new drug

Hi - long time no hear! Good to hear you are down to such a low dose.

My immediate reaction to your post is \"what's wrong with leaving you at 2mg\"?

If you are fine at 2mg but below is not practical - I personally would accept that 1) this is an extremely low dose at which you are not going to suffer much in the way of side-effects, 2) you may be one of the 25% of patients who require a very low dose like this over a very long time (confirmed in several retrospective studies) and 3) there is always the possibility that your adrenal glands need longer at that low dose to get going again.

Is it actually quinine? Or has he given you Plaquenil - which is related to quinine? If so, it is a drug used for rheumatoid arthritis, lupus and in Lyme's arthritis - and it isn't sweeties either. It also has some charming side-effects. No - I know not everyone gets all the side-effects with everything. But I'd need to be pretty convinced it was going to be much of an advantage in PMR alone - I can see the point if the dose you got stuck at were higher and there was a question of RA or another autoimmune disease having developed. I can maybe see the point of the drugs that enhance the effect of pred at higher doses if you have diabetes or other problems. But I have to be convinced that at the low doses the adding in of another drug that isn't proven in PMR has much to be said for it.

That my take on it - you are obviously far from convinced yourself.

do let us know what you decide,

Eileen

Odiecass

Eileen has asked a question re the name of the drug.

When you answer it, let me know and I will ask the question here in the UK

PM will do on this site.

I am picking it up at the Pharmacy today, I will give you the full name later. I think I might wait untill I can see my GP before taking it, I've known him for many years and trust him.

As one who is likely to be put on another DMARD next year (if I am still struggling on the higher doses of Pred) I'd be delighted to be down to 2mg Pred and wouldn't even entertain the thought of another steroid-sparing drug.

I know that Hydroxy works well for a lot of people with RA, but whether that is the case for PMR - well, I might just be finding out if it works or not!

For the record I am now down to 15mg Pred, that's a 4mg drop since August. When I began reducing again, I hoped I'd be at this level for Christmas and I've done it..........woohoo!

Nefret/Catie

Hi Mrs K

The new drug is hydroxychloroquine.

andrew

Andrew - that is the active substance in Plaquenil. To my knowledge there are no studies to show it is of any benefit in PMR at any dose of pred and as I said before, and has been echoed by Nefret, at a dose of 2mg of pred I'd question whether it has any place been offered to you. That is such a low dose of pred I'm surprised at a doctor suggesting taking a drug like that in an attempt to get you off the pred.

Steroids have a bad press - they have a bad press because at high doses they are nasty drugs. But used carefully at appropriate doses and well monitored they are wonderful drugs - especially if you can take such a low dose and not need anything else. They have been used for a long time and the side-effects are well known and well documented. It is crazy to tell a patient to take less steroid and leave them needing pain killers that also have side effects but don't deal with the pain effectively either. And this is a similar action - giving a powerful drug that has side-effects for the sake of reducing the pred by 1mg maybe. After all, none of these so-called steroid sparers can definitely replace the pred. I still believe the patients that these drugs work for don't have plain PMR anyway, there is a component of RA.

Forgot to ask before - can't remember how long you have had PMR anyway. If it's under 2 years - what's the rush?

Eileen

Eileen

A long four years. Thanksgiving week 2008 hit me like a bomb. Finally diagnosed January 2009.

I can't stay on 2 mg. I get to 2mg, feel great for a week or so and then it hits me and I'm back to 5 6 or 7. before reducing again.

Andrew

Andrew - So are you only good at 5mg? Or can you get to 4 or even 3mg? I'm never quite sure how your tablets are dispensed, whether you can have drops of 1mg at a time. However - if you are doing OK at 5mg maybe you need to sit down with Ragnar the Swede's method for reducing at low doses. The really big experts all say that for long lasting success any drop must be 10% or even less of current dose - so below 5mg you are looking at a maximum of 1/2mg at a time. And if you are at 3mg you can't cut anything to get 0.3mg - so Ragnar worked out a scheme to alternate the dose you take each day to make these very small drops spread over several days which does work. He can be found at the pmr gca uk northeast support site - the link is in the sticky at the top of the pmr index page if you haven't been there, but I'm sure you must have been!

There is also comment in the medical literature that the more you yo-yo the dose the more difficult it becomes afterwards to reduce.

Eileen

Andrew

Yes, as Eileen says hydroxychloroquine is the active substance in Plaquenil.It is as Eileen says, it is crazy to give you a pain-killer, that more or less won't touch the PMR.

Do try Ragnar's method, it has been successful for many people. But remember this, PMR has a mind of its own, it will decide when to go. The aim is to get to the lowest dose possible to enable you to live a fairly pain free life. without having to use constant pain killers which may not work at all.