Pred dosage for flare?

[Sleepy In Seattle]

Hi folks!

I am trying to develop a good strategy for dealing with small flares...ones that don't respond to plain old good diet, extra rest, and so on....

Those of you who take a short course of steroids - how do you handle that? How much/for how long? What's the taper like?

I'm not talking about big, nasty, go-to-the-doctor-right-away flares - just the small/medium ones that you handle now and then as part of this crazy "normal life" we all live.... 

Thanks for any advice and wisdom!

Hope you're all having a good Friday....

[cccourt1942]

Hi Sleepy,
    You don't say your age.  I am 72...with a birthday next month.     My last BAD flare was for 4 to 5 months before my dx ...at age 71!  Since dx and subsequent meds, the  BAD flares (which I had zero idea were flares from an AI) would rear their heads every few years.  The intermittent ones maybe twice a year.  With meds I can think back to two in 16 months.  Then there are the days following sleepless nights!  Those can FEEL like flares.  (to me)
     I am retired ...and I am widowed.  I can put off till tomorrow which I don't WANT to do today.  And I do.  That is not realistic if you are still raising children and working.  When I had young children, I returned to school..several times!  I would cook and freeze meals.  I would do housework early in the morning one day a week..and hold myself to it.  Those worked for me for when I felt bad and couldn't a) cook, or b) had to skip a week  cleaning due to aches/pain.  I learned years ago to run errands by twos instead of 10 at a time.  I adhere to this today!  What I am trying to say is if you have an easy to follow routine, you can cope better being able to skip some steps when you feel so badly  and just take time off when you need to!!!
     As to steroids, I have not been diagnosed long enough to address your specific question.  My rheumy put me on 5mg per day 5 or 6 weeks ago.  She wanted me off Celebrex.  I have yet to understand if this is permanent.   For at least 20 years before dx of SjS I had no less than 1 Medrol pack per year and no more than 2 packs per year for sinus infections.  I feel like they kept me upright and saved my life on more than one occasion.  These were the 4mg packs.  Also, a Medrol pack has  built in tapering.  I probably had SjS during those decades.  Just can't claim it!!

    Hope today is a good one for you. 
c3

[Sleepy In Seattle]

Thanks, C3... I am in my late 40's and since diagnosis have been pretty healthy - I take Plaq and 1-3mg prednisone every day for maintenance, and Mtx once a week (I have Lupus as well as Sjs).

I used to split the Mtx dose in half and take it two days a week instead of one - that worked really well for me and kept things in check. Then I had to switch Rheums (my old one left the practice) and my new Rheum wanted me to take the whole Mtx dose at once, just once a week....well that doesn't work as well for me, it seems.

Plus I've had a whole lot of rather demanding LIFE happening lately, and I definitely overdid things, so now I am in probably the worst flare I've had in the last several years. I shouldn't complain too much - it's not HORRIBLE, but it's bad enough and lasting long enough to concern me and I want to get it over with....my usual coping mechanisms aren't working so well.

I have had this stuff for long enough (and am familiar enough with the meds) that my doc gives me some latitude to determine what I need to do - I always tell her about stuff, of course, but I'm more or less in a somewhat self-monitoring state most of the time.

I just want to know what kinds of things work for people in these cases....sounds like most people do those "Medrol Pack" thingies....

[Jasper]

I was diagnosed in July 2013. At the time, I was in a flare but did not realize it. I seem to go in and out of flares, but it took me awhile to figure out that is what was/is happening. I

In January, I talked with my Rheumatologist about the flares. She gave me a taper to try when I get the flares. She set the dose at a low dose to see if it would work. Prednisone 10 mg x 5 days, then 5 mg x 5 days, then stop. Well, I tried that taper in February. Nothing happened until the 5th day, at which time I had slightly more energy. But then I was tapering down by the next day. The flare did not leave.

I was going to wait until my next visit in April to talk with her about it. However, I am getting neurological symptoms (forward and backward swaying, like I am on a boat or floating dock), along with other symptoms (fatigue, no energy, edema in feet, ankles and lower legs, muscle and joint aches and pains). So I contacted her and she started me on another taper, this time, Prednison 20 mg x 5 days, 15 mg x 5 days, 10 mg x 5 days, 5 mg x 5 days, then stop. I just started taking it so I don't know how it is going to work. I will let you know. I sure hope it works this time.

[Pbrain]

Oh, Jasper, I'm worried about you! A lot of those new symptoms sound like adrenal insufficiency, which would've been caused by tapering from the prednisone too quickly (which, IMHO, is an individual rate). Going on a higher dose may only make tapering more prolonged and difficult. Obviously, it's too late but you may want to consult an endocrinologist familiar with adrenal insufficiency (I make this point because many specialize in diabetes and have forgotten the rest of their training) to oversee your taper if you have problems again.

Although my taper started from a much higher dose (solumedrol in the hospital followed by a prednisone taper). I had all sorts of central and peripheral nervous system symptoms in the hospital (this was back in 2002 and they didn't know why), and the high dose steroids (6 days in the hospital and then the prednisone) really helped! But there had been one reduction in prednisone where I could tell I worsened. My neuro had me return *to the previous dose* and then to slow the taper. I needed to give my body time to start my own production of cortisol back up. That worked.

