Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Please see my msg (was: How has Enbrel helped you?

I'm on week 10 and I think I have a problem.

Since I can not figure out how to start a post (my mind has been cloudy) I'm hoping others who read this can give me some feedback as well.

I started Embrel in March after dx in feb. The first 2-3 weeks was noted with booming headaches - which I couln't determine if it was because of "it" or becasue I started a new job concurrently and there was a great deal of stress around that.

Anyway, I've been in bed with general weakness since friday night. I got mother's day breakfast in bed this morning thank god, since I do not have the strength to get up and stay up. I've finally attahced the laptop and I would like to know, from all others out there on Embrel please.

To make matters worse , I happen to flip through a magazine today which made me concerned - ther was an Embrel ad, with a fairly healthy mountain hiker trekking along... the next page had the typical warnings and the one that caught my attention was the neurological one - weakness etc. Is this what I'm deaking with??!!!

OR ...is it that I pushed myself too much last friday and now I'm paying for it - becasue I worked all day on Friday and then went to work again from 5-9pm and basically dragged myself to the car and drove home totally exhaused from the pain I was goign through being on my feet all that time. Yes on my feet (you may say - what are you crazy?) but that is the job, and I'm afraid to leave it) and I've never felt THIS bad before.

I've had the site reactions to Embrel and have stuck with it so far. I must say there has been some improvement - but with my cloudy head I can not even reason coherently. Is this something anyone else deals with too???

I am scheduled to go to the rheumy this tueday where we will discuss the next med - humira. He's already aware that its not going so well. I called and asked if I still should feel so crappy. He said last time on the phome that if I did not get like a "revelation" (or something like that - I can not remember!!) from the Embrel, then its probably not working so well. Should I ask him about LDN, would that work with embrel or huira or what? He's ok to talk to - read me the riot act for taking prednisone even though it was for only a week.
Boy, I felt good on that and actually played with my daughter - I ran arounf the house!!!

Did I imagine embrel worked a little, or is it supposed to work and I just missed it -it did not with me and I wish it did. I had some improvement, getting up from a seated position, walking without being hobbled over and actually straightening up and not losing my bladder!

Yes I get up everyday and goto work, despite the fatigue and incredible effort I go through.

Plus I get all flustered at work and have a hard time dealing with conflict and confusion sets it and stress is just so... always.

It seems that since I started the new job and embrel I've had bowel problems. Maybe it's stress at not wanting to be in this job... seems to grip me every morning I arrive at work.

I just don't know what to make of it all.

and will Humira be any different.

One more observation, I'm on sunday now, it hurts to sit up, lying down seems like the only good spot. Monday is my injection day - will I be better off after the next injectin - is it just not lasting the whole week.

should I propose 25cc 2x a wk instead of the preloaded 50 once a week. (that was a heck a thing to get used to - I thought I would have no problem injecting but I freaked and had the nurse at work do my injections in the arms - I finally can do my mid-drift - but I can not stand the thigh - it makes me breakout in tears, even thinking about it right now).

Sorry but, I hope to have some others to hear from as a sounding board - i can not always type out a message, but I am reading from the small Ipod that I dont need to sit up to read.

I appreciate everyone sharing their experiences and feel better knowing I am not alone in this thing. Its just very hard to be here alone going through it. My hubby keeps asking me "are you sure this is the right dx?" He seems not to accept it and I really don't expect him to. Seems every time I hurt, he hurts more from someting else... So I guess I keep a lot of this to myself. This whole expericence has been overwhelming for me and I just feel like I want to give up sometimes. I have a wonderful 8 yr old and hubby is caring, but perhaps he's just not wanting to accept the severity of me not being like I used to be. I used to do so much more and this thing has slowly effected me over the last 4-5 years. Perhaps it was best not knowing what it was and I wouldn't get so down about it. I'm sorry really. My house is not clean either.

Thanks for letting me vent. sorry and I hope to gleen more valuable info from the rest of you.

regards to all,

Lucy

Hi Lucy, (I've made this into a new post for you.)

Hopefully all the folks with Enbrel experience will chime in to share their thoughts.

I haven't tried Enbrel myself (I'm on Remicade) but I wouldn't worry about the weakness being a neurological thing. That is rare and I think it sounds more like fatigue that you are experiencing, possibly from overdoing it... but check with your doc to be safe.

I am sure starting a new job at the same time would make it confusing to figure out what is causing some things.

I hope you start feeling better soon!
mig

I haven't been on it either. I hope some that have will share with you. I am bumping this up.

Blessings.
Possi

Hi there Lucy,
I've been on enbrel, and it worked very well for me for a couple of years, without any of the symptoms you're discribing. I was told to check with my doc immediately if I suspected neurological problems. I sure hope you're ok, but you probably should discuss all this with your doctor as soon as you can.
Take care!