View Full Version : Prednisone flare dose question
04-07-2013, 10:25 AM
Just wondering what dose of prednisone people in a flare started on. I'm on the plaquinil, Imuran and 5 mg of prednisone. The plaquinil and Imuran I've only been on for just under 3 months. I think I'm having some improvement or better days here and there but this achy, fatigue, run down feeling is always there. Now I have a friend with Lupus who swears I'm on way to low of a prednisone dose and has encouraged me to request high dose or see her doctor. Just wondering, would an increase help with those issues? It's getting pretty depressing having to rest all the time.. I'm only 42, but feel like 80. Actually my 80 year old grandma probably can do more than me now lol
04-07-2013, 10:55 AM
Pred is a wonderful and hateful drug combined. It offers rapid relief from severe symptoms and provides a "euphoria" for a while.It also causes at doses at/higher than 7.5mg a day adrenal atrophy,bone loss,weight issue,stretch marks,easy bruising and further lowering of the immune system.
Every dr is different and a higher dose of prednisone is used when issues "flare up" or you become ill.Being on a higher dose will not alleviate the achy,tired or run down feeling IMHO as that is likely the SLE. If you feel like you are having better days then have an honest talk w/your dr and see if they feel it is appropriate(via symptoms and labs)to up the dose. I would not change a dr I was having no issue with to go to one simply for a higher pred dose honestly. Your friend may dose higher as her dr feels it is appropriate for her.
The goal of pred is not to be on it forever as it is destructive. I have been on it since diagnosis while trying to find a medication to calm things down. I have done Imuran,Arava and am currently on MTX. I am barely over 40 and have been on an osteo med for 3 yrs to prevent bone loss because I haven't been able to drop lower than 7.5.
Even if you go up,when you come down you will have prednisone withdrawal which is like the flu really(for me)and all the symptoms return. Plus you run the added risk of additonal infection and urgent care or hospitals treat you like the plague if you have to go and they see those meds. I hate hospitals BTW :) .
So it is up to you really to talk to your dr about increasing. if you are noticing improvement with the Imuran I would give it more time. Just because your friend is higher and youre not doesnt mean anything-its not going to be a magic pill-there isn't one and fatigue, achiness, fevers,etc are a nature of this illness. I would consult with the dr at your next appt if you feel it would help and see what they say but generally they like to keep you as low as possible on this medication due to the severe side effects and damage it can cause. That is usually why they try to find a DMARD(disease modifying anti rheumatic drug)to use in conjunction (like Imuran) to spare using the pred. Unfortunately some of us just don't respond well enough on those or find the right one and the pred has to be continually used or often changed due to disease activity.
04-07-2013, 11:46 AM
Thank you for replying. May be a silly question but can you use like a higher dose some days to get stuff done? To get that euphoria for living life again? Or going on vacation and want to enjoy it? My husband has joint back issues and on an occasion will use Vicodin for short times to relieve the pain and enjoy himself. He suggested that the prednisone might be able to be taken the same way? Like those short boost packs.. Wow I must be getting desperate. First time on prednisone for an unrelated lupus infection I put on 17 pounds in 2 months.. Swore I'd never take a high dose again
04-07-2013, 02:40 PM
The prednisone does not produce euphoria for me unfortunately. I am evidently a prednisone anomaly. I sleep whether I am at 7.5mg or 60, don't gain weight when I have to up my dose,etc.
I do get a "moon face" at higher doses but it goes away once I taper down.
But to answer your question,no it is not used for that. Even a 3 day increase is looked at a situation where a taper needs to occur according to some sources. Look up prednisone withdrawal and you will find articles. Plus even if you bumped your dose when you came back down it would be likely twice as bad as not only would the medication withdrawal issues be there but additional aches and pains from overextending yourself just to get things done. The Dose packs and large jumps are usually used when an illness like bronchitis,pneumonia,etc pop up requiring additional ammunition and relief from lung/other inflammation,etc.
