Rayos - time released Prednisone

[Marie1479]

After 2 dr's I found a wonderful rheumatologist who confirmed PMR. She initially started me on 15 mg of prednisone. After nine days I was still feeling quite flu-like and some pain in my left shoulder. She suggested I try Rayos which is a time release form of prednisone. I take it at 10 pm. It releases at around 3-4am when inflammation is at its highest. I'm only on day 2 of this type of steriod so I don't have a review yet. Anyone else on Rayos?

[Rokerman]

Marie - have a look at the recent post from Admiral which describes the various forms of Pred and the reply from PMRPro

This will tell you why some forms of the magic drug vary from place to place.

My own experience has been: diagnosed (by rheumatologist, not GP......) in March 2016 and started, like you, on 15mg - but Prednisolone. It wasn't enough so increased to 20mg and have since tapered to 7.5mg but now adopting DSNS method. Seems to get me thro' the night but hands very stiff in the morning and an early dose required 7:00-8:00 am.

Wishing the best

[arvine]

Marie, which country are you located in, i,m in canada ontario, never been suggestion bout time ou prd, didn,t know it existed, but i have had problems for over 6 weeks, now soing from 4o oct 12 til on20 now, since nov 1 had painful shoulders, buttocks, hamstrings, only get 2-3 hrs sleep a night, etc

[Marie1479 in reply to arvine]

Hi arvine,

I live on Long Island, NY. I am very fortunate to have access to some of the best dr's although my guess is this particular disorder is more prevalent in Northern Europe. I am 2nd generation American. Both grandparents from each side migrated from southern Italy. I'm also 52. Not sure if I fit the profile. I was exposed to black mold at the school I work in about a year ago and was never the same. My dr suspects this could have been the issue. PMR changed my life. I thank god I found this group because I thought I was going crazy. Not sure how your insurance works but you need to keep searching for the right specialist that listens and works very closely to you.

[Sparfy in reply to Marie1479]

I also was exposed to black mold along with multiple chemical exposures at work in dental lab. Interesting.

[tommiesue in reply to arvine]

Hi I am in Canada Nova scotia and have pmr

[PMRpro Ambassador in reply to tommiesue]

This is an old thread - do start a new one so others will see. Only those who were following it before will see it now.

[PMRpro Ambassador]

Rayos is known as Lodotra in Europe. I am on it (I live in Italy) because I can't take the only other corticosteroid available here (Medrol) without major side-effects plus it just doesn't work for me! It is also available in Germany (where it was developed), I know one person there who is on it and has found it better than the ordinary pred she had been on before. It is available privately in the UK - it is only approved there for RA (why it was developed in the first place) and they discourage its use even for RA on cost grounds. There is one person in the UK who is on it I think - but depending on the dose it costs up to £100 per month. A pack of 30 tablets costs about £25 whatever the dose, they come in 5, 2 and 1mg tablets and you have to mix them to get your dose. The NHS doesn't cover the cost - and most private plans in the UK won't cover chronic illness, so it is out of your own pocket.

It was found in a study on patients with RA that the optimum time to take plain white steroid tablets to minimise morning stiffness was 2am. This results in the peak level in the blood being at about 4-4.30am - just at the time the cytokines that lead to the inflammation are shed in the body. By being there, ready and waiting, the pred stops the inflammation taking hold and the result is less morning stiffness. No-one really wants to wake up at 2am to take tablets (the patients were being monitored for something else) so the German company developed a prednisone with a special coating which, when taken within 3 hours of food or with a snack of bread and protein (meat or cheese), breaks down in 4 hours and releases the pred all at once into the gut to be absorbed.

I've been on it for over 4 years now and wouldn't change for the world! One more reason not to want to return to the UK! But you won't find many of us on it - it is horrendously expensive in the USA but I believe you can get it online for somewhere in the region of $60 a pack

[Marie1479 in reply to PMRpro]

My insurance covers with a co-pay of $2.00. I am so grateful for that because this is working much better. What time do you take your dose at night?

[PMRpro Ambassador in reply to Marie1479]

That's great - same as for me, a co-pay of 2 euros per 2 packs. I'm very grateful too!! I take it at 10pm, as the instructions say. We eat just before 8pm so it is perfect. Occasionally I'm a bit earlier or later, never more than 1/2 hour though, can't say I have noticed a lot of difference the next day as a result.

[Marie1479 in reply to PMRpro]

I eat dinner around 6pm as my day begins at 5am. My dr said all I need is a cracker to take with meds. I'm at the beginning of taking steroids for the 2nd time (properly) so who knows if it's the meds or the duration. Each day gets better thankfully. And yes, I now listen to all my new friends on this forum and will pace myself. Instead of a cooking & baking marathon today I will only make rainbow aka Neapolitan cookies today. Merry Christmas !!!

[PMRpro Ambassador in reply to Marie1479]

You do normally need just a cracker for taking meds - but i'm afraid he's wrong about Rayos. It is important that either you take it within 3 hours of food or with at least a piece of bread and ham or cheese for example: the coating has to be in the stomach with a reasonable amount of food to delay its passage through to lower down in the gut. If you take Rayos on an effectively "empty" stomach it passes through and isn't absorbed as well further on. This may result in the effect being lowered because you are in effect taking less. In the right gastric conditions the outer coating splits in half after 4 hours while still in the stomach - and that is what they were designed to do.

I've just put my mincepies in the oven - wouldn't even make them but I live in Italy and can't just buy gluten-free ones from the shop as I would in the UK! I made brandy butter last week - and that is IT. Nothing else...

[Marie1479 in reply to PMRpro]

THANK YOU for advice. I will add some protein to the cracker and maybe have 2. My brother and his family live in the UK and we just facetimed and he was making mince pies too! Where in Italy are you? My mother's side is from Naples, and father from Sicily. My husband's family is from Salerno, which is my last name too!

[PMRpro Ambassador in reply to Marie1479]

I live right up in the north, in Alto Adige, the German'speaking region that is called South Tirol as it was part of Austria until 1921. We are in the middle of the mountains, Alps on one side of the road, Dolomites on the other!

My mince pies are out of the oven - smell awfully good but rather hot yet!

[Marie1479 in reply to PMRpro]

Oh it must absolutely beautiful there especially during the holidays ! again thank you so much for all the help you valuable information you provided me. You were so kind and patient in your Lie to my first angry, in denial post when I was adamant about not taking prednisone. You made a huge difference in my life in the past two weeks so I thank you from the bottom of my heart.

[PMRpro Ambassador in reply to Marie1479]

It's not up to the usual standard! Like last year we have had no snow - I have seen more on the tops of the mountains in August! But all the ski runs are open - thanks to the snow cannons - and the weather is wonderful with cold mornings and sun almost every day. YOu can't have it all ways...

My pleasure!

[piglette]

I have been taking Rayos for a couple of years.