Rayos/Time released Prednisone

[Leeleep]

Has anyone been on the above? Was it better for pain relief? Price is $2700 for a month supply but can be supplied to patients for free through a specific source.

[piglette]

From my point of view I am not sure it made much difference to the pain relief but I felt that it was better from the side effects point of view.

[Leeleep in reply to piglette]

If it gives me back my normal thin face and body I would feel better.

[piglette in reply to Leeleep]

It is not that good! I cut out simple carbs and also gluten which did help though. I think it is slightly easier to reduce.

[Leeleep in reply to piglette]

I eat like that too. Cheat around once a week but not a terrible cheat because Inget migraines.

[Constance13 in reply to Leeleep]

I won’t change a thing!😟

[Constance13 in reply to piglette]

It’s the same stuff - pred, but coated.

[piglette in reply to Constance13]

Got it in one!

[Ciar]

Good luck getting it free. Drug prices in the US are scandalous.

[Leeleep in reply to Ciar]

A step st a time. If it works I believe I can get it.

[pmrkitty in reply to Leeleep]

You can get it if you have insurance that won't cover Rayos.

[Hindags]

I've been taking it for about 21 months. I started about 6 weeks after regular morning Pred. I was having pain around 4 am from the inflammatory dump that happens around then and was stiff until the 8am Pred finally kicked in. I had experimented on my own with taking 5mgs regular Pred when I woke to use the toilet around 2 am. Both the pain and stiffness were better. When I told my Rheumy she prescribed Rayos for me. I've had no side effects from it as far as I can tell. I'm at 4-3 on dsns taper now.

[Constance13]

I’ve been on it for 3 years, stomach couldn’t cope with pred.

Medicines and doctors in America are unbelievably expensive. We don’t pay anywhere near that in Europe.

Go urgently to the “free source”.

[PMRpro Ambassador]

I'm on it and I really like it. But if the PMR flares I still need a higher dose. The way it is made/presented has nothing to do with the level of pain relief, it is the dose of the steroid that makes that. I am on Lodotra/Rayos for the pure and simple reason it is the only alternative corticosteroid to methyl prednisolone here where I live. Medrol made me really unwell with severe side effects. I had been on prednisolone in the UK and had had no problems, not even weight gain, it just redistributed. Prednisone is prednisone - and if there were the plain variety I would use that.

Steroids are steroids and have the same potential side effects. Lodotra/Rayos hasn't "given me back a thin face and body" - I had/have to work hard to get and keep my weight down and stable. And I am still officially on the border of overweight/obese, still heavier than I was on prednisolone but I'm stuck.

It isn't a miracle - try it if you can get it "free" (it isn't really "free", it is piggy-backing on the insurance companies who will pay for it at the ridiculous price and charge all their customers accordingly). But don't expect miracles or even a significantly lower dose or improved pain relief.

[karools16]

Like your new pic.

[Leeleep in reply to karools16]

Thank you. I aged ten years on 18 months of prednisone 😢

[Linny3]

The best thing about Rayos, which I have been on for 4 months, is by taking it at night the pain and stiffness are very much reduced in the morning. On reg prednisone it took me about 1 & 1/2 hours to get moving. With rayos I can get moving in about 1/2 hour.

I started experiencing burning in my feet and legs. Still trying to determine if it could possibly be the Rayos. I did not have the symptoms on the reg. prednisone.

I will be doing a nerve test in a few weeks.

My insurance covers most of the cost.

Good luck, worth a try

[artfingers]

I was on it for a year, took it at around 10pm at the time it was 5 mg. However, once I learned the cost, I could not justify the huge price tag so went back to regular prednisone. I did not see any difference. I would not pay (or have my insurance company pay) that kind of money. Mine was like $7,000 to $10,000 a month! Not worth it.