Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Never know it works until you have to stop

I've had to stop taking methotrexate for a period before my hip replacement surgery. I've been frustrated with methotrexate because I've been taking it for several years and have to tolerate about 24 hours of nausea once a week after my sub-Q injection. I thought it was working and was worth the weekly misery until I discovered how much deterioration had taken place in my hips, knees, and shoulders. Then I began to wonder if maybe it wasn't working at all.

Until I had to stop! My pain levels are worsening daily since missing my injection. So obviously it is working just not as well as I had hoped! I dread to think what kind of state I would now be in if I hadn't been taking it.

I'm wondering how bad I'm going to be, pain-wise, by the date of my surgery. The pain is making it very hard to do my pre-op exercises.

So sorry you are having to go through the extra pain, in order to potentially get relief. Seems very unfair, and also horrible that the pain means that you can't do as much as you would like to prepare yourself for the op. Know what you mean about the MTX - I had the same when I had to stop NSAIDs. Although I didn't feel perfect with them, and knew I needed more to hit at the disease better, it became very obvious how much they were doing to keep me functioning once I had stopped.

Hang in there. Keep moving as best you can, and I do hope that you have a wonderful recovery and get back to feeling good as quickly as possible.

Sorry to read that coming off the MTX is causng you so much pain. Hopefully your body can acclimate to being off it and maybe give you some relief so you can do those exercises.

I've had phases in dealing with my AS where when I stopped a med tht I thought wasn't working, I found the same thing you are experiencing now. Many times I got a bounce back to less discomfort after the initial trauma of stopping. Hopefully the same happens for you quickly.

Wendy- we know the pain is real, and are sorry that it is worsening. It may help for you to keep chanting...at least I am not like Lonnie, I least I am not like Lonnie.

We sure wish you well in the days ahead.

Metho- gave me such a headache I was in tears.

Sorry you are feeling so bad Wendy. Yes, sometimes we don't know anything is helping until we go off of it. I wish your surgery was tomorrow so you don't have to suffer. Wishing you the best.

Thank you, Cemc. The day after my first missed dose was great - no nausea. After all this time, it was so pleasant! But a week later, I'm trying to decide whether pain or nausea is worse!

That's an interesting thought, Steve. I was assuming I would just get worse and worse but I will be interested to find out whether I might actually improve again as my body adjusts. Thanks for the good wishes.

I'm not sure whether this might be a better chant: "at least I'm a bit like Lonnie"

The chanting idea is quite effective, Lon! Hadn't thought of trying it before. Should be on the list of effective treatments.

Thanks Pea! I'm both dreading and looking forward to the surgery. Can't wait to begin to heal but I'm also nervous. I was trying to figure out what my primary anxiety is and I realize it's two things: I'm scared about having a spinal anesthesia and I'm worried about needing a blood transfusion. I'm carefully avoiding looking up either of them on the Internet to avoid scaring myself worse.

hi wendy when i had my surgery they let me give my own blood to store for surgery. there was three pints of my blood on hand. i only needed two. mike