PMR, Actemra
Posted , 8 users are following.
I have had PMR for almost 3-1/2 years, now at 8m. Feel good on the 8m.Saw my rheumatoid today and he is ready to give me the Actemra, but, coincidentally, I have had a snafu in my insurance coverage (USA)!
However, as I figure out if I will be able to have this drug I would love to hear from anyone that has had success with it....and, how long before you are off the Actemra?...or do you keep taking it? I am always enthused in the doctor's office, then get home and read about the side effects, then I am not so sure.
Any comments welcome!
0 likes, 18 replies
robby6859 kathy67492
Posted
Kathy, I was originally diagnosed with PMR in Sept 2016 and started on 20mg Pred. 2 weeks later we reduced it to 15mg. Within a week I was hospitalized and diagnosed with GCA. Consequently my Pred was upped to 60mg. That was late Sept. In Nov. my Rheumy started me on sample injections of Actemra that she was getting from the drug rep. From Nov to Jan. I went from 60 mg to 20mg with very little problems. I was taking the injections once a week at home. I was approved by Genetech to begin receiving the infusions in Feb. I am now at 13mg and have really had to start slowing my tapering down. I don't know if it is because I am getting to a lower dose of Pred or Actemra infusions vs the injections but I am beginning to feel a few more aches and pains, especially in my hips. I am grateful for the Actemra because I am sure I would not have been able to taper this quickly with out it. My Rheumy said our goal was to go very slow once we got to 10mg. She also said that once I was off of Pred. I would take the infusions for 12 more months.
kathy67492 robby6859
Posted
EileenH kathy67492
Posted
It isn't routinely used for PMR - it isn't even approved for GCA yet and given the price I would be surprised if anyone would reimburse for Actremra/tocilizumab being used for a patient with PMR who is on a physiological dose of pred which is what 8mg is.
Actemra costs about $17K. It has been used in RA for some years but no trials have been done in GCA and PMR until relatively recently - for obvious reasons drugs won't be approved without undergoing clinical trials to show they work and are safe. The GiACTA trial reported last autumn with very positive results in GCA but the follow-up to see how long the remission lasts when you stop the Actemra is still on-going. It has been submitted to the FDA who have already granted it breakthrough drug status for GCA.
So far there are only anecdotal reports for PMR and there are a few very small scale prospective studies going on - small careful investigations to see if there is any point doing the bigger ones that give a meaningful result showing it works better than the current standard treatment. There are a few patients whose doctors have reassigned their diagnosis as RA to be able to use it and have it reimbursed and the couple I know have had good results so far - but it must be said, there was some evidence to make the PMR diagnosis questionable in the first place. One lady has posted that she was put on Actemra a few years ago for GCA, got off pred quite quickly and Actemra after several more months, had 15 months drug and symptom-free, has just had a return of symptoms and is waiting to start the injections again.
If it were me at a dose of 8mg - I would see if I could get lower first. I was exceedingly happy at 8mg but have got to 6mg. Despite having what is obviously refractory PMR after 13 years I don't expect anyone to offer me anything other than pred in the foreseeable future but I have no problems with Lodotra/Rayos and no sign of any so far. I'd take a cataract or two - I could get rid on one pair of specs!! But there is no sign at all...
kathy67492 EileenH
Posted
Thank you Eileen. That is my dilemma...is the Actemra going to get rid of the inflammation within a "reasonable" amount of time?...Will I feel better on it (more energy, less fatigue)? Or, would I just be risking one set of possible side effects for another? My rheumatoid is mostly worried about spine fractures that can suddenly happen on the prednisone...even though my bone density tests right now are good; also, diabetes, cataracts & glaucoma, etc. Side effects of Actemra include Cancer because of the accelerated tumor growth & increased risk of serious infections (sometimes fatal!). I am having the blood work done today...see how my ESR and C-reactive protein are doing...not that those numbers tell the story. Unfortunately my rheumatoid does not think 8m is a "maintenance" dose. He thinks I should be on a 1-2m dose, and can go back to the prednisone if the Actemra doesn't work. He says Actemra should work (or not) in about 2 weeks, then tapering should be swift.
EileenH kathy67492
Posted
I do appreciate your dilemma. Does he use Actemra a lot to be so sure about it? Personally I don't appreciate being experimented on outside the realms of a clinical trial where there is very close monitoring. Not a lot of "informed consent" either.
kathy67492 EileenH
Posted
My rheumatologist does have patients who have done well on Actemra. I do not however know the specifics about them getting off of the Actemra. I have more research to do. I feel so "desperate" to try something else...see if I can't feel better, quicker. I also know that I have not endured this PMR as long as a lot of people...and I have not had as many side effects...yet.
unless I resolve the insurance issue I won't be having to decide about using Actemra. I do strongly identify with you, Eileen. It will be somewhat interesting to see what my blood work shows....haven't had it done on 8 months. Last test showed ESR as 9, down from 87 3 years ago. C-reactive protein was down to 8 from 67 3 years ago. But, again, the tests are not always indicative, as you know. Intuitively I feel that if I could try the Actemra I would know, one way or the other, whether it is helping. ???
This forum has been so helpful to me....don't know how I would have managed thus far without all of you😃
EileenH kathy67492
Posted
kathy67492 EileenH
Posted
Good idea! With these HIPA laws in the U.S. it might be difficult, but worth a try...maybe one of those patients could call me. My rheumatoid said that he has a lot of PMR patients, most of whom take the prednisone for 18-24 months and are done. I am happy for them. I don't get the impression he has seen or heard of many like me....and he indicated that he has knowledge of the crumbling spine from the prednisone...??