Sorry like I said not a magic pill. I wish it was, wouldn't it be nice? Really nice.
04-07-2013, 04:56 PM
Seriously.. I need that magic pill. Waiting for these other meds to kick in is just so frustrating. Like I said my husband can take a Vicodin and keep going. He doesn't like to, because of the addiction potential but its there none the less,to get relief. I've even started to worry I don't have lupus I've been miss diagnosised that why the other meds aren't kicked in yet. Only been 2 1/2 months really tho. I need prayers for patience!
04-07-2013, 06:22 PM
I need the magic pill too LOL! I want one! We'd all be lined up like kids around the ice cream truck.*sighs*I've been waiting almost 6 yrs. I have been in bed all weekend looking out of the opened window while my husband and kids were outside. It's been a hard 2 days. I can hardly walk to the bathroom. And of course it's been BEAUTIFUL here....really really beautiful.
The fatigue,aches and ickies are always there it seems. I was on Imuran for a while and did really well and started to feel almost normal around month 3 until I got a reaction to it out of the blue and had to come off. It worked the best for me out of the ones I have been on. I hope that for you...give it some more time. I wish I had been able to stay on it.
04-07-2013, 07:32 PM
Prednisone DOES work like that "magic pill" for me...I dunno why, or what it means about my Lupus, but it's amazing.
I am now on my second span of 60mg.day, and I feel like Superwoman (which means, to me, like I simply feel what "normal' probably is for healthy people, LOL). Long story, but around this time last year I was on 60mg/day for a month, then tapered down over the following 2 1/2 months. Just over a week ago, doc put me back on 60mg.day again, just for 2 weeks, and then i will taper down again over the next month to two months.
For me, it relieves all achiness, fatigue, brain fog, and everything else. I feel like I am 25 again. The first time, I lost about 17lbs - this time, I have lost about 6lbs in the last 9 days. I wish I could stay on it forever, but I know it would kill me.
I do get kinda moon-faced, but it goes away when I go off it. Last time I didn't have too much trouble tapering off, but it did take a while, and I felt a bit crummy for a day or so each time I lowered the dose. I tried to take it real easy for that day and get extra rest.
I bruise more easily, but have not gotten sick or anything so far.
I am also on Plaq and Methotrexate. They don't work AS WELL as the prednisone, but they're also not as harmful. It took almost 6 months for the Plaq to really kick in for me, and took about 3 months to get used to the Mtx and get on a routine that worked well for me with it. At this point, the Mtx usually keeps me feeling at 85%-90% of "normal" as long as I am not overdoing it and I make sure I get plenty of sleep. That's not too bad - and a MUCH better quality of life than I had two years ago, for instance. I take the oral Mtx and don't have problems with it so far...but it DID take me a while to get used to it and get past some of the side effects.
Don't give up - keep trying to find something that helps. But also don't give up on any one medication until you have really given it a good chance - a lot of these things take several weeks or even months to get used to - if you give up too soon, you'll never know.
Hope that helps...
04-07-2013, 08:05 PM
It's lupus.. I'm so sorry to hear you say that. 6 years? I'm going crazy after 5 months. I cry and get depressed and feel like something has been taken from me.. Nice days are the worse! I kept saying I was glad it was winter when this hit me. At least I wouldn't feel bad about not doing a lot. Now it's getting nice out and I'm getting worried. Why haven't they come up with better medications for this? It's life altering!
04-07-2013, 08:11 PM
Sleepy in Seattle: did you take 60 mg of prednisone while you were waiting for your meds to kick in? You mentioned it took 6 months for them to work? Maybe I need an increase for a while. I've been on 40 mg a while ago for another issue and remember feeling great on it! I think I'll ask my dr about it. Is the mtx the only other med you have tried? Thanks for the Input.. I'm just feeling really down and frustrated today I think. I seem to go from one mood to the next! Like I'm going to fight this, to maybe I'm just dying all in one day.. Almost funny but not.. Ugh!
