New Rheumie Switching Me to Rayos : Today I saw a... - PMRGCAuk

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New Rheumie Switching Me to Rayos

Today I saw a highly recommended Rheumatologist because I wanted to address my morning pain/stiffness in my fingers, hands, wrists, arms, and shoulders. I had tapered from 15mg to 7 in about 8 months but mornings were not too good until pred kicked in about noon. He did not think that this was acceptable. He drew a sort of graph on his white board to show when the body releases inflammatory substances ( about 4 am if I remember correctly). So now he has instructed me to switch to Rayos and take it at night ( I said I would like to take it after my late meal, around 8pm, and he said that would be ok) so as to combat the inflammation and prevent those rough mornings. He said in order to get at the residual inflammation that I have I should go on 15mg for a week, then I think he said I can go to 10 but I will call his nurse to confirm. So a different form of pred now at a different time. I go back in a month. Since i was stuck with morning pain and really couldn't go any lower I think his plan is a good one. Any thoughts?

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Good idea to take medication in evening to combat the morning problems, and to go back up to 15mg. The only problem I envisage is the taper down to 10mg - in one leap it may be too much - would be easier to stagger it 15-12.5-10mg. That might be a discussion point with nurse.

You say you couldn’t do any lower - so maybe that’s the level you actually need to be at for the moment, so don’t be in too much of a rush to reduce from there. Give your body time to adjust to new timings, new drug.

Hope it works.,

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Thanks DL. I will have to get the other smaller dose pills of Rayos for tapering.

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An eminently sensible plan!

Rayos is basically prednisone within an outer shell which causes a delayed release of approx 4 hours. Hopefully you will therefore be able to zap the cytokines release before it gets to do any damage for the day. And you never know, you might be able to get to a lower dose because of that.

I take ‘gastric resistant’ prednisolone which from my personal experience takes 4 hours+ to get into my system. (Has to pass through the stomach for absorption further down) I know this because I used to take it at 8am and I’d have a crappy morning til about noon. So I moved the dose time to bedtime (10pm-mn) and my mornings are fine now. I may have some pains/stiffness (mild) during the late evening, but to me that’s acceptable at the end of the day, and if bad I can just go to bed.

I did a recent ‘experiment’ and moved my dose back to 8am. It didn’t work! Not only did I get my stiff mornings back, but it didn’t really feel as if the pred got to grips with the inflammation, and after 5 days I moved back to evening dosing. Had I stayed on morning dose I think I might have had to increase pred dose, as it was I stabilised at same dose taken at bedtime.

15mg for a week should kick any residual inflammation into touch nicely, and theory is that you should be able to drop back again with no problem. As you were on 7mg and are only dropping back to 10, plus the better timing, I think you’ll find that do-able.

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Thanks, Soraya. Yeah, it would be great if I can get relief from the morning pain and get back to tapering again.

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It is 10pm you take it - within 3 hours of a meal. I've been using if for years and think it is great. Lucky you to have medical cover for it - it costs a bomb in the USA!!

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Do they prescribe it in the U.K.?

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Only privately I think. I think it has fewer side effects so they should!

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Expensive in the U.K.?

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Don't know - look it up on MIMMS, or the Brit Nat Formulary. I can't, out of the UK. It's 27 euros for 30 tabs here,

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Thanks, will do x

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When I make the change today should I take some pred this morning to get me through until tonight when I begin the 15mg of Rayos. Maybe 6mg.

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That would be sensible. A little too much better than not enough! Just occasionally!

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It was actually not expensive....90 pills for $42....5mg

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You were lucky - some in the US had quotes of up to $2K. For 30 tabs.

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I'm nor PMRPRO obviously, but when my Rheumy wanted me to switch from night to day he told me to take my normal dose twelve hours apart. When I said this would equate to double my normal dose over twenty four hours his response was, 'you should have a good day then!'

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Absolutely!!

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Yes, Marilyn. My thought, too!

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A little extra is always a benefit rather than struggling.

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You are very fortunate to have access to Rayos (none here in Canada....sigh). I have to take my uncoated pred at 2am to get an relief, which cause an interruption in my sleep and sometimes I take it later if I sleep through. I split my dose and take the second dose at around 2-4pm. What a game changer for me to wake up without morning stiffness.

Where are you located...the U.S.?

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I only wish I had gone to this Rheumie right from the start. The other 2 never even brought up the idea of Rayos at 10pm to deal with morning stiffness. Well, I took it as directed an hour ago so I'm praying for a nice morning! And it was not expensive...$42 for 90, 5mg pills. Yes, U.S.

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Wishing you a Good Nights Sleep with an even better morning 🍀

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Thanks, Mrs. Nails!

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I just checked my insurance coverage in the US. $19,000 for 90 days. Guess that is not an option for me 😣

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I don't get it. Why not actually try having the Dr. write the prescription for Rayos. With me he had the office staff send out the prescription to 2 pharmacies. One a mail-order pharmacy and my regular Walgreens. He said to just cancel the other one when one of them comes through. Worth asking him to at least try.

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Why is it so expensive in the US?

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It was not expensive and I can't believe my insurance is that much better than many other folks. I paid 42 dollars for 90 pills yesterday.

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I looked on my insurance plan and it's not covered. The price I listed was what they said it cost without a discount. I'll ask my pharmacy and see what they quote me but I'm not encouraged.

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Because they don't have collective bargaining power - and the drug companies take advantage.

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Thought they were bad enough here!

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When Big Pharma meets the NHS ... ;)

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