As many of you know the GiACTA (Tocilizumab) clinical trials were finalized in 2016 and the drug was approved in May of 2017 for Giant Cell Arteritis only. After much research, I have decided to start treatment with Actermra this month. Like most insurances now in the U S, payment for this treatment was denied. With the physician's office, we are appealing the claim. Either way, I don't expect much financial reimbursement from the insurance and it is extremely costly. It is estimated over 10,000 dollars a year.
Fortunately, good news! I received approval today from the drug manufacturer in what they refer to as the "coverage and patient assistance program." Also known as Genenentech Access to Care Foundation. What this means is I will pay a 5.00 copay for each treatment. The insurance is than billed as the primary, and than the assistance program will be billed as the secondary and will cover my remaining balance up to 10,000 Dollars. I receive a card with the 10k balance which will be decremented with each treatment.
I not sure how long this offer will be open or how it works with the physician. I am going through Stanford so they provided me with the package to apply.
The results from the clinical trials seem better than what is currently available in regards to GCA treatments, so I am hopeful. Here is the phone number to call if you want more info. 1 855 722 6729.
Good luck and I will keep you posted on how it goes.
TJ
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Tj2017
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Nothing "reverses" the cause of the GCA - pred relieves the inflammation until the autoimmune disorder burns out and goes into remission, that is all. It requires high doses in GCA which are accompanied by severe side effects for many people. Even Actemra is not a cure - but it seems to induce remission much more quickly, reducing the amount of steroids required dramatically.
PMRpro do you know if this drug is available in the U.K.? I have suffered with GCA since March 16 and currently on 7mg of pred having had one major flare between then and now. Have been offered methotrexate as a "steroid sparer" but have declined due to lack of evidence of effectiveness and possible side effects. I thought if anyone knows you will! ( although I expect the answer is it is too expensive!)
How did you guess! It is available for patients with Takayashu's arteritis - which to all intents and purposes is identical to GCA but is found in younger patients - but not for GCA. There was an NHS consultation last summer, done before the final results of the GiACTA study were published, which seemed utterly stupid to me because of course there wasn't any substantial evidence as to its superiority. As a result of that it was stated that if compelling evidence of its effect were to emerge the directive would be reconsidered. So we are hoping.
Some rheumies appear to be managing to find funding for it somehow for a very few patients. I know in other countries patients have been reclassified as RA, where it is already approved.
However - don't imagine that toclizumab is free from side effects. It is a monoclonal antibody and they potentially have some very unpleasant side effects. If you have only been on pred for 15 months and have got down to 7mg successfully I think you can be very pleased with that to be honest. As you so rightly say, there is little good evidence that mtx works as a steroid sparer, especially in GCA, although it was said in the video which was posted recently that IF if it is started immediately, within the first month, then the patients have fewer relapses. This was not found by starting it later - there is a very small window of opportunity for successful use.
I know many people with GCA who would say much the same as I have just written - to be at a physiological dose of pred in such a short time is a very good result.
Thanks for your prompt reply and advice PMR pro. I guess I am worried thatI will have another flare as I am getting down to that level again. My brother has had RA for many years and been on various drug trials which includes some of these types of drugs and they have kept him relatively pain free with few side effects and very little permanent joint damage. I am happy to just have GCA though and must be more patient!
Then do NOT push your luck with your reduction. You are NEVER reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms well. It is not unusual to have flares in GCA in the first 18 months after diagnosis. Certainly, there is study evidence of remaining inflammation in various large vessel vasculitides including GCA after 6 months on high dose pred even though there was no sign of symptoms otherwise.
You are at a very low dose - hang around where you are for a while. It will be a positive step in all respects, giving your adrenal glands a chance to catch up too.
I am currently on 60 mg of prednisone for GCA and PMR. I have been for two months. The docs, GP, Rhuemy and Ophthalmologist all told me to expect to be on prednisone for 2 to 5 years, depending on if/and/or when these diseases go into remission. And than I should expect relapses. Hopefully this drug will minimize the overall amount of prednisone I will have to take for the remainder of my life. This new drug will be taken with a prednisone taper. And, even with this new drug the relapse rate is still high.
I know several people who have had GCA who took about 4 or 5 years to get off pred - but they have been fully off pred and had no relapses at all. I know a few who had PMR - and had it a second time. But no-one with GCA.
Depends on which arteries are affected. What it really means is that if you reduce the pred dose too far there is the potential for the inflammation to take off again. It is really a warning not to be in too much of a hurry to reduce to low doses.
My Mom has been on Actemra infusions for about 4 or 5 months now. She goes every four weeks and it takes about an hour between check in and when we leave. Although it is not a cure, and it is ridiculously expensive here in the US, her Rheumatologist was able to get insurance approval for my Moms GCA. I will say that fortunately she has not experienced any side effects from the Actemra and she does have a few days of a bit more energy right after the infusion. The infusions are giving about a week before each taper and I believe they do have something to do with the fact that she has been able to taper down to 12.5 mg a day without much problem.. Prior to the Actemra infusions she would taper to 40 mg and then need to go right back up again (started on 60 mg a day back in September) This medication may not be for everyone but for anyone who does need it, we are fortunate to have it available.
Thanks joyismami for your post. That is good news that your mom is doing better. I am hopeful. I will be doing weekly injections as that is what was approved by the FDA. I start on Monday. Chronic fatigue is a real issue for me so I was happy to hear your moms energy level increased.
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Actermra and Pred tapering.
Tocilizumab extension 
