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!