Change Health Care to get Actemra?

[Hindags]

I have been a patient at Kaiser for 28 years. I have had no complaints to speak of. Easy access to treatment. Easy communication with my doctors. Not necessarily state of the art,I but evidence based approached to treatment. I have had botox for neck problems that have been wonderful. I get reimbursed for seeing an osteopath monthly outside of Kaiser because Medicare said it should be a covered benefit.

Now I think I might have to switch plans in order to have access to Actemra.Just don't know how to evaluate how important Actemra is for me.

I was diagnosed with PMR about a year ago, started on 15, up to 20 after three weeks, and down to 8.5 now with one flare @14mg.(markers both up, not many other symptoms) that responded to a return to higher dosage for a short while.

I take Rayos delayed release Pred at night.

I have a good relationship with my Rheumy but Kaiser is conservative. She also describes herself as conservative. Should I run into trouble as I taper lower, I'll have to try methotrexate for a few months before she'll try Actemra. She reminded me that I have a history of diverticulitis, which could be a problem with Actemra. I haven't had a problem in more than a decade. Almost all people my age have diverticulosis.

What would those of you who have had Actemra do? Would others of you change Health plans to get access to it without having to go through methotrexate and marking time?

[SheffieldJane]

This is a question pertinent to people from the USA. You get what you're given in the UK.

Do you have to make the decision just yet ? You might have a very smooth ride as you taper the Prednisalone.

[HeronNS]

SJ said what I was thinking. A year into the journey isn't that long and you appear to have reduced fairly successfully. You are nearly down to the physiologic level anyway. My instinct would be to carry on with one of the very slow taper methods described on these forums provided you do not have problems with pred itself which make it more important to get off it faster by introducing another medication, and changing health insurance which till now has served you well enough.

[Hindags in reply to HeronNS]

HeronNS well you and SJ are making me feel a bit better about what is likely to be the maintenance of the status quo since I just broke down last evening after feeling the rug pulled out from under me.

[GOOD_GRIEF]

As a Yank myself, I'm holding off on making any changes.

You don't say which US state you're in, but the changes pending in health insurance markets/Medicare/Medicaid may have effects as yet unknown on existing coverage, and choices you make now might very well present problems if they get to repeal pre-exiting conditions and other provisions like premium subsidies. Whether you are on an employer plan, an individual plan or a government plan, everything may change, and surely the premiums are not going down.

I myself am standing pat waiting to see how this all pans out before I make decisions on changes. Once the legislation is in place, I'll have enough information to make the best choices. Right now it's all just too uncertain, I feel well enough on my current treatment plan, and am making progress. I'd rather only ride one rocking boat at a time.

[PMRpro Ambassador]

If I were well and on 8.5mg of pred after a year nothing would persuade me to be a guinea pig for Actemra in PMR - because that is what it amounts to. There are no proper studies yet done on Actemra in PMR and it has not been submitted for approval for it. That means it is being used off-label and if anything goes wrong there is probably no come-back. I imagine that those who are on it have doctors who are fudging it as inflammatory arthritis that has not responded to methotrexate. In the UK, mtx is only the first of several DMARDs you would have to work your way through to get to a biologic.

8.5mg pred is about the same amount of corticosteroid your body makes anyway, it is a low, what is called a physiological dose. It is doing little harm as a recent study from the Mayo points out:

practicalpainmanagement.com...

Biologics are NOT innocent drugs - just because it suggests "biological" doesn't mean they are safer. They are very effective but their potential side effects can be devastating, making pred look very friendly. Any drug should be used under a weighing of the pros and cons. In GCA the situation is very different and justifying the use of tocilizumab is more reasonable. The pred doses are higher, there is the risk of blindness - but even so, outwith the USA I suspect even in GCA it won't be the first line drug for some time. Pred will be used first.

So far they have done no studies to show whether the remission effect is long lasting. You might have to take it for a long time - and that increases the risk of side effects.

And Good Grief points out the other side - who knows how your insurance might react in the future. Any insurance will pay for pred, it is a cheap as chips, even in the USA. TCZ is something like $40K with all the bells and whistles in the USA.

[enan-illuc in reply to PMRpro]

Hi Hindags,

I take Actemra injections and I fully agree with PMRpro. Actemra is for GCA as per the FDA. Prednisone is the first choice and Actemra is added as an addition to Prednisone for treatment according to my Rheumatologist, who I think is very good. I think the Actemra helps but the prednisone does the 'heavy lifting'. I do know that my insurance only covers Actemra/Tocilizumab for Giant Cell but I hope it is expanded to include PMR because it is effective. I hope this helps.

Enan

[Klah]

I do not know how Medicare relates to Kaiser...or if you are even on Medicare...? I have Medicare, a supplemental insurance plan, and I have signed up for a more extensive pharmacy plan in order to have Actemra injectables covered. The Actemra infusions have been covered, or shared, by Medicare and my supplemental insurance. Wanting to take the Actemra is what motivated me to get the “better” pharmacy insurance...but it was also seeing friends and relatives require certain drugs for serious, often fatal disease....and their ability to get it! No way to predict what medication or treatment we may need in the future, but worth weighing the cost/benefit of insurance. Hope this makes sense!

[Hindags in reply to Klah]

Entirely understand and agree. I have an employer sponsored plan right now that costs me nothing except for $5.00 for meds, even brand meds. It is an amazing deal, but it means staying within their network.

