Actemra IV?

[A77bruin]

Has anybody ever had an Actemra IV to help with their PMR?

[PMRpro Ambassador]

I think there are a few people in the USA on Actemra for PMR and some may be on the infusions - because their insurance will only cover them and not the injections. Actually, Actemra has not been approved anywhere for use in PMR but it is used.

[A77bruin in reply to PMRpro]

Thank you PMRpro. I am not defending my doctor by any means, but I trust in her very much. The methotrexate and prednisone don’t seem to be helping very much. The joints in my shoulders are tremendously painful. Due to what I believe is partially or mostly the fault of prednisone, I’ve had a double shoulder replacement. That prednisone has wrecked havoc in my body. At this point, I’m willing to try anything, and like I said, I completely trust in my doctor.

[PMRpro Ambassador in reply to A77bruin]

I'm on Actemra for "just" PMR. It is more the fact that the infusions weren't even trialled for GCA or now for PMR but the insurance companies - as we know - have their own views and rules ...

[A77bruin]

So you ARE on Actemra infusions? Tell me about it. Are you still on Prednisone and Methotrexate? I am awaiting approval from my insurance company.

[PMRpro Ambassador in reply to A77bruin]

Is that me you are asking? NO - I'm NOT on infusions, I'm on weekly injections, I am still on pred, tapering very slowly and not expected to get under 5mg since I have been on pred for well over 13 years. I only took methotrexate briefly about 5 years ago - side effects were too much.

[Blackcatlover]

I am in the USA and as PMRpro stated my insurance company initially would only pay for infusions. I started Actemra because being on prednisone and methotrexate I could never reduce my prednisone below 15mg without my Sed and CRP rising. I was on the infusions for 18 months and was able to reduce my prednisone from 15mg to 8mg during that time. I then switched to the Actpen injections and I’m now at 4mg of prednisone.

[A77bruin in reply to Blackcatlover]

Thank you so much for your input. I have not started infusions yet, but maybe eventually I can go to injections.

[Cmsstu]

I have both PMR and GCA. I have an infusion once a month. I was able to quickly come off the prednisone. I know have had 8 infusions and have no signs of PMR or GCA. I have great insurance in the US and my insurance pays the 500 a month copay.

[A77bruin in reply to Cmsstu]

That is awesome! I, too, have good insurance and I don’t see a problem with it being approved. I also live in the US, in California. Where do you live? Do you have any side effects from the infusions at all? Prednisone can be my best friend and yet my worst enemy. I 100% blame the Prednisone for my double shoulder replacement. It’s been an “interesting” journey.

[PMR2011 in reply to A77bruin]

if you have private insurance (vs Medicare) the Actemra company will support paying the deductibles. I am on the injections and pay $5 a month copay. Medicare will only pay fully for the infusions. I am off Pred completely and doing well. Every other week injections.

[A77bruin in reply to PMR2011]

My primary insurance is Medicare but I do have a good secondary. Are you having any side effects from the injections? Did you have side effects from Prednisone? I have been on Prednisone for a little over a year and a half and it is my best friend, but my worst enemy.

[PMR2011 in reply to A77bruin]

almost no side effects from Actemra. A slight headache and a little tired after injecting which has been managed by injecting at night before bed and staying hydrated. Pred, did have several side effects, most managed with diet change (low carb) and activity, and supplements. I do feel much better on Actemra. I was on Pred for 7 years.

[Cmsstu]

I live in upstate NY. When i was on prednisone I had just about every side effect there was. I have had no side effects from Actemra except a little tired the day after infusion. I hope to never see prednisone again. My rheumatologist says i will probably be taking the infusions for 2 years.

[A77bruin in reply to Cmsstu]

I would love to get off Prednisone. Hopefully I can start infusions soon!!

[calicojoy41]

Yes I get my infusions once a month. It is wonderful as it makes get down and rest for about an hour!!

[A77bruin in reply to calicojoy41]

That is such great news! I certainly hope that happens to me!

[calicojoy41]

I started in July 2022 on 12mg a day, I am now on 5mg a day and holding right now. I have got to have my left hip replaced due to a call. Fingers crossed that all goes well.

[A77bruin in reply to calicojoy41]

wow….good luck! I had a double shoulder replacement last year…….

[calicojoy41]

We are all falling apart. I live in a PULTE community FULL of seniors having to replace parts!!😃

[A77bruin in reply to calicojoy41]

😂