How low should I go?

[christi48]

Did the slow taper from 5mg to 4 over a month's time. Felt great until I hit daily dose of 4mg, for seven days, then pain and stiffness crept back. Not unbearable, and nothing like when I was first diagnosed, but noticeable and uncomfortable. Should I increase to 4 1/2mg daily and see how it goes, or should I go back to 5mg.? I felt great at 5, but would like to see if I feel great at 4 1/2. Is that wise?

[HeronNS]

I think you should go back up by more than 1/2 mg. The usual recommendation is to add 5 mg for a few days, but I personally think at the very low levels, where you are not in a full-blown flare, and were feeling good at only 1 mg more, probably adding 2 mg for a couple of days at least (play it by ear, and if you don't respond by then, you should probably do the recommended increase. Creeping up isn't a good idea). When you find the dose which works, and I hope it will be just that couple of extra mg, it is possible to stay there for a week or up to three weeks, then drop back down either straight to your previous good 5 mg, or in a couple of steps over a few days. At this level where your adrenal glands are starting to wake up it might be a good idea to drop in a couple of steps, not all at once. I've never found a single drop down has been good, and it may be because I've been at such low doses when flaring so any change is a big percentage of the total dose.

Once you're back on track, feeling good at 5 mg again, you really ought to taper by no more than 1/2 mg per month or six weeks from now on. And by using a Dead Slow Nearly Stop taper (perhaps you already are?) you can take 6 weeks for each taper. It's much easier to catch that "dose too far" when you've reached the lowest dose which will work to control symptoms for the time being. Very few of us have an unimpeded journey to zero but have to stop at certain levels to wait for the disease to lessen its activity. Zero only achievable when PMR truly in remission. Good Luck! 🍀

[HeronNS]

I should also add that because the pain crept back slowly over a week it really sounds like you needed either that 5 mg, or 4.5. I've had experience of tapering really really slowly, and at a certain point if PMR is still active it doesn't matter how slow the taper is, one has to stop and tread water so to speak. From what you've said, it may be that 5 or 4.5 is your lowest best dose for the time being, and you can try tapering again after a couple of months of feeling good wherever you are. That's why I suggested no more than 1/2 mg per taper. You did very well to get to 5 mg in 1 mg per month steps.

[Gaz227]

depends on the pain level , I have just made it to 3mg but my symptoms sounded just like yours , I have tried many times to get this low and I stayed with the pain for 3 weeks before it levelled off to normal , I took paracetamol as required to keep going . Good luck 🤞

[HeronNS in reply to Gaz227]

Sounds like for a time your need was actually for something a bit higher than 3? Are you feeling good at 3 now? Hope so! I'm just trying for the umpteenth time to get below 2 and, fingers crossed, it may just work this time. I'm not holding my breath as I've only just got to the stage of taking 1.5 more often than 2 mg, and so far have been going even slower than DSNS! My aim is to maybe come to a semi-permanent pause at 1 mg. Daren't even think of zero any more. It still amazes me how much difference even 1/2 mg can make. 🤷‍♀️

[Gaz227 in reply to HeronNS]

I’m doing ok on 3mg , got a trip out to Singapore in 3 weeks time so staying on 3 Mg till I get back then will start a very slow reduction again , not looking forward to it the reduction that is , but I made a promise to myself to never give up trying to reduce no time scale just keep trying .

[DorsetLady PMRGCAuk volunteer in reply to Gaz227]

Enjoy Singapore - and go to Raffles hotel for a Singapore sling - pricey, but a must daaarling! 😂🤣

[PMRpro Ambassador in reply to DorsetLady]

And don't forget to chuck your peanut shells ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

😂

[Gaz227 in reply to PMRpro]

I had to look that one up 😀👍

[Gaz227 in reply to DorsetLady]

thanks , I’m not a drinker but I’m sure my wife will enjoy that experience 😀👍

[DorsetLady PMRGCAuk volunteer in reply to Gaz227]

Sure she will….😊

[HeronNS in reply to Gaz227]

I've never minded tapers. When I get uncomfortable I just go back to former dose. Learned not to plough ahead regardless! If I go slowly enough I avoid any serious pred withdrawal effects.

[posthinking01 in reply to HeronNS]

Have you been on pred for a long time or just short periods of time - still shows your adrenals are in good shape.

[HeronNS in reply to posthinking01]

I've been on pred since 2015 but was at 3 mg by the end of the first year and *most* of the time since then at a dose of around 2, occasionally less, and a couple of times more, to deal with flare. A morning cortisol test in late 2021, done after missing three pred doses, showed cortisol number exactly in the middle of the normal range (doctor didn't give me the number).

[LemonZest11 in reply to HeronNS]

I suggest that you now cut your pills into quarters at this low dose. It's incredible to think that 0.25mg can make a difference, but it does for me. 🤞

[HeronNS in reply to LemonZest11]

I know people do this, more power to you, but it really is a step too far for me! I've even heard of people with the right equipment crushing a tablet and measuring out even tinier amounts. 😮

[DorsetLady PMRGCAuk volunteer]

Agree with  HeronNS - probably need more than just 1mg or 0.5mg….. try as suggested initially, but you may need to following the usual recommendation re flares as contained in link -

healthunlocked.com/pmrgcauk...

… and back to 5mg, no less…then continue slower tapering plan

[PMRpro Ambassador]

First of all I would suggest a few days adding 5mg to the dose at which you flared - to clear out the accumulated inflammation. Then go back to 5mg and slowly taper to 4,5mg and then you can see if it is enough. You are definitely on the cusp there - but how important is it to YOU to be at 4.5mg rather than the 5mg where you know you felt really well? Rod Hughes, a rheumy who is frequently mentioned on the forum, likes to keep patients at 5mg for up to 9 months before continuing the onward taper, finding that improves the experience at lower doses by allowing the body a chance to catch up.

