Splitting doses experience

[slopers]

Since my PMR journey began 2+years ago I have always split my dose between morning and evening and it seemed to work for me. I just completed my first slow taper method of .5mg that was recommended on this forum and so far so good! I'm currently taking 6.5mg prednisone split 4.5. in the am and 2mg in the pm and if all goes/stays well I hope to begin my next taper in 30 days. The plan is to cut the evening dose to 1.5mg at that time. I'd love to hear from anyone who has always split doses and what their experience was when and if they eventually cut to one dose. Also, I'll repeat what many have said...this is a great forum with such caring people! Thanks

[Raven1955]

Without going through the whole tale, I had difficulty getting below 10 mg and still keeping the PMR asleep. I split the dose until I got down to 6 mg and my evening dose just wasn't doing the job. I ended up going back to a single dose at bedtime and it's worked for me. That was a year or more ago and currently I'm back to 6 mg again! But that isn't the fault of dosing. Everyone is different but it was good that I was able to go back to a single dose. Splitting when you get below 6 mg would be interesting otherwise. As my rheumy said, if I got to 4 mg he'd be fine with me taking it forever, as that low amount doesn't hurt anything. Nice to know. All that matters is what works to keep the PMR sleeping. Getting to zero isn't the goal.

[slopers in reply to Raven1955]

Thanks so much for the response. I know everyone is different but it's good to hear others experience. I have an appointment with my doctor in May and will bring up the subject of whether or when to go back to one dose. I'm curious as to his opinion as to whether to take the one dose in the morning or in the evening. He also mentioned, as your rheumatologist said, that he would be okay with me getting to and remaining at the 4 to 5 level for long term if need be. Taking it slow and steady!

[kulina]

I've always split my Pred dose and now I'm at 3.25 mg after 5 years of PMR. The toughest reduction was below 6 mg. I was stuck at 6 mg for about a year but that is normal because it took a while for my adrenal glands to start working again. I take 2 mg in the morning and 1.25 mg at night. It's a pain to cut the pill in quarters but I was never able to reduce by anything more than .25 mg at a time. Hoping to start reducing to 3 mg soon with the also reduction. At 4 mg I tried to take my dose only in the morning but after 2 days my pain was coming back so I went back to splitting the dose. Not sure if I'll ever be able to take it in one dose and not sure I'll ever be able to get off of Pred but I've been feeling great and stronger than ever for the last year. I hope this helps,

[slopers in reply to kulina]

Thanks for sharing. It seems we are on similar paths, though I'm 2.5 years into it. Each attempt to taper below 5mg cause the pain to resurface. I then go back to my comfort level of 7-7.5mg. As I have mentioned, I am currently in the process of tapering using the DSNS method and am down to 6.5mg daily and so far so good. I believe that my prior attempts were too fast. I'm glad to have heard your experience regarding the split doses and since it's been working for me as well I'll continue to do. Something that I'm not clear on is whether we ever stop the attempts? I feel like it's a constant cycle. How will we know if we're in remission if we stay on a dose that makes us feel ok? You mentioned that you feel great at 4mg but what usually spurs you on to try lowering again? (my Dr. actually doesn't have an issue with me continuing using prednisone long term at 5mg or below)

[PMRpro Ambassador in reply to slopers]

You need to try a 1/2mg reduction every few months - if it works you can try another and so on. When you find the dose that doesn't work again, you go back to the previous one and wait a few months. Eventually you get to a really low dose - maybe even zero. But sometimes 1/2mg keeps things ticking over but zero doesn't work.

[slopers in reply to PMRpro]

As usual, thanks for your help. It's such a wonderful service to all in the forum. I look forward to posting my experiences.

[kulina in reply to slopers]

I agree with PMRpro on everything she says. Actually, I thank you PMRpro and DorsetLady, I learned a lot form them. I only reduce if I feel well for about 2/3 weeks after finishing the DSNS reduction. That's what my doctor recommended. My doctors want me to reduce and get off Pred. They, at some point, even recommended Methotrexate when my reduction was going well so I refused it. Why add another medication when all was going well at 5 mg at that time? I'm only able to reduce by .25 mg. Reducing by .50 mg didn't work for me after the 6 mg reduction. I did have a doctor who said I might never be able to get off of Pred. She was good but the system she worked for was really bad so I'm not seeing her anymore. I don't know, she might have a point but she said I might be on 2-3 mg Pred for the rest of my life not 5 mg. Yes I think it's a continuing cycle, and like everyone on this forum says: "It's the lowest dose possible to keep pain free rather than a race to 0 mg."

[Joanbill13]

Interesting to read all the above. I’ve had to go back up to 15mg from 6. So much pain in my right arm. Can’t do anything. So fed up but can’t stand the pain. Will have to put up with prednisone side affects

[PMRpro Ambassador in reply to Joanbill13]

If you only have pain in one arm it is possible it isn't directly due to the PMR. It could be bursitis or a rotator cuff injury - and that needs to be looked into.

[Joanbill13 in reply to PMRpro]

Didn’t realise that. I started off 20 months ago with terrible stabbing pain in right arm. All started with a failed carpel tunnel op. Couldn’t move at all. Will look at bursitis. Would that mean if it’s bursitis increased pred wouldn’t help

[PMRpro Ambassador in reply to Joanbill13]

It might help if the dose is high enough and it is inflammation - as opposed to injury. Frozen shoulder is often diagnosed when it is really early PMR - and vice versa is also possible. But PMR is mostly bilateral. Unilateral isolated pain needs to be investigated.

[Joanbill13 in reply to PMRpro]

Just look at bursitis don’t think it’s that. Haven’t done anything to cause injury that I know of. Thanks as usual for your comments. Hope all well with you both

[Joydeck]

My records shows I spent two months on 2:1 split dose (morning: evening) while tapering 24 – 19 mg pred. I took the doses immediately after a meal. The split dose eliminated my daytime PMR symptoms.

A couple of months later, I had transitioned to 2:3 morning: evening, while tapering 18 – 12 mg pred. I stayed at 2:3 for eight months, while tapering to 7 mg pred.

Over the next six months, while stuck around 7 mg, I transitioned to a single dose in the morning without issues.

Two years later, I remain on a single dose having tapered to 0.8 mg pred (now reducing 0.1 mg every three weeks). I was stuck for a whole year around 3 mg pred. In my 3 ½ years on pred, I have been mostly free of PMR symptoms, thank goodness. 💐