plaquenil, sulfaSALAzine: Has anyone been... - PMRGCAuk

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plaquenil, sulfaSALAzine

Summerrental profile image
10 Replies

Has anyone been prescribed plaquenil, sulfaSALAzine to help reduce prednisone.

Had an appointment with a new Rheumey today & she wanted to put me on plaquenil, sulfaSALAzine. Wants me to reduce pred. every 2 weeks by 1 mg. I am currently on 11 mg. She said I have been on Pred. for too long, should only be on for 2 yrs. She also wanted to put me on Fosamax because I have Osteopenia. I said I don't want anymore drugs. I take Calcium & vit. k-2.

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Summerrental
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Can’t help on this specific drug, sorry, but looking at your previous posts you do seem to be struggling with your illness/doses.

Whilst I don’t necessarily agree with Rheumy that you should be off the steroids within 2 years, I do wonder whether you have something else going on as well as PMR, or whether yours is one that doesn’t react as expected.

I’m sure PMRpro will be along shortly with her experience to advise.

Summerrental profile image
Summerrental in reply toDorsetLady

Thank you for your reply. She does want to test me for Lupus

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSummerrental

Ok- hope it’s not.

PMRpro profile image
PMRproAmbassador

She is talking absolute rubbish. There is NO limit to how long you can remain on pred, the vast majority of us here have been on it for more than 2 years - not least because there are studies showing that PMR lasts for up to 6 years for half of patiens, longer for the other half. The Germans teach that PMR lasts about 5 years and my own rheumy says he has a lot of patients on long term pred although almost all at low doses. It seems to be the English-speaking rheumatology world that has this fixation with 2 years. They don't say the same about any other autoimmune rheumatological condition.

There is no study evidence that either hydroxychloroquine (plaquenil) or sulphasalazine act as steroid sparers in PMR - they MIGHT be helpful if it isn't PMR but a late-onset inflammatory arthritis but that is another matter. Also, it won't work as she obviously thinks it will - it will take some months to kick in as it would for anything else. None of the DMARDs (the group of drugs these belong to) work instantly and at least 2-3 months seems the norm. And 1mg every 2 weeks after 3 years on pred at a level that will have suppressed adrenal function is too fast for comfort on the return of said adrenal function. That said, there is someone on the forum who has been put onto hydroxychloroquine successfully.

What are your t-scores from the dexascan? Osteopenia is a broad church - from barely under normal to the borderline to osteoporosis. There is no reason to take a bisphosphonate if you are at the good end - I haven't, have been on pred for 12 years and although my bone density has gone down, it is still in the range that calcium and vit D is accepted as management even by our local osteoporosis expert who is very keen on bisphosphonates.

Looking at your history - being at 10/11mg at this stage isn't that unusual - 14mg would be but I'd suspect that is due to your reaction to the Covid vaccine. It may not have percolated through to general consciousness but it is a obvious from the forum that a lot of people have flared as a result of the vaccines. But then - Covid itself would probably have been even worse. In fact, there are some doctors pointing out that Long Covid bears a lot of resemblances to PMR and other forms of vasculitis.

You take calcium and vit K2 - do you also take a decent dose of vit D? I take 4000 IU per day and that just keeps me in the right range.

You say its a new rheumy - so not a lot of point me saying find someone else! If it were me, I would agree to try the hydroxychloroquine/plaquenil but NOT to immediately reduce the pred dose at that rate, or at least, only to 10mg and only if it works. Be sure to have eye checks before starting the hydroxychloroquine/plaquenil as that is a potential adverse effect.

Summerrental profile image
Summerrental in reply toPMRpro

Thank you for your reply, I do take Vit. D also.

AdoptMeow profile image
AdoptMeow in reply toSummerrental

The fourth essential nutrient for bone health is magnesium. Calcium cannot be taken up for new bone growth if you are deficient in magnesium. In the US, research has shown that 85% of adults do not have adequate magnesium in their blood.

Summerrental profile image
Summerrental in reply toAdoptMeow

Thank you, I also take magnesium!

AdoptMeow profile image
AdoptMeow

Hi, Summerrental. Have you not been able to reduce successfully below 11 mg by tapering no more than 1 mg per month? My reading and experience lead me to believe it's best not to introduce more drugs and side effects before trying at least twice to taper down to a relatively safe dose of 2-5mg on pred alone. I was prescribed Plaquenil years ago for fibromyalgia. I'm sure the risk for stroke is very low, but I was one of the unlucky few who had a minor stroke after two months of the drug, which then caused glaucoma in my left eye. I'm certain it was the Plaquenil because I was quite young and had no other risk factors.

I don't want to scare anyone, but it's a good example of why we should be conservative in considering our alternatives and give prednisone a fair chance.

PMRpro profile image
PMRproAmbassador in reply toAdoptMeow

The speed of tapering won't change the lowest effective dose and get you past it. Going too fast or in too big steps means you easily overshoot but even tiny steps can add up to going too low.

weatherman69 profile image
weatherman69

my husband was put on p laquentil?sp because he hated the Actemra shots!! he hates shots!! well that lasted about one month and he was begging to be back on Actemra, so we use icepack, and lidocaine topical and he doesnt mind shots anymore. He almost went into severe flare, but I caught it in time, and able to maintain the level of predisone, by restarting the Actemra (we still had 2 on hand and accessible).

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