Rayos Time release prednisone

[casse]

Hi, Haven’t posted in a while, but read every day. Update be 5 years next month for pmr In five years in December positive biopsy for GCA. Started 20 mg for pmr, bumped to 60 for GCA. Can’t get to 10 mg without bad flares. Still so much pain. Did have total hip replacement which caused huge hematoma, but doing well. Need other hip replacement in January, worried about increasing prednisone. Has anyone been on high doses for years? Also, Has anyone been on our Rayos, the time released prednisone??? See rheumatologist on Tuesday and thinking about going on. Is very expensive, but checked with insurance and they will pay most of it. Worst is in morning can barely get out of bed or walk, sometimes 5 to 6 hours. Just don’t understand after five years why I can’t get below 10 and get my adrenal gland working again. Would love to hear from anyone with similar problem. This site is just amazing and so helpful through the years.

[PMRpro Ambassador]

I have been on Lodotra/Rayos for over 6 years because the only alternative here in northern Italy is methylprednisone and with that I had horrendous adverse effects as well as needing 20mg to get any relief and even then it wasn't much! I like it but I also did well on prednisolone in the UK as the antiinflammatory effect obviously lasts the full 24 hours for me (it varies from 12 to 36 hours depending on the patient) so I wasn't bad in the morning anyway.

It is perfectly ordinary prednisone in a special coating that breaks down in 4 hours under the right stomach conditions, you take it within 3 hours of food or with a substantial snack (they suggest bread and cheese (the sort of evening meal Germans often eat as it is made in Germany). That really is the only difference and a similar effect can be achieved for many by splitting the dose, mostly about 2/3 in the morning and the rest later at a time that allows the effect to carry over to the next dose. I doubt you will get a lot of testimonies as it isn't availabe at all in the UK and I only know of a few in the USA who use it - because of the price. In Europe 30 tablets cost about £25 so a months dose costs up to £100 depending on the number you need to make up your dose (up to 4 for some doses up to 20mg).

Some think it works better and has fewer side effects - I have none but I had nothing much with prednisolone and then I wasn't eating a low carbohydrate diet as I try to now.

I have been on steroids of one sort or another for over 10 years, much of it at above 10mg, I got down to 5mg for a year or so but that was all, since then I have been back to 15mg and am now at 10mg. It doesn't bother me and I have very laid back doctors.

I'm surprised you aren't considering Actemra - the biologic which is approved for GCA, seems to work well and is fairly commonly used in the USA. Ludicrously, it is cheaper in the USA than pred in the form of Rayos, and does seem to manage to get about half of patients into remission from GCA and reduces the pred dose required for others considerably.

[suzy1959]

I 'll be having my second hip replacement tomorrow and have had PMR for 7.5 years, never happily below 11mgs. This will be my third replacement in just over a year and I have a knee replacement to get before I am hopefully finished. I don't expect my PMR to improve until I have eliminated as much of the OA pain as I can, so probably the middle of next year, I may try to reduce.

Perhaps we should form a little club of long-timers? I think we all sometimes wonder if we are the only ones soldiering on!

[PMRpro Ambassador in reply to suzy1959]

All the best for tomorrow!

We are a select crowd

[casse in reply to suzy1959]

Will be praying for you tomorrow Susie that all things go well with your surgery.

[Linny3]

I have been on rayos for 2 years. Was on reg. pred. the year before that. I take rayos about 10:30 at night. It has really helped with the morning stiffness,. Before rayos It took me 2-3 hours to get going in the morning. Now I am usually ready to begin my day after being up for 1/2 hour. With reg. pred. I was growing a lot of facial fuzz. With rayos I grow very thick black hair on my chin. Lots of sweating with both types.

Good Luck

[casse in reply to Linny3]

Thanks Linny, I am encouraged and will talk to rheumatologist Tuesday about starting Rayos. I’m very blessed that my insurance will cover most of it. Do you know, can you mix the regular prednisone and then just take Rayos at night. Some days I can’t get out of my chair for 3 to 4 hours because of all the pain. It is so hard to get out of the bed in the morning. I think the prednisone has less side effects than the Actemra? Was all set to take it but had too many stomach problems. Have diabetes but not insulin-dependent yet, and osteoporosis from The prednisone, but been on for five years. Again thank you. Do you have trouble sleeping taking it at 10:30 PM? I read it takes about four hours to start kicking in.

[PMRpro Ambassador in reply to casse]

If the Rayos is working properly why would you need ordinary pred?

Doctors don't think pred has fewer side effects than Actemra, that's why they think it is so great... I suppose it is a matter of opinion!

And no, I think you have misunderstood - it takes 4 hours to release in the stomach, it is exactly the same as ordinary prednisone otherwise so will take another couple of hours after that to start to take effect.

The ideal time to take pred to minimise morning stiffness is 2am so it is at its peak in the blood at 4am which is when the body releases the inflammatory substances that cause the trouble. All Rayos does is save you having to wake up at 2am to do that.

[Linny3 in reply to casse]

Hi

My Dr. said it was fine to take the two types of pred. together. I take 12 mg. of rayos at night and I take 1/2 mg. of the reg pred. the next day. I don't have any problem getting to sleep. Sounds like you are in to much pain. I have found, if I have the right amount of pred., the mornings aren't as painful as yours seem to be.

We are very lucky to have insurance that covers the rayos. I am doing much better by being on it. I was told that my 5mg for 3 months was $36,000 without insurance.

Good Luck

[casse in reply to Linny3]

Thanks so much, I am encouraged. I went back off from the 10 to 13, so maybe I could do similar to what you’re doing. Yes morning pain is terrible for hours and my CRP and sedimentation rate has tripled. Again thanks so much I will keep you posted see the rheumatologist Tuesday. I’m really excited hoping this helps with the pain and I know they have replacement didn’t help either another reason I want to get the prednisone down before January 7 the other hip replacement.

[PMRpro Ambassador in reply to casse]

If your ESR and CRP levels have shot up and have remained high it is a sign you probably simply aren't on enough pred to manage the inflammation - taking a different form alone won't help that, you need a high enough dose.

[casse in reply to PMRpro]

Thanks pmr pro. Yes I have bumped it up and always do when I feel terrible and my numbers are high. Problem was I usually get bloodwork every 3 to 4 weeks and went a couple of months without blood work due to antibiotics and a UTI should have gone up sooner trying to keep at 13 as not sure still flaring or be withdraw, will give it two more days and see what rheumatologist says Tuesday. trying so hard to reduce the prednisone as I know they will bump me up a lot when I get my second hip done in January just hoping I don’t get complications with this one. Appreciate all your insight.😀

[PMRpro Ambassador in reply to casse]

If the numbers are high it is inflammation - not withdrawal. Although the UTI may have increased the markers - but also could have led to the flare.

[casse]

ACTEMRA Is very hard on the stomach from what I’ve read and my rheumatologist, who later changed her mind and decided not to prescribe it. Will discuss with her on Tuesday, but if possible prefer to take my larger dose of prednisone in the morning. Then the other dose at 10 pm of the RAYOS to help me move better in the morning I don’t want to have to get up at 2 AM to take, as I need to stay upright for an hour or two afterwards because of my stomach. Issues. I do take ranitidine for it. Only have one working kidney so would prefer the RAYOS over the Actemra.. Will try it and see how it goes I guess thanks again for your help.

[PMRpro Ambassador in reply to casse]

If you are splitting your dose anyway you should be able to adjust the timing so mornings are better.