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Posted 3/1/2011 5:14 AM (GMT 0)
I am just wondering what dose of prednisone others take. I'm currently doing a month-long taper (40mg for a week, 20mg for a week, 10mg for two weeks). My doctors are seemingly unwilling to let me stay on prednisone at a maintenance dose, so I am constantly doing 2- to 4-week tapers to control flares, but never really recover in between.
I would love to stay on about 20mg/day for a while, since that is the dose that I feel the best at - any lower doesn't seem to make a difference really. However, my rheumatologist who is treating me says he's not comfortable keeping on that high of a dose. From what I've read, 20mg isn't really all that high! Is it? I suppose I'm young (22) and have a lot more years left to deal with this disease, but still. I'd rather have more quality of life back and deal with the side effects.
What do you guys think?

Kathryn
Posted 3/1/2011 3:19 PM (GMT 0)
Hey there Kathryn,

I've been on prednisone since March of 2009 and I hate having to use it.  Currently I take 3 mg a day cuz it seems like if I take it away completely I start to flare.  I started with 20mg and then was on 10 mg for about 6 months and then finally got down to about 5 -7, and now 3.  I'm telling you it can be a miracle drug for us all but there are very serious side effects.  20 mgs is high if you stay on it for awhile and you are sooo young so therefore your doctor is right.  I understand about the quality of life and feeling good daily, but I suggest you sit down with your rhuematologist and talk about the side effects and other drug options that are available.  Prednisone is bad for the bones, causes the skin to thin out, creates weight gain, can cause muscle weakness, interferes with sleep cycles.  These are just some of the things that can happen after long term use. Everyone of us have different situations with this disease so it is hard to tell anyone what they think is best for them. Again, talk to your doctor and go through the options and discuss long term treatment plans that are best for you.  Keep us posted.

Hugs and Angels,

Lynnette

DX - sle and carpal tunnel

RX - plaquenil, prednisone, lisiniprol, etolodac, tramadol (as needed), hormones and lots of vitamins

Posted 3/1/2011 4:27 PM (GMT 0)
My rheumy has a slightly different viewpoint. I was on 15 mg for about 4 years before my symptoms begin to lesson a great deal and we have slowly gone down to 1 mg over the course of a year.

While there can be side effects, there are also ways of managing the most bothersome of them -- making sure you are getting good calcium supplementation and watching your diet carefully so the "bad carbohydrates" don't take over are the 2 worst, followed by making sure you are getting good restorative sleep (may need sleeping meds).

Because of my experience, I think using prednisone for several months until you become stable then going down slowly is a much better approach than "blast, rest, blast" like your rheumy is doing.

You might consider getting a second opinion from another rheumy who treats a lot of lupus patients. Changes should never be made without a drs guidance as coming off pred too fast can cause serious issues (such as heart attack).
Posted 3/2/2011 3:04 AM (GMT 0)
I'm seeing another rheumatologist in May, so I will definitely bring this up with him then. My current rheumatologist (who I'll continue to see, since he's closer) doesn't want to diagnose me with anything and is willing to work with me but says he just doesn't know what to do next as far as treatment options go :(....

I'm starting to feel pretty sorry for myself and I don't want to! Ugh.


Kathryn
Posted 3/2/2011 10:50 AM (GMT 0)
Steriods.... Wouldn't it be nice to find the miracle that we could function without any of the side affects? The maintenance dose is hard for me i have been sick 15 years and developed diabetes. so i don't take the daily even low dose. i do medrol packs for vacations, or holidays. if i flare. when i go in for my infusions then i get a big boost Orencia with a side of 80. (infusions monthly) i also take methotrexate 2.5mg 6 tabs one time weekly and of course i didn't realize how much it helped until my liver got a bit sad.... and i had to go off for three weeks ... i never sang the praises of another med so highly.

I am 40 now and I began getting sick in 1991. Took forever to diagnose me. I kept telling my family dr. i think i am a hypochondriac. lol i have a lot more than SLE going on but it is the disease that steers the ship. It has humbled me greatly.

I have been married 19 years, three teens, finished dental hygiene school worked maybe three years part time, i really put up a good fight but i am on disability and it embarrasses me that i have an education that i truly love and miss, i feel more like an obligation than a wife and If anyone out there knows these feelings and has some wisdom please share. my husband is a blessing a million times over, compassion not his strength. I just wonder if being sick makes other people feel lonely in a crowd? Or if you could take a vacation anywhere it would be a day from yourself? I enjoy my personality my dreams and plans, but i am frightened of them as well. The past three months i have had the worst flare that i have had in a long time and ... nevertheless... God has a plan I am still plugging along.

