How hard is it to get on Actemra (Tocilizumab) with PMR?

My doctor apparently has no problem writing a prescription for Actemra since I have "presumed GCA and am on 60 mg of prednisone". He had previously stated skepticism about my having GCA, since imaging has not shown it, so his willingness to write the prescription was unclear to me.

The means I can receive the $15,000 annual subsidy that Genentech offers for GCA victims using Actemra. (They ONLY offer it to those with diseases for which Actemra has been approved by FDA. GCA is FDA approved. PMR is NOT.).

Despite the fact that my Kaiser insurance pays $0 for Actemra injections, the Genentech $15,000 offset lowers my total costs to these values:

Weekly injections:
4 months of injections: $3546
6 months of injections: $12,864

Injections every 2 weeks:
4 months of injections: $5 copays
6 months of injections: $5 copays

I haven't been able to get any data out of Kaiser on IV infusions yet, but I hear they can be cheaper.

The trial published in NEJM shows that injections every week yield somewhat better results than every 2 weeks especially in terms of a quality of life measure that is somewhat vague to me, but presumably measures pain, stiffness, mobility. Here is the statement on this from NEJM trial:

"The mean increase (indicating clinical improvement) from baseline to week 52 in the SF-36 physical component summary score was 4.10 in the group that received tocilizumab weekly and 2.76 in the group that received tocilizumab every other week, whereas scores decreased (indicating a worse condition) in the two placebo groups…"

It is unclear to me what scale the SF-36 physical component summary is on (for example, is it 0-10 or 0-100 or what).

Hence, I'm not sure how meaningful an improvement from 2.76 to 4.1 actually is. It's not much improvement if the scale is 0-100, but it's a lot of improvement if the scale is 0-10.

Apparently Kaiser does not yet offer Kevzara to its members.

Imaging while you are taking prednisone won't show the inflammation because it is "hidden" by prednisone.

The cost of doing an infusion might be less because the IV insertion and monitoring while you get the infusion are all a hospital expense. Hospital expenses should be covered by your insurance.

There is a concept of "bundling" hospital expenses. In some cases , the medications you receive while in the hospital are bundled up with the hospital expenses.

It just depends on your insurance policy. Insurance companies have a stake in this. I worked for an insurance company as a medical case manager for a brief period of time. I didn't like the job very much because the claim was frequently denied because the insurance contract didn't cover something. It was usually the employer that wanted to decrease their costs and buy the least expensive insurance policy.

Most of the work of a medical case manager involved negotiating with health care providers for an "all inclusive" rate as compared to everything being itemized. Maybe a person who works for your insurance company can provide better information. They might be able to negotiate something that decreases your costs. Doing this can be tricky because if the service isn't something that is covered by your insurance policy talking to someone might bring it to someone's attention.

Insurance claims department automatically flag some things for manual review but not most things. Most claims are paid without manual review because it is cheaper for the insurance company to just pay the claim without scrutinizing it too much.

Thanks for these comments.

My insurer and medical provider are the same entity, Kaiser Permanente. Getting info out of them on costs has been difficult.

The earlier data I posted was based on what I could get from Kaiser's on-line tools. This is supposed to have cognizance of my specific coverage. It showed that Kaiser would pay $0 toward Actemra

My rheumatologist has done further research with the Kaiser pharmacists, and they say that this is untrue. They say Kaiser does provide some coverage.

According to them, Kaiser does make substantial payments, so that my cost BEFORE any subsidy from Genentech would be about $3900 for 6 months of weekly injections of Actemra.

Since Genentech corporate subsidy will cover up to $15,000/year, that leaves me no cost... it will nice if this is true.

You wrote "Imaging while you are taking prednisone won't show the inflammation because it is "hidden" by prednisone."

That's what I thought too, but my rheumatologist differed. He says the inflamed arteries of GCA are still visible for months after taking Prednisone...but again, the research papers I had seen said the visibility was reduced much more quickly, like in 3-10 days. My rheumatologist says that is true for PMR, but not GCA. Perhaps the GCA damage is more permanent?

I don't really "know" that prednisone hides the inflammation. but that is what gets repeated often. It becomes very difficult to separate fact from fiction.

Inflammation by its very nature is difficult to see at the cellular level. Imagining techniques improve as technology improves. Maybe it is possible to diagnosis these things while taking prednisone. When I was diagnosed, my rheumatologist wanted to see me when I wasn't taking prednisone.

I'm not very familiar with Kaiser Permanente. I have an idea of how they work. It is probably to your advantage that your insurer and healthcare provider are the same entity as long as you like their network of healthcare providers. These networks and alliances get complicated but can be advantageous.

I'm retired now but when I worked, my employer, health insurance and healthcare provider were all the same. The insurance company was a different entity but the hospital was "self insured" meaning that the insurance company only administered the medical claims for the hospital. The hospital paid the claims and heath insurance was provided "free" to all employees.

The insurance company might deny a medical claim but as an employee at the hospital I could talk to my employer to see if they would overrule the insurance company. My healthcare network was my employer who had an interest in keeping me healthy and happy. As long as the hospital provided my healthcare services, the hospital was very generous.

It sounds like you are making some progress. These reimbursement issues are one thing but when it is all said and done, I just hope Actemra works as well for you as it did for me. I don't want to get your hopes up too much.

Has inflammatory arthritis been ruled out? Don't forget that having two types of autoimmune problems is possible. That was my problem with inflammatory arthritis and PMR. There was also a problem with uveitis. Uveitis is associated with certain types of inflammatory arthritis but it is possible for it to be a standalone autoimmune problem. With your inflammatory markers being so high, my guess is you have more than one thing going on.

