3 weeks on Xeljanz update

General
1

Xeljanz is doing nothing for me. I had one great day, I think a combo of weather and residual meds in my system. I'm on day 14 of hardly being able to move. 2 days ago I resorted to 8mg prednisone, because my husband had already missed 3 days of work taking care of me and the kids (plus the new years long weekend and last weekend, PLUS some of winter break). I had the worst flare since I don't know when. I literally needed help walking to the bathroom. The prednisone helped and yesterday I was able to do what needed to be done. I didn't take any pred. yesterday but this morning woke up in pain again, and took 4 mg. I don't take the pred. because it gives me terrible headaches AND makes me super angry and irritable even at small doses.

I'm seeing my doc next week and I think we're going to have to give Xeljanz the boot. My degeneration on it has been fast and severe.

I'm most likely returning to Enbrel, and if possible in combo with Arava.

I had such high hopes for this new med everyone. I'm really unhappy and depressed about it all. I've been on EVERYTHING. Enbrel once gave me a full remission. I want some more of my life back. The last 8 yrs have been a slow decline. We even moved to AZ for 2 years awhile ago to see if it would help me compary to the rainy NW, but it didn't. So we moved back 5 yrs ago. So yeah, I've exhausted EVERYTHING.

January is not a good month for this to be happening. And I turn 41 in 3 days. Blergh....

2

Wow, you have tried everything. I am so sorry. I hope that the Enbrel gives you back that quality of life you deserve. I know beyond a shadow of doubt that stress plays a big factor on this disease. I've had a front seat watching my daughter deal with how to try and keep this disease under control. She has only been diagnosed for a year, so time will tell.

It was interesting to hear about your reaction to prednisone as I think that Lauren also struggled with anger and irritability on this drug. Right now she is only taking ibuprofen and prozac. The anti-depressant has been a life saver for her (so far). When she feels like getting out of bed, she does. That helps.

3

Hi Marietta,
It is easy to feel disappointed when you feel you have exhausted the drug arena.
Just remember, there are multiple combinations out there and there are always new drugs coming onto the market…stay hopeful! :slight_smile:

4

Thanks both of you for the support! I really needed it.

Rustydog, thank you for reminding me about combinations...that is still a possibility and gives me (and my husband) hope. I was so down in the dumps I had forgotten about that possibility. Today I start on Enbrel and Arava, which is a combo I haven't tried before (though I've been on each separately). I'm once again hopeful for good things.

This group is so very helpful for me!