No steroids for me

Eileen, you repeat again your assertion that no other medication manages PMR (see my other post on this thread) My Consultant reconfirmed my PMR diagnosis after I questioned him about this. It's taken about 18 months for me to return to normal while taking methotrexate. To be honest I'm not really bothered what caused my problems but the fact is for some time I was crippled by my condition and in considerable pain so I am happy to assume that the use of methotrexate must have had some effect! And it might work for other people in a similar situation.

Just to add to my previous post, I studied this:

http://www.arthritisresearchuk.org/arthritis-information/conditions/polymyalgia-rheumatica/treatments.aspx

It includes a reference to methotrexate as a disease modifying drug. It refers to it in the context of being taken alongside preds rather than as an alternative. In my case it was used exclusively and presumably was the cause of my reduced inflammation readings and subsequent pain relief.

I'm not qualified to discuss this any further!

I also believe that MTX does nothing for PMR, I took it for 2 years and got nowhere except a giant flare-up.  I agree that there are several rheumatic type conditions where MTX does help, but they are not PMR.

This isn't entering a discussion - it is answering your quote.

All the major guidelines and texts about management of PMR and GCA emphasise that "corticosteroids are the mainstay of management". You can mess about trying other drugs with patients who have PMR - if it doesn't work the worst they will have is a lot more pain than they need to - but to do so with a patient with GCA is unethical. The most feared consequence of GCA is irreversible blindness - and to date the only drug that is known to reliably prevent that is high dose corticosteroids. It is possile that this time next year we won't be saying that - a trial is just in its closing stages that MAY show that tocilizumab can be used to induce remission with far less pred. We don't know yet, the results are not published. The rumours are it looks good. But it doesn't replace pred - pred will still be used because it is known to work.

And it won't be on offer for PMR - I have little doubt that it would work there too if it works for GCA - but the horrible reality is that it is VERY  expensive, $17K a year and it is not yet known whether it will work with just a few doses to obtain remission or whether it will have to be given on an on-going basis, just like pred, until the autoimmune cause of GCA burns out, just like pred. In fact, it is quite unlikely it will be given a blanket approval for GCA - pred works, pred is cheap as chips, the NHS is almost bankrupt because of expensive drugs. Tocilizumab is also not sweeties when it comes to side-effects - and they will be publicised in time as it is used more and more and lots of patients start showing the downsides. It's only once a drug is in widespread use that they see the real side effects rates.

In this post

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

you will find links to the "2015 Guidelines for the Management of PMR", compiled by the top experts in the world, to an article by Sarah Mackie on the Scottish website and a paper for GPs written by Quick and Kirwan about their approach to managing PMR and GCA under the heading "Bristol paper". There are many others I could quote if I took an hour or two. Not one of them suggests methotrexate for anything other than possibly as a steroid sparer - it potentiates the action of pred in some patients, but not all - and every single one discusses pred as the primary management option.

There have been clinical studies using mtx alongside pred - there is no conclusive evidence it results in a clear reduction in dose over a longer time and no evidence it results in a reduction in steroid side effects. That means it adds in potential side effects of its own and may not work. There is not one single study where mtx has been used on its own for PMR - I don't think I have even seen a case report to that effect though no doubt there is one somewhere. 

If someone wants to try it and it doesn't make them ill - that is fair enough and that is what the most recent guidelines say, it is a decision that should be made jointly between the patient and the doctor. mtx is a DMARD, a Disease Modifying Anti-Rheumatic Drug. The disease it modifies is RA, it works in some way to reduce the damage done to the joints which is the hallmark of RA and the most feared aspect of it beyond the pain. There is no joint destruction in PMR, PMR is different from RA, and while for some people it may help, it doesn't reliably. If it did then they would use it far more than they do. Many doctors in Germany do I think - but it is by no means universal. 

The more medications you put a patient on to the bigger the risks of interactions and problems with compliance. If the only drug you take is pred for PMR then it could be a reasonable ask to say, why not try mtx too? But the reality is that there is almost no-one on this forum on just pred - I was until atrial fibrillation raised its head but now I take 5 different drugs spread over 3 times a day. I have no desire to add another 2 to the mix - mtx and folate - even if the mtx is just once a week. On its own, fair enough, mixed with the rest? No thank you.

Eileen

Issued 13 July 2016

NHS England has carefully reviewed the evidence to treat GCA with tocilizumab.

We have concluded that there is not enough evidence to make the treatment available at this time.

Eileen

Issued 13 July 2016

NHS  England has carefully reviewed the evidence to treat GCA with tocilizumab.

We have concluded that there is not enough evidence

to make the treatment available at this time.

 

Yes - but that is the consultation about the use that has been ongoing since the spring. Totally stupid because the results of the clinical study were not available - they were looking at the small studies and anecdotal evidence - all very poor.

