I need help deciding:

[Hindags]

I was diagnosed with PMR last Dec. and am currently on 9.5 mgs (day 1). I live in the USA and am on a Medicare Advantage Plan through my former employer, Kaiser Permanente an HMO. I've been with Kaiser for almost 30 years and have had no real complaints. But if I'm going to maximize the possibility of getting Actemra once it is approved for PMR, I'll need to make a decision by mid November whether to change my healthcare plan.

I've had a pretty smooth, if a bit slower than average taper to date, but I'm aware that I'm heading into dangerous territory re flares and fatigue. I am very happy with my current rheumatologist, but we've had the Actemra conversation and she says that unless I run into flares and fail a trial on methotrexate, it's unlikely she would get approval to prescribe Actemra when it is FDA approved. Before its FDA approval there is no way she could defend prescribing it. She also reminded me that I have been diagnosed with diverticulosis and that perforated intestine is one of the more serious side effects of Actemra. I haven't had any diverticulitis for more than ten years, but I guess the potential for trouble is still there.

I understand that there are risks as well as rewards starting on another/newer medication and if things continue reasonabley well, I wouldn't choose to take Actemra. However, from what I've read here, it does seem to have been very helpful for those who have tried it....at least those for whom side effects didn't preclude continuing Actemra treatment.

I'd love to hear from those in the community who have been on Actemra.

*Has anyone who has only been diagnosed with PMR been given Actemra? Has anyone here with GCA and PMR been treated with Actemra?

* What was the reason you were started on Actemra?

*Were you able to avoid Prednisone altogether? Just take Actemra?

*How fast were you able to taper?

*How long were you on Actemra. Did you stop and have to re-start?

*Were there flares while you were taking Actemra? What is your theory about why you flared?

*When you stopped the Prednisone did you also stop the Actemra or did you continue with the Actemra alone? How does one know when to stop taking the Actemra?

* Did you have to stop Actemra due to side effects? If so, did you have to go back up on the Pred?

*What kind of side effects were most troublesome for you?

*If you are in the USA, how were you reimbursed by Medicare, by your supplemental insurance? Did you have to get preauthorized?

* What else would it be important for me to ask? LOL

I apologize in advance. Thanks for helping. I'm finding it very hard to think of leaving Kaiser even though my husband and I always predicted that it might be necessary just in this kind of situation. Kaiser is conservative. Also, my husband will also have to leave and move to a new provider if I do. He is not too happy about that though he'll support whatever I decide. I hate this kind of decision. The only way I can make it is to find out as much as I can. Just spent a half hour being shunted from one customer service person at a potential new Prescription Insurance Provider trying to find out if they even have Actemra in the formulary. Got no where. Will try again on Monday.

Have a great weekend!

[TooSore]

Hi, I can't really comment on actemra or your insurance but am wondering why you are considering it. Your taper is going well and you are less than a year in. Why start another medication with possible side effects/complications?

[Klah in reply to TooSore]

I am going to have a hard time answering your questions in proper order...sorry! I have had PMR For 3 years, 9 months...never really made a lot of progress tapering even 1/2m at a time quite a few flares from tapering too soon, not stopping the taper soon enuf, too much activity, stress.

I have only tried prednisone, until this past May when I had

my first Actemra infusion. I have had a total of 5 infusions. PMR pain was gone shortly after first infusion except for a couple of flares I have had..BUT since the Actemra I can recover from the flare in one day!! The rest I will answer in snippets because I cannot see all my typing on this iPad in order to answer your questionMedicare and Gerber have paid for the infusions.

Cost of infusions are about $35,000 a year.

I do not think you can switch back and forth from infusions to injectibles.

Hearsay: Actemra may be most effective if given early in the disease.

I get an infusion, wait two weeks and drop 1m.

I have dropped from 8m in June to 3m today!!!!

Amazing because I could not get below 8 or 7-1/2m on the DSNS method.

Rheumy worries about spine fracture, etc even tho my bone density is good (dexa scans).

Need to do your own research, everyone is different.

Recently had a breast issue. Puffy breasts, letdown reflex as if my milk was going to come in!! Ha!!

Stopped my HRT, which I have been on for years..problem solved..I saw my obgyn!

Do not know how long I will need to take Actemra..?

I feel that the inflammation is gone..!? We will see.

I am waiting for October 15 enrollment for AARP pharmacy to cover the injectibles so that I can travel. I think the needle in the belly is not a big deal..?

I think I will need 2 syringes a month.

It needs to be refrigerated..like diabetics do with their meds

Cost with AARP will be about $5000 a year (out of pocket)

I THINK injectibles are covered..but no going back and forth.

Infusions are simple..1 hour in doctor's office...IV.

I still have some fatigue, but nothing like before.

I feel fortunate to have something else to try, even tho I had minimal side effects from the prednisone, everyone is always screaming about the toxic prednisone...which it can sometimes be, for some people.

This is solely my experience & understanding.

There are more people on this forum who have tried or are taking Actemra.

I am otherwise healthy...take blood pressure Med & thyroid Med.

Weight has been fairly constant...except in the beginning of PMR..lost 18 pounds in two weeks!?!

