Symptoms (?) at lower levels

[musclesinflamed]

Diagnosed with PMR in Jan. '23 and put at 20mg prednisone. Have now tapered slowly down to 3mg without much problem. Every time I start a taper of .5mg I do have a slight increase of pain for two to three weeks but then it fades. Now, between 3.5 and 3mg I am also having increased weakness and general fatigue and am wondering if this is normal. I also must admit that I am experiencing some depression as I wonder if the weakness is the "new me". Thanks in advance for some insight.

[DorsetLady PMRGCAuk volunteer]

Sounds as if it’s your adrenals struggling - have a look at this for more information-

healthunlocked.com/pmrgcauk...

Only way to get through it’s a very slow taper, time, and patience - and it might be worth getting your adrenals checked with a short blood test as mentioned in link above.

Have a look below for slower tapers -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[musclesinflamed in reply to DorsetLady]

Thank you so much for your reply!

[Polygolfer in reply to DorsetLady]

Agreed! I was on a similar pattern and my NHS Rheumatologist always said it would probably not be smooth, even months after I stop. It’s a tricky balance and very individualised, also contingent on the primary problem source for the immune malfunction either to be resolved or sufficiently better, which takes time and differs for every person, especially because no one knows what the problem source is!! But I was told to go down slowly but steadily (especially as I do so much physically) and, if possible, avoid going backwards with the steroids. But your path is only yours, no matter how much input, advice or medical guidance you get, it’s really down to every individual and their condition.

[waltztherapy in reply to DorsetLady]

Hi DLI'm at the low end of tapering prednisolone, currently stuck at 6mg, reducing by half a milligram every six weeks, extending now to 8 week intervals.

In a telephone consultation with the rheumatology nurse, about 3 weeks ago, I asked about tapering from 6mg, having come through another flare, and she suggested alternating between 5mg and 6mg on a daily basis. May I ask, what are your thoughts on this please.

Thankyou in advance.

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

Hi,

Like a few more on here, not a fan of the alternate day of reducing.

I think it’s harder on the body for one thing. Plus don’t see the point of being in the same situation at the end of it as you were at the beginning, whereas on the slower tapering you start at one dose, and at the end you are on a slightly lower one.

Although some Rheumies do seem to like it.

[waltztherapy in reply to DorsetLady]

Thanks DL. This was my feeling last time my rheumy suggested it at the 10mg dose, I felt it my bodconfused my body.

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

I think it does as well, but it’s in the guidelines so someone obviously thought/thinks it’s a good idea… but then they aren’t actually having to do it…

[PMRpro Ambassador in reply to DorsetLady]

The theory sounds reasonable. But in practice???

[PMRpro Ambassador in reply to waltztherapy]

Very confusing for your body and really no better than our slowed tapers in terms of getting from the higher to the lower dose. But at this stage, 1mg at a time is too much.

But don't fall into the trap of thinking 6mg is nearly the end. Many people need much longer to get from 5mg to zero than from 20 to 5. From here on there are two considerations at play: keeping the PMR under control and allowing the adrenal function to slowly return as the pred dose falls. And that takes a lot longer than most people think - including doctors.

[HeronNS in reply to waltztherapy]

I've actually read on a medical internet site (one which used to be easy to access but not so much now) that alternate day dosing may work well for some conditions but is not recommended for PMR. The nature of our symptoms requires a steady state supply of pred, which is why tapering has to be done so carefully and as smoothly as possible.

[waltztherapy in reply to HeronNS]

Thanks for that HeronNS.It's always good to hear some scientific affirmation of what we suspect, from our first hand experience of managing the symptoms of our PMR condition.

This is yet another good example of how well we are supported by this wonderfully forum.

Thankyou to everyone!

[PMRpro Ambassador in reply to HeronNS]

But alternate day dosing as they mean there is double the dose one day and zero the next, not swinging between two different doses to taper. It is often proposed in disorders children suffer where pred is needed to suppress symptoms because it is felt to cause less adrenal suppression or other steroid side effects than daily dosing. But you are quite right about it not being appropriate for PMR - some people struggle to get through 24 hours on a single dose.

[HeronNS in reply to PMRpro]

I knew that, but the alternation of doses doesn't work well, except as transitional part of a slow taper, so I think it amounts to the same thing, for us?

[PMRpro Ambassador in reply to HeronNS]

Not sure if it is the same but my point was more about the terminology. ADD, alternate day dosing, is a recognised approach and it isn't the same as changing doses on alternate days to reduce the dose. Sometimes I wonder where they get the ideas from!!!!

[PMRpro Ambassador]

The most likely cause for the weakness and fatigue is that your adrenal function is not keeping up with the rate at which you are tapering the dose - at higher doses of pred the adrenals get no signal to make more corticosteroid in the form of cortisol. As the pred dose falls to these low levels, a top-up is needed but it takes some time for the system to wake up and get on the job again. Taper very slowly - small steps and not too often and be patient. Even after stopping pred altogether it is said to take a year for adrenal function to settle down and work reliably.

[musclesinflamed in reply to PMRpro]

Thank you so much for your reply.

[Joanbill13 in reply to PMRpro]

Hope I live long enough for them to recover then😂

[piglette]

Welcome to the deathly fatigue. Your adrenals are waking up.

[musclesinflamed]

The other thing I've noticed since this last week during the taper from 3.5mg to 3 is that I have some pain in my upper, lower back (dull pain in what could be the kidney area). Have others had this? Is this possibly the adrenals "waking up"? It was quite bad one early morning and has been a consistent but low-level pain for several days.

[PMRpro Ambassador in reply to musclesinflamed]

It might be something else - a kidney infection for example. Perhaps check with your GP?

