Adrenals at 6.5 mg?

[Missus835]

I know I should know by now, but I've just dropped from 7 to 6.5. It's been 7 days. I feel like shite. Pain in head, occipitals to behind ear. Neck, shoulders, backs of upper arms. Hips and left thigh. Fatigue this morning is over the top. My head is tight. Going to lie down in a bit and haven't done that in awhile. I can only sneak up a bit on the pred, from my now waining stash. GP only allows exactly enough for 28 days. Unsure if it's steroid withdrawal, which I do seem to get with each reduction, adrenals not kicking in yet or a flare or all of the above. Could be the OP or the "fibro". Just looking for your listening ears. Thanks dear ones.

[piglette]

It does sound like your adrenals are none too happy being woken up. Ideally you should hang on, but if you are like me, who was totally incapacitated, go up a little. It could be your body reacting to the reduction too. Give it a couple of days or so to get used to the new dose.

[Missus835 in reply to piglette]

Thanks Piglette. This day 8 and the pain is worse today.

[piglette in reply to Missus835]

Oh no I did not realise it was so long. Did it start immediately?

[Missus835 in reply to piglette]

It's built up over the week. I generally get sore with each reduction, but not flare sore, as it is this day. Thanks Piglette.

[piglette in reply to Missus835]

As the others suggest, it is not a bad idea getting hold of your GP at this point.

[PMRpro Ambassador]

Do you drop from every day old dose to every day new dose in one? If so, spreading it over a longer period helps. And only needs a small stash to do it.

If you really are this bad with every drop you need to see the GP when you are in this state so they are properly aware of the situation. Preferably take someone with you to vouch for you since if you feel ill, you will struggle to present your case.

Why they have to be so silly about prescribing exact amounts for a patient who is on long term pred and cannot just stop it from one day to the next beats me.

[Missus835 in reply to PMRpro]

Thanks Pro for both responses. I think I'll make an appt. She's a hard nut to crack.

[Missus835 in reply to PMRpro]

I do 2 weeks at a .5 drop and then 2 weeks another .5 to make up the whole 1 mg drop she wants in a month. Eye roll.

[DorsetLady PMRGCAuk volunteer]

It shouldn’t still be steroid withdrawal after 7 days… sound more like a combination of flare and adrenals. Agree with PMRpro on addressing situation with GP.

[Missus835 in reply to DorsetLady]

Yes DL. Agreed. It's bad each drop but maybe 2 or 3 days, and not usually this bad. This seems to be escalating daily.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

So sorry you are having such a struggle with a very difficult doctor!

[PMRpro Ambassador in reply to Missus835]

If it is escalating - then it isn't likely to be steroid withdrawal. Much more likely to be a flare because the dose is too low. Or something else is going on, which is always possible.

[Missus835 in reply to PMRpro]

Yes it is Pro. I'm going to try upping tonight. I'm just waiting for the office to get back from their lunch hour and I'll try to get an appt. Holding phone up and typing has become the chore of the day. Lol. Thank you so much.

[Nextoneplease]

Hi Missus 😊

I would really struggle to drop half a mg. in one go as you have (and I am similarly attempting to get from 7mg to 6.5 to 6mg. ) i have similar symptoms to you when tapering and I can’t recommend too highly the slow tapers found on this site under FAQs / tapering.

And I agree, do discuss with your doctor x

[Missus835 in reply to Nextoneplease]

Thanks. I have DLs slow tapers which I was using until my GP tore a strip off me when I showed her. Now she counts my 1 mg pills. They won't allow me 5 mg. 🙄 If they'd actually look they'd see that at the end of 5 weeks, I'd still be down 1 mg, but it would be easier on my system.

[SheffieldJane]

The same thing happens when I taper to 4 mgs from 4.5. I go up again and eventually recover. I am worried about seeing my Endocrinologist tomorrow. He doesn’t seem to factor in PMR symptoms and he won’t be happy. Long Covid which seems to flare up periodically has clouded the picture. If I cancel I think he will knock me off his list.

[Missus835 in reply to SheffieldJane]

Oh SJ. I empathize with you. Since I was diagnosed with fibro, it's become all about that and realistically I don't believe I have fibro. I do have PMR and osteoporosis though. I think she thinks the PMR is gone although hasn't said so. Hugs.

[Longtimer in reply to Missus835]

I am same as you, told it’s now fibromyalgia, a battle we could all do without! Immense fatigue making me housebound, balance bad, weak legs. I miss sitting in the garden but we carry on as best we can.

[PMRpro Ambassador in reply to SheffieldJane]

Get Sarah involved to explain her side of steroid reduction.

[Missus835 in reply to PMRpro]

Do you think Sarah would get involved with a Cdn. GP?

[PMRpro Ambassador in reply to Missus835]

Sorry - that reply was to SheffieldJane who is under Prof Mackie. No, I doubt she would get involved with any patient who is not her own.

[Longtimer in reply to SheffieldJane]

Good luck tomorrow, keep us posted.

[HeronNS]

Well I wish I could share my doctor with you. He never questioned my need (in 2021) for some 5 mg tablets even though my files would have shown I'd been taking less than 5 mg for several years. A doctor should always listen to their patient.

Not sure if this would work for a corticosteroid, but aren't pharmacists now allowed to renew a prescription for a chronic condition? You could try it, maybe say your pills got misplaced somehow if you're reluctant to confess you're planning to experimentally take more than the prescribed dosage. Thankfully my prescription has said for some time the dose will vary depending on response of condition (or words to that effect) - that wording, from the Dr, came after the insurance company questioned the increase!

[Missus835 in reply to HeronNS]

Pharmacist has been brainwashed by the GP, but I could say I'd lost them. ATM I have exactly enough to get me to Dec. 6 at 6.0 mg per day. I'm doing it by half mg drops bi-weekly and don't really give a rodent's behind what she likes. Can barely hold my phone up this morning for the pain. Sorry to moan on Heron. They want me off Pred due to the Osteoporosis, and she said I will thank her in the end. So, if I tell her I'm flaring, she will blame it on the other 2 diseases, not the PMR.

[PMRpro Ambassador in reply to Missus835]

Being off pred isn't going to reverse the osteoporosis. Immobility is a risk factor - and being in pain and PMR-type symptoms makes it far more likely you will fall.

[HeronNS in reply to Missus835]

Fwiw, I was on prednisone with a dose of over 7 mg for somewhat over half of my first year on pred (the time when effect on bones is greatest) and because of what I was able to do to protect my bones I was able to increase bone density. The first DXA scan (5 or months after PMR diagnosis) resulted in a recommendation to take AA which I refused. The second, exactly a year later, showed improvement and they dropped the recommendation. Although due to have another DXA scan after five years we were in early pandemic at the time and I never bothered to pursue it. Did get a referral after breaking wrist, but given my recent history (including conditions under which I sustained the fracture) it's more than likely my bones are fine. Pred is not responsible for all ills, for some of us it's a necessary evil which can be mitigated, and I wish some of these doctors could get that through their thick skulls!

[Missus835 in reply to HeronNS]

I don't know. I wish my bones were as dense as some of their skulls. Lol.

[HeronNS]

Just read through the other replies, some of which arrived as I was composing my first, while making and drinking tea, etc. I know your Dr is a bit intransigent, but if you are (unlikely I know) able to see her at short notice, then that adivce really is the best, especially if you're feeling horrid, no point trying to put on a brave face for the person who's supposed to be the healer. Even a phone visit might be helpful in convincing her that despite your best efforts to follow instructions you are doing badly and need help. 🍀

[powerwalk]

Hope you get some help from your GP. Let us know, its just exhausting isn't it!!