It's me again.

[30048]

Am getting no help as to why I am not absorbing the prednisone. " Just don't know ". I am up to 25 mgs basically on my own math. If I was getting 3 on a dose of 12....doubling that dose ( almost)!should up me to around 6. My doctors only suggestion was to try the delayed release ..Rayos.....

...in the US. Is anyone on that ? I am feeling better on the 25 and know that some is going through ...my eyes get blurry and my body has a reaction. I am going by the seat of my pants so to speak. BUT following PMR pro's advice that I am the only who can tell what I need. It scares me to change to Rayos .." the devil you know " is always easier or cope with.

[PMRpro Ambassador]

I use Rayos (Lodotra in Europe) - I really like it. It is just prednisone in a coat that breaks down after 4 hours. There are a few people on the forums in the USA using it.

Not quite clear what you mean in your first paragraph.

[30048]

I do not a,ways make myself clear. I was tested for my cortisol level because I was NOT feeling well . On a dose of 12 mgs. Prednisone My cortisol level was three. I was told to up my dose to 15. You said in a post that I was the only one who could say what dose I needed. As a result I have upped it, in increments to 25. They will not test again for two months. My original rheumatologist, who would not test it( it is not valid) is no help. Her suggestion was to try Rayos or Acthar ( ACTH). The endocrinologist who tested me just told me to check with my rheumatologist and eye doctor due to my eye issues. I get the most guidance from this forum.

[piglette]

I don't understand why you are scared of taking Rayos, it is just a more modern form of prednisone. I take Rayos, I took my old version one day and then switched to Rayos the next day.

[30048]

My doctor was not encouraging . Said it was all marketing . Had not found it had worked the few times she tried it. She does not appear to have encountered my non absorbtion problem very often.

[piglette in reply to 30048]

That is interesting, did she tell you which disease she had tried it on and it had not worked? I think I would put money on it not being PMR!

[PMRpro Ambassador in reply to 30048]

It isn't "all marketing" - those of us with morning stiffness will cheerfully support the company on that one! Wonder how she used it - you still need the right dose.

Though to be honest - I think you may need another rheumy because this one sounds a bit clueless.

[30048]

I agree....I will try to find a better one. I have not been able to drive far because of eyesight problems and LA traffic is gridlock most of the time so I am stuck in my "rural" part of LA. Your help has been my savior . Thank you so much.

[30048]

Just checked on Rayos...13,500 $$ for a one month supply . Not covered by insurance.

[PMRpro Ambassador in reply to 30048]

There are people in the US whose insurance covers it. I think the price in the US is appalling - the price for 30 tablets is 28 euros here, the most I need is 3 tablets a day to make up a dose, so max cost 84 euros a month and it is covered by the state healthcare system. I'd seriously consider paying that if they said it couldn't be covered for any reason.

[piglette in reply to 30048]

$13,500 I am gobsmacked at the cost. How many tablets does that buy you I wonder.

[30048]

Thanks for your comments . That covered 150 tablets. The man in the drugstore said... " guess you better stick to the old stuff" . Our health care system is out of whack....in more ways than one. I probably can't get it in Canada or Britain due to your national health plan. Could it be shipped from Italy? Just a thought. Trump would probably have me deported 😚

[piglette in reply to 30048]

My gosh that is nearly seventy dollars a tablet. You cannot get Rayos on the NHS in England for PMR only privately, so if you can get a private prescription you can buy it. A friend of mine comes over from Canada to get a certain HRT medicine.

[PMRpro Ambassador in reply to 30048]

You can have it in the UK if you pay for it privately.

[30048]

Thank you. My daughter has colleagues in London and she would have them bring it back to the states. I did not know if that was possible...will they honor a prescription from a foreign doctor or would I have to have one from one in England ?

[PMRpro Ambassador in reply to 30048]

I'm fairly sure you can get it from on-line pharmacies with a private prescription from the USA - someone posted to that effect some time ago but I forget the details now.

[piglette in reply to PMRpro]

Sounds reasonable. In fact that is exactly what my Canadian friend does thinking about it, but she comes over to get it.

[Amkoffee]

I don't exactly understand your math, but I want to try to help you because I'm from the US. If I'm understanding, your on 25 milligram and you're not getting the relief that you think you should be getting. I'm hoping I've got that right. And you and your doctor think it's because you're not absorbing your Prednisone the way you should be. I would say three things about it. Number one maybe not all of your pain is PMR related. I'm not saying you don't have PMR what I'm saying is maybe you have another underlying condition that is also causing you pain that you are feeling. And you may need to do some more testing to see what that could be. In my own case it turned out to be that I needed to up the dose on my thyroid medication. Option number 2 is that you simply haven't given it enough time. You didn't say how long you've been on prednisone and for most people they get results within a few hours to a day or two. But there are a few people that it takes a week or as much as two weeks to get results. But I would say that if you haven't gotten any results within 2 weeks then I would start questioning your PMR diagnosis. Option number three you simply need to be on a higher dose. 25 milligrams is a pretty decent dosage but there are a few people that need to start on a higher dose.

I hope some of this helps you out. Good luck on your PMR adventure.

[30048]

Thank you. I have GCA and have been on prednisone for five years. In the last few months i have suffered from adrenal insufficency ... i was tested and found to have only a level 3 of cortisol.. am trying to figure out right dose. I realize that at 80 there could be something else lurking around also.