Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group update

I'm sorry not to answer anyone's posts now that I'm home, but I'm not feeling up to much. Thank you so much for your posts, your thoughts, your support, your friendship, your prayers. With all that happened to me, this story could have had a different ending. The only night I actually slept in the hospital was after hearing Lori read all your posts. I don't have words to say how much I appreciate my KickAS Family.

Life without Enbrel is awful. And I've only missed 2 injections. My iritis has flared more in both eyes, and the joint pain and stiffness are almost as bad as my pre-Enbrel days. My back, hips, neck, and shoulders are burning. Even my fingers and toes are throbbing. I'm taking Vicoden ES every 3-4 hours, but it's not cutting the pain. I'm still doing my flexing, stretching, and ROM, but I can't stand up anymore. Walking hurts SOOOOO bad. And if I move in bed, I wake myself (and everyone else) up screaming. Maybe I'm just a big wimp. Enbrel started working right away for me, and it looks like it stopped working the same.

My rheumy called Fri, he was out of town, but contacted me when he heard what had happened. I have to stay off the Enbrel until I get an all-clear on this infection. I told them I was sure the Vicodin would be fine for pain, but it looks like I'll be calling back Mon. On Thursday I have my big appt with Cleveland Clinic. It was arranged a couple of months ago. It looks like they'll see me at my worst! I'm in the process of changing rheumies due to insurance, so maybe it's for the best that they see me like this. My follow-up on the infection is Friday. I'll probably be in great shape after a trip to Cleveland the day before.

Now here's my question for the experts: I take Flexeril 10 mg at bedtime. It has really helped with the muscle spasms. But that was while I was on Enbrel. It's not doing much now and there's no doubt that I'm having major muscle spasms. Would a bigger dose help? I don't want to take more Vicodin, as I don't want to overload my liver with tylenol. I'm thinking that maybe more muscle relaxer would help. I'm looking for advice for today. How much is too much? Should I take it through the day, or just more at night?

It has taken me almost three hours to type this. And my hands are killing me. I guess I should have shut up long ago.

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

Hi Cindy,

I don't have an answer to your question, I just want to say I am glad you are home and sad to hear you are in so much pain. It is propably it good they see you at your worst though I hate to see you suffer so much just to show them how you really are without Enbrel. I am hoping your infection clears up soon and your happy Enbrel days are back. Take care Cindy. You have been through so much it just not seem fair. Keep us updated on your appt.

Debbie

There is no drug stronger than a good attitude.

I was told by my doc that I could take up to 2 ,10 mg of Flexirl. When I use to have horrible neck spasms I only took 10mg and it knocked me out. It worked great but it made me very grumpy the next morning it totally changed my personallity.

Hi Cindy! I'm glad your home now but sorry to hear your still in so much pain I don't want to give any advice on meds. as I think you should ask your doctor. The only thing I can say about my experience with Flexeril is that I always tried to take them at night because they would make me so tired. It was also harder to drive while on those. I could never take them more than a day or two anyway.
You may be right about your appointment at the clinic, it could be a good thing for them to see how hard it is for you while off Enbrel. Everything happens for a reason I believe.
I do hope you start feeling better soon and I know you will once you get over this infection. Try to stay positive.

Sending you my best wishes
Kathy



"The most beautiful stones have been tossed by the wind and washed by the waters and polished to brilliance by life's strongest storms."

Hi Cindy - I'm sorry you are still in so much pain. I hope your infection clears up quickly. I take flexeril but I have the same problem with grumpiness if I take too much. And I can only take something like an eighth of one of the tablets. I got a new prescription and the pharmacy gave me generic. (I can usually tell the difference without looking). These pills are worthless and the only effect I get is the feeling grumpy without any relief. Good Luck. Love - Helen

Cindy, glad to hear you're on the road to recovery, albeit slow and painful. As bad as it is without the enbrel, be extra sure your infection is gone before starting it again. I've stopped taking MTX due to chronic infections although none of them landed me in the hospital. I got infections even from minor scrapes/cuts as well as systemic infections. I know some people don't have this problem but for some reason, no matter what the dosage, it affects me this way. One thing I did was make a kit of antiobiotic bandaids, triple antiobotic cream, h peroxide, etc. I always had to be sure to clean even the most minor paper cuts and keep them bandaged with cream for a week. This helped me stay out of trouble but it was the other systemic infections that made me have to quit the MTX recently. Last year when I had surgery, the NS made me stay off it for 3 months post-surgery and given that it was my brain, I was scared enough to comply. Anyway, hope your infection clears quickly, but just be really sure it's gone as I had them come back repeatedly even though things looked OK. Nothing to mess with as you know. Best wishes to ya!


This bunny Kicks AS !

Hi Cindy,

I am sorry to hear that you are going through so much. I thought that once you got home from the hospital things would be getting so much better. I was not using my brain. I hope that you will get the all clear sign about your infection and start the Enbrel up again soon!

Take care and huggggggs,
Lisa

KickAS is more than a support group...it is a family!

CIndy it took you 3 hours to post this. Talk about tough. NOthing not even Bruno on his worst day is getting me to sit and enter a post for three hours.

Sorry you feel so doggone lousy.

All I ever think is how can that wonderful lady who made my girls favorite "blankies" be feeling so lousy and keep roooting for ya' to get better soon.

 
stevec-they also serve who stand and wait

It sounds like this could be a rough road for you Cindy, seems like you just can't get a break. As odd as this sounds it may be a good thing that you are at your worse when they see you at Cleveland. Then maybe you can get some action. Best of luck and lots of thoughts and prayers coming your way.

Hugs

Simone

Cindy, I'm so sorry you're in such pain. It must be such a shock to your system to be feeling all of this after the relief of the Enbrel. However, as Kathy said, perhaps this is for the best as you go in to the new clinic. I can only hope so, anyway. Take care of you, honey.

Hugs,

Kat