Found my pred level?

[David-F]

Hi all, I've had PMR symptoms for about 9 years now, and been on around 10mg pred for most of that time, pretty much keeping the pain symptoms under control. I've tapered too quickly a few times, and realised I couldnt distinguish between PMR and withdrawal symptoms. So I started again on the DSNS taper from January this year, staring at 10mgs, reducing on average by 0.5mg per month. I've just finished the 7mg to 6mg taper, and ready to start the 6mg to 5mg over the next 2 months. In the last few weeks I have developed familiar upper arm pain and increased stiffness and buttock/hip pain that I originally had, which was eliminated by the initial 15mg treatment over a few days. I'm thinking that I may have reached the point where the dose of pred is not enough to manage the inflammation hence the return of symptoms. I think it was ok last month when I was on 7mg but definitely increased in the last few weeks as I have gone below 7mg. Not quite sure what to do next and would appreciate some advice. Thinking maybe to go back to 7mg for a few weeks and see if symptoms reduce, and if not increase by 0.5mg increments for a few weeks at a time to try to find the lowest effective dose. I'm a bit disappointed as thought using DSNS I could get much lower ie below 5mg but there is no point if I just have a flare. My blood markers have always been normal so I've never formally been given a diagnosis of PMR, the closest was non specific spondyloarthropy from Sarah Mackie in Leeds in 2019. My original symptoms were classic PMR though and came on suddenly in 2015. I've followed the DSNS to the letter for 8 months so don't want to mess it up now.Thanks

David

[HeronNS]

You have answered your own question. You need what you need. And if DSNS helped you get to 7 without problems, but now you have been getting pain again, then one of two things happened. Either you have reduced a bit too quickly (in my final stages Dead Slow became much more like Nearly Stop and I took far longer at each step), or you really do still need 7 mg. If you stay at 7 mg for a while (once your flare is definitely settled) and find you are stable again, then try tapering by half a mg, and do each step twice so you'll actually take three months rather than six weeks to accomplish each step.

If that seems painfully slow, remember this: "It isn't slow if it works". I took something like two years from 2 mg to finally and successfully reach zero - and that was my second attempt to taper to zero. The first time I got to zero it took a year from 2 mg. Symptoms came back in a few weeks, back on pred at old low dose, then a major flare about six months later. That was all happening at the beginning of the pandemic too! I was on pred for a total of 8.5 years.

[David-F in reply to HeronNS]

Thank you, I'm not in a rush and do feel like I have a better idea of my required level now. will stick at 7mg for a while and see if symptoms subside

[HeronNS in reply to David-F]

It doesn't take long if it's pred withdrawal, but if the symptoms get worse, please don't hesitate to give yourself enough to get through it as it may be a flare. Don't taper at all until you are back to the best you normally feel. 🍀

[Viv54]

I am in the same boat , this is my third time of trying to get below 7.5. The last time of trying i really thought i had pulled it off when suddenly ,the niggles start to creep in ! Sharp stabbing pains in my shoulders all the normal aches and pains we all seem to suffer with. I have left weeks in between trying to taper but always end up going back to 7mgs of Pred . So i made the decision last week not to keep putting myself through it. So for now i just do not think its my time yet. So will carry on until my next try but am not going to rush it . Prehaps your body is trying to tell you to hold off for a while. Yes we would all love to be off pred , but ATM quality of life counts and for being in constant pain is not for me. I say listen to your body its trying to say wait a while. Hope this helps Viv.🌹

[Sophiestree]

This is interest as 7 seems to be a magic number ... I had the same issues and mento my consultant that I was getting similar symptoms to pre diagnosis but he said it's most likely pred withdrawal and to persevere. I have and they have definitely subsided although not all gone completely.. I'm nearing the end of this 8 week taper and will be just on 6.5 next week. So hard to know though isn't it.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

This explains why 7mg is the magic number -

WHAT HAPPENS WHEN YOU ARE ON STEROIDS?

The body normally makes approximately 30mg of cortisol per day although that is not necessarily a constant level, measurements of 300mg have been measured in patients undergoing surgery. 30mg of cortisol is approximately equivalent to 7.5mg of prednisone.

Once you have been on steroids for more than 2-3 weeks and at a dose higher than 7.5mg (which is roughly equivalent to the normal cortisol production by your Adrenals [does vary between 5-10mg, sometimes higher, for individuals] known as the physiological level they temporary stop working because the artificial cortisol in your body (Pred) means they don’t have to.

