Acterma question

[Leilagirl]

It’s been 2.5 years now since PMR diagnosis. Blood tests also showed positive for RA . Have tapered down on prednisone to 2 mg successfully .. and have been on 2 mg for 6 months until last week. Had to increase to 3 mg and probably need 4 really. . I have Much increased shoulder, neck pain with headaches that won’t budge. Rheumatologist recommends Acterma. I live in US. I’ve been trying to educate myself, ie.. side effects. I’m nervous about it. He says it is not FDA approved for PMR but he is very hopeful it will be soon. When reading about this drug it has very serious side potential side effects and is very expensive as well. He stated that you take it with prednisone . I think attempting to taper along with it eventually. Any info would be very helpful. I am now thinking that PMR will be with me forever.. I’m not depressed, just realistic... Thank you!

[DorsetLady PMRGCAuk volunteer]

Can't help on the Actemra front - but others will.

As for PMR - 2.5years is not that long - 4-5 years is quite normal - and highly unlikely you will have it forever - possible, but not a given.

And if you need 4mg (or even more) you need 4mg - why suffer unnecessarily with too low a dose? Is the Rheumy pushing you to taper or is it your decision? Whatever you need more!

[Leilagirl in reply to DorsetLady]

Yes he is always pushing .. even on this low dose of 2 mg. and in my humble opinion why add these other potent meds while being on a low dose and doing fairly well. I do ok except the past week or so. I think I will increase prednisone just a bit to knock out inflammation now. I’ve done this before. Nutrition and other health factors I’m doing fairly well . Thank everyone in advance for assisting.

[Grammy80 in reply to Leilagirl]

I gave you my Actemra story before I read all the responses....the ladies gave you some great info from years of experience. If I were in your shoes....I would go with what you decided after digesting all the info~!! The best~~

[Rugger]

I have had PMR for 4 years, but last year I developed GCA-LVV. My rheumatologist started me on Actemra 20 weeks ago and I seem to be doing very well, with no apparent side-effects yet. 🤞 I have re-gained energy and am tapering the pred successfully so far, at 1mg / month.

I don't think I would have wanted to consider it for PMR alone - but it's not approved for that in the UK. However, with my aorta and its branches involved in the vasculitis, I agreed to the drug.

Perhaps your rheumatologist is thinking of the RA diagnosis? It is indicated for that.

Best wishes for whatever you decide.

[Leilagirl in reply to Rugger]

Thank you

[PMRpro Ambassador]

To be at 3-4mg after two and half years is pretty good and I would not be talked into Actemra if I was doing well at that pred dose - above all in the current Covid climate. All biologics add to your vulnerability to the virus.

A month ago Professor Dasgupta, a world name in the PMR/GCA field, said in a webinar he keeps patients at 2-3mg/day for a long time as it appears to reduce the risk of relapses.

The link to the recording is here:

healthunlocked.com/pmrgcauk...

Another world name in the field at the Mayo in Rochester did this study:

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

(different emphases in the articles, same study with the link to the original at the bottom)

PMR requires pred for management for up to just under 6 years for half of patients. It is not a short-lived condition as many doctors would have you believe and only about 1 in 3 patients is able to get off pred in 2 years. But it does go away for most - even without the heavy duty stuff like a biologic drug.

[Leilagirl in reply to PMRpro]

Yes I absolutely agree. Thank you!

[Grammy80]

I have GCA and have been on methylprednisolone and Actemra for several months now, I also live in the states. Last August I was on 100 mg of prednisone a day and nothing could calm my GCA down. In early September 2019 I was switched to prednisolone and biweekly injections of Actemra. In my case it was a last ditch to save my right eye.

I was not a good candidate for Actemra because I have diverticulitis and have had stomach bleeds. I've had NO problems with the injections which I now take once a week and presently take 12 mg of prednisolone. Indeed, it was a big decision but I'm glad I agreed to take the risk.

Because of the Actemra I was able to drop to 62 mg, I believe it was, of prednisolone and in December of 2019 began tapering while continuing the injections. I can't seem to get below 8mg per day without a flare. The doc wants me to continue...I'm 80, almost, and wouldn't mind taking 8mg forever. I know...this is GCA, not PMR, but I've had no ill effects.

A friend of mine has PMR and had GCA. She was diagnosed promptly and used to take weekly injections and now injects every other week. Her body could not tolerate prednisone and she never took prednisolone. She has had no side effects from it.

I am shipped a cooler each month with the four epi-pens and my only co-pay is $8.95 per month. My insurance is Aetna Medicare Advantage and I am not sure what my deductible is but because of other conditions...it doesn't take long to satisfy that amount. I know the payment may be another story for you since it is not approved for PMR--yet.

I just noticed you'd heard from some of the 'heavy hitters.'

My absolute best wishes to you!! xo

[Leilagirl in reply to Grammy80]

Thank you. I am so pleased this medication has and is working for you. I wish you the very best and continued healing. I also appreciate your sharing the details and timeline.

Take good care!