Please be careful and listen to your body.

Sleepy in Seattle, great question and one I wonder about, too. I'm on steroids (for secondary adrenal insufficiency) and am currently recovering from a major flare. My Endo wanted me to quadruple my daily dose of prednisone but just adding an extra .5 mg (which is not that much at all and probably the doctors would scoff and say it wasn't enough to do anything-except, to me, it did!) was causing me problems. Otoh I know that twice in the hospital, I've been given major doses (one time was the ER, and I'd felt almost instant relief). So I don't understand it.

[cccourt1942]

I've had a whole lot of rather demanding LIFE happening lately, and I definitely overdid things

I just want to know what kinds of things work for people in these cases....sounds like most people do those "Medrol Pack" thingies....

That top statement is what I was referring to.  When LIFE gets in the way, all the little things are already tended to so you can crash.  Funny thing about the flares, I could always get to work, do my job, but my energy was spent.  I had no strength for anything else. 

And yes: those Medrol Pack "thingies" are wonderful.  A couple of years ago the first day dosage began to give me killer headaches.  I am talking KILLER.  I can no longer take them.

And last:  Unless you have had a hysterectomy and already gone thru it, you are the right age for peri-menopause and off to the big M.  It is a biological bomb for our bodies.  Be aware of what you are going thru with that so you can differentiate.  btw:  they ARE difficult to differentiate.  Witness how many testimonials you have read on the forum regarding onset of SjS being brushed off to "menopause."
     Hope you have sunshine in Seattle today!!   

[Sleepy In Seattle]

Thank you thank you thank you, everyone!!!! This is all really helpful.

And yeah - I'm definitely in the peri-menopause camp :p So far I think I have been able to (mostly) distinguish that from the Lupus/Sjs (though sometimes hormonal swings do trigger autoimmune activity), and I feel pretty sure this particular instance is mostly autoimmune, unfortunately.

I do keep the freezer stocked, and my awesome husband calls EVERY night on the way home from work to ask if he can pick up dinner...sometimes I take him up on it! And if the housework doesn't get done, then it doesn't get done...oh well! But then there are always the things you don't anticipate - family drops in for the weekend, the basement floods, you get a mild case of food poisoning that costs you a night's sleep, the pollen count goes up in spring, etc...add a few of those together and you've got a flare. Or at least I do! 

I bumped my pred up to 10mg yesterday to see if that helped and it did - tremendously. So I'll do a couple more days at 10 and then taper back down...been through that enough to know how to do it at this point.  I know it's only 10mg for a few days but I hate to do it.

Mostly I hate running up against those (*&^%$#^&*() limits this stuff puts on me.  But you guys all know how that goes!!!!

[Jasper]

Pbrain ..... No, I don't think my symptoms are adrenal related. My flares always present with those symptoms (lower leg, feet and ankle edema, joint and muscle aches and pains, fatigue, no energy). The only thing new is the swaying. But I have sensory polyneuropathy/ganglionopathy and I am sure the swaying is just a worsening of the neuropathy. Plus, I have not been on Prednisone except for the very short trial taper in February (10 days only).

But thanks for responding because, if these were new symptoms and if I had been on Prednisone for awhile, then it would be good to know.

[jackfrost]

Hello,

To get back to the original question, what is an example of a short pulse of prednisone to moderate a flare period?

My last four "pulse packs" were stronger than Jaspers, which started at 20mg.  I can't remember, but my Rheumatologist probably tried the 20 mg pulses and they didn't work, so he tried the 60 mg pulses which also didn't work.  He did not want to go higher than a 60 mg pulse pack.

My Rheumatologist used to give me a pulse pack of 60mg for four days, then 45 mg for four days, then 30 mg for four days, then 15 for four days, then off of it. 

You can go down fast only because you are not on it long enough to build up dependence. 

I did these 60 mg pulses four times.  Sadly, prednisone doesn't help me!  Fortunately, other medications do help somewhat - at least with some of the pain if not much of the fatigue.

[Sleepy In Seattle]

Jasper my flare symptoms sound a lot like yours...adrenal insufficiency wouldn't have occurred to me. But it's good to know! 

I love how people all look out for each other here. 

[Jasper]

Sleepy ..... I have been on the 20 mg Prednisone for 2 days now (I take it each am). I can tell the difference already. I am NOT back to normal, whatever that is these days, but ..... the lower leg and feet edema is less, I have a little more energy today, I do not feel like my joints and skin around my joints have much fluid in them anymore (not so tight), I have less aching. So, the Prednisone seems to be working this time. I think I needed the larger dose to start with (20 mg instead of the 10 mg) in order to make a difference.

Sleepy .....  I have a couple of other symptoms when I am in a flare which I forgot to mention ..... a small amount of dribbling urine even if I feel no urge to go and sometimes have just emptied my bladder. I only know I have dribbled when I feel it in my underpants. It is not much, but I just do not feel it. That only happens when I am in a flare. I am also mentally more overwhelmed when I am in a flare. Traffic in a large city will get to me when I am in a flare (like a circuit overload) whereas I have zero problem driving in a large city when I am not in a flare. Decision making is more difficult when I am in a flare.

Yes, I love how people look out for each other on this forum too. The more knowledge we share, the better for all of us.