Actemra taper

[Blackcatlover]

I know that this is a little premature as I still have a long way to go tapering my Prednisone, but does anyone have info on tapering Actemra.

[PMRpro Ambassador]

There were tapering schedules used in the trials - one was over 6 months I think. It does take time to work so it makes sense to wait for a while and then it is much the same as with any tapering - but you can do 5 or 10mg steps down as you can tolerate them, you could still suffer steroid withdrawal rheumatism (as it is called) if you reduce in big steps that your body objects to and once you get to about 7mg it will be adrenal function that remains a limiting factor.

But it doesn't work as well in about half of patients - they get to a much lower dose but not entirely off pred. So if you were to have such problems, don't let your doctor bully you and try to persuade you it can't be happening. It can.

[Blackcatlover in reply to PMRpro]

Thanks so much. In just the short time on this site, I have so much confidence in your knowledge and advice. So glad to find you as a source.

[Blackcatlover]

Thanks so much for your thoughtful reply. I am on 4.5mg of Prednisone and 4mg per kilogram weight of Actemra administered monthly by IV. I am slowly tapering my Prednisone but I’m unsure how to taper the Actemra. The addition of an endocrinologist is a great idea. I have so much to learn.

[PMRpro Ambassador in reply to Blackcatlover]

The Actemra isn't your responsibility - that is up to the specialist using it.

[Chrisellie]

I have been on Actemra /Tocilizumab injections for almost 12 months

Assuming everything is well I will stop the injections and Tocilizumab altogether with no taper. Unsure how different countries deal with this.

I have PMR GCA LVV

My steroid reduction was roughly 6 plus months from 40 mg to 0 mg.

Keeping fingers crossed.

My profile shows Prednisolone reduction.

[Chrisellie]

Yes weekly injections. Only allowed 12 months in Scotland unless a relapse. How long were you on injections before the interruption ?

[Chrisellie]

Are you still on Prednisolone and at what dose? Any other drugs or illness involved?

[Chrisellie]

Good luck this time round.

[PMRpro Ambassador]

I think they had 2 groups in the study - every 2 weeks and every week.

[enan-illuc]

Blackcatlover,

I have GCA and PMR and I am on Actemra/Tocilizumab. I have been on the Actemra for over two years and the Rheumy has me on 2mg of Prednisone, and probably will be on the Prednisone for a long time. I have had two Rheumys tell me it is a small dose and "not to worry". I personally am not in a big rush to get off either the Actemra or the Prednisone because GCA lasts a long time. I hope this helps.

[Blackcatlover in reply to enan-illuc]

It does help, thank you. I am on 5mg of Prednisone and tapering very slowly. I have an IV infusion of Actemra every Twenty eight days. I am learning to be content with this whole process. Thank you.

[Grammy80]

I am still on methylpred and Actemra doing injections weekly. I'm like you in so much as I'm still working on the pred taper and just injecting weekly. I don't feel like I know what drug is doing what. All I know is I feel better than I did...

But...I can relay...a friend of mine here in Maine had been on weekly Actemra shots for over a year for PMR and GCA, no prednisone because she had a bad reaction to it. I believe it was about four months ago her rheumy cut her to an injection every other week and last week she started a regimen of an injection every third week. I believe she has a check-up scheduled for May. She told me that 'so far, so good' that she has had no adverse reaction.

😻😻

[Blackcatlover in reply to Grammy80]

Thank you so much. Glad you are doing well. With IV treatments monthly, I’m not yet sure how I will taper. Will see my rheumatologist in March.

[PMRpro Ambassador in reply to Blackcatlover]

Out of interest - why the infusions rather than the injections?

[Blackcatlover in reply to PMRpro]

Medicare and my supplemental health care pays more of the very high cost of this medicine because it’s administered in a hospital setting. As it is,my copay runs about seventy dollars a month.

[PMRpro Ambassador in reply to Blackcatlover]

Ah, right. So not because your doc thinks it is better? Seems more convenient to me - but it seems strange they'' happily pay the clinic-associated costs which don't exist for the injections!!

[Grammy80 in reply to Blackcatlover]

Sometimes I think the 'system' spends more money trying to save money in the states. Under some insurances an individual is required to have multiple tests before getting to the more expensive one that will actually give and answer. I have private insurance but was pleasantly surprised when my cost for a month's worth of injections was only $8.50. My insurance carrier changes about every two months...so I'll be grateful for what I get now.

[Blackcatlover]

The seventy dollars covers the medication and the hospital. Medicare and Blue Cross\ Blue Shield share the cost. The Actemra 4mg plus the hospital charges equal$2150. I pay $70. Medicare paid $1700 and Blue Cross pays about $400.

[Blackcatlover]

If I do my infusion every twenty eight days, my numbers are good and I’m PMR pain free. I tried going six weeks between IVs but my rheumatologist also had me lowering my Prednisone pretty quickly so I had a flare. When I flare I have to go right back to 15mg of Prednisone to recover. Right now I’m slowly lowering my Prednisone from 5mg to 4.5 with theDSNS ( never get the initials right) method. I seem to be doing well.

[Blackcatlover]

I was questionable for GCA. Had a biopsy which was inconclusive. My rheumatologist submitted my request for Actemra as both GCA and PMR. Turns out I have occipital neuralgia. I was approved even though it turns out I don’t have GCA.

[Hidden]

I have been on Actemra Infusion for 1 year,on 2mg Steroid.Was bit up and down at first then ok but last 2 Infusions have had pain again got Rheumy next Month so will have chat with him then.Good Luck.xx