The impact of Prednisone on A1C

Did you need to submit any medical records or sign a consent to release your medical records to Genentech? I have never understood how this subsidy works.

I thought people on Medicare couldn't get the subsidy. However, Medicare will cover Actemra infusions given at a hospital so long as it is being used for GCA but not for PMR. With a Medicare supplement to cover the remaining 20% of the cost there shouldn't be that much of an out of pocket expense.

Is Actemra working for you? I like to hear how it works for other people. It validates my experience with it. Apparently some people don't get off prednisone completely but the majority of people can still significantly reduce the amount of prednisone they need. Given that so many people have difficulty when their prednisone dose gets less than 7 mg, I wonder how much of this is related to adrenal insufficiency.

I have been taking berberine since beginning prednisone, and I believe it has staved off a number of side effects, including elevated glucose. Berberine does what metformin does, but it does more, too. It comes from plants and is OTC.
https://pubmed.ncbi.nlm.nih.gov/29515798/

I did not submit any medical records, and I do not remember signing a release (but that does mean I did not; I may have forgotten.) All I recall is that when I called to get on the Genetech subsidy program, they asked me what disease it was for, and I said Giant Cell Arteritis. This is legitimate for me because my doctor has stated that I have PMR and "presumed" GCA. The Genetech people did not question me further. I don't think they care, but are forced to ask. It is part of their administrative duty and concerns about FDA oversight.

I'm on private insurance and not Medicare yet; I just turned 64. The subsidy only covers whatever is not covered by your current insurance. In my case, that is like $420/month for weekly shots. Kaiser covers the rest.

Actemra seems to be working so far, but I am still at 35 mg/day of Prednisone, down from 60 mg/day a month ago. We'll see how things go as the Prednisone taper continues. I'm supposed to be down to 10 mg/day in June.

My adrenal glands shut down when I was on a lower dose (20 mg/day) of Prednisone before. I hope they will recover as I taper now. The taper schedule the doctor gave me below 10 mg is very slow, like 1 mg every 2 weeks.

Based on a quick scan of the Genentech site describing their financial assistance program, it does seem to indicate that they are targeting those with commercial health insurance, so presumably not Medicare.

The website for getting the subsidy is RACopay.com, and it seems pretty clear it is for commercially insured people.

Not sure how it works for those with Medicare, but it sounds like you your costs covered. I have to go on Medicare when I retire, but my employer keeps finding ways to make things really easy to keep working, at least enough to keep private insurance...

Are you tapering by 5 mg per week? I don't believe there is any correct way to taper off that is "predetermined." You have to go with how you feel.

The best instructions I ever received was from my ophthalmologist whenever I had a flare of uveitis. He just said if the inflammation inside my eye got worse, increase my prednisone dose "a bit." As the inflammation improved, gradually decrease my dose. I could finely tune how much prednisone to take based on how much inflammation I saw.

For uveitis, I could actually see the inflammation inside my eye. My ophthalmologist could also see the inflammation by looking inside my eye. It was interesting for me to watch how the inflammation inside my eye responded to prednisone. The inflammation was there the entire time but it would wax and wane depending on my prednisone dose and when I took my dose. That is why I think prednisone "regulates" inflammation.

The inflammation would get worse overnight. I think that was because prednisone was wearing off by then if I took my entire dose in the morning. Splitting my dose solved that problem. I took 2/3 in the the morning and 1/3 in the evening and the inflammation continued to improve for all 24 hours.

It helps when you can see what you are doing. With PMR/GCA that isn't possible except maybe you can feel more pain. For PMR/GCA, you need to taper blindly and it just depends on how you feel. I don't know if PMR/GCA inflammation responds the same way that uveitis did.

When it is time for your adrenals to start picking up the slack things get tricky. A low cortisol level can cause pain too. When your prednisone dose isn't supplying an adequate level of circulation cortisol in your blood, you need to allow time for your adrenals to get up to speed.

When I first tapered off prednisone with the help of Actemra, my rheumatologist just said I probably wouldn't know for 3 months if Actemra was going to work or not. He was right because it was about 3 months when it seemed like Actemra was working.

From 60 mg, I would guess that decreasing by 5 mg per week would be okay.

I was only tapering by 1 mg per month from 10 mg of prednisone for the first 3 months after Actemra was started.. When I got to 7 mg after doing the Actemra injections for 3 months, I started to decrease by 1 mg per week. I had to constantly remind myself that Actemra was controlling the PMR pain instead of prednisone.

My rheumatologist told me to stop tapering with I reached 3 mg until an endocrinologist gave me some guidance. It was another 6 months or so before my adrenals got up to speed. My endocrinologist said it "might be safe" to stop prednisone going from 3 mg to zero in one step. I "tested the water first" before I "took the plunge" and went to zero.

It was a bit of a shock at first but I got used to being off prednisone. I had to go back to 60 mg of prednisone again when I had a new flare of uveitis. That was familiar territory for me. My ophthalmolgist were freaking out more than I was.

It was a another 4 or 5 months before I got back to zero prednisone again. My ophthalmologist insisted on stopping Actemra and wanted me on Humira instead . My ophthalmolgist said that Humira was a more optimal treatment for uveitis. My rheumatologist wanted me to give Humira time to work.

Humira probably helped the uveitis but PMR pain returned when I tapered back down to 15 mg of prednisone. When Actemra was restarted, I was off prednisone again 2 more months later.

Never overlook the possibility that there might be something else going on. It might not be just PMR/GCA. Good luck tapering off prednisone. I hope Actemra works for you.