Anhaga kathy67492
Posted
It is a puzzle to me, lowly layperson that I am, why doctors are so terrified of prednisone and or products of a certain unnameable plant, yet happily prescribe statins, opiates, bisphosphonates, without a care in the world. Steroids have scary side effects but unless one is one of the rare people who a have genuine sensitivity or allergy to the med, those side effects can all be managed. As for the crumbling spine from pred, many of us are proof that "crumbling bones" are not inevitable, and even if at risk a patient is perfectly capable of adjusting diet and lifestyle to mitigate the alleged bone thinning effects of pred!
kathy67492 Anhaga
Posted
I so appreciate your input Anhaga. I too wrestle with the medical professions'
fears of the prednisone, but then they prescribe an alternative with seemingly worse side-effects. In the end the interpretation of the risks and benefits are left to the patient. In this case it is not "life & death", but it kind of feels like it😟 I guess if I had more obvious side effects from the prednisone it would be an easier decision.
virginia_l. kathy67492
Posted
I also have PMR since May 2, 2016. I took 3 mos of Actemra injections at 2 injections per month, PMR returned, then 3 mos of Actemra at 4 injections per month. April 5th I was off the Methylprednisolone. Now at August 2017, the PMR has returned. I took 6 MG then 8 MG of Methylprednisolone and the PMR was not responsive to the steroids. Insurance will not cover Actemra treatment for PMR. I paid $17K for these Actemra syringes. My rheumatologist is Dr. Robert Spiera in NYC. I can't take steroids. Anmything over 4 MG gives me unmanageable heartburn, and I'm bipolar, steroids trigger a bipolar depression. I'm going back on the Actemra at 4 injections per month for 6 mos. I'm truly disappointed that $17K worth of Actemra only gave me about 5 mos in remission. Virginia L
virginia_l. kathy67492
Posted
I previously sent you a reply, but I'll add to it. I had no side effects at all from the 6 months of
Actemra - 3 mos at 2 injections per month and 3 mos at 4 injections per month, however Actemra is not a benign drug and has many very serious side effects, including death. The Genetech flyer on the drug is online. Since 8 MG of Methylprednisolone didn't result in an abatement of the PMR and I can't take steroids over 4 MG without terrible heartburn and any dose of steroids causing bipolar depression, I have no choice but to restart the Actemra and I think, after I taper to 4 MG or less of the Methylprednisolon, I'll continue to take the steroid at that dose if I can. Virginia L.
kathy67492 virginia_l.
Posted
You are in a real pickle not being able to take the prednisone at 8m....you really don't have a choice but to see if the Actemra will work. I think most medications can have severe side effects for some people. Legally I think the drug companies try to list every possible side effect to help avoid lawsuits...but we are all different.
Also, a lot of us are combining these drugs with other medications, so it is difficult to know which drug combination is the culprit when we have a reaction.
Then add the food we eat, the stuff we drink, etc. and we have a medley of things to consider.
i wish you well with the Actemra and I am sorry your insurance will not pay for it.
if you can get to 4m of prednisone, that sounds like a reasonable dose...
Best wishes😊
EileenH virginia_l.
Posted
If you aren't get Actemra paid for - why don't you ask your doctor about depot steroid injections? They are now suggested in the recommendations for managing PMR and I know a few people on the forums with severe gastric problems for whom they have worked well and their gastric problems were circumvented.
virginia_l. kathy67492
Posted
I reread all these posts and have the following comments. 8 MG of Predisone is not a maintenance dose. You still have the typical side effects associated with steroids. I agree with that physician. I take Methylprednisolone and my goal, now that the PMR has returned after my course of Actemra, is to see if I can get to and remain at less than 4 MG. My rheumatologist told me that somewhere less than 4 MG, there are no side effects. As for bone mass depletion, get an IV infusion of either Reclast or Prolia. I had an IV infusion of 5 MG of Reclast before my year on Methylprednisolone (starting dose was 20 MG). After the year on steroids (tapered down to nothing), my bone density test was better than before I started the steroids. Any physician that switches your diagnosis to GCA for insurance purposes is committing fraud and can lose his license. I don't think insurance will ever pay for Actemra, since for PMR the steroid dosages are not excessive like GCA. Virginia Labbadia
EileenH virginia_l.
Posted
" 8 MG of Predisone is not a maintenance dose. You still have the typical side effects associated with steroids"
I have no idea what you define as a maintenance dose - in my book it is what you need currently to manage your symptoms. It might even be 10mg.
8mg IS a physiological dose, for most people a similar amount to the amount of cortisol they produce naturally when not on pred. Your rheumy is talking poppycock - some people still have the odd side effect at 4mg, others have no side effects at 8mg - me and many others for example.
I have never taken any bisphosphonate - my bone density is hardly any different to what it was 8 years ago before pred. Having high bone density is not the same as not having fractures - natural good bone density is likely to be preferable to artificially induced bone density.
I hope you DO get to 4mg - but for those of us who don't get to try Actemra, don't look down on a maintenance dose of 8mg. You need what you need to manage the inflammation and allow a good quality of life and be able to exercise - immobility for any reason is a higher risk factor for low bone density than pred.