How about Actemra for GCA if you have no negative side effects from Prednisone?

If Actermra had had clinical trials with PMR patients, then I would better understand why people with PMR are being offered it.

The jury is still out, amongst medics and researchers as to whether PMR is just a 'sister' to GCA or part of a whole.

As I understand it, GCA is definitely in the Vasculitis family (the biggest member).  PMR is not even mentioned in that family at present.

However, I am not and never had had any medical training, I am no Einstein, just an ordinary plod along human, who is often bewildered who had GCA for 5 years, who only used Pred and has now been in remission nearly at the end of 6th year.

 

Kathy

I hit the wrong button, I meant to add.   The decision to make is yours and yours alone, as always.  Whatever you decide to do, I wish you well.

It is increasingly being admitted that it is likely that PMR and GCA are the same disease - just at different ends of the spectrum. It is suspected that a lot of patients with "just" PMR symptoms would show up as having large vessel vasculitis if they were given PET-CT scans. And a lot of GCA patients have PMR symptoms either before diagnosis or at some stage as the pred dose is reduced.

There have been a couple of prospective trials of Actemra in PMR in the USA and one lady suspects one may be being set up in Spain.The drug company will be keen to get it recognised for PMR as there are at least 2 similar drugs being tested in GCA and in a few years it will lose its patent for RA so biosimilars can be created. PMR is a BIG field worldwide, even if it is only used for patients who can't take pred and refractory PMR. At the moment they can keep the cash registers chinging in the USA - even if socialised medicine won't play the game.

Ta Eileen, just wish all the medics would say it outright, instead of pussyfooting around.

It is just what was forecast in the Press Release that went out in August 2008,  baby boomers coming on the line, particularly in the States and PMR becomes bigger and more recognised ................and perhaps cash cow for you know who.............

 

I think my rheumatologist wants to try actemra since this is my second flare up. My first was when I hit 25mg and my second at 17.5mg a year after the diagnosis of GCA in September 2016. Now I am temporarily back at 50 mg. Improving but still a little pain in hands and feet in the morning. I dont know how much actemra will cost me now. I will be in medicare in December this year and if I pick the right additional packages I might not have to pay for it, but for now I will likely just start lowering with the dsns method again. And then slow down when I hit 20mg.

If you were dx'd with GCA and then reduced to 17.5mg in a year then no wonder you developed a flare. I am convinced - as I have just written on another forum - thatif , instead of being terrified of pred,  they reduced more slowly with small steps down to avoid flares their patients would have fewer flares and fewer problems on the way down. And in the end would have taken less pred overall.

My Actemra infusions are totally covered by Medicare & my supplement...however, the injectibles are not....they will cost me approximately $5000 a year. I will need the injectibles to travel for long periods of time. Be sure to ask specifically about infusions vs injectibles and about the dosage on the injectibles.

Good suggestion! Thank you Kathy. I am not sure if I will qualify for no deductible, without paying just as much yearly per month as the maximum deductible would be. But what is the difference between infusions and injections?

My infusions have been paid for by Medicare & my supplemental insurance. I will pick up AARP pharmacy insurance on the enrollment day, October 15. The injectibles will cost me about $5000 a year, out of pocket...I THINK! Someone on the forum said the injectibles worked better...? I have not had a problem with the infusions. I have had several flares..too much activity...but recover in one day on Actemra. Also had a recent "conflict" with my hrt medication; I have stopped the hrt Med and the breast issue went away...?

My Actemra ,self given shots , cost me $100 a month.  It helped my PMR symptoms but gave me side effects of extremely itchy hands and feet, and coincidentally I developed sclerotic tendons I. My palms  and fingers.  I went off. 

If I'd gotten Dr. office administered infusions, it probably would have been zero co-pay.