04-07-2013, 09:35 PM
Nah, it wasn't that - I was diagnosed about a year and a half ago and put on Plaquenil. I resisted taking anything more because I was scared of taking stuff...now I wish I had done it earlier.
Anyway, about 6 months after diagnosis I was just starting to feel a difference from the Plaquenil. Nothing dramatic - I just realized that I seemed to generally feel better, have more energy and less pain/achiness. I'd say I was back at 65%-75% of "normal", with some pretty crummy days maybe 2-4 times a month.
Then last April I suddenly went deaf in my right ear - autoimmune hearing loss, related to the lupus, was the diagnosis (though as usual with these things, it's hard to really tell - but there was no other obvious cause after many weeks of testing, and my blood work made the lupus thing likely). I went on 60mg/day prednisone for a month in the hopes that I might get some hearing back (I only got about 10% back). So that was the first dose of Prednisone. While I was ramping that down, they gradually got me onto 25mg/week of Methotrexate - you generally build that one up slowly - so as my Pred went down, the Mtx went up.
After I got completely off the prednisone towards the end of June, I was just on Mtx and Plaq. (I take aspirin for APS as well). I also made some dietary changes on my doctor's advice, and that helped (avoiding foods I seemed to react to).
That's where I have been since last June, and generally decently happy with that routine - I do feel like it has helped a lot - and although the Mtx made me feel kinda lousy the first month or two, the side effects are barely noticeable now and I don't mind taking it at all - other than the fact I hate I have Lupus and have to take ANYTHING, obviously!
I am on the prednisone again now just to try another pulse of "the big guns" to see if we can bump the hearing up a teensy bit more. I am at the point where a hearing aid is not terribly useful, but if we could get another 10% improvement, it might start to be. My doc thought it was worth a try, especially since i tolerated the Prednisone so well the last time and didn't have trouble getting off it.
So that's my story...we'll see what happens over the next few weeks. I don't think my hearing has improved, sadly - so it might all be for naught - but at least I got to feel great for a couple weeks! I just hope it has no long-term harm. Prednisone is scary stuff.
The thing is, every person with Lupus is pretty much totally unique. It helps a lot to hear other peoples' stories, and of course you should educate yourself - but just because something works for me doesn't mean it will work that way for anybody else. This disease is sooooooo tricky.
In the end, you just have to find a good doc who will work with you on the LONG-TERM project of maximizing your health - whatever that means for YOU. Try not to "compare" too much with others - it'll just make you nuts. And DO realize that Lupus means you kind of have to have a "new normal" that is never going to be quite like the "old normal", no matter what. Be kind to yourself and take time to discover what works best for you.
But I understand your impatience. Sometimes I feel really trapped and claustrophobic with all this stuff. It's a tough journey. I try to be grateful for small changes and good days, and love my poor, battered body through the tough times. A little self-TLC can go a long way, even if it's just a good book and a hot bath. There's a time to struggle and fight, and a time to just accept some realities and CARE for yourself. In the end, that helps you stay healthier and saner.
That's my take on it, anyway....
04-10-2013, 06:11 PM
I have been taking Plaq. for about a year now. It took the whole six months for it to kick in. My doctor suggested me to take prednisone to help until the plaq. kicked in. I refused. I hate prednisone. I took prednisone for a year (for a different AI disease). My starting dose was 100mg. I took it every other day. I am grateful for that because its not so hard on your body when you are coming off of it. Prednisone is a "miracle" drug. Yes, it can help with a ton of things but can completely mess you up along the way too. I know there will be a time i most likely will have to be on it again for the lupus but until then i will rebel. If the prednisone is helping you then maybe talk to your doctor about upping the dose or maybe see if a anti-inflammatory drug will help. I am sorry that the lupus is getting to you and I hope you get to feeling better.