I've been away for a while (tell me you've missed me!) as I've been incredibly busy at work (where I usually spend time reading and writing on this forum) and then on a month's holiday.
In case any of you remember, I started on a trial on Actemra (Tocilizumab) a while back. I've been pretty quiet about it as I didn't want to jinx myself, but I can say that it's been pretty much a miracle for me. From 20mg this time last year, I'm now successfully down to 2.5mg and counting. I fully expect to be off pred completely in a month. I feel well, just fat and unfit from all the pred and inactivity associated with PMR and depression. I do get a lot of chest/ear infections which are a side effect of Actemra (and having no immune system to speak of).
Thanks for sharing your experience. I'm wondering if actmera, if given from the beginning, instead of Prednisone, would work on its own or is it prescribed as a steroid sparing drug only?
It must be effective if you are at 2.5 of pred in only a year.
Hi Flip - you heard me! I was wondering how you were getting on just yesterday - people on another forum were on about Actemra. Good to hear it is working for you.
I don't think it is being regarded as a steroid-sparer - it is thought it is working on the actual cause and putting it into remission. However, in GCA they cannot use it on its own for ethical reasons because if it doesn't work in someone for any reason they could lose their sight and they KNOW pred works there when used in a timely manner. So they use both and aim to get you off pred quickly.
In the case of PMR they probably could/would use it alone - except because of the price I'm sure there will be problems about going straight to it for a non-life-threatening disorder that is perceived as being limited. In RA they start with the lower DMARDs and only progress to the MABs later.
Glad to hear of your success with Actemra! I too have started Actemra...have only had two infusions and I feel great & have dropped down 2m in 6 weeks. I am also afraid of being jinxed! It is like a miracle to feel this good and to be dropping the prednisone. But will it last? Will there be other side effects? Feel fortunate to be able to "roll the dice" anyway I guess. I am hopeful that it will become cheaper and more available to others😊
Thank you Eileen, you are always abreast on everything re PMR/GCA, like I wish rheumatologists were..Surly they could manage to learn about PMR ..they couldn't have THAT many diseases to keep up with! It must feel really good to help so many people and be such an expert on an illness that affects you personally. Thank you, thank you......
So, when Toz is prescribed for PMR , the tapering of the prednisone is only to avoid withdrawal symptoms and doesn't require the 10% a month rule?
I took my weekly dose of mtx last Thursday and was very mindful of my symptoms, I've discovered that it(mtx) gives me debilitating symptoms that render me practically bed bound for four days, then I have another so-so day to recuperate, which leaves me two days to figure out if the current pred dose is working.So, in my case mtx definitely defeats the purpose of taking prednisone.
I will try spacing out the days between dosis of mtx by 12 days instead of weekly till September, when I see the rheumi. He said if I had any trouble, he would try the Toz on me....and..."see you in September" (as if it were a normal thing to shut down a whole department in a large hospital in the center of Madrid for two months😂.
I learned something new today about Actmera..thank you Flipdover for sharing and our walking dictionary ( remember that term?..hahaha), for all the new, latest info.
I think it is a case of only the doctors who actually worked in hospitals where the trial with tocilizumab was done would be au fait with it. And it was a double blind study - no-one was supposed to know who was on what and junior doctors tend to move on. The lesser mortals tend not to attend conferences either. Until the senior person comes across it it won't be introduced - I think it is very much the same in any country where advertising of drugs directly to patients is not encouraged/allowed.
As for the mtx - if it made me feel ill for more than 1 or at most 2 days I'd stop taking it. As you say - that removes any benefits it could possibly have.
But I'm intrigued that Spain has put tocilizumab onto general release...
Apparently, consultants in the public system here, have the power to prescribe drugs that aren't officially approved for a disease..so maybe he just considers me a good trial subject..I guess I'm hesitant to quit the mtx just n case the rheumi thinks I am not a "complying" patient and not worthy of the tocilizumab... But you are right, it's silly to keep taking mtx if it making me feel worse that the PMR without the Prednisone. Who is say that I wouldn't taper smoothly without the mtx or tociluzumab.!
I've been on Actemra for almost a year and I'm down to 5 mg pred from 80. My rheumy is saying I'll probably have to stay at 5 for the rest of my life ( I'm 71) since she doesn't think my adrenals are producing steroid. I was taken off MTX about six months ago. I've had GCA for 8 years with 4 relapses and PMR about 6 years ago. I don't have PMR anymore but do have bad back and leg pain from my scoliosis and stenosis. I have had a few lung infections since I started Actemra. Had to do a week of antibiotic infusions while going off Actemra and eventually a lung flush. Not having ear problems.
I started Actemra every other week but now take a shot every week. What about you?
I was on MXT when I started on the Actemra, Mimi, but the only obvious side effects were a bit of brain fog and meloncholy. I went off that a few months ago.
In VERY simple terms the Actemra stops your inflammatory response created in the liver. My CRP is now 0 - because I simpley CAN'T have raised levels - no inflammation is 'allowed'!
It really was a holiday - Mr Flip and I went off in our caravan and headed north to the warm weather in Queensland - it gets very cold here in Canberra (Australia for those who don't know where I live!) during the winter. As I speak it's only 2*C - which is an improvement on the -5*C it was a few hours ago.
And I really have been flat out at work - building a website which will be launched by one of our Govt Minister's next month. It's on aged care data if anyone is interested in the subject! lol
I'm glad it's not just me that didn't want to risk my joy by sprouting too much! lol
I'm really lucky as I have mine by weekly injections - which I do myself - so no need to go anywhere near a Dr or hospital!
Here in Australia it has been put on the PBS (The Pharmaceutical Benefits Scheme is a program of the Australian Government that provides subsidised prescription drugs) so it costs me almost nothing in the scheme of things. If it hadn't been I would have paid the AU$10-20k per year - it's that good!
The only side effect I've had is the increase of upper respitory infections - ears, throat and bronchitis. Bit of a nuisance but managable. Nothing like the pain and fatigue of PMR.
I'm also on weekly injections, I don't have a problem with it - it only takes a couple of seconds and I really can't wait to get off pred completely - one less pill to take!
Yeah, it seems the upper respitory thing is pretty common. My rhuemy is a bit concerned about the frequency that I've been getting them and has warned that I could get very sick if things go wrong. I try not to think about that!
Hi FlipDover Aust, glad to hear that you are down to such a little dose. I am at 20 mg on Monday from 30 mg. Could you please explain what method you use to get to the 2.5 dose. Thanks 🙂
I am with you FlipDover! I feel so much better on just two infusions of Actemra. It is like I can feel the inflammation has receded. I didn't seem to have a lot of the side effects from the prednisone...I had "episodes"...but it feels good to reduce! How long have you been on the Actemra? Infusions, or injections?