Uveitis was out of my rheumatologist's league. I once showed up to a rheumatology appointment with a red eye. My rheumatologist just looked at my eye and asked me if I knew how serious it could be. She called down to the ophthalmology department herself and wouldn't see me until I saw an ophthalmologist first.

Getting off prednisone will be a challenge the longer you take it. It isn't a benign medication. Prednisone is best used as a bridge to something else that works better and hopefully something else will have fewer side effects. Prednisone is not a good medication to take in high doses and for a long time.

Is "inflammatory arthritis" the same as "rheumatoid arthritis"? I'm pretty sure there were blood tests for rheumatoid arthritis that were negative.

The weird thing about my inflammation is that it went from zero to a very high level in less than a day. Whatever it is, it came all at once. It definitely has symptoms that span several disease categories, certainly GCA and PMR and probably others. The doctors have only focused on PMR and GCA so far since that seems to explain the majority of it. Overall, it's a mystery.

Tapering should be fairly quick once Actemra is started; I'm super aware of the importance of getting off Prednisone as soon as I can, so starting Actemra and tapering is very urgent to me. I've already been on 60 mg/day of prednisone since March 2.

It feels like my rheumatologist is doodling on this as more than a week has passed since we seriously discussed me getting on Actemra, and several days have passed since he definitely messaged he would write a prescriptions for it, and yet no prescription has appeared in my Kaiser pharmacy medication list, so it's not yet available to me.

And this is even as I have messaged him again this morning about it...

Reporting on this further:

I started Actemra injections today (April 1). The doctor prescribed a once/week therapy.

The actual Actemra cost to me BEFORE any corporate subsidy from Genentech = $435/month.

Since Genentech has a separate program that will pick up a total of $15,000/year, my ultimate total cost will be near $0.

(Genentech required $5 copays, so my total cost will be a little above $0).

My earlier posts in this thread were based on inaccurate information on my medical provider's website. This info was supposedly specifically tailored to my medical coverage, but it was not. Fortunately it turns out the actual costs to me are lower than I was led to believe by the website.

"Inflammatory arthritis" is an umbrella term that describes all of the many different types. Rheumatoid arthritis (RA) is probably the most common type of inflammatory arthritis and gets the most research. RA has many treatment options. Short term treatment of prednisone is used as a bridge to more effective types of treatment.

My understanding about the treatment of RA with long term prednisone is that it isn't done like PMR is treated. Historically, prednisone worked its "miracle" for RA patients but there were too many side effects and prednisone didn't prevent the damage caused by RA.
https://onlinelibrary.wiley.com/doi/full/10.1111/1756-185X.12823
Current treatment of RA is more "targeted" to specific inflammation pathways.

PMR is sometimes included under the umbrella of inflammatory arthritis although it is thought to be a type of vasculitis. Most of the things I read seem to dodge the question about calling PMR a vasculitis. PMR is described as being "associated" with GCA which is a vasculitis.

Good luck with Actemra and I hope it works for you. It will take some time for Actemra to work. My rheumatologist said it would take about 3 months for the effects to be felt. Perhaps it was the power of suggestion but I tapered by 1 mg per month for the first 3 months. After 3 months I tapered by 1 mg per week. This was starting from a 10 mg dose of prednisone.

This doesn't mean you will be able to taper off prednisone in 3 months. I needed to stop my taper at 3 mg for a period of 6 months because of adrenal insufficiency.

Starting prednisone for autoimmune problems is an easy thing to do. Everyone likes the fast pain relief. Unfortunately, the longer you take prednisone, the more adrenal suppression there is. It takes time for adrenal function to return and that is why people are told to taper off prednisone slowly in the first place.

Sometimes the symptoms of secondary adrenal insufficiency and a low cortisol level can mimic PMR symptoms. This becomes more and more apparent when you get to lower doses of prednisone.
https://thesolutioniv.com/blog/low-cortisol-levels-causes-effects/
Cortisol is the substance that "regulates" inflammation. I think when a person's cortisol level gets low, they may feel inflammatory "flares" which may or may not be PMR/GCA related.

If Actemra allows you to get to something less than 5 mg of prednisone, that will be low enough to give your adrenals the chance to begin the recovery process. Actemra doesn't have the adrenal suppression effects that prednisone does. In general, that is the purpose of all "steroid sparing" medications.

The doctor has given me a 6 month tapering schedule with the weekly injections of Actemra.

I am at 60 mg/day of Prednisone now, so the tapering starts fast at first, but is very slow once I reach 10 mg, where in theory, if there are no relapses, I will be in 2 months.

We'll see if that happens, I realize a 10 mg dosage 2 months from now, down form 60 mg now, sounds crazily fast.

I'm pretty sure my adrenal glands completely shut off after about 1 month of 20 mg/day of Prednisone dosage. This is based on the way my inflammation markers actually ROSE during the period, as the adrenals slowly shut down when they sensed adequate cortisol was in my system, due to the Prednisone I was ingesting. My total cortisol levels slowly dropped as they slowly shut down and my inflammation went up. The Prednisone then had to be increased to contain the inflammation.

The NEJM trials of Actemra against GCA- see attached graph - used a 6 month taper with an 80% success rate for those taking weekly injections of Actemra.
https://www.nejm.org/doi/full/10.1056/nejmoa1613849

Maybe I'll be one of the lucky ones, but I'm aware I may not be, and there are dangers to underdosing.

That is a very good observation about what happened to you when you were only taking 20 mg of perednisone per day. It takes a few weeks for your adrenals to shut down so the prednisone you ingest initially has an additive effect to the cortisol that your adrenals produce.

The additive effect doesn't last very long as your body tries to decrease the total amount of circulating cortisol. Your body can't really control how much prednisone you are ingesting. About all your body can do is shut down how much cortisol the adrenals produce.