That means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena! Even on higher doses of Pred where perhaps you would not expect to feel fatigued or stressed you do, and that’s because you don’t get that extra “oomph.”

Full link here from FAQs-

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

As HeronNS says - you need what you need!!!!

The same thing happens to me after being on 6mg for about 3 weeks - absolutely no problem at 7mg. I have tried the 7 to 6mg taper at least 4 times now - no go! I am also on Actemra which is obviously dealing well with all the IL-6 inflammation but something is causing the bicep tendinitis, If I leave it it just worsens until I can't lift anything or rotate my forearms which is a bit handicapping!!!!

I suggest you go straight back to 7mg and see if that is enough - if not, I take an extra 5mg for a few days until the pain is gone and then go back to 7mg.

[David-F]

Thanks all, the benefit of DSNS is that withdrawal is much less likely, so I am able to judge the symptoms better. Even then, they come back slowly so not obvious to begin with. I took 5mg yesterday and then 7mg this morning and much of the stiffness and soreness has reduced. I'm guessing that 7mg being an equivalent physiological dose to cortisol may explain why this seems a common dose to get stuck on. I'll stick with this for at least a month and any further tapering will be very slow. In a funny way I am reassured that I'm not going mad about the symptoms as drs generally have been sceptical over the years. I always forget how debilitating they are and impact quality of life so much.

[Wizards in reply to David-F]

As mentioned above by Heron, I too am off prednisone but I would stay months at one point 1 yr before a drop. I made sure I was feeling as normal as normal is with pmr before a drop and my bloodwork had to be in my levels of normal not the rhumitologist. It's not a race. From day one I used the Dead slow method and would repeat weeks often.

[readingbooks in reply to David-F]

7 mgs seems to be a watershed dose. My rheumatologist kept me at that level for a year, actually 15 months, and I have attributed this to my ability to reduce by the DSNS pattern and not, so far, have any flares.( I say, so far, because right now ,at 1 3/4 mgs , I am aware of niggling upper arm.!) . All the above is to say don't regard yourself as being "stuck". Maybe see it as a resting place !

[HeronNS in reply to David-F]

One of the other slow taper plans is called Tortoise Not Hare, and that's a good motto for us all, no matter which slow taper we use. Here's a little poem by Piet Hein I've posted a couple of times.

Things Take Time, Grook by Piet Hein

[HeronNS]

Guess on this version you have to click on the plus sign to read to end,

[Karenjaninaz]

I've been on prednisone about as long as you. Intervening illnesses caused temporary increased doses. Right now I find dropping by 1/4 mg easier to tolerate 6 3/4 and repeating weeks are helping.

[scrambledegg]

Nothing really to add to the posts you’ve had back but your “journey” has been so similar to mine I just had to join in too.

I too was diagnosed in 2015, spent most of that time on 10mg after a few failed attempts at reducing, started DSNS a few months ago and got to 7.5mg daily with no problems. Then I crept to 7mg and the adrenal problems kicked in - mainly palpitations (which have since disappeared) and ringing ears (which hvn’t ….yet). Mild PMR symptoms have returned (stiff hips, thighs and calves) but not those I’ve had creeping back before (shoulders and ribs). I’m considering trying DSNS down to 6.5mg but I’m a big walker and the leg problem is now a slight hinderance so I think I’ll stick to 7mg for longer. Hope I’m now at where the adrenals are stuttering back to life, but the pred. is keeping PMR symptoms at bay.

Any signs of your adrenals kicking in at this level?

[David-F]

12 months ago I tapered off pred too quickly, but did have a synacthen test with baseline 253 (ok) 30 Min 314 and 60min 387, both a bit low but not bad considering. Endocrinologist suggested 5mg then 1mg taper per month, then retest. Pain and stiffness returned though and couldn't be sure if PMR or withdrawal. Hence I went back to DSNS from 10mg in January. it has been easy until now, ie less than 7mg, but I'm more sure now this is PMR and not withdrawal as it has been getting gradually worse over the last few weeks, and is the same symptoms I had in the beginning. Plan now is to stick at 7mg and then only when stable try 6.5mg DSNS reduction and try to be stable on that dose for at least a month. If I am close to my minimum required dose then this has been a success, I don't get any side effects from pred at this level so just need to accept this is my optimised level, at least for now.