What about plaquenil?

[Lanakay]

Saw my rheumatologist Tuesday. I was diagnosed in September and started on 20mg of prednisone. I have been at 7mg of prednisone for 3 weeks. I’ve been at 7 before and had to go back up. My sed rate has gone from 15 to 47. He said to stay at 7mg and added 200mg of plaquenil since I have had trouble tapering. Is this unusual?

[DorsetLady PMRGCAuk volunteer]

Hi Lanakay,

Personally I would say that you have reduced far too quickly, borne out by you having to increase from 7mg previously. Whether that’s your Rheumy’s choice or yours not sure....but it obviously hasn’t worked. Do you have any other health issues that made the quick reduction necessary?

Your sed rate has gone up because the dose of Pred you’re on is not enough..simple as.

I would be inclined to suggest to Rheumy that you find the correct level of Pred you actually need, and when you’ve established that, and have a sensible tapering regime there will be no need to add in another drug.

Your Rheumy is obviously still under the misapprehension that PMR goes within 2 years...he’s a bit out of date - have a look at this

rheumnow.com/video/dr-kathr...

[PMRpro Ambassador]

The international guidelines only list methotrexate as a DMARD that is possibly a help - they specifically say that there is no evidence for plaquenil other than a single poor quality study. On the other hand, there are rheumatologists who feel it is a drug with few side effects and it is worth trying.

Like DL, I feel to have got from 20 to 7mg between September and now is fast - and you have slightly overshot the mark. You are never reducing relentlessly to zero, you are looking for the lowest dose that gives the same result as the starting dose did. PMR has a median duration of 5.9 years

medpagetoday.com/rheumatolo...

and rarely goes in under 2 years. This is the article about the study DL's video comments on. This isn't a race and plaquenil will have no effect on the PMR disease process.

Personally, I think adding plaquenil at such an early stage where you are already at a physiological dose is OTT. But then - I'm not a medic, I'm a patient who would be faced with the extra layer of side effects. You have had eye checks I trust?

[SheffieldJane]

I have nothing useful to add except to reiterate that there is scant evidence that Plaquenil, a drug for Malaria originally and found to be useful for Rheumatoid Arthritis, will help you at all. As you are already having a struggle, I wouldn’t want to muddy the waters anymore. A few mgs of Pred will, I imagine, help loads. I am stuck at 7 ( took me 2 years to get here). One extra mg and I was out of pain and stiffness.

[IslandShell]

My Rheumatologist added Plaquenil to my Prednisone, took it for approximately 2 years and so no benefit so quit taking it. Good luck to you, this can be a long journey but it is very important to step down with the Pred. VERY slowly.

[Lanakay]

I took it upon myself to stop taking the plaquenil. I had a headache every morning while I was taking it and Easter morning was no different. I don’t need anything that makes me feel worse! I am still tKing 7mg of prednisone everyday and am doing okay with that. Sometimes I’m a little achey but that’s better than the headache!