Pred question...

[soootired]

I'm prescribed short courses of pred for flares. I've been off aza since end November last year, began myco early Feb and owing to flaring because of the lack of immunosuppressive meds, I've been told by rheumatologist to take 30mg pred a day for as long as needed short term to get flares under control, whilst myco gets in to my system.

My problem is this, I seen to be flaring all the time so basically take pred for say 10 days, come off for a week, take again for a week, come off for a week, start again...

My rheumatologist said no need to taper if only on for 3 week periods, so does my being off for a few days, or a week count and I can thus start again for up to 3 weeks or does there need to be a longer period in between?

Because I've been on and off taking them in this fashion since 7th Feb. 😶

I know a lot of you have experience with this and know someone can clarify this for me!

Thanks guys 😊

[PMRpro]

I think really you need longer between the short courses - a week isn't enough if it goes on for a long time, more than a couple of months.

But your rheumy needs to think about whether it is the reduction, the withdrawal of the pred that is actually causing the "flares". Withdrawal symptoms with pred have a nasty habit of resembling the disorder for which it is being taken - and here I'm not talking about the return of adrenal function which is what is being talked about when you stop after just a very short course.

Surely there is a place to consider doing this over a longer period with a more moderate dose of pred?

[soootired in reply to PMRpro]

Thanks Pro

I don't take steroids often, only when I flare badly. I found that when on azathioprine I could bounce back fairly quickly when flaring without the need for steroids. However, I've not been on aza for over 3 months and on myco at only 500mg for 1 month, now as of today starting 1000mg myco. So he said the myco would take 8 to 12 weeks to work, and during this time to use the pred.

[PMRpro in reply to soootired]

I wonder why he didn't put you on a longer course, tapering the whole time - surely that would have worked as well to keep you well until the myco kicked in? But he's the professional - hope it improves soon.

[soootired in reply to PMRpro]

He's very anti steroids apparently, he sees them as causing more problems than they benefit... Although if he had to deal with this condition I rather think he'd be of a different opinion!

[PMRpro in reply to soootired]

Quite - I have no choice, pred is the only thing that works for my a/i disorder. I've been on pred for 9 years and there is NO damage to be identified. Most of the things they are so terrified of can be minimised when you know how. And frankly, what use is 30 years longer if I can't live now? Had I had many years more like the 5 years I had without pred because I wasn't diagnosed I wouldn't be here now because I would have sunk into depression and probably topped myslef. They can't have the slightest idea what constant pain and disability is - and it is one thing when pain relief is available, for us pred is the painkiller, even opiods do zilch. Which are addictive but they hand out those like sweeties...

[Lisalou19]

I was treated in this same method whilst no one knew what was going on! It felt like as soon as I stopped them everything come flooding back like removing a sticker from a wound. I had my cortisol blood test to check that I wasn’t killing off my own steroid production, which is something you should enquire about.

My most recent hospital visit he said no more steroids 😰 although they make me much better, he wants to be able to monitor how responsive I am to other medication and his also concerned about my bone density .

I was using your method for approx 1 year. X

[miccika1]

Hm.it doesn't look like that system is working for you. We all need to find the system that works for us personally. I tried different ones and throughout years different ones worked or not. Currently what works for me is 20mg for three days then 15 mg for three days then 10, then 5 then nothing. I have to do this every two to three months. Before i was constantly at 5mg each day and when flaring i increased to 15 for three days then 10 for three days than back to 5. Ten years ago i had to be constantly on 20 for many months as i would flare if i would try to reduce and it took me two,three years to reduct to 5. Hope this was not too complicated but shows that at different times you need to have different approaches. I was always told to taper . I personally wouldn't be able not to taper as i see a difference even in 1mg vs 2 mg. At one point i was taking 1mg per day for long time too ..

[soootired in reply to miccika1]

My GP tells me to do 6 x 5mg for 3 days then decrease by a tablet each day untill off. The rheumatologist said no need, take 30mg a day for however long necessary and just stop. I prefer the GP's approach personally.

I am hoping that the mycophenolate will kick in soon, because when I was on azathioprine it was helping in the sense that I'd still flare if I'd over done things, or was under lots of stress etc but, didn't always need steroids to get over it, I could rest up a bit and bounce back fairly quickly. I'd only need steroids if this didn't work or I was getting over an illness where my immune system tends to go a bit nuts!

[miccika1 in reply to soootired]

Hope MMF will work for you too. I have been on it for 10 years now. I take 4x360mg tablets. (Two in the morning and two in the evening). I try once in a while to go down to three since my WBC stay normal w three but go low with four...

[SonyaNME]

My personal experience of pred is that I need to be much more conservative while tapering then the Rheumy ever suggests or I feel terrible. When ever I’ve bought this up they just say ‘do whatever you feel comefortable with’ so if you feel like tapering my help you should do it, there isn’t really a downside to reducing slowly unless there’s a reason you need to stop all together such as having a bad reaction to meds. Pred can have major rebound effects & none of this is an exact science so everyone is different (hence why it’s always good to have a rheumy that gets it & considers your experiences). I had serious muscle cramps last time I was on a high dose & they all told me not possible, it’s joint pain from a flare (felt totally different), doing my own research I found a lot of accounts of the same issue (some from rheumatologist) so decided to try & manage with physical therapy which works amazingly well, it’s now all subsidising as pred dose comes down & my rheumy has admitted he was wrong, so basically your own experience is really important

[Joy_1]

When I flare I need to take 20mg Pred. Any less and basically it just does not work. But I stay on 20mg for 2 weeks before I attempt to reduce. I then fast track to 10 mg. Reducing by 2.5mg every week.

I did at one point take 30mg Pred in the early days and the Prof told me that this was "aggressive" treatment to get things under control. I cannot recall now but I am pretty sure I had to stay on this dose for 1 month before fast tracking downwards. But again no suddenly coming off the Pred just fast track tapering.

In my opinion you may be 1 - not giving the Pred long enough to do it's job and 2 - coming to a halt too quickly.

Aza too failed to work for me. MTX was my magic bullet. But I stayed on 10mg Pred for 12 weeks before I started to taper the Pred. That gave the MTX a decent fighting chance to do it's job.

[Sue6]

All I can tell you is my experience and being the only one in the group as far as I am aware who has managed to be drug free and lupus free for the last 10 years + then I can say with confidence the only way you will all bet this is with Prednisolone steriods long terms they are a wonder drug. They are the only drug thats strong enough to fights the SLE and make you whole again.