[christi48 in reply to PMRpro]

That's good to know. I was on the 5mg dose for nine months before I started that DS taper. The thing that is most important to me is doing what is best for my body. I don't know which is worse - a little, chronic inflammation or side effects of Pred. I'm 74 and healthy, but I do have advanced osteoporosis and that scares me...

[HeronNS in reply to christi48]

Although pred does affect the bones to some extent even at doses below 5 mg, the most serious effect is apparently during the first three months of treatment. I have read this in a number of places but not time right now to find a source for you. I don't know the reason. Possibly because that's when we are at our highest dose of pred, and also I wonder if our bodies begin to adapt to the pred so it has less effect on the bones, but that is purely speculation on my part. I do know it is possible to improve bone density even when on pred. I have done it. I have not been diagnosed with OP, but when I started pred it was recommended that I take alendronic acid. I refused this and found another way to improve my bone density. I think even people with osteoporosis who feel they need the drugs can benefit from some of the things those of us who've been able to refuse the drugs do. Have a look at my story, linked below.

I think long term low grade inflammation is probably very bad for us. If the side effects of pred can be mitigated it's best to keep that inflammation in check.

healthunlocked.com/pmrgcauk...

[christi48 in reply to HeronNS]

Thank you so much!

[PMRpro Ambassador in reply to christi48]

As HeronNS says, long term low grade inflammation is very bad for us, predisposing to a range of disorders including mental health problems and cancers. Most of the adverse effects of pred can be mitigated or avoided altogether when you know how. And if you have severe bpne density problems, then there are ways of sorting that too, not just stopping pred before you are ready.

[Hidden]

I've never managed to achieve lower than 5mg. At that mg ca GCA came back. I went up to 10mg for a few days then using DL much slower regime I seem (fingers crossed) to be doing okay at the mo. So advice given is the best....the slower the better, don't allow the inflammation to build up. And only reduce by 0.5mg

Good Luck

[PMRnewbie2017]

I'm going to say the same as those who have gone before but perhaps with a twist. The difficulty we all have at these lower doses is A) Has the PMR burnt out or is it still mildly active? and B) How active are our Adrenals? Dealing with just one of those is hard but dealing with both is more challenging. Most of the time we don't even know the answer so have to rely on experience and we can only gain that by trial and error. Blood tests for ESR or CRP can give false results and a cortisol test will only tell us if the Adrenals are capable of functioning, not that they will do so reliably every day and in all circumstances. Others have given you good advice, only you will know what is best for you. All I can add is go slowly from now on. I'm transitioning down to 2.25mg from 2.5mg and YES I can feel the difference. The first two weeks are the worst because I feel out of sorts and very tired. Then, I get my second wind and feel better. Don't be afraid to slow the DSNS taper even further by staying on the reduced level by more than one week.

[posthinking01]

Hi hope you don't mind me just going slightly off topic but I too want to reduce but just had a cortisol blood test and it is only showing 28 - range 150 lowest range - is this about right for someone who is on steroids.

[PMRpro Ambassador in reply to posthinking01]

What dose of pred are you on currently?

[posthinking01 in reply to PMRpro]

I am on methyl prednisone 4 mg which is slighly stronger than prednisone

[PMRpro Ambassador in reply to posthinking01]

That is equivalent to 5mg pred - so yes, entirely to be expected in someone on that dose of steroid. The other question - had you taken the dose in the 24 hours before the blood was taken? You shouldn't or it suppresses the cortisol level even more.

Most endocrinologists wait until a patient is below 5mg before bothering to test. Some people still have very low levels at 3mg and need to be even lower before the adrenal function wakes up. It is a slow process so a fast taper won't do anything but make you feel dreadful.

[posthinking01 in reply to PMRpro]

Thanks for your wonderful expertise in this area - why do I trust you more than my endo. Yes I did - I couldn't have got there if I didn't take my steroid - horrendous journey by car worrying the whole time about how I was going to park at the hospital - used to always go by train and tube but not able to now due to being vulnerable health wise.

[PMRpro Ambassador in reply to posthinking01]

Then absolutely no wonder it was so low! You must have a full 24 hours between the last dose and the blood sample being taken. Was that for a synacthen test? Does your GP do blood samples at the practice?

[posthinking01 in reply to PMRpro]

No it was requested by an endo at London Hospital - but my GP surgery can do bloods.

[posthinking01 in reply to posthinking01]

Not for a senacten test

[PMRpro Ambassador in reply to posthinking01]

Then you would get a more meaningful result getting them to take a sample for a basal cortisol level at some time between 9am and 1pm at the practice having not taken any steroid since the previous morning. Presumably you could manage that?

[posthinking01 in reply to PMRpro]

Yes this is going to be done shortly in a hospital environment.

[PMRpro Ambassador in reply to posthinking01]

But for either you must have 24 hours free of pred BEFORE the test.

[posthinking01 in reply to PMRpro]

Yes I daresay they will tell me that - hopefully but at least I know I should.

[posthinking01 in reply to PMRpro]

May I ask you a question with my cortisol being 28 which is way below the minimum of 150 - surely it is pertinent to updose when a stress is to be experienced that day or whenever - if I know I am feeling unwell and looking very white I take 1 mg and it helps - but my new endo said I should not do that - I would say he doesn't mean I don't updose for the 3 day sick rules. He is a let them struggle merchant but I feel very ill.

[PMRpro Ambassador in reply to posthinking01]

If you up the pred, then the natural production of cortisol won't return. It is a balance. SnazzyD explains the process very well - she practically went into hobernation while she was waiting for the natural process to restart.