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sharpiessave
07-03-2011, 08:43 PM
My body loves 25mgs of Prednisone. Other than the weight gain and the manish hair growth, my body absolutely thrives on 25 beautiful milligrams. But that's not ok with my doctor, so we keep trying to taper. I'm supposed to go down 5mgs at a time, for two weeks.

4 1/2 days ago I got down to 15mgs. My body is not pleased. Along with the joint pops and pain, I have this weird pain in my back. It's under my right shoulder, just up under my ribs. Everyone said that burning sensation would go away when I had my gallbladder removed, but it didn't. The day after this most recent taper I started having abdominal pains. It hurts at the very top of my stomach, and right in the middle. When I press down on the spot it feels hard, unlike the rest of my fluffy self.

I've been on varying doses of pred for about 2 months now. What I'm wondering now, and what I'm going to call my Rheumy about after the holiday is. . . How long is too long, steriod-wise? I know this stuff's not good for me in the long run. And if 25mgs is what makes my body happy, can I keep it, at least 'til the Plaquenil kicks in? I've tapered down to 15mgs 3 times now, and each time I end up calling the doc, who has me bump back up to 20, then try to taper again. 20mgs is cope-able. 25mgs is heaven, or as close as I can get to heaven within the clutches of The Mess.

Can I have your prednisone stories? Of course I'll end up doing what the good doc says. But I guess I need more knowledge. I guess I need to weigh how bad the drug is for me verses how good it makes me feel.

Thanks for your input guys. It always helps.

steve.b
07-03-2011, 08:54 PM
brain fog stops me from recalling how much i started on.

i just wanted to say, i am hear to listen.

sharpiessave
07-03-2011, 09:11 PM
Aw, thanks Steve. I know you're having a rough time right now, and it's awesome of you to let me know I'm heard. You're a stand up, top notch kind of dude.

lovedbyHim
07-03-2011, 09:14 PM
Hello Dear oh the tapering is always a painful time for me. I am down to 5 mg daily. My body screams for the steroid as I back down. You must be careful as organs can become inflamed when backing off. I have had pain in that area just below sternum. It gets hard as well. I had to watch for pancreatitis as it hit me there. The stomach is there too.

I believe my docs main reason for backing me down to 5 mg was so I would not become resistant to their ability to fight inflammation in the event something big came along.

Backing off is very rough. Keep close contact with doc. I hope you will be okay & that the Plaquinil kicks in real soon. It is a wonderful drug.

I hope this makes sense as I am wacky today.

tgal
07-03-2011, 09:16 PM
Sadly I am no help in this. I am currently on 40 mg down from 60 since I have started on the methotrexate. I have the lovely Cushing's Syndrom brought on form steroids (daily and the shots way too often). Anything less then 40 and, like you I fall apart. My doctor hates it but is leaving it where it is because so far I can't get lower. If you find an answer just let me know!

ritzbit
07-03-2011, 09:49 PM
I wonder if any of your problems could be from going down? I felt like crap when I went down because I had side effects of coming off them after being on a lot. My doctor told me too wait and things cleared up. Thats what happened for me anyway.

sharpiessave
07-03-2011, 10:06 PM
Tammy, you make remarkable sense for someone who's had the day you've had. My local hospital has a free blood work day next week, so I'm going to have them check for everything. Thanks for the pancreatic heads up. I hope your innards quit jacking with you. Stupid innards!

Mari, how long have you been on the pred? And how long were you on it before Cushing's came? And do you have a beard too, lol? Mine's more of a goatee, actually.

Ritz, do you remember how long it took you to get over the negative side effects of coming down off the pred? Right now I can't imagine my life without it, but I'd love to get there someday.

lovedbyHim
07-04-2011, 02:34 AM
Coming down from them sometimes took me weeks I hate to say.

Peridot20_Gem
07-04-2011, 08:46 AM
Hello Sharpie,

Sorry i'm unable to help as i don't use the steriods but it seems like Tammy as helped. xxx

sharpiessave
07-04-2011, 09:32 AM
Oh Terry, you've helped me dozens of times without even knowing it. The wealth of knowledge you've stuck in so many threads has practically made this site a one-stop shopping experience for all our lupus needs. We're so lucky to have you.

Peridot20_Gem
07-04-2011, 11:13 AM
Oh Terry, you've helped me dozens of times without even knowing it. The wealth of knowledge you've stuck in so many threads has practically made this site a one-stop shopping experience for all our lupus needs. We're so lucky to have you.Thanks mate,

That's what we're all here for to help one another the best way possible but as you know already i won't touch the steriods mate and the plaquenil seems to suite me better now taking it at night.

ritzbit
07-04-2011, 01:04 PM
I really cant remember and am very tired right now so Im sorry I am not very helpful. But this was a thread I had going at the time so I hope that maybe it has something about that in there http://forum.wehavelupus.com/showthread.php?9618-IV-steroids-today-(/page11

tgal
07-04-2011, 10:55 PM
Tammy, you make remarkable sense for someone who's had the day you've had. My local hospital has a free blood work day next week, so I'm going to have them check for everything. Thanks for the pancreatic heads up. I hope your innards quit jacking with you. Stupid innards!

