[Jenkay]

If you are on long term prednisone can you share with me what your maintenance dose is or how it varies?

I've been on prednisone for 4 years, at one point I was able to get down to 5-6 mg, then the lowest I could get to and maintain was 8 mg now after a bad period and prednisone increase I can't get under 12mg. I'm the queen of the slow tapper but it seems over time my maintenance dose is increasing.

I guess 12 mg is still somewhat low but I'm curious to see what others use as a maintenance dose.

Hope you have a lovely day

 

[cmfinnis]

HI,

I think I'm fairly similar to you - over 5 years on pred lowest 7.5mg, usually can't get below 12.5mg, currently on 15mg . . . . I've 'given up' on trying to think I'll ever get off it completely!

Cathy x

 

[sam101360]

Hi:

Are you on any othder meds besided the pred? If not, it may pay to consider alternatives to keep those doses low or eliminate the need altogether? Do you have any organ involvement?

I have gotten down to 5 right now...I am also on a slow taper, I will now go to 5mg/2mg every other day for a month and see how that goes before a further change.

So far I haven't been able to get off the pred for any marked length of time (about 6 weeks pred free in last 12 months).

I am also on 2000mg of CellCept and 400mg of Plaquenil a day, so it seems for me the steroids give that "little extra" necessary to hold the flares in abayance...I have kidney and eye involvement, though all of this have been stable while on the steroids.

My highest dose has been 60mg a day but never for more than a week, then I start the taper.

I know there are others who will offer more.

Stephanie

 

[Jenkay]

Guess we are on the same plan Cathy. It is interesting to hear how we've been through the same dosing increases.

I'm on many other meds and a variety over the years, tried Methotrexate last year and Imuran has been on the discussion table for a while. So far prednisone is the only thing that helps when things get really bad.

I don't have serious organ involvement but do have involvement from several systems, CNS (serious), muscular (serious), circulatory, skeletal, etc.

I'm looking forward to trying the Benlysta if and when it comes out.

Jen

 

[debatat]

Hi, I am on a maintenance dose of 15mg, it was 5mg, that wasn't enough, then 10mg, that wasn't enough. 15mg is good but every time I taper I flare, I wish I could get lower I hate the side effects. Glad I am not on my own!

Deb x

 

[Katharine]

Hi there,

I have a similar problem to yours and no matter how slow the taper I can't get down to even 10mg - I am at 12.5 (was originally at 15mg) and have been for about two years now. Despite other meds that have helped a lot (plaquenil, imuran, gabapentine...) I just can't go down

Thankfully rheumies here seem to have a pretty relaxed attitude to pred and think that if that's what's needed then we'll just have to work with it. I'm lucky that I don't really gain weight with pred (though haven't been able to lose the bit that I gained from flaring before treatment) and I have very good bone density etc.

Katharine

 

[cmfinnis]

Hi Jen

I'm currently also on cellcept and will be starting regular IVIG - just to hold my lupus (!!!)

The steroids are defo the best way though! And I've also had a fair bit IV . .

My consultant (at tommies) says 12.5mg is good! (for me at least . . . so don't feel TOO downhearted!)

I also got terrible CNS lupus and serositis, bit kidneys, heart, and optic neuritis.

Yukky disease . . .. .

Take care,

have you tried Imuran before - I liked it but eventually my lupus 'overcame' it . .

Cathy x

 

[Cinnia]

Hi,

I've only been on prednisone for a year now. Currently on 10mg. I think the lowest was at 7.5mg. I've been trying to find other medication so I can stop using the pred. I'm only 25 and already close to osteoporosis and now on another medication to prevent it. And my weight is increasing even if I'm eating low fat diet. All veggies and fruit. What a pain this med is.

Cinnia

 

[Jenkay]

Thanks so much for all your replies, it is really helpful to hear that others are going though the same thing.

I'm still stuggling at 12 so I may have to go to 15 again then come back down. I always try to stay on the lowest dose possible but until things calm down I'll just have to take what I need.

I haven't taken the Imuran yet, my doc is really on the fence about it as my sed rate is always ok but my ssa/ana are high and I have a lot of CNS issues. The are scheduling some other test first too (MRV, LP, etc) I'm wondering if it would be best to try and wait for the Benlysta as the side effects seem so much less.

Thanks again.

 

[leannelee]

Been on predisone for 10 years since found out had lupus the lowest I ever got down too was 5mg. Currently on 20mg for about 2 years now and can't get down every time I try I hurt so so bad more in joints and my lupus panniculitis gets really bad. The most I've been on was a tapper dosage of 60mg.