I wish all of you more good moments than challenging ones. Don't be too hard on yourselves, take time to rest even when you still have a bit of energy and be thankful for the challenge its like our own little Olympics...lol. I just don't want to burden my family, and i am looking for others who have had their good and bad days and encouragement. and i am more than happy to be any ones shoulder, to be a distraction, to converse about anything... and if i know nothing about it... like sports.. i will pretend my best..lol all have a good night and heal well
Posted 3/5/2011 12:58 AM (GMT 0)
My rhumey was the same as yours! Was very hesitant to give me prednisone and I was also on dose packs for several months before I ended having to go on extremly high doses. Instead of uping the pred, have you tried a different drug to help control the lupus?

Prednisone is a very dangerous drug and can cause many unwanted and serious side effects. I understand you saying you want your quality of life back...I am 23, and struggle with this daily even on high prednisone. Are you on any other medicine such as plaquenil, Imuran, cellcept, or methotrexate? You have several choices to try and once you get a drug such as the ones listed in your body for a few weeks/months, you hopefully won't need much Pred!!! Definatly worth asking Rhuemy about!
Posted 3/5/2011 10:36 PM (GMT 0)
I already take methotrexate (20mg/week), Humira every other week, and I tried Plaquenil for 6 months but it didn't help so I stopped it. I'm 8 days into my latest prednisone course right now and I'm finally starting to feel the flare lifting a little bit. It's such a relief to feel better! I still need a nap every day and can't do much, but better than it was. I tell you what - don't take too many NSAIDs, people! Gastric ulcers are NO FUN whatsoever. Finally getting that under control so I can take pain meds and sleep better. Maybe I should ask about some of the other meds, like Imuran or CellCept - the thing is, my uveitis (inflammation in the eyes) got under control with MTX so I'm scared to come off that, and my rheumy said he didn't want to do either of those along with MTX.

Thanks!

Kathryn
Posted 3/5/2011 11:56 PM (GMT 0)
NSAIDS should *ALWAYS* be taken with food, even if just a cracker! Sorry you found that out the hard way! Most drs are fairly careful to tell you to take prevacid or a similar product once too many meds are in the picture -- when we are using our stomachs as medicine delivery systems it's extra important to keep them working well!

No, the "big three", Cellcept, Imuran, and MTX are hardly ever taken together, and oddly enough, we all react differently with each of them. For me, Imuran did nothing, but Cellcept was a miracle drug. For others, it's the other way around.

Hope you feel better soon,
Posted 3/6/2011 2:54 AM (GMT 0)
The combination of MTX and Orencia has been a great help to me. (the orencia is the once a month infusion) I do not do well with NSAIDS and have no relief from them, and Narcotics, may mask the pain for short moments but i find the side effects like constipation to be worse than the little relief they give. however i do take a narc hydrocodone ER 20 mg twice a day, that is helpful because i am not chasing pain as much. Kathryn i have an eye ? my eyes are always dry and i use systane eye drops they always burn and are tired. Sometimes i will get smoky like blotches. I know the dryness can be secondary sjogrens oh and blurry. (I have had lasix eye surgery 2 years ago. Does anyone have this problem?

My thoughts are with all of you ... May each day be just a bit better than the one before.

diana
Posted 3/6/2011 3:13 AM (GMT 0)
Kathryn, convenience is a wonderful thing. A dr. that is close is great. Lupus doesn't just disappear or if it does it has not done that for me. I go to an arthritis clinic, where there are i believe like 12 rheumatologist. fortunately for me I liked the first one, she was wonderful but had tons of pts she asked if i minded trying my dr now. I am glad i did. I am like a bag of tricks... (so many issues i take some time) he gets my sarcasm, my notes i bring in ...list of new symptoms or things going on with my health so he can read them so i don't have to talk to much so i don't cry. He is willing to let me try things, knowing if i get little to no relief with in a month... i will gladly go off of it. I hate being a Guinea pig but i am not text book. I really don't know many auto immune patients that are.

I would highly suggest taking time to find a rheumy that understands your needs, and is willing to give you different options. Prendisone can be my best friend and my worst enemy. I love how it alleviates pain, but it totally throws my blood sugar off. I and my dr. would like me on a maintenance dose but it isn't working with my other health issues so we do high doses at infusions.

you may have rappour with your dr you see now if you do by all means stick with him. if not find one that you can develop rappour with.i totally forgot how to spell that word. Your relationships with your Dr.s' is really going to make a difference in how you accept and handle flares and being sick, just my opinion.
Posted 3/6/2011 3:32 AM (GMT 0)
panther fern - thanks for the advice. There aren't any rheumatologists where I live (in Alaska), the closer one is in Anchorage (2 hour plane ride), and the new one that he's sending me to is in Oregon. I'm a poor college student, and a single mother, and I really can't afford plane tickets all the time!! Thankfully my primary care physician here is really helpful and keeps in close contact with my rheumy in Anchorage.