Wow, this is pretty timely for me - I went to the rhuemy yesterday and he's putting me on tocilizumab. I have to go on plaquenil for three months first due to govt regulations, but as usual, I'm a 'special' case. lol

It will be interesting to see if it actually works any better than just plain old pred. I do wonder if pred alone is no worse than all the other drugs I"m having to take - MTX, Lryica, now plaquenil, soon tocilizumab. I hate to think of what these chemicals are doing to my body.

If it works anything is good. If it doesn't - no it isn't!

TCZ is already used a fair bit in RA although fairly far down the list to be used when the cheaper alternatives have been exhausted. There are a few people in the US who have been given it - though there the cost is a factor as it it isn't yet approved for GCA and the insurers usually won't fund it. I gather the company is confident it will be submitted for FDA approval for GCA in the next few months - shouldn't pose too many problems if it did give good results in the trial as it isn't a new drug.

Do tell us how you get on.

I hope this drug helps you, I am amazed you can tolerate so many meds at once!  Having fibro, I am extremely sensitive to all drugs, even "natural" and pred!...Good luck....

Do you have to stay on plaquenil for the whole three months if you get undesirable side effects from it?  (I know I'm jumping the gun here.)

Odd, I've had fibro for years now, and don't find any problems with drugs given to me for other (multiple) conditions - just find the ones that are supposed to help fibro don't!

TCZ is a regulated drug here worth around $10k AU annually, which is why he's 'reclassifying' me as having LORA.... even though I don't have it ,... to get around the reguations and save me having to pay for it without subsidies.

I'll start another thread so I don't hijack this one. lol

Are you sensitive to noise/light /smell like I am....chemicals in drugs seem to be a sensitivity like those I`v mentioned.  I know what you mean by the drugs offered for Fibro though.... very few people I know can tolerate them....

This is why my doctor and rheumie  want me off pred ASP, (10mg) they think I`m getting side effects still,  been on it 4 years now....but if PMR kicks in....well....Eileen has often mentioned injections I think with steroids....so that may be a route I will have to follow in future if it happens.....fingers crossed!

Have problems with noise and light, but not with smell - although if I am poorly, my sense of smell seems to disappear.

I've been on steroids for more than 15 years now and will be on a maintenance dose for life.  I don't have any problems with this - I have a happy life!

Did the trial conclude that TCZ was a replacement for pred or is it pred and TCZ as a steroid sparing agent?

Don't know - I don't think the full results are out yet but the interim results appear to indicate (statement from June 6th):

... ,Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), today announced positive results from the Phase III study known as GiACTA, which evaluated Actemra® (tocilizumab) in people with giant cell arteritis (GCA). The study met its primary and key secondary endpoints, showing Actemra, initially combined with a six-month steroid (glucocorticoid) regimen, more effectively sustained remission through one year compared to a six or 12-month steroid-only regimen in people with newly diagnosed and relapsing GCA. No new safety signals were observed with Actemra in the study at the time of this analysis. Adverse events were similar to those seen in previous Actemra clinical studies."

"“Currently, long-term high-dose steroids are the mainstay treatment for GCA but they can cause their own serious adverse effects. If approved, Actemra will provide an important new alternative to long-term steroid use for people with GCA.”"

i.e. It works to get the steroid dose down and the result is better than pred alone and lasts for a year at least. That desn't say HOW MUCH better it is - it may be just a month or two. However, it has not yet been approved by the authorities so won't be funded by any insurer for GCA and if the extended remission is just a short time they may not do so - it has to show value for money. Personally, I'd think it may be approved for problem cases - the ones who need to get off pred for serious medical reasons. Whether it will gain approval for everyone is another matter. And whether, having been approved for everyone by the FDA, it will be approved for general use in the UK is yet another matter.

At least they won't have to do safety studies - it's already in use.

If the moderator allow - this is the statement from Roche;

http://www.roche.com/med-cor-2016-06-06-e.pdf

That`s good, nice to hear....what do you call a maintenance dose, 5mg? I hope to get there and stay there as well.....

Nefret is on a maintenance dose because her adrenal glands don't work properly and so the pred acts as a supplement, like thyroxine when your thyroid doesn't work.

As far as PMR is concerned, everyone is different, one person might need 9mg, another manage really well on 3mg. You find out when you get there! 

I was on 5mg for 3 years, am currently on 7.5mg till October when my cortisol levels will be re-checked (a syncathen test) and we can make any adjustments necessary.  I'm feeling pretty good on 7.mg.

 

Looking forward to getting there,....will let you kniow when I arrive, you will hear the cheer, it will echo around your mountains!!

really interesting, thanks Elieen