My best advice is to try a very very slow tapper when your not flaring. Predisone for me is the only medicine that has really significantly improved my lupus. I had alot of bad side effects when first started it but now doesn't make me feel bad at all.

Good luck

 

[BigSis]

hi all,
I've been on steroids for eighteen months, currently alternate 5mg/2.5mg dosing. I've been steady on this for about four months.
I did get down to 2.5mg a day but although I was preparred to struggle on for a bit with the muscle aches my rheumie called a halt when my blood counts started to drop to dangerous limits again. So up again on the dose.
I know the arguments pro immunosuppressants and anti steroids, but do they really apply when the maintenance dose is so low? Perhaps some of you brainier bods can tell me

My cholesterol is low and my blood pressure well controlled. I weigh too much but can't in all honesty soley blame the pred for that.:blush:

 

[Lily]

Hi Jenkay,

My sed rate was low too, but then it always is Has your doc checked your C3 & C4 along with your CNS issues? Mine were both low very which prompted them to start the Imuran and I don't have any side effects with it, not everyone does.

Bigsis, I think even with low doses of Pred these days they would try and introduce steroid sparing meds to counter the need for it. Even low doses over time can still give people problems. However having said that there are many people who ARE on immunosuppressants but their Lupus is such that they also need a low maintainence dose of Pred to help out more.

love
Lily

 

[Pink Pearl]

I am on a maintenance dose of prednisone at 3 mgs and 1 mg daily. I can't tolerate any higher than this. I went thru steroid psychosis 17 years ago and that has made my body toxic to steroids.

I had to start the methotrexate when I went thru the steroid psychosis as my lupus was on a rampage. I had spent 10 days in the hospital for the "pulsing." This has kept things down to a tolerable level. My maintenance dose prior to the "sp" was 80 mgs daily. I was very ill with lupus at that point. In the 9 months, I spent 27 days in the hospital, with 2 of them in ICU.

When I switched to a new rheumy, he started me on a progressive SLOW taper. I have been at my maint level now for over 10 years and on the mtx for 17 years.
It is not for everyone, but this method has worked for me.
Sally

 

[lin]

Jen i hope things settle for you, i know steriods are the pits, but if you have to stay on that dose to help you its better than feeling yukkie hun.

i do know where your comming from,there either up or down hey? im like you been on them for over 4 1/2 yrs none stop to, and they worry me big time, but ive just been tapering down to 7.5mg again, fingers crossed lol
not holding my breathe, thats where i seem to draw a line at that 7.5mg, they had to switch my immunosuppressent drugs. hope you find better days

Lin xxxxxxxxxxxxxx

 

[Jenkay]

Finally doing a little better, went back to 13mg a few days ago and it finally calmed a week long migraine. I'm going to stay on 13 for the rest of summer and then try to go down in the fall.

Lily, my c3/c4 have always been OK. They only labs that are possitive for me are SSA, ANA, and in the past Anticadiolipin. Doc is still considering Imuran but it's funny when she is ready to start it I'm hesitant and when I was finally ready to start it she was hesitant. Ah well, we'll see what happens when I see her in Sept.

Jen

 

[transplant99]

Well i have been on prednisone since the day i was diagnosed--never been off of it. This December will be 21years. When first diagnosed I was on 250mg every other day--yes i know enough to kill a horse. What can I say it has nasty side effects but over the years has literally saved my life. I had a kidney transplant in 1999 (thank your god) that is still plugging away. I am on the lowest i have ever been on--5mg. For many years I could not go lower than 10mg without something happening. Interestingly enough my Rheum. wants me off the prednisone (new doc for me) and my Nephrologist said no way because she has been my doc for 12yrs and knows what happens when I go lower. Of course i'm on many meds for the transplant and other issues. About 6 months ago I started Plaquenil which seems odd all these years with lupus and i'm just starting this med. I have noticed more energy--no side effects except weight loss which is starting to concern me actually that i might ask doc to cut dose in half. Anyway sorry getting off on another topic.

Those tappering be careful. I know we always love to get as low or off this drug ASAP but if you go too fast like i have, you end up on a higher dose then you were on to begin with.

Be well
Julie

 

[Pink Pearl]

Welcome aboard Julie!
Excellent points, you bring up. Now, if we can convince the rheumy's that we know what we are up to, maybe they will get with the program too! Interesting that you have been on it about the same as I have. October will be my 21st year!

Hope you stay well.
Sally