Plaquenil?

[Sped53]

I have been on prednisone for 15 months and am down to 5 mg. I cannot seem to get below that dose without having a flate. My rheumatologist has started me on Plaquenil and has said this should help me get off the prednisone. He said he would rather see me on Plaquenil instead of prednisone due to less side effects of the Plaquenil. Has anyone used Plaquenil with any success? Of course I’m skeptical as I have not heard of this.

[Mary63]

I have not used any steroid sparing agents, but if you look to the top right on your screen you will see other questions which have been asked and their replies.

If you are down to 5mg after only 15 months I would say that is wonderful! Why do you need another strong medication with all the myriad of side effects?

[fmkkm]

Hi Sped,

GCA diagnosed January, 2016. Started on prednisone, 40 mg. My 1st rheumatologist appt was the end of March and he prescribed Plaquenil. The first pill made me feel very bad so I stopped because I knew it was not the drug for me. Many people with RA find it works for them.

After 3+ years I am down to 4 mg prednisone which I think is reasonable. It sounds like you might have one of those rheumatologists that think this condition only lasts 1-2 years.

If you decide to take it let us know how you get on. Best/fm

[PMRpro Ambassador]

To be at 5mg after 15 months is absolutely normal and it is a low dose which is causing few longterm side effects except cataracts (I've been on well above 5mg for 9 years, no cataracts, no osteoporosis and no diabetes, they aren't inevitable) - don't care what your rheumy says, better experts than him have done a study:

medpagetoday.org/rheumatolo...

Your body makes more corticosteroid than that to function normally, and if you lower the pred dose the body just tops it up with cortisol.

The 2015 international recommendations for management of PMR mention plaquenil - there is no evidence it helps reduce pred dose and it absolutely does not REPLACE pred for PMR: Recommendation 7, Plaquenil is hydroxychloroquine

rheumatology.org/Portals/0/...

If you were stuck at a much higher dose after more than 15 months, maybe I could see a justification for adding another potential layer of side effects. As it is - I would say no, maybe later if I have probems.

[SnazzyD]

5mg in a bit over a year, by all accounts that’s not bad. I don’t think I’d want to have another immune suppressor, with its risks, thrown into the mix at this stage, for no good reason.

[Mrsd12f]

Hello Sped53,

I've been on it for 3 years, but not convinced it's of any use as a steroid sparer, as I've only just managed to get to 5mg. However, I do have Sjögren's Syndrome, as well as PMR, and it's supposed to help with that. Again, I'm not convinced the HCQ does help, but I suppose the only way for me to find out is to stop taking it! As others have said, for you to be on 5mg of Pred., after only 15 months, seems to be good going.

If you do decide to try it, bear in mind that it can take about 12 weeks to work and make sure you have regular eye check-ups, as prolonged use can affect the eyes, though my optician told me he's never come across a case.

[PMRpro Ambassador in reply to Mrsd12f]

There are a couple of people on the lupus forum who have had to stop it because of eye problems

[navejasjoe]

When my wife was first diagnosed with PMR in May, 2016, she was put on 15mg Pred. A month later, she was told to take 400mg of plaquenil daily, with the understanding that plaquenil would replace prednisone eventually. This rheumy tried to get her down to 5mg six months later, which was a total mistake. She was eventually put back at 12mg a year later, and her new rheumy told her to stop taking plaquenil altogether, claiming it was doing her no good. My wife gladly dropped it. Almost 3 years later, she has tapered ever so slowly, and she is currently averaging 10.5mg pred per day.

Joe

[SusanEleven]

When I got stuck at 4mg and could not go lower without problems (failing twice to reduce), my rheum doc, who is usually quite wonderful, suggested Plaquenil. She also said 4mg pred was such a low dose it wasn’t problematic. I said no way was I adding another medication.

I ended up staying on 4mg for 11 months. After that I was able to do a 1/4mg at a time taper and have been on 3mg since mid-December 2018. I’ve had PMR for just over 3 years now.

[RobinRDean]

I used Plaquenil to succeed in getting off prednisone a couple of years ago. I am still on it and have had no adverse side effects. Hope it helps you get off the prednisone.

[Sped53 in reply to RobinRDean]

I am glad to see a positive response about that medication. Any idea how long you will need to be on Plaquenil before you go off it? How long did it take you to taper off prednisone once you started on Plaquenil?

[Nitrobunny]

It did not work for me and it gave me night terrors.