Mari, how long have you been on the pred? And how long were you on it before Cushing's came? And do you have a beard too, lol? Mine's more of a goatee, actually.

Ritz, do you remember how long it took you to get over the negative side effects of coming down off the pred? Right now I can't imagine my life without it, but I'd love to get there someday.

I have been on steroids for about 2 years. I was started off at 5 and upped to 10 soon after. Cushing's began not long after that. It became really bad when I was upped to 20 and just recently I have been on as high as 60 (as well as 6 of the shots in 3 months and you shouldn't have more then 1 in 6 months but I was flaring badly). Now I must say that yes, I have to shave or I would have a lovely beard too! LOL Actually a goatee as well (just along my chin and jowls). I have been dropped back down to 40 along with methotrexate but I am not seeing it dropping much in my near future because even at 40 I am having tons of flare issues.

Hope you do better then I have!

Peridot20_Gem
07-06-2011, 06:49 AM
Hello Sharpie,

Hows the advice gone with the member's??...and are you slowly getting there with the prednisone keep we updated please mate. xxx

sharpiessave
07-06-2011, 09:34 AM
Hey Terry, thanks for checking on me. I hope you guys all know that even when I'm quiet I'm still thinking about all of you, hoping you're doing ok.

So I talked to my Rheumy's PA yesterday, and she ok'ed me to go back up to magic 25 for the next two weeks, but then I have to start the taper all over again. That's what I was expecting, so I'll make the most of the next two weeks, then complain about the taper later.

In other news, I think the plaquenil might be starting to work! I don't want to get my hopes up yet, because I only started it two months ago, and from what I've been reading it can take a lot longer than that to take effect. But one of my strange rash situations, the one that has lasted through 7 different "treatments", is beginning to clear up. So cross your fingers for me. Maybe the taper won't be so bad once the Plaquenil has kicked in. . .

tgal
07-06-2011, 09:41 AM
Hey Terry, thanks for checking on me. I hope you guys all know that even when I'm quiet I'm still thinking about all of you, hoping you're doing ok.

So I talked to my Rheumy's PA yesterday, and she ok'ed me to go back up to magic 25 for the next two weeks, but then I have to start the taper all over again. That's what I was expecting, so I'll make the most of the next two weeks, then complain about the taper later.

In other news, I think the plaquenil might be starting to work! I don't want to get my hopes up yet, because I only started it two months ago, and from what I've been reading it can take a lot longer than that to take effect. But one of my strange rash situations, the one that has lasted through 7 different "treatments", is beginning to clear up. So cross your fingers for me. Maybe the taper won't be so bad once the Plaquenil has kicked in. . .

That sounds like the plaquenil. You can start seeing the results at about 2 months but you don't get the full affects until 3 to 5 months. Plaquenil is wonderful on the rashes! I am so glad you are getting positive results.

I am sorry that you too have a love/hate relationship with steroids. Don't overdo it while on the 25 though. You don't want to make things worse when you start to taper. That doesn't mean not to enjoy yourself. You deserve to go out and have a little fun while feeling better! I will be thinking of you and I will be expecting an update on all the fun you are having

steve.b
07-07-2011, 12:37 AM
plaquenil sneaks into your system.you are not sure what it is doing, until you realise the rash hasnt come back.
glad it has started to work for you.

Nat
07-07-2011, 07:33 AM
I'm having the exact same issue but my magic number is 12.5mg. Been on it for about 2.5 months now and every time I try to drop down to 10mg I start to get pain again. Tho Ive found what appears to be, for me, a lot of relief from this pain if I cut out sugar! I'm adamant to get off the steroids again but I know what cutting down too quickly does and I don't want to end up back in hospital.

Peridot20_Gem
07-07-2011, 08:35 AM
Hello Sharpie,

It sounds like your really pleased having it another 2wks before you start the Taper.

Sharpie i was on plaquenil and took it for 12wks and after 5wks i couldn't believe how it cleared my skin it works fast on that one and mari told me it can take up to 6mths before you feel the effect properly...come this thursday i've been on it 5wks it's helped my skin so far but not done a clearing job as yet.lol
I hope it helps your rash soon as it should be working into you now but i can't wait for it to at least ease my joint's abit.

You takecare mate xxx