[Paulagcl in reply to musclesinflamed]

Agreed with all said here -- I've tapered down to 3.5 and usually about four days into the new dose I am exhausted and have some transitory relatively mild pain. Then I hit a new plateau where I'm feeling much better -- so far it seems like my adrenals are responding. I'm changing dosage every two weeks -- .5 each time.

[PMRpro Ambassador in reply to Paulagcl]

At this stage it will stand you in good stead to slow down to 0.5mg per month. Not just for the adrenal side of things but also in case the PMR is still lurking.

[Grey7 in reply to musclesinflamed]

Hi, I have tapered down to 1mg and I have dull back ache and fatigue when I wake in the morning, I have put it down to adrenals waking up.

[alangg]

25mg to 3mg in a year seems quite fast to me. It took me 2 years to get to 3 from 15 but I have to boast that I didn't experience any flares or recurrence of symptoms.Yes- sounds like adrenals bring slow to realise that they need to start up again which could be because you've reduced too quickly.

[PMRpro Ambassador in reply to alangg]

How quickly you taper above about 5mg is immaterial - it is under 5mg that the adrenal issues materialise.

[Exflex]

I had fatigue and morning dizziness at about the same level. I stayed at 3mg for 3 months, then tapered at 0.25mg every 5 weeks. When I got even lower I sometimes repeated some of the taper steps.

[Chiqui1950 in reply to Exflex]

Thank you so much for sharing!!!

[Hidden]

I am 83 years old and, in terms of energy levels, the same thing has/is happening to me.

I have down dosed from 15mg prednisolone in 13 months, starting in January last year, and I am now on a dose of 1mg. My bloods are all normal with no signs of inflammation or adrenal insufficiency. Indeed, on clinical evaluation, he found no problem with anything else.

My specialist said that when you are at the end of your weaning process and the inflammation has gone, you are left with a beaten up body with injured tissues everywhere, no strength and no stamina. It then takes a long time to fully recover.

He said I could stop taking prednisolone now if I wanted to, and then grin and bear the recovery pain over the next number of months.

However, he advised that I should go back to a dose of 4mg and taper down by 0.25mg every two weeks so that I will finish the job in eight months’ time. He said that low doses of prednisolone do no harm and that the steroid boosts old bodies and brings back lost vitality. He also said, even at low doses of prednisolone, I must continue to take my alendronic acid.

Good luck to you.

[Nextoneplease in reply to Hidden]

“My specialist said that when you are at the end of your weaning process and the inflammation has gone, you are left with a beaten up body with injured tissues everywhere, no strength and no stamina. It then takes a long time to fully recover.”

Oh my, I am 73 and have managed to reduce from 40mg to 7 / 6.5 over three years. And this is exactly how I feel !! It’s going to be a long job, I fear.

Thank you and good luck to you xx

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

That’s a very disheartening comment from your specialist… and have to say he’s not entirely correct.

[PMRpro Ambassador in reply to Nextoneplease]

Not sure being that pessimistic is particularlt helpful. Age doesn't help of course and someone in their 70s getting to the end of PMR is unlikely to recover as quickly as someone in their 50s but there is a member who climbed Anna Purna IV just before Covid, He was diagnosed at the age of 51, in a wheelchair at the time, in 2013 so 6 years later had recovered well enough to set off for the Himalayas

healthunlocked.com/user/Ski...

[Nextoneplease in reply to PMRpro]

I’m sorry, I didn’t mean to sound pessimistic, just realistic. It’s how I feel at the moment I’m afraid. In a strange way it’s comforting to read that others feel similarly. Don’t think that it would be good to hear from a consultant though..

[PMRpro Ambassador in reply to Nextoneplease]

Wasn't you I meant being pessimistic - you said your DOCTOR said that. We all feel down about recovering but a comment like that from a doctor takes away the hope it won't be like that and it really isn't always. It may be a long slow process and you may not get back to where you were pre-PMR - but you are also often a lot older and that alone makes a difference.

[Chiqui1950]

I must admit that I am going through exactly what you are going through--- it makes me smile because I feel less alone in this journey---- although this is easier said than done--- I know I need to get out, and appreciate how lucky I am --- that my condition has not had more severe consequences and deep gratitude for this forum that is carrying me forward--- I am recommitting to that as we chat!!

I wish for you only temporary discomfort--- paying great attention to your body speaking and taking your time as you proceed with your tapering one day at a time

[Joanbill13 in reply to Chiqui1950]

I am just the same. So heartening to read all these comments

[HeronNS]

I think it's brilliant that you got to 3 or 3.5 in a year! I seldom hear of that kind of success, although I achieved it myself . However, after that initial first year (2015-16) I hate to tell you that things did not go as swimmingly. In my experience I was able to taper, but extremely slowly, and was at 1.5 by the end of the second year. But that proved to be too low and I spent much of the next several years at about 2 or 2.5, with occasional attempts to taper again, a six week flirtation with zero in 2020 followed a few months later by a major flare and a few months to get that under control and back close to my usual 2 mg. Now I'm happy to say that my final half mg was taken on February 1st 2024, and hoping that this time it will be successful. I've had the usual "deathly fatigue" at various stages, and have to say I felt it much more this time than the first time I attempted zero, but am nearly four years older, and have had PMR for about ten years (the first year (2014-15) undiagnosed, untreated).

I think you should give yourself a pat on the back, and then proceed very cautiously with half mg tapers, never pushing beyond what keeps you feeling symptom-free. It takes time, but as PMRpro has said, and I repeat her frequently, "It isn't slow if it works." Good Luck! 🍀