2 year struggle to get off prednisone still hard to get from 3 to 2mg

That's interesting!!! I have never tried Dexamethasone but I can see how a stronger steroid might work better.

My rheumatologist only used Prednisone. I was supposed to taper Prednisone "as tolerated." I didn't tolerate a lower dose of prednisone very well because of increased pain so I stayed on a moderately high dose of Prednisone for a very long time. I think at some point my adrenals were so suppressed that I couldn't regulate my inflammation level very well without Prednisone. When I was able to decrease my Prednisone dose with Actemra, my cortisol level improved. After my cortisol level improved was I able to discontinue prednisone without any problems.

Rayos is just enteric coated Prednisone. Instead of "instant released" uncoated prednisone, Rayos is a "delayed release" coated version of Prednisone.
https://www.rayosrx.com/
For some reason, Rayos is very expensive in the USA and Medicare won't usually pay for it. If a government funded insurance program like Medicare doesn't pay for a medication then private insurance companies won't either unless they charge higher premiums

Thank you, yes, this does give me a better idea of the criteria a Rheumatologist would use to advocate for a PMR patient to commence Actemra. It does seem very wrong that you had to go through so much pain and inflammation and damage from less effective medication to be approved for a drug that your Rheumatologist knew would work better for your condition !!!!!

Our government doesn't get overly involved in medical decisions except for granting FDA approval of the research submitted by pharmaceutical companies for the treatment of any disease.

Actemra hasn't ever been FDA approved for PMR because the research hasn't been done. My rheumatologist was just aware of the GIACTA research done for GCA and subsequent approval of Actemra by the FDA for the treatment of GCA. I haven't ever been diagnosed with GCA but plenty of patients who have GCA also have PMR. My rheumatologist believed Actemra "should work" for PMR alone because he knew it was working for patients who had both GCA and PMR.

The recommendation from the medical approval board at my hospital was to treat me "as if I had GCA" based solely on my medical records, symptoms of PMR, and being unable to taper off Prednisone along with the"failure" of multiple alternative medications.

Kevzara is now FDA approved for PMR. With that approval, I now could easily be switched and treated with Kevzara as another option. However, since Actemra was approved for me, it won't be taken away and stopped as long as it still works for me.

For me to get approved for Actemra for "PMR alone" was just lucky. My rheumatologist had to convince some other doctors that Actemra might work for me and I'm grateful that he did that. That was over 4 years ago when no biologic was FDA approved for PMR.

I am coming up to 8years trying to get off!!! always get down to 1.5 then flare and go up to 5 for a week and quickly back to 2.5 then try again and again and again. slowly slowly. nothing works. now just at 2.5 and dealing with lots of morning pain. But do NOT want to go up again. good luck!!! Hope your taper is successful. any tips would be welcomed.

I feel for you I have struggled on 2mg but just gritting my teeth as I want to be off it wish I had some tips to make it easier but I haven’t
I think that’s what I have found so very hard about prednisone that if you have a hard time with tapering that’s just the way it is if I had known about the possibility of changing to hydrocortisone earlier than I did I would have tried that
I do wish you well I will go down to 1mg at end of May and expect to be sore nauseous and have headaches but will see the end in sight !

I was on Prednisone for more than 12 years. I wasn't able to get much below 10 mg. My absolute lowest dose was about 7 mg but that caused my symptoms to return. I was informed that being on Prednisone for such a long time was going to make tapering off Prednisone a difficult challenge. It won't make any difference how you taper if your adrenals don't start producing more cortisol.

When I tapered off Prednisone, my endocrinologist said I needed to stay on a prednisone dose of 3 mg for "as long as it takes" for my adrenals to produce more cortisol. I was told not to attempt to taper any lower than 3 mg until my cortisol level improved. In total, it took me over a year until my cortisol level was called "adequate" after I could stay on a 3 mg dose of Prednisone.

Corticosteroids, like Prednisone, are synthetic versions of the hormone cortisol that the adrenals produce. I called Prednisone a "cheap imitation of cortisol." You have to have more of the cortisol that your adrenals produce or you need to stay on Prednisone.

It would have been physically impossible for me to stay on 3 mg of Prednisone for a long time. I commend your continued efforts. I didn't think of it as my personal failure. The fact was ... Prednisone suppressed my adrenal function so it was physically impossible for me to taper off Prednisone until my cortisol level improved.

Good luck with your continued efforts. I had an easier time tapering off Prednisone when I was on Actemra. This biologic didn't suppress my adrenal function and effectively controlled my inflammation. After I was able to stay on 3 mg for an extended period of time, my cortisol level improved and was "adequate" My endocrinologist said I could simply stop taking Prednisone ... no tapering was needed. I did a fast taper because my endocrinologist said I could discontinue prednisone when I was ready.

How long you need to stay on 3 mg varies from person to person. My rhematologist said he didn't care if I needed to stay on 3 mg for the rest of my life. At that dose, the side effects of Prednisone are considered to be minimal. I was ecstatic and so was my rheumatologist that I was able to discontinue Prednisone.

thank you for this reply.!!! it is encouraging. I will talk to my doctor about it.

Hydrocortisone is another "cheap imitation" of the hormone cortisol that the adrenals produce. The only advantage of hydrocortisone is it is "chemically more similar to cortisol." My endcrinlogist said it wouldn't really matter if I stayed on Prednisone or switched to hydrocortisone.

My doctor tells me that some people have to stay on a low dose of prednisone. There is a test to find out how much cortisol the body is producing.

Yes there is an a.m. cortisol level test that should be done in the morning. Because of the interaction with Prednisone, you need to be on a very low dose of Prednisone for the test to be accurate. If you are on a higher dose of Prednisone, the test isn't so accurate. My endocrinologist said my cortisol level wouldn't be very accurate until I was on 3 mg or less and only if I was able to hold my dose for 48 hours. Most people aren't able to do that very easily.
https://www.webmd.com/a-to-z-guides/cortisol-test
There is another test to see if you adrenals are able to produce large amounts of cortisol when a person is in stressful situations. This test is called a Synacthen Test. This test is more complicated than the a.m. cortisol level test. Most doctors won't even order this test until a person is ready to taper off Prednisone. My endocrinolgist said this synachten test wasn't necessary for me when my 8 a.m. cortisol level was low. Since I was on Prednisone for 12 years, my endocrinologist expected that I would have a low cortisol level.
https://patient.info/hormones/synacthen-test