My eyes aren't dry, and I never really had any of the typical symptoms that go with uveitis (painful, red, irritated eyes), so that makes it even more scary because most of the time I can't tell when it's flaring. I do have permanent damage to my vision though that happened before I was able to get it under control with methotrexate. They told me I could be blind before I'm 50 if I didn't get the inflammation in my eyes under control soon, as it was it took almost two years but now it's been quiet ever since (it's been about 4 years total now).



Kathryn
Posted 3/8/2011 6:19 PM (GMT 0)
I only took 60mg daily for 5 days b/c I'm 30 yrs old. Apparently there are many side effects and the doctor does not want to go more than 5 days when I get a flare up. It works, but many don't recommend it for longterm use. Even Toradol works, but it's hard on the liver. That is another wonder drugs too, that can only be used once a month or less.
Posted 3/10/2011 1:15 AM (GMT 0)
Yeah I have been on prednisone for over 6 years now with maybe an 8 month break over the years... yea its a miracle drug helps us feel good. aches, pains, fatigue, etc... but as much as I love it, I truely HATE it as well... Kathryn I understand about the doctor thing.. I see so many doctors its hard to keep straight, right now I am in limbo about my rhumey, possible finding a different... but right now Im on 60mg and tapering down to 40mg. I am suppost to see the doctor next week but I am serious thinking of not going..
Posted 3/11/2011 7:22 PM (GMT 0)
I am trying not to get my hopes up *too* high about my new rheumatologist in Oregon - I know that he won't be able to give me a miracle cure or anything. But I am really really hopeful that he will have some insight into what's going on with me and have ideas about new treatments...

So far the only thing that makes me feel better is prednisone. I'm down to 10mg a day now starting today, and 10mg is usually the point at which it no longer helps... I'm hoping that it will still help this time. I've had a really good week and would really like it to continue!

I'm planning on begging my internist to keep me on at least 10mg prednisone until I go to my appointment in Oregon in May. I can't deal with another up/down flare from stopping it. I need to finish this semester in nursing school!! And I really was starting to doubt I'd be able to finish, until I got the prednisone again and the flare got better.

Kathryn
Posted 3/14/2011 2:50 AM (GMT 0)
Well today I am in much more pain, joints and chest and abdomen. This always happens when my dose goes below 20mg. I decided just now to take things into my own hands and took another 10mg of prednisone, bringing my dose for the day to 20mg. I'm going to continue to take 20mg and then talk to my internist about it when I see her on Tuesday.

Is this a horrible idea? I'm just sick of see-sawing back and forth when I *know* I feel so much better on 20mg.

Kathryn
Posted 3/14/2011 3:09 AM (GMT 0)
Did you just go from 20mg to 15mg? If so, I don't think it's such a bad idea at all to re-visit 20 for a couple of days. If you just went from a few days at 15 to 10, then it's probably better to use 15 rather than 20mg.

It's helpful to have some time at a dosage that makes you feel decent so things can heal up a bit. However, it's not so great to take things into your own hands, prednisone can be a dangerous medication when changing dosages without the doctors approval or knowledge. That said, I can't see that a couple of days staying close to what you've been on in the last week would be too risky.

Remember tho, we aren't doctors and it might be worthwhile calling the drs office and telling them what you plan -- they can tell you different if its an issue.

Hope you feel better soon!
Posted 3/14/2011 8:19 PM (GMT 0)
I had been taking 20mg for a week, then dropped to 10mg and started feeling horrible so I went back up to 20mg. I think it would be better to taper more slowly like from 20 to 15 to 10 but that's not what I've been prescribed for some reason...


Kathryn
Posted 3/16/2011 4:18 AM (GMT 0)
Saw my doctor today and she prescribed me 1, 5, and 10mg prednisone tablets so I can taper my dose slower (1-2mg a week). I'm going to start with 19mg tomorrow! I'm so glad she agreed with me :) It's always good to know/like/trust your doctor.


Kathryn
Posted 3/18/2011 4:24 AM (GMT 0)
Yay! Sounds like a much better answer than a quick drop. Been out of town or I would have answered sooner.

Most drs say bigger (2 mg) at the beginning of tapering down, but lower than 7-8 the drop should be more like 1 mg every 4 weeks.
Posted 3/19/2011 9:53 PM (GMT 0)
Thanks for the info. I will remember that when I get down to that dose! The last thing I want to do is go too fast and flare again. I figured I could probably drop 2mg at first but then again I've only been on prednisone this time for 2 and 1/2 weeks so maybe I should give myself a little more time and just go really slow.


Kathryn
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