Remember.....


Keep On Kicking



Martin

Thanks Nonnie, I really hate the idea of suffering with a fractured vertabra again but the idea of stopping the enbrel after only 12 weeks hurts more ! .. Thanks again for your support , take care my friend and Remember....

Keep On Kicking


Martin

Thanks soooo much Kat , i needed that laugh ( it hurt allot but i needed it)

["I've even started thinking about 'acceptable' pain levels. 'Cause pain is acceptable??"]

Well ya know pain shouldnt be acceptable but like you i have gotten to the point where i judge my day by how acceptable that pain was for me and my family? what i mean by my family is , Where the things i said and the way i acted around my loved ones acceptable to me and my faith and was it acceptable to them. All to often we take our frustration out on the ones we love the most . So yes the amount of "acceptable" pain has greater effects on the world around us then we think ..

Anyway thanks so much for your support hon, i can always count on you for a quick pick me up , when i'm down.. Remember....


Keep on Kicking


Martin

Thanks Tim for you support, is it just me or does it happen to others out there also ? Just when things seem to be turning around, looking brighter, and ya begin to let yourself think that your going to finilly give this AS curse a good swift kick in the AS .....ya wind up taking a left hook, whch comes out of no where , right in the kisser !!!
anyway thanks again Remember.....

Keep On Kicking


Martin

Thanks Megan, its really a big help to hear from others, How , where , when did the enbrel stop working for you. how did ya know it was'nt working anymore? thanks again
and Remember


Keep on Kicking


Martin

Thanks John , Did you know that you broke it as soon as you did it or did it take a few days for you to notice the break? thanks again john
and remember


Keep on Kicking


Martin .

Hi, Martin:

I did not know it at the time, but only that night, as I was trying to fall asleep. I made GROWLING, very animal sounds from that pain (the jerking motion of that first dream of falling or skate board shooting out from under...).

One of our members has had success with Enbrel for more than eight years, perhaps by combining this treatment with LSD/NSD enough to modify her dosages enough to avoid developing antibodies (one proposed mechanism). This is still conjecture, but dietary modification should be a primary means of treating AS, IM(ntb)HO.

An mri can help you make the determinations, and YES, osteoporosis is just one of the many resuts of having advanced AS.

Regards,
John

Martin, sorry to hear of your problems. I think the Osteo is pretty common among us advanced ASer's. I have had 2 stress fractures in the last couple of yrs. that have healed on their own, not much fun. One was down low, and the other up between the shoulder blades. As I also have CHF they have never wanted to talk to me much about the biologics, they would'nt let me into the trails because of it. I have been told over the yrs. that I have an extremely high pain tolerance, I have never taken anything stronger than an occasional Darvocet, guess I am more forunate there than some others. Hope you come up with a solution. J.R.

Hi Martin,
I believe that it is common for AS'ers to get Osteoporosis eventually. It sort of goes hand in hand together, after the AS gets really bad. Not everybody gets it though. My Rheumy is the one that Dx'ed me with Osteoporosis, after she gave me an order to get a Bone Density Scan done. They usually want to do it on the hip bone, if not they will do a scan on your spine. My results were -2.5 which equals 25% bone loss I was told. If you get that done it will give you an idea on how fragile your bones are getting. I know what you mean about the pain. If I had a choice between pain from the broken back, or the pain from the AS, it would be a tough call. But by far, I would say that my last vertebral compression has been the worst pain I ever felt.

There are meds out there that can reverse the bone loss, so that the bones become stronger again. One of them is Fosomax, which is what I take now. I just started taking them after putting them off for a long time, because I was concerned about the stomach and esophageal warnings, and I was never really sure that it would be right for someone with AS. I mean I was wondering if the strengthening of bones, would create strengthening of the fusion in the joints. My family doctor got me started thinking that, but now that I realize he's not very good at making decisions about meds outside of general practice, I started taking them. Along with that I also try to get some dairy in my system, and take calcium with vitamin D. I won't know if I am making progress, until I have another bone scan done.

I hope you don't mind this longer reply, I'm just keeping you company while I wait to get ready to see my Cardiologist. Just going in for a checkup is all. These doctors of mine have been keeping me on the go lately.

Oh yeah, The problem I had while taking Remicade, was a pretty bad case of AFib w/RVR, which gave one way ticket to a 3 day stay in the hospital. It felt like my heart went bezerk on me, and I was losing blood pressure. Can't say for certain if the Remicade was the cause, but going in walking, then coming out 15 minutes later in an ambulance, seems more than just a coincidence. I never went back to Remicade after that. That was during my 8th treatment, and a few treatments before that, I was feeling palpitations. Also, this last November, I had my second bad episode of afib, but I was already off the Remicade during that time.

Well, It's time for me to go get ready now. I certainly hope that your Enbrel isn't wearing off. I'm not working now, but if I were, that would be the last thing I would want to have happen. Oops one more thing, Sometimes I had to take muscle relaxers for my back too. I had trouble with muscle spasms, from trying to keep my back still as possible. They seem to work well with me trying to get some sleep as well as pain relief. I hope your able to stay comfortable until your back heals up, and I hope it heals up quickly.
Take Care,
James.

If I made you laugh, my friend, then I'm happy (except the part where it hurt you - that just sucks).

The biologics don't always crap out after 2 years. I know a couple at my Remicade clinic who have been on it for 5 years and it's still working. Actually, they have a neat story. They met at the clinic, started dating and are getting married next Autumn. Anyway, I would think that like everything else AS, it's highly individual.

Many hugs,