adrenal insuffiency

[Twopies]

using dsns I’ve been at 4 mg for about 3 weeks. The last few days I felt weak, dizzy, lightheaded, and had diarrhea; couldn’t really function. Dr. Google said better call a mortician. Yesterday, Mother’s Day, I upped the dose to 6 mg and late in the afternoon realized I felt pretty darn decent (for me, that is). So what do I do now? Stay at 6 for a couple days to “clear something out”, go back to 4 1/2 where I was for an awfully long time or bite the inevitable bullet and hang with 4? Thanks!

[PMRpro Ambassador]

A mortician? Don't think you are that bad yet!!!

For a start I'd go back to 4 1/2mg for now and discuss it with your PCP. That 1/2mg is the difference between enough for you to function on the pred and not and does suggest your cortisol is pretty low. The next step would be to redo the DSNS taper even more slowly to give your body even more time to adjust and produce a bit more cortisol. Do each step 3 or 4 times so you are spending the same sort of time on each level as it took to catch up with you at the end and see how you get on. That should find out how much you can drop and still feel reasonable. The only way to get cortisol production better is to be at less pred. But you cannot risk an adrenal crisis.

[Twopies in reply to PMRpro]

Thanks. What do you mean by doing each step 3 or 4 times? (I did the dsns long version slow step to get to 4.) Also I’m assuming I should stay at 4 1/2 for say, another month? And btw, my pcp says he’s never had a case of pmr last more than a year so I won’t be contacting him.

[PMRpro Ambassador in reply to Twopies]

Has he had a case of PMR? When it is gone in less than a year, my world-renowned PMR expert says it probably wasn't ...

If you start with one day new dose, 7 days old dose, don't proceed to 6 days until the next new dose, do one day new dose, 7 days old dose 2 or even 3 times, one after the other, If you feel good at that, do 1 day new dose, 6 days old dose 2 or 3 times, and so on. It is very very slow but obviously just doing it once wasn't slow enough to let your body catch up.

[Twopies in reply to PMRpro]

Ahhh. Duh, I get it! Thank you!

[HeronNS in reply to Twopies]

I tapered this way. It took a long time, but went very much by how I felt. First time I tapered from 2 to zero 2019-20 took me twelve months, three months for each 1/2 mg, I relentlessly tapered to zero and felt well enough. But within six weeks I was back on pred and a few months later had a major flare. Then sometime in latter part of 2022 I started again, but this time repeated each step until I had no symptoms, either PMR or possible withdrawal. The steps seemed to become easier as time went on, but I stll made sure to repeat each one. I didn't repeat the last one, which was 7 days zero, 1 day 1/2 mg, simply because I forgot to take it! Having no bad effects it seemed a sign that I didn't need it. That was 1st Feb, 2024. So far so good although I cannot claim to be painfree, and I definitely don't have the stamina of my pre-PMR days. My recent accident did completely wipe me out, but although I lost my appetite I didn't otherwise feel unwell, beyond the expected pain and need to sleep. When I told people I couldn't go on a guided walk because I'd broken my wrist they were puzzled, because surely I could walk? But no, I couldn't and I believe this would have been the case whether or not I'd been on longterm pred, although it probably didn't help.

[Twopies in reply to HeronNS]

Thanks…you’re a trooper! You’ve been through so much! You know what gets me though? The pmr Mayo study found that after 10 years, 42% of their subjects were still on pred, although at low amounts. I fear (believe) thats me…given my age (old) and the length of time I’ve been on pred now (7 1/2 years), and the issues I have with reducing, I ain’t never gonna get off the stuff. I mean: the pmr Isn’t going to burn itself out. In the back of my mind I keep thinking it will; I keep plugging away (baby steps) at the muscle wasting and the daily living skills that are so far below my standards that it’s embarrassing. I’m well versed in acceptance, the elephant in the room, etc.; no diff. As they say: “the struggle Is real.”

[HeronNS in reply to Twopies]

It was 10 years ago I developed significant PMR symptoms. In June it will be 9 years ago I started pred. My early days on pred were great and I'm lucky that around 2 was my maintenance dose for so long. I'm still not convinced that pred and I have really broken up for good!

Good luck to you on this next stage of your journey. 🍀

[Brooklyn747 in reply to HeronNS]

What a blow HeronNS and damn this dreaded disease 😒 but good luck on soldiering on.

[DorsetLady PMRGCAuk volunteer]

Unfortunately what you describe is pretty typical of adrenals struggling... and it seems that 4.5mg is your 'limit' at present...so hang there for a bit longer.

