Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Enbrel & Day to Day Life

Good Day Everyone. I am new here and would like to "compare" how others feel everyday. I have been on Enbrel now for my 10th shot. I have improved quite a bit but not 100%. The mornings I seem to do really well then by 1 in the afternoon I start to get tired and the pain starts and escalates thru the evening. Some days I do really well others not so much. I guess I was expecting to start this medicine and everything would level out but that has not been the case.

I still seem to live everyday on a rollercoaster. How are your days?

I just finished my 7th shot. Alot of my pain and stiffness is gone, but I am so exhausted, all I want to do is lay down and nap. It seems as if I am in a fog, and have a hard time concentrating on things. I am a bit disappointed too. I guess I thought is would make me feel normal again. I felt really good the second and third week, then this fatigue started to set in on me.

Bax1 it is good to know that someone is experiencing the same thing and I am not alone. I did ready studies that after the 3rd month that the fatigue can fade away or not be so intense. I will say that the overall relief is nothing I am willing to give up at this time. best of luck to you!

Hi and Welcome

I'm on Humira rather than Enbrel, but I'll share my experience.

It has helped me a lot, but I do still flare.

Right after my first shot, my bowels improved remarkably. The first week was great, but during the second week I could feel I was going downhill a bit.

But the summer was a lot better. I could stand, I could walk, with my feet much better. I was only constipated for a few days before each shot, instead of all the time. my SI joint was better much of the time, not perfect, but better.

I started the Humira at the beginning of June. I had a flare mid august (which is always when I flare scary bad) that Humira couldn't handle and I had to go on methylpred for 10 days (4 mg pills (6 the first day, then tapered down to 5, 4, 4, 3, 3, 2, 2, 1, 1). That broke the flare.

I flared around thanksgiving (shin splints, my lower arm on the ulnar side felt like shin splints there too, and a few other aches)…..last week my SI joint spazzed out worse than it has since august: I was sitting on ice for 3 days due to that. But then I got cortisone injections in my cervical spine facet joints and that little bit of cortisone coursing through my veins was enough to help my SI joint out. I was constipated for a few days before the SI joint spazzed out.

So for me, in between flares, the Humira helps a lot. But I do still flare…what's up with that! But the flare at Thanksgiving was pretty minor, and even this flare with my SI joint, I wasn't screaming in pain like I used to before Humira, it was just stiff and painful and sore.

So, yeh, the biologic does help, but it hasn't been a cure-all.

But I'm hoping that its slowly healing the gut, and maybe with that, I will continue to improve? and stop flaring? that would be nice.

I gather that this disease is different for everyone it sounds. I don't know anyone personally that has it. I have no gut involvement. I have taken NSAIDS for 25 yrs on my own(over the counter). Fortunately my stomach is no worse for the wear. I don't under stand the term " flare." My pain is consistent all the time. It has gotten worse over the last couple of yrs, but it stays consistent, no up and downs. All of my pain so far has been from the belt line up thru the Neck. I have had no pain in the SI joint, but in the last couple of weeks I have had some burning in the muscles across my SI joints. I have had some odd things going on since I started this medicine, but as of know I too think the relief is worth it. I am just hope that there is an adjustment period and things will get better. It feels like some days that there is a war going on inside my body. It like those muscles are trying to stiffen up but they cant.

Hello Bax,
I've been on Enbrel for the past 4 years and I'm now trying to wean myself off it.
Same as you, for the couple years previous to starting it I didn't really have flares, more like consistent pain & fatigue that gradually got worse over time. Now that the inflammation/pain are down to a low level, it's much easier to notice when one part of your body starts playing up.
I didn't think I had any stomach symptoms either, however going on the No Starch Diet made a huge difference, so I'm a firm believer in the gut connection even without "apparent" bowel problems.
As for the odd things happening since you started that drug, what sort of things are you reffering to ?
Be sure to report them to your rheumy, the side-effects to Enbrel can be very serious, you don't want anything to get missed !
Merry Christmas !!
Marion

Thanks for your reply Marion. How long did it take for your fatigue to subside after starting the enbrel?

As far as odd things happening. prior to starting the enbrel during the second week I developed tinnitus it has been with me for the last 5 weeks and hasnt stopped. Same with planter fascitis. I have never had that before either. I developed a pretty bad stint of carpal tunnel, it seems to be subsiding a little now. Prior to starting enbrel. I have never had any pains below the belt, now I have a consistent burning pain in the muscles across the SI joints. I doesn't extend any lower, it localized in that area. I have occasional shooting pain in my left knee and foot, never had that before. I also have occasion shooting pains in both ears. The type of pain that you have when an ear infection occurs. It very brief then gone. It just has me kind of freaking out.

I called my Rheumy and talked to her about the excessive fatigue, she encouraged me to keep trying the medicine longer. I have an in office appt with her on Jan 8th

[quote=Bax1 It feels like some days that there is a war going on inside my body. [/quote]

As different as we may be, this is a statement I often say. It really does feel that way. It used to be me against my body, now its Humira and me against my body

i also am planned to be put on enbrel in days, therefore would very much appreciate if others on the drug chimed-in.
thx in advance.
and a happy new year.
m

I have seen a dramatic improvement so far. I have been in pain at my knees and upper back, all my muscles are so sore. The doctor said this is fibromyalgia and doesn't want to confuse the two and over treat. The Achilles and lower back have overall improved. I have lost about 13 lbs in 2 1/2 months without trying. The fatigue is still there. I am trying to remember that in the winter months till February/March I get real bad. I live in Florida nad we are still in the upper 70's /80's, but there has been an overcast. Weather I do notice a difference.