I "hear" all you guys saying how good prednisone is. Again, I could be clueless, but I didn't see the benefits that you are all talking about. I started out on methotrexate and prednisone but after several weeks my hair started coming out, way more than it already was. So my Dr told me to stop the mx and increased my pred to 20/day. It took almost a MONTH for my insurance to approve enbrel, and in that month my feet, hands, and knees,(mostly feet) got so bad I couldn't walk by the end of the 2nd week. In the past year, he has put me back on Pred several times, but I finally stopped taking it altogether since I couldn't "feel" anything different. What's wrong with me? That is amazing Nancy. I wonder if you have the right diagnosis. I have never heard of someone with ra not responding to prednisone. I know you get a higher tolerance to it over time. That is so depressing. My rd said that responding to prednisone was almost a "requirement" to be diagnosed with ra. What do I know? I will be interested in seeing what other responses you get.
I seem to respond well to pred even with a low dose of 5mg. Most days 5mg does not feel like it does it's job, but that is all I have to take until I go back to the doc. I do better at 10mg but, I do not want to over do it. Plus I will run out of pred faster if I do 10mg.
I can tell the difference of when I am on pred and not on pred even before just taking only pred.
I was first interoduced to pred when I was put on Arava. I was put on arava and then later the RD put me on pred with my arava. I could tell the difference. I was able to do more things and felt better then when I was just on arava.
MTX helped me along with lossing more hair, but so did Arava.
When I told my Dr how I felt about the pred. he said, "imagine how you'd be feeling WITHOUT taking it." I felt like saying " I woudln't know, cuz I've never had RA before!!!) I had only been diagnosed at that time for three months. I knew absolutely NOTHING about RA then, and I guess I don't know much more about it now. My ra factor was 256 when tested. Maybe I was expecting too much from it? He hasn't pressed the issue with me, but insists that I at least take the Naproxen. Maybe I should just shut up and do what he tells me. He might be afraid I'm going to crack up or something. I just can't get over how great this forum is. I had absolutley no one to talk to or ask anything up until now.Believe me life is much more mangeable with pred. If not for pred I would not be able to do half the things I am doing now. I know in the near future I will have to come off of pred, but hopefully I will be on be on something that works similar to pred or even better then my 5mg I am taking now.
Nancy,
I've been where you are, we all have and it's a rough road coming to grips with what is happening to you (us). I started out with the pain in the hands, feet, knees, shoulders......My MD put me on Pred 20 mg/day for 10 days and Naproxin my symptoms got a lot better after I went off the Pred I started to hurt again. it took a month or so of this and carpal tunnel symptoms before I finally got to see a RD. He put me on Arava and finally I'm being weined off of Pred. Today I went back to work after being off most of the summer. (I work at a school). The more lifting and staying on my feet the more it hurts when I stop... I'm fine as long as I keep moving. After I stop and sit for awhile I get realllllllly stiff and start to hurt.
Be careful with the Pred and the Naproxen my RA says the two together will hurt your stomach.....and it does....take some Zantac 75 over the counter. This disease is a double edge sword...what helps you will cause a problem somewhere else....(i.e. Arava and Pred causes high blood pressure) Now I'm on med's for that. Check your BP cause I didn't even know it was high, didn't feel anything except a little headache.
After going back to work full time and hurting in the evenings like I have I've found one thing to be true....
You know you have crossed the line to old age when after a shower instead of putting on Bath and Body Works lotion you are dousing yourself with Ben Gay.....lol....
It's either laugh or cry......i try to laugh
Feel better
Kat
Nancy, I also get very little relief from pred. It may be due to my having a severe case of RA (ra factor 1039 and I waited too long before going to Dr.) plus if I go up to 20 mg or more, I have weird side effects, as in anxiety, fast heart beat. I am on a 15/12.5/10 rotating weekly. It helps some.....but not a whole lot. I take it anyway, as every little bit improvement is better than nothing. I take naproxen, too. Doesn't do much for me either.
Unless a med makes me really sick, I take it. Often its the right combination of meds, that will work.
Don't know if this helps you any. Just wanted you to have something to compare with.
I was on Pred, but since the 17th I AM PRED FREE! Yeehaw! I am so excited, since I have been on it for almost a year (20 or lower the whole time.) I have been trying to get off of it for almost half a year, since it can have bad side effects. A lot of the side effects I can ignore, but the Prednisone sounded pretty crazy. It also made my face very round, and I gained weight. I am now hoping I will loose a little. I am already down 1 pound.It was the first medication I was prescribed after being dx years and years ago; which is often the case. My doctor called me two days later to check on me and I told her I could not believe the difference. I was like a new woman. After months of hardly being able to move I felt almost normal again. It was amazing. She wasn't surprised at all.
I'm off of my normal meds for RA due to that bronchitis infection...but the predisone pulled me through the last week. For me I can feel a difference right away. I'm out now...and certainly wish I wasn't.
I too however seem to get the round face Butterfly spoke of....and I want to eat like a horse which is not like me at all. It's a small price to pay occationally though to get me through some rough spells.
Luckily for me I haven't had to be on it long term. Just short courses here and there. I'll agree it's the devils drug to an extent. Too long on that stuff and I could just about tear your head off for looking at me wrong. Makes me mean as a hornet in a blink of an eye. I hate it to be honest....dread taking it; but there's been times when I've begged for it too. Go figure.
And Nancy....there's nothing wrong with you Honey. All these medications effect us differently. It's good for us to compare stories and discuss things; but keep in mind that we're not all alike.
I only had a 6 day pack,ran out Tues. and I felt so much better on it.By the second day I was realizinf how sick I really was cause I felt so much better.Now no pred. and that sick feeling and pain is back.I hate you get no releif from it.Lovie, I don't know why but somehow it makes me feel better that such a sweetheart as you and with such discipline and positive attitude can describe just how pred. makes me feel. I hope you get back on the right meds soon Lovie. The pred. got me out of my flare and the IBS is keeping me from gaining the weight, but all the cravings and mood swings are still there. I can't wait to get off it but I know I will flare if I do. Thanks for making me feel like it is not just me not being strong enough to ignore these side effects! Big Hug to you and everyone on this board. me, 15 mgs of daily pred doesn't do much. my doc wasn't too thrilled about going higher..despite knowing that i had no problems with any possible risks of being on it (i definitely do not worry that it may cause osteoporosis someday for me - already have it) but for me the only thing I really noticed was my moods on it...i'd have not cared if it turned me into a witch....but turning me into a weepy willow...can't handle that.