But you need to reduce at some time to nudge the adrenals along ... any chance of cutting your 1mg into 4 rather 2 - or increasing the DSNS taper by repeating each stage so it's a more gentle reduction...

[Twopies in reply to DorsetLady]

I’ve read on here about cutting the pred Into 4ths, so yes, I can do that. And please explain what you mean by repeating each step…I used the long version of dsns to get where I am now.

[DorsetLady PMRGCAuk volunteer in reply to Twopies]

This is DSNS -as described -

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

so repeat each step...

1 day new dose, 6 days old dose,

1 day new dose, 6 days old dose,

then go to -

1 day new dose, 5 days old dose,

1 day new dose, 5 days old dose,

then go to -

1 day new dose, 4 days old dose,

1 day new dose, 4 days old dose etc etc...

[Twopies in reply to DorsetLady]

Thanks—that’s how i got to 4, i use this plan for all my drops.

[PMRpro Ambassador in reply to Twopies]

Which suggests you need to do each step 4 times or maybe even more.

[Boss302Fan in reply to Twopies]

And at no time did you feel PMR pain nor AI symptoms? I’m trying to understand how you got 4 mg doing DSNS and suddenly now have symptoms. If you did have what you perceived as minor symptoms, you should have stopped the taper and returned to the old dose.

[Janstr in reply to DorsetLady]

I’ve been on 2.5 for 2weeks, & after another 2 weeks (had a flu jab yesterday ) will start the process to get to 2. Is it better to do the regular DSNS or the slower way you’ve described above?

[DorsetLady PMRGCAuk volunteer in reply to Janstr]

Really depends how your tapering is going… for many the basic DSNS or my 5 week taper is fine.. but as both PMRpro and I say any taper can be adapted to make the process even slower and easier when necessary.

As you get lower in dose, and depending on how productive your own adrenals are, it may become more sensible to extend the time at each dose.. but only you know how you feel.

[PMRpro Ambassador in reply to Janstr]

No answer to that - you can do what YOU can do. How your body will respond will vary and like everything else in PMR, you have to try and assess how you ae doing. But you DO have to be honest and not in denial about how you feel and actually are.

[SnazzyD]

The trouble with morticians is that they are not much good with advice on adrenal function; the horse has already bolted by that time. Sounds like you were not able to produce enough cortisol on top of the 4.5 mg Pred that you needed, hence those symptoms. This was the new dawn brought on by the 6mg. Had you done anything extra in the few days before? Often one can be fine on a particular dose but then something extra happens and our glands just can’t pay out as needed. For a long time I had to live a very boring life so as not to precipitate this issue. In that time my cortisol producing system responded to a chronic low level and started to work. It’s not just the glands that need to work but the rest of the process that starts in the brain and detection of that low cortisol. A good start is to ask your doctor to check things out but the lower you are the more reliable it is, so 6mg might not be ideal. PMRPro has given advice. It can be a really tricky balance and I can’t say I felt great most of the time but one tries not to feel totally dreadful all the time.

[Twopies in reply to SnazzyD]

The only thing I can possibly think of in terms of extra is increase my total steps (which include in the house) from say 3000 to 5000. And I notice I’ve been walking straighter which has to be a good thing. Nothing else. Boring life, yes.

[SnazzyD in reply to Twopies]

If you are very low in cortisol that could be enough. A morning blood check is a start.

[Sharitone in reply to Twopies]

The only thing! That is nearly double! It's taking me months to get from3000 to 4000, and I'm not there yet.

[Viveka]

They sound like adrenal symptoms rather than PMR, so who knows where that is up to, perhaps better than you think. As SnazzyD says, start the process of checking your cortisol levels (once you are under 5mg again). That will mean you have better information when you restart slow taper. If you are in the normal zone for cortisol, then perhaps in future if you have similar symptoms leave it a bit longer than a few days to see if it resolves itself.

[Omanain]

I use the DSNS method but have typed it into weekly sections as I use a pill caddy. If I don't feel too good I can easily repeat the week before. I typed it on Excel but it is not a spreadsheet, I just wanted the gridlines. I keep copies and just photo copy when needed.

I could send you a copy, but you would need to send me your email address through messages, or you could maybe copy it yourself from this image.

Hope you feel better soon x

PMR reduction plan, simplified??

[Twopies in reply to Omanain]

Thank you for your thoughtfulness! I mark my weekly planner for the duration of the dsns schedule and then revise it as needed. I revise it a lot, should use pencil!

[PMRpro Ambassador in reply to Twopies]

I always used pencil on my calendar - my GP laughed at me. But I pointed out it is easier to revise!!!!