Honey, I'm home!

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. 

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.

Sorry for posting this on the wrong whatever..

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 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'!

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?

Definitely, Eileen.Now I'm convinced that it isn't worth it for me..I seem to be really side effect- prone..you name it, I get it..

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

Wow - it's 28 to 32+ degrees here.

Don't work too hard now you're back.

It's 38 where I am😨...tomorrow in the low 40's..record breaking , they are saying

Where do you live Mimi?😎