Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Enbrel Study "new thread"

Dear Cindy,

I'm sorry you are suffering so ... it certainly does get to you, doesn't it? I wish there was something I could do to help...

Here's hoping you can sleep restfully tonight,

Sharon

Well I missed the whole last Enbrel posting so I guess it's okay with me! Ever had shots in your knees Cindy? It sure helps me. I realize I can't have too many and it won't be effective anymore but I just couldn't stand it anymore. My school isn't very handicap friendly although I am sure I could raise a stink if I wanted to! Human rights and all I suppose? Would rather have burned my bra in the 60s than have to go for handicap friendly campuses! Or is that campi? Crap anyway! :) Oh well, mustn't be bitter now should I?

"Music Is Healing" And "SOOTHES THE SOUL"

Hi,

The way it is with the Enbrel study, I can't add any more drugs, such as steroids, antibiotics, NSAID's and DMARD's.

Steroid injections were offered to me by the local pain clinic. These are people who have never heard of AS, and asked me what it was and how to spell it. But, according to them, steroid injections are the ONLY treatment for my pain. They are safer than narcotics. I didn't buy that. Besides they've yet to consider how many joints I have that are inflamed. And what if something goes wrong? It may be bad, but I can't afford to have it any worse. I have problems with steroid eye drops, if I have to use them very often. I can't imagine how my body would react to a whole bunch at once. I was also offered oral steroids, but I can't afford to gain any more weight. What homework I've done tells me that I'm not ready for steroids in any form yet. And I'm looking for a long term solution, don't think that is steroids.

So when the pain gets me to where I can't get around, it's back to the wheelchair. Most stores and public buildings are reasonably accessible, and my home is getting there. And I've come to terms with it, and a wheelchair is not the end of the world.

Hopefully the Enbrel will continue to help me. So far it's been pretty good. I've been able to get out of bed every morning and get dressed, all without help. Most of the time, my joint pain is at tolerable levels, and I am sleeping better at night. I'm not as tired as I used to be, but my energy levels are about the same.

What an adventure this AS has been!!

Hugs,

Cindy

I was on Embrel for two years, LOVED IT. I even went back to work. I have been off now for almost a year. Elevated liver enzymes. Bad Rash. Alot of weight gain. I had Lupus like symptoms. My Rhumey thought it was best if I went off. Since I have gone off I had to quit work again, And now I am in a constant flair. I am so miserable I don't know what to do. I am back to being helped getting dressed, using a cane and a walker, and the pain is so severe not even the percodans I am taking touches it. I have been to two Rhumeys not one can help. I am going to try to get to a pain clinic, but my liver is not improving. The enzymes are off the charts. If I could get the diabetes and the liver under control they would like to start me on Remicade, Can only hope a miracle will happen. Best to you all. Rose

Was the elevated liver enzymes due to the Enbrel. Did it take a while to show up or was the doc concerned the whole time that you were on Enbrel? Was the weight gain and Lupus like symptoms also due to the Enbrel?

My daughter had a bad cough and now I have it. I lost my voice several days ago. I did not know if I should report this to the study doc. Was afraid they would take me off of the Enbrel. During the time that you were on the meds, did the doc every say anything about going off them when you were sick?

Betty

We have a lot of blood work done, not sure just what they're checking for. Because this is a study, we're not any tests results, or even what the tests are. Enbrel is the only thing I have taken that really helped. How you are now, was me before Enbrel. I dread the thought of ever having to go off it, but I figure it will happen. I still have that wheelchair, but I'd rather be able to walk. I hope things improve for you. And miracles do happen, I'll pray that one happens to you.

Hugs,

Cindy

It's been 8 weeks officially. My GP was concerned about me becoming addicted to narcotics, so he wouldn't prescribe pain meds. But the unthinkable has happened, I'm now addicted to Enbrel. I feel a little spurt of energy when I wake up in the morning on Shot Day. I can hardly wait to get that needle. Life is mostly wonderful. I get out of bed every morning without help, and dress myself and then do interesting things like laundry and painting. Of course I'm addicted. I'm still having trouble with short term memory, but maybe that's a blessing.

I go back to the study clinic Wednesday, to get another month's supply of my drugs. My problem is I'm still not able to drive. My hubby goes to work in the morning, after being laid of forever, and I am going nuts trying to find someone to take me. I'm offering $100 to anyone who'll give provide me transportation, any takers?? I'll let you all know how it went, if I get there. Don't worry Roger will take off work, if he has to.

Hugs,

Cindy

Cidny

Glad to hear that you are doing great.
I know what you mean, I don't know what I would do without the Enbrel. Yep, I'm hooked on Enbrel. That is the reason that I did not notify them when I got a cough this week and lost my voice. Same thing happened to my daughter so I just prayed that it would pass before developing into something bad. My next appointment is Thursday. That will make 4 weeks for me.

I'm still doing great. In fact, it seems to be getting better all the time.

Betty

Betty,
You really should let the experimenters know every little thing. It might be important. It might be a side effect of Enbrel. Etc. Their study won't be valid if you don't give them full information, and this could conceivably hurt others down the road. Just something to think about...

********
Kristin

TODAY IS NOT A DRESS REHEARSAL!!

True...I have an appointment on Thursday. They will check lungs, liver, etc. with all the test that they do. My daughter had the exact same thing.....cough, but no ill feelings...so I'm sure that it is not Enbrel.

Betty