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Still at 3.5mg pred, now adding Plaquenil.

Posted , 5 users are following.

dan38655
dan38655

I saw my rheumy for the first time in two years this week.

My blood tests show my CCP now normal, but still elevated sed rate and just slightly elevated CRP.

So while I am getting by on 3.5mg pred, still with symptoms but tolerable, my rheumy prescribed Plaquenil (hydroxycloroquine sulfate), 200mg twice a day.

Not that I wanted a new drug, and with lo-dose pred relieving my allergies, not sure what to do.

Especially having successfully lowered my dose back in November, I thought I might at some point be able to reduce again, though definitely not now.

Any opinions on Plaquenil?  I know it is used to treat malaria, and that side effects and risks are said to be small at this dosage, 400mg/day for my 140lb weight.

0 likes, 4 replies

4 Replies

  • EileenH
    EileenH dan38655

    Posted

    It is very unlikely that it will replace the pred anyway. Why add something extra when you are on a very low dose of pred and getting by? If 4mg pred is better for you, I think that would be preferable.

    In the latest EULAR/ACR recommendations for the management of PMR (2015) they say quite clearly that "Hydroxychloroquine was investigated by a single very low QoE retrospective study reporting no benefit regarding relapse rate."

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    You'll find the original via the 6th link, Recommendation 7. 

    Your sed rate and CRP may be elevated for some other reason (even CRP goes up in a respiratory infection) - they shouldn't be the reason for increasing the pred dose or add something else unless there is good other evidence for doing so. Like symptoms.

  • linda17563
    linda17563 dan38655

    Posted

    Well done getting that low...do you really need to add another drug, I will throw a party when I`m down to 3.5...good luck!
  • Danrower
    Danrower dan38655

    Posted

    Hi Dan,

    I was on plaquenil for about 3 to 4 months, when my pred level had been tapered to about 7.5 mg, and I was 4 months into treatment for PMR. Me thinks the rheumy was shooting in the dark from ignorance.

    It did no good for me, and I had a significant side effect of increased sensitivity to light, to the point where I wore sunglasses inside the house. When the photo sensitivity became evident, quit the plaquenil, and took at least a month to purge the drug and the side effect.

    For me, it was totally ineffective, and unfortunately, I seem to remember that the uptake and effect of the drug took a month. So you have to take it for a while to see if it works, then it takes a while to purge it. I was on 400 mg/ day, I weigh 240 lbs.

    Good luck.

  • dan38655
    dan38655

    Posted

    Thanks, Eileen, Linda and Dan!

    I find myself agreeing with your thoughts.  My rheumy also made a softer recommendation for me to go on either Plaquenil or Sulfasalazine in the beginning, two years ago.

    You're right, Eileen, I could be almost symptom-free at a slightly-higher dose.

    I will hold with the 3.5mg of pred, and with the occasional 1mg boost when symptoms flare.  Giving this dosage level several more months will indicate if a taper in my dosage requirement is still occurring, and with good weather upon us, I believe that the taper will continue.

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