ESR down from 87 to 5

C-reactive protein from 67 to 5.

Whew!...did I miss something😊

Please forgive typos, etc.

[Hindags in reply to Klah]

Thanks you do so much Klah for all these details. They are very helpful. From what you've said, you were put on Actemra with a diagnosis of PMR alone, no GCA. Is that right? And Medicare and your insurance covered it with the usual deductibles and co-pays. Are you also saying that AARP will start covering the injectibles? Will Medicare cover them too? I was told by a Rheumy I consulted with outside of Kaiser that Medicare is only covering the infusions. Has that changed?

I find your experience of flare with quick recovery fascinating. I do wonder how Actemra works for that to be happening. Curious.

Thanks again.

[Klah in reply to Hindags]

Yes, it is my understanding that Medicare, plus your supplemental insurance will cover all of the infusions...but no injectibles. I think my rheumy suspected some temporal arthritis (GCA) along the way. I was really sick in the beginning. I cannot explain the quick flare recovery except to say that the prednisone is just treating the symptoms, while the Actemra is attacking the excess iL6 (inflammation) and knocking it down when it flares..? You might ask your doctor about any advantage in trying Actemra early, rather than later..? Any other medication becomes a quandary when the prednisone works so well most of the time!

[Klah in reply to Klah]

Sorry...AARP said they will cover the injectibles for the $5000 deductible...that is based on two syringes a month. Cannot sign up before October 15. I Googled different pharmacy programs...what a nightmare to decipher!

[Hindags in reply to Klah]

My ESR was107 at the start and my CRP was over 6. And I had a fever and headaches..but no other symptoms of GCA. I refused the biopsy since I was told there were lots of false negatives anyway. I do suspect it will develop at some point however.

Otherwise, the Pred has really worked well for me and I'm really symptom free right now. I thinking taking the Rayos form of Pred was crucial for me because it kept the inflammation from building up every night. That has allowed me to start my days with a stretching and exercise routine that has made a big difference in my strength and flexibility. At my age I don't expect not to have any pain. As my FIL said when he was 70, "If I wake up in the morning and nothing hurts I'll know I must have died during the night". Lol

But I just don't think it will be a smooth ride going down. It generally isn't.

[Klah in reply to Hindags]

It is such a struggle at certain points. Yes, it is a long haul. I have found stress to be a big factor, and unavoidable. I have stayed active throughout...yoga, tennis, golf, and can really measure my progress by that. For the last couple of years I was on a "day on" "day off" regimen for everything. Now I can do something every day! Prednisone does need to be your friend. I filled the prescriptions for Methotrexate twice, but just couldn't take it..? So, here I am on the Actemra!

My rheumy told me

Not to Google this stuff (but I did😝).

[MaryA_]

My thought would be to stay on the prednisone n not try the ActActema. Just keep tapering slowly

[Hindags in reply to MaryA_]

Thanks Maryanne, As I said to Toosore, above, not planning on trying Actemra at this time. But I do worry that unless I take advantage of open enrollment season to change insurance, in November, I'll be locked into a system that won't give me the Actemra option if it turn out that thing get difficult as I continue to taper.

[MaryA_ in reply to Hindags]

Yes, I hear you. I live in the States also and have the same issues. It's a big decision. I had to make it last year and ended up with PMR IN January and a new insurance company. So far all is well , but I'm on the prednisone only for this. I had breast ca for the second time and old insurance company refused to pay for one of the meds my oncologist wanted me on, I made the decision not to take it and 5 years later I'm ok ( except for this darn PMR/ GCA) Sometimes if you can get in a trial for a new med , it free. Do what your belly tells you , you can always change it next year. My best to you. 🌻

[Klah in reply to MaryA_]

You do have to think ahead when it comes to insurance options. I lost my pharmacy insurance last Spring because my credit card for the automatic withdrawal expired!...I was gone for the winter and thus did not receive the notice of cancellation! So, when I returned in May My rheumy wanted me to start Actemra so I had no choice but to do the infusions which are covered under my regular Medicare...the injectibles are from the pharmacy. I am waiting for October 15 to enroll in the pharmacy program which will kick in on January 1st...only then can I get the injectables. You are wise to look at all the options for insurance and supplemental pharmacy coverage, analyze the cost. I really empathize with the folks that don't have the coverage and therefore cannot get the medicine!!

[Hindags in reply to Klah]

Thanks again Klah. I do feel a bit in sensitive bringing this topic up on this forum. Many don't have any options. To date, my access to specialists and the level of responsiveness I've received at Kaiser has been excellent. My Rheumy didn't hesitate to prescribe the Rayos Pred. And that is very expensive per month. I pay $5 per Rx of 120 pills. Amazing! I have lots of gratitude and feel disloyal..

I know myself well enough to know that even if I find all reason point to making a switch, it will be somewhat gut wrenching for me.

[Ronswife]

You can't plan on what ifs. Your insurance Kaiser is the best and I would not give it up. Doctors love trying out new meds. Keep it simple so your own body can sort it out.

[Hindags]

Thanks for the reply. I'm afraid I do a lot of planning around what ifs. Wish I were more laid back, but personal history has conditioned me towards this strategy.

How are you familiar with Kaiser?