I know I’ve been reading these boards awhile but there are still questions I have and am hoping someone can help.
For sure I am getting off the pred because how else would I know if the meds are working? Is that correct?
I figure the meds are working pretty well. After all, I am now completely functional. Who cares about a few bad days. I am no longer so stiff in the morning; Last year I could hardly walk to the kitchen in the morning.
Is that the meds??
Otherwise, I couldn’t be happier and I am signing up for the Y-me walk on Mothers day again this year. Last year I was in so much pain and I was so swollen and I like a dummy walked the 3 miles like that.
Never, never say that your health is not as important as anyone else's. You sound better than me, but pain is still pain and you might be fine for months or years and then have it all flare up again. If it is making you feel down or confused, you should still speak up. It isn't a comparison game. Even at my best with this, I've had considerable pain and you do have to be alert to whether everything is under control.
So ask questions. I hope others will follow your example no matter how good they might feel they are doing in comparison to someone else. That's how we all learn.
Regarding what you said about the chemical smell, I don't think that's normal and might be a sign of an infection or something else. Is it discolored or do you have any pain? That's worth asking the next doc you see.
I'm happy that you are in the state of better not worse. It overjoys me to hear when someone is doing basically good. That gives me hope.
Being able to get off the Pred is everyone's goal. But it sounds like you are afraid of having more damage occur and not being aware of that happening. I guess the best way to ensure that is discussing the results of every bloodwork and having periodic xrays. Also, if a particular joint is causing problems repeatedly, then check it out. For some people it is a particular joint that causes a problem, like their foot or their shoulder.
You are just being proactive. That's awesome! In the meantime, you provide a lot of support to others which I entirely appreciate.
Some foods can change the color and/or odor of pee, most notably asparagus. Vitamins too.
From Merck Manual: "Changes in the Urine's Odor: The odor of urine may provide clues about certain diseases and conditions. The odor is usually stronger if the urine is more concentrated, as occurs in dehydration. The urine may smell foul in a person who has a bacterial infection of the kidneys or the urinary tract. The urine may smell sweet in a person with uncontrolled diabetes mellitus. The urine may smell musty in a child with phenylketonuria."
If it were me; my ultimate goal would be to get off the predisone; period.
I've heard too many bad things lately about long term steriod use. I'm only 36 and already have osteopenia in my hips and spine; and they say it's as a result of mediations I've taken for my RA over the last 13 years. AND; I've only taken it off and on over the years. Granted I've taken plenty of other things; but it's the predisone you hear the worst long term effects from.
You've still got a lot of wiggle room with MTX. I've been up to more than twice as much as you before.....now down to 20mg a week..exactly twice as much as you Humira and a good bit of MTX has made it possible for me to go without much predisone at all over the last 4 years. Maybe that's question to talk to your doctor about.
As far as the pee goes, it definately smells like a chemical. I am sure I have no infection because I have had those and I could tell its not that. The color is normal. I have no pain at all. It just last a day or so. Like my system is getting rid of something.