It also covers part of the cost of custodial care when that becomes necessary.

I'd been thinking of moving from that plan to a more expensive one which would allow me more flexibility in choosing doctors. I had such difficulty getting information about that plan and about that formulary, that I gave up and decided to stay with the plan I'm on. I did get reassurance from my rheumatologist that when Actemra is FDA approved for PMR or if I run into difficulty tapering, she'll will put me on Actemra. My compromise will be having to try Methotrexate for a bit before the Actemra.

I think if I were just getting PMR this year I would have leapt to the other plan so I could start Actemra early early in the disease process. There are MDs, as I've read on these boards, that are prescribing it for PMR, off label until it is FDA approved. At 8.5mgs some 11 months into treatment, I don't think Actemra provides the same Pred. sparing effect. Even if Actemra can help me avoid flares at lower Pred levels, I'll still need the Pred until my adrenals spring back to life. At least that's my latest thought about how things work. I could be quite wrong.

Please set me straight on this if I am wrong. I'm just trying to make sense of what I've read here of people's experiences with Actemra to date.

Hope I made a good decision. I found it very anxiety provoking to tell the truth.

THANK YOU ALL who have replied to me on this issue. You are an amazing, wise and caring group. How different and isolated this whole crazy PMR experience would be without you. I don't even want to think about it.

[bunnymom in reply to Klah]

I am in the U. S. also

That's good information to know.

[Sandy1947 in reply to Klah]

What supplemental plan do you have? I have Medicare and AARP. I am having difficulty getting below 16 (started at 25 in June). Dr. Is rushing me because I have severe osteoporosis and she says Pred weakens muscles. She also said Actemra is only covered for GCA. I worry about additional side effects from new drugs. PMR is a real pain!

[Klah in reply to Sandy1947]

Gerber is my supplemental insurance with Medicare. They,picked up the cost of the Actemra infusions. I need AARP to get the injectables. If you already have oesteoporosis than I would be more anxious to get off of the,prednisone too. But, to a certain degree, pick your poison....I don’t know which drug would effect your bones in a worse way. I do know that Actemra has thus far,proved remarkable in allowing me to reduce the prednisone so quickly...8m to 4m in 6 months when I had not been able to get Below 8m in almost 4 years!

[Sandy1947 in reply to Klah]

I have Medicare and AARP. I actually fell yesterday walking my dog. Thankfully, I was wearing a down jacket and the padding helped soften the blow. My ribs are sore when I breathe deeply and woke me several times during the night, I had a lovely date with a judge last night so I didn’t totally focus on my injury, osteoporosis, and prednisone!

My Dr. will not lie and prescribe Actemra. I’ll be on 15 for 12more days before next reduction.

[Klah in reply to Sandy1947]

So sorry you fell! Hope you can rest up and recover over the next few days. I believe the diagnosis determines what your rheumy might or might not prescribe. My doctor did not lie. Over the last four years my rheumy has suspected that I have temporal arthritis also, but not confirmed by biopsy. I think RA might also be within the realm since it is in my family.

Assessing the patient and considering all possibilities is not a given for all doctors...so much can be missed. The DSNS taper worked well for me, up to a point...I hope it works for you too😊Merry Christmas🎄

[Sandy1947 in reply to Klah]

Thanks. Happy Holidays to you and your family!

[Sandy1947 in reply to Klah]

This post was for Klah...sorry to repeat it

What supplemental plan do you have? I have Medicare and AARP. I am having difficulty getting below 16 (started at 25 in June). Dr. Is rushing me because I have severe osteoporosis and she says Pred weakens muscles. She also said Actemra is only covered for GCA. I worry about additional side effects from new drugs. PMR is a real pain!

[panda12]

I agree with the others and as in the UK it is a little different. I was on prednisone for about 10 years before rheumatologist tried methotrexate in order to help me reduce the pred. This worked and I am no longer on Prednisolone, I have not had any real problems with methotrexate and much better as the long term use of steroids is not ideal with lots of side effects.

[PMRpro Ambassador in reply to panda12]

" the long term use of steroids is not ideal with lots of side effects."

Not as many as you might think according to a top PMR expert at the Mayo:

practicalpainmanagement.com...

[panda12 in reply to PMRpro]

I managed to have cataracts in both eyes, now had the operations, developed type 2 diabetes, and weight gain whilst on Prednisolone

[PMRpro Ambassador in reply to panda12]

The likelihood of both pred-induced diabetes and weight gain can be reduced by drastically cutting carbs, especially sugar and highly processed white ones.

[Klah in reply to PMRpro]

I empathize! It is a bummer when the side effects effect you...whether they are listed or not. I have even had a couple of small side effects from the PMR & prednisone that are not listed! Glad the methotrexate worked for you😊

[PMRpro Ambassador in reply to Klah]

What are your extras? The NE charity has always said it "discovered" a couple of extra to those listed!

[Klah in reply to PMRpro]

Do you mean what were the unlisted side effects?

[PMRpro Ambassador in reply to Klah]

Yes - the more the merrier...

[Klah in reply to PMRpro]

About two years ago I had a severe rash only on my back...from my shoulders to my waist. Nothing helped. I was up at night taking ice cold showers for the pain. Had it almost a month!

[PMRpro Ambassador in reply to Klah]

Rash is mentioned in the documentation - but it isn't as bad as that normally! Ouch - you have my sympathy! Been there, done that, but with an ACE inhibitor, not pred.