Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group ENBREL Side Effects???

Ellyn,

When I went to learn how to give myself the Enbrel shot, the Nurse Practioner told me that some people have called about a sore throat but it went away within two to four weeks. This may not be your case but.....

I am "teeny" too. 5'3' 115 lbs. I also have advanced AS. Maybe it is the stage of advancement that determines the actual Enbrel dose? It is worth looking into. So far, all I know is that I feel better: more movement, better mental outlook, and less brain fog. I have noticed that I am frequenting the restroom more, urinating more than diarrhea and do have more gas and stomach rumbling. (Sorry for the graphics.) However, this could be attributed to female things, which correlated to the introduction of Enbrel. Who knows? It is all so confusing!!! I am CERTAIN of this...the sulfazine reeked much more havoc to my system. I am also on Celebrex...this could have some effect.

Maybe someone here can share the stages of advancement and their experiences with Enbrel.
So far, Enbrel has been great for me with far less side effects than the sulfazine.

I hope your symptoms are temporary....I need my Enbrel bud with me.....

Holly

hhmmmm...Did I hear you say the word "gas"?
I have no pain when taking the Enbrel; however, fighting the "gas" is getting old.
I'm not sure if the gas is related to the Enbrel.....but it is dring me nuts.
GI doc thinks it is the foods that I eat. He put me on a nondairy diet with low fiber foods.
My thougts.....if it is diet, maybe it is the starch. After eating starch, I have gas within 1 hour. Is that possible.? Maybe LSD and NSD folks can help me understand.

Betty

Thanks, Holly
Are you still doing well?? Any side effects? I took the second shot yesterday... fingers crossed!

Ellyn

Your line "fingers crossed" reminded me of my first shot of Enbrel. Since my AS dx, I have tried 20 or so different NSAID's and was allergic to them all, mostly just hives. Then came sulfasalazine with mouth sores, bleeding gums, and feeling so sick I wanted to die. Methotrexate almost put me through the pearly gates, and I swore I'd never try anymore meds. But 3 months later I did. I was given that first shot of Enbrel, and I'm sitting there wondering, heart pounding, scared half to death, what's gonna happen this time? After all, I did just get shot. At the very least, the ceiling should have fallen in on me. Looking back, it had to have been funny. My husband said my face had quite the expression.

Anyway, my fingers are crossed for you, too.

Hugs,

Cindy

I am only one; but still I am one.
I cannot do everything.
But still I can do something;
I will not refuse to do the something I can do.
Helen Keller

Ellyn,

I have felt REALLY GOOD...like almost normal. How about you?

Holly

HI Holly:
Definitely feeling better, and the side effects are at bay. How was your third shot??

Regards!

Ellyn

Has your morning stiffness subsided yet? That was the most amazing thing for me. Waking up in the morning and no rigor mortis.

Hugs,

Cindy

I am only one; but still I am one.
I cannot do everything.
But still I can do something;
I will not refuse to do the something I can do.
Helen Keller

I have been on enbrel for almost two months and just found out one side effect - I am losing my hair. I called enbrel and they said trials showed some people do lose their hair. Oh well, I always keep it short anyway and love the old kd lang look, however, I would have much rather have had it been my choice. The enbrel is working so much better for me than remicade so it is off to the barber for me!!!
Louise

Hi Cindy!
YES!! I am not as stiff as a board in the morning, which is wonderful! I hope that I can tolerate the Enbrel long term. Not pain free, but MUCH more tolerable!

How are you doing??

Ellyn

Louise...that stinks! Have you looked into folic acid for hair loss? Check it out. I have long thick blond hair, and I didn't know that was a side effect. I guess we are all guiney pigs on this Enbrel...eh?

Any other side effects??

Regards!

Ellyn