Plaquenil and PMR

Posted by novabill @novabill, Aug 6, 2021

Recently saw a rheumatologist for the first time. Prior to seeing her I reduced to 15 mg from 20 mg of prednisone now taking 5 mg at night and 10 mg in the AM experiencing what I call background pain. Doc added 200 mg of Tylenol arthritis twice a day for pain and it has helped. Since the blood work, only the sedimentation rate was mildly elevated, she has added 200 mg Plaquenil twice a day, Tylenol arthritis as needed. I’ll add the Plaquenil tonight. I’ll see the doc in 5 weeks - goal is to further reduce the prednisone.. will let y’all know how it goes.

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@novabill, can you describe background pain a little more? I'm wondering if when you tapered from 20 mg down to 15 mg prednisone, that was too big of a taper and your pain started back up? My rheumatologist always told me to listen to my body when tapering down on prednisone. I only dropped by 5 mg early in my PMR flare up and then had to start dropping by a lower amount. He recommended I keep a daily pain/dosage log and record how I felt each morning and what my dosage was for the day. I never split my dosage for a day but I do understand it helps some people to do that. I always took the full dose when I got up in the morning.

Another thing to consider or try if you are not already doing it, is to make some diet and lifestyle changes to try and help control the inflammation caused by PMR. Here's an article if you would like to know more:

"People with PMR should stick to a diet rich in calcium, vitamin D, good fats, and other anti-inflammatory foods. Exercise can also help reduce symptoms. It is essential to read the labels when choosing which foods to buy. Many food producers use misleading marketing to sell their products." -- Polymyalgia rheumatica diet: Foods to eat and avoid: https://www.medicalnewstoday.com/articles/321683

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The so called background pain, usually experience during sleep and first thing in the AM, is minor when compared to full blown flare up...something not to complain about and usually goes away my mid-morning returning in the late evening at current dosage...wrt tapering my GP had me taper to 10 mg from 20 mg which created a full blown PMR flare up which needed 40 mg/day for 3 day get back to managing w/20 mg/day. So while waiting for the appointment with the Rhuemy I decided to taper to 15 mg/day from 20 mg/day...if I understand my Rhuemy's email I'm to stay at 15 mg prednisone, splitting the dosage, until I see her again on Sept 15th..I'll have had a month+ of Plaquenil plus Tylenol Arthritis as needed also...I am making changes to the diet, albeit small. Trying to start walking everyday but the malaise created by the prednisone is overbearing so much so I take a nap most days to clear my mind. Thanks for the URL...

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@novabill

The so called background pain, usually experience during sleep and first thing in the AM, is minor when compared to full blown flare up...something not to complain about and usually goes away my mid-morning returning in the late evening at current dosage...wrt tapering my GP had me taper to 10 mg from 20 mg which created a full blown PMR flare up which needed 40 mg/day for 3 day get back to managing w/20 mg/day. So while waiting for the appointment with the Rhuemy I decided to taper to 15 mg/day from 20 mg/day...if I understand my Rhuemy's email I'm to stay at 15 mg prednisone, splitting the dosage, until I see her again on Sept 15th..I'll have had a month+ of Plaquenil plus Tylenol Arthritis as needed also...I am making changes to the diet, albeit small. Trying to start walking everyday but the malaise created by the prednisone is overbearing so much so I take a nap most days to clear my mind. Thanks for the URL...

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I am curious about several things. First, did you taper directly from 20 mg to 15 mg without any intermediate stages? Second why plaquenil rather than methotrexate? Third, why split the dosage? Was this something that your doctor recommended or the rheumatologist or both?

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Yes directly to 15 mg from 20 mg...don't have a clue why Plaquenil, doc's choice. I was reading about split dosage and decided to try it to help with shoulder pain relief during sleep and help reduce brain fog during the day...albeit the Rheumy did did tell me to stay on the split dosage.

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I am also on Plaquenil (Hydroxychloroquine) 200mgs twice a day. I have been on Prednisone since April of 2019 for PMR starting at 10 mgs. I have fluctuated back and forth several times to when I got down to 5 mgs. when I started to get pain again. I was put back to 8 mgs in June with the addition of the Plaquenil. I am now down to 2 mgs with no pain. However, I do feel fatigued and get short f breath easily. I did go for a Covid test which was negative. I am wondering if it's a combination of drugs (I am on Anestrozole after having breast cancer) or just the Plaquenil as I was not this fatigued before taking it. Does anyone else have problems with taking Plaquenil?

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I have been on Plaquenil for 3.5 months (300 mg/day). I can't tell if it is helping but I have not noticed any fatigue. I have had PMR since August 2019. I'm tapering from 9 to 8 mgs currently.

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I have had PMR symptoms since Nov 2021. Diagnosed June 2022. Started on 15mg Prednisone for 1 week then 10mg since. Pain is about a 2 most days. Definitely manageable. My Dr wants me to start Plaquenil. He says based on my bloodwork he doesn't think my PMR will ever go away and sees this as a long term medicine. I will see him Aug 1 and have questions about adding this drug. I am trying to be informed and ask the right questions. Those of you who have taken Plaquenil, what has been your experience?

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@hfoster

I have had PMR symptoms since Nov 2021. Diagnosed June 2022. Started on 15mg Prednisone for 1 week then 10mg since. Pain is about a 2 most days. Definitely manageable. My Dr wants me to start Plaquenil. He says based on my bloodwork he doesn't think my PMR will ever go away and sees this as a long term medicine. I will see him Aug 1 and have questions about adding this drug. I am trying to be informed and ask the right questions. Those of you who have taken Plaquenil, what has been your experience?

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Hi, hfoster,
I guess my first question is, is your doctor a rheumatologist? I've been researching this wonderful disease since Sep. 2021. I don't recall ever having heard of a doctor making that kind of prediction for a patient - ever. Unless, of course, the patient was already a "longtimer". I believe they say the average case lasts 5.9 years, now. Of course, some are shorter cases, and some are longer. I think I would recommend you get a second opinion. Further, your drop from 15mg to 10 mg of Pred in one week was pretty fast and pretty big drop. Most of us stay on the initial dose longer. Like a month or so. Then drop in smaller amounts over time. Most of us feel "miraculously" without pain within at least a week. Further, when I saw my opthalmologist, he warned me that if I were to be put on Plaquenil (aka hydroxychloroquin) he would need to keep a close watch on my eyes.

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I was diagnosed with PMR this past August 21st and I was put on 400mg of Plaquenil at night, daily. I am interested in hearing from anyone that has been on Plaquenil as far as to how long it took to start getting some relief, as well as if you started having any side effects.

Thank you.

Jerry Wilck

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@wilckdds

I was diagnosed with PMR this past August 21st and I was put on 400mg of Plaquenil at night, daily. I am interested in hearing from anyone that has been on Plaquenil as far as to how long it took to start getting some relief, as well as if you started having any side effects.

Thank you.

Jerry Wilck

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I have a vascular condition that Lupus Patients usually have so I was prescribed 15 years ago with 400 mg of Plaquenel. 10 years ago, it was reduced to 200 mg, and I’ve been fine. However, I was diagnosed with PMR six months ago, and I really believe that Plaquenel has helped the symptoms to decrease, along with Methylprednisolone. It’s a good drug and it caused no side effects for me.

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