Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group SHOULD I "STOP" THE (((ENBREL)))???

Yes true! I guess I can use that time of stopping to see how my body reacts to me not taking it anymore thanks!

WOW yeah I so know the feeling of having to come up with th co-pay every month! I have to pay $268.00 a month as my co-pay and let me tell ya it is not easy to do =( but hey we gotta do it to live right! So I guess I will keep saving every month just so I can function =(

haha yeah... are you currently on ENBREL? how has it worked for you/>

Dont you DARE tell me I have given up on my life!!!!!!!!!!!!!!! Having AS for more than 30 years....hmmmmm longer than you have been on the face of this earth. Having had liver, kidney and respiratory failure in 97, put on artifical lungs (ECMO)for 2 months, the very last resort in treating ARDS, I SURVIVED. Being on Dialysis for months, all while dealing with the AS. It took more than 2 years to recover to 50% of the self I used to be. Do you know what it is like to have someone wipe your bum at 37 years old for months? Or to have your trach suctioned every few hours? Do you know what it is like to be stuck in a wheelchair with NO movement of arms or legs? Do you know what it is like to give up EVERYTHING you own to pay the portion of medical bills the insurance did not cover? You tell me I have given up???????? I dont think so you ignorant butt!!! I have been disabled since the liver, kidney respiratory failure. My AS plays a part in that as well. I would say I have NOT given up, but dealt with it, and beat the odds.

I hope you get to do what ever it is in life you want to do and if you dont I hope you dont whine and throw a fit about it like you do on here over YOU ASKING FOR OPINIONS.

Where is it that I said you needed to "think again" ? If you are going to quote me then damned well get it right. You are right...I do not know and dont want to know you. Just as you dont have a clue about me. Lets just leave it that way.

I wasnt trying to be mean to you! Nor was I saying to give up or that you have gave up that's not what I said or meant!! But I dont feel that if I put a post up I should be SLAMMED on it and called names!! That is what I was meaning! I was in a wheelchair for 2 months! I just got out of it 3 1/2 weeks ago! My liver enzyme level was extremely elavated to the point that I was told I might be hospitalized and MAY need a liver bi-opsy! I know some what you are going through and I am very very very sorry that you had to go through all that pain and treatmens and problems! I will pray for you! Dont think I was trying to rag on you I just felt GANGED up on after trying to post somthing that I was trueley looking for answers for.... We are all here to help eachother and be support not to rag on eachother. So lets stop the bickering and support and help eachother! =)

Mase,

Ranting over.

I have been on Enbrel a few years. I stopped taking it for some time and the difference was unbelievable. I had to go back on it. I now take half the prescribed amount and maintain fine. I was taking 2 25mg shots per week, then I went to one shot every 3 weeks and could feel the pain coming on after week 2. Now I take one 25mg injection once a week-to-10 days.
The good thing about Enbrel is that you dont build a tolerance to it like other medications. You can stop and start it without a problem, as I have been told by my rhuemy.

hope it helps in your decision.

Bob

Hi Chris,
I know there's a ton of knowledgable people here at kickas, and I love them all, but perhaps this is a better question to be asking your doc?
That being said, if I were you, and was sure diet was the cause of the improvement, I'd be really tempted to try going off it - why not? (Under your doc's guidance, of course.) If you notice a real difference and are back in a big flare again, go back on it. There's only one way to find out if enbrel works for you, I suppose.
Good luck with everything,
Megan (fellow enbrel user)

Really? Ok see that was another question I had. Right now Iam taking to once a week... But seeing how it is sooooo expensisve and my co-pay is 300 a month I was thinking of taking it every 2 weeks so basicaly 2 injections a month is alot more tolarable on the check book and my body... So you take a 25mg once every 10 days and Im taking a 50 pretty much the same maybe I should try taking the 25mg every other week that way I can go long with out having to buy another pack of meds...

Thanks megan! I read a few of your posts in the past and it seemed you had the same things wrong like me to your ankles,feet knee and such where u were confined to using crutches... I was thinking of doing a 50mg injection once every 2 weeks instead of every week to see how my body reacts or maybe try a 25mg every other week that way my dosage pack will last longer and not have to pay the 300 a month co-pay =(

Mase,
My rheumy has been really great about it all. He said there is no sense in taking 50 per week shots) when I dont feel I need to. I have gone as long as 3.5 weeks before getting bad enough where I wish I hadnt, and I think those boundaries needed to be found. He does keep the Rx at 2 a week in case I need to go back to that amount, and some times I do, but rarely.

My main problem these days are my hips. The socket itself has grown outward and my leg bone at the ball hits the socket when I move my leg farther than a normal gait. I am due for replacements when I feel my quality of life is bad enough and the rhuemy and ortho have let me decide when that point in my life is. (great guys!!) They say medically I am ready, but I am not fed up enough to have it done i guess.

All you can do is try it and see if it works for you. If it does that is great! Hope it does cause yes it sure saves a ton in the checkbook!

Bob