HCQ versus Cs for PMR

[podo]

I came across this interesting article on the pros & cons of Hydroxychloroquine (HCQ) v Steroids (Cs) for the treatment of PMR & would welcome PMRPro's comments.

dovepress.com/polymyalgia-r...

The headline conclusion of the article was as follows: In this study, true PMR was infrequent in the absence of GCA. PMR in most patients evolved into seronegative RA, which was dramatically responsive to HCQ use. Treatment of acute PMR with HCQ was a rational alternative to CS use even if progressive additive synovitis had not yet occurred.

For the record, I have been treated for 16 years with Cs & a year ago my diagnosis of PMR was changed to PMR onset Seronegative RA. At that time I started on HCQ and am currently reducing my Cs from 3.5mg. I am hoping that I will eventually be free of Cs, although I may have some HCQ issues to deal with!

[PMRpro Ambassador]

This is a somewhat disputed article amongst PMR/GCA experts! Particularly given the place it has been published ...

I'm not denying there are some PMR cases that are really LORA (late onset RA) or something else. Any of us who need pred for a very long time very possibly do have something else going on - but I don't think that it can be said that you can't have PMR without GCA. Not least because a common cause of protracted PMR symptoms is likely to be large vessel vasculitis (very possible for me given past symptoms). I know a fair number of patients who have been on hydroxychloroquine that didn't help them and it isn't a common first line approach in RA either.

[podo in reply to PMRpro]

That's interesting. It was Rod Hughes who suggested that my PMR was a LVV.

But it was also he who prescribed the HCQ for the RA!

[PMRpro Ambassador in reply to podo]

And it worked! He does seem to have a sixth sense sometimes.

[Blearyeyed in reply to PMRpro]

Thanks Pro , xx

[Lochy]

Hi Podo, what caused you to be Re diagnosed sero negative RA? I’m also sero negative but my rheumatologist claims I don’t have RA. Personally I don’t think she can be that sure.

I have ongoing problems with a swollen and inflamed left knee. Rod Hughes started me on hydroxychloroquine a year past November. I’d been on steroids since March 2016. Whether it has helped other joints I don’t know as they weren’t painful before I started but it hasn’t helped my knee. I then had leflunomide added to the mix in February at half dose then full dose in June. Still no improvement in my knee.

I wonder if I hadn’t started steroids but took hydroxychloroquine in the beginning it might have been better?? When it’s not the recognised procedure we’ll never know.

Currently my one joint is the problem and none of the drugs are controlling it yet apart from a larger dose of steroids which we don’t want ideally!

[podo in reply to Lochy]

Hello Lochy, As you can see, I've been battling PMR (or is it LVV) for a long time but the flare a year ago was different. This time it was just my hands that were affected, VERY stiff, swollen & painful. Rod Hughes took one look at them & diagnosed PMR onset seronegative RA and started me on HCQ. I had increased my Pred from 4 to 10mg & this helped a good deal. Now 1 year further on I've decreased my Pred to 3.5mg and hope to go further. No bad effects from the HCQ as far as I know but I'm watching carefully for eye problems as I already have thinning retina as well as glaucoma.

[Lochy in reply to podo]

Long may it last Podo. I haven't had any other swollen joints other than my knee hence I think why they don't believe its RA but who really knows.

[PMRpro Ambassador in reply to Lochy]

HOW much larger a dose of steroids? I prefer the idea of a few mg more pred than introducing another layer of potential side effects - I already have a host of meds for other things and I have no adverse effects from the pred I need anyway.

[Lochy in reply to PMRpro]

I know I do wonder. I think it would have to be around 12mg but I haven't really tried it.

As you know we end up being told by our doctors that the long term effects of steroids is worse than the long term effects of the other meds we are on! I do find it hard to battle.

Interestingly my trial at stopping leflunomide last week lasted 5 days. I felt increasingly bad but I didn't increase my steroid dose. Suppose that shows me it is having some benefit but then again a higher dose of steroids may have the same benefit.

I do feel my GP and my Rheumatologist look at me despairingly as I try to question the meds and continue to resist methotrexate. And maybe I will just have to give it a go and see what happens. Nobody else has any answers for my swollen knee and it does get me down.

[PMRpro Ambassador in reply to Lochy]

That was my rationale - if I have tried it they know that and my rheumy immediately accepted my "I can't cope with this just to save a few mg pred" - the fatigue was AWFUL. Currently I'm on IRO 15mg -I have a pretty good QOL and the pred isn't causing problems I can identify. I needed the 15mg for cardiac problems, I did get to 11mg in the late summer after the pacemaker but then the PMR reappeared as it does at intervals.Time to try again I think now some of the stresses associated with the B-word have llifted with the arrival of my Italian pension and entitlement to healthcare cover! That had caused some sleepless nights believe me!

[Lochy in reply to PMRpro]

IRO? Get the qol!

The B scenario has caused a lot of worries as has the election here and the potential for Indy ref2!

You forget about all the other things in life that cause concerns. Great news about your pension and more importantly your health care.

It’s the constant pressure to keep reducing your steroids that keeps me on edge. I always feel I’m failing if I can’t reduce

[PMRpro Ambassador in reply to Lochy]

Just say no!!!!!!

The pension is minimal - possibly 55 euros per 3 months but the documentation is incomprehensible even to the local union office that helps us with all that sort of thing free! It may have been paid in November but himself hasn't seen it on the bank balance yet ... But that healthcare card - PRICELESS