Tapering angst

I have been taking low-dose naltrexone since February, in the hope that it will help me cut down the prednisone. So far, it has not done that, but for many patients LDN takes 6 months to a year to make a difference (and for some, it never works). Meanwhile, my neuropathy and sciatica have disappeared, and I feel optimistic, so I'm a big fan of LDN. Unlike MTX, LDN will not hurt you.

Thank you for your input!

I'm sorry about your tapering setback. I'm relatively new (diagnosed 5/9), started prednisone at too low a dosage (20 mg daily), had it increased to 30 mg with a split dosage on 5/23 for 1 month, and have been symptom-free with a few tapers since, although I'm still currently at 17.5 daily.

I've read a lot of stories about symptoms re-appearing when getting below 10 mg daily, which worries me. My rheumatologist advised yesterday that, when I get to 10 mg daily, that the split dosages will end, and I'll reduce by 1 mg every 2 weeks from there, with 1 daily dosage.

Did you go from a split dosage when at >10 mg daily, to a single morning dosage for 10 mg daily and below? I've been symptom-free since I went to 30 mg daily with a split dosage, so the idea of a single daily dosage when I get to 10 mg worries me a bit.

Hi, I, too, exercise a lot but it really hasn’t protected me against the PMR set backs. I am currently taking MTX 15 mg and tapering down the Prednisone-which I am now at 9mg. I have found to take it day by day….unfortunately.

I would be concerned too. But I don’t quite see why the split dosages must end, if that’s what you’re more comfortable with. It might just be that it’s hard to cut the pills that small, but you could get 1 mg tablets if that’s the case.

Can you talk to your rheumatologist about your concerns to understand why they’re recommending ending the split dose and your worries about it?

My dad doesn’t take a split dosage, but if he wanted to, I don’t think his rheumatologist would see a problem with it. Both mine and my father’s rheumatologists are very open to hearing our preferences and usually unless there’s a medical reason not to do something, they have no problem with working with us. Maybe there is a reason to end the split dose, but if there isn’t and it would make you feel better, maybe it’ll be fine and they’ll agree it’s okay for you to do it.

The tapering schedule isn’t set in stone. For example, we found that when my dad got to 10 mg, he had to slow things down further. He will reduce by .25 mg for a minimum of 2 weeks. But he’s actually been on 6.25 mg for 4 weeks because he was getting over a flare and we wanted to be extra cautious to make sure he’s stable before dropping it again.

His rheumatologist told us to go down to 6 mg after two weeks when his labs looked good. And I literally just said: “We’d like to stay at 6.25 mg for a little longer just to make sort much dad is stable after the flare.” And she said it was okay.

If it’s important to you and you’re worried, I’d ask.

Thank you for responding. Day by day it is!

I have been back up to 10 mg daily for about a week now. Insomnia, sweats, general malaise. I do split 5mg with breakfast and 5mg around 10pm.

Do you think the split dose might be contributing to the insomnia? I know some people respond better to the split dose, and others not. I ask because my dad tried splitting the dose based on the suggestion of one of his doctors, but it backfired because he's very sensitive to the activating effect of prednisone. He was wide awake in the middle of the night, so he only tried it the one time before realizing he needs to take his full dose in the morning.

I guess it wouldn’t do any harm for me to try the full dose in the morning. I’ll give it a try.
Thanks!

My rheumatologist said when I got to 10 mg to take full dose in morning!