Hello
has anyone taken Plaquenil to help reduce steroids for PMR?
did it work? any side effects?
My Rheumy says it's better to be on Plaquenil than steroids long term so it's worth trying because I'm having trouble getting off steroids.
I've been on Methylprednisolone for 2.5 years, currently at 6mg (after a slight flare at 4mg).
Hi ItalyboundI've not tried any of the sparing drugs.
I was on prednisone for 9 yrs never a flare just a turtle taking it slow and easy.
So being at 6.5 mg after 2.5 years is great. I feel your Dr maybe trying to rush you off prednisone like alot of ill informed Dr's.
Unless you're having problems personally I'd take it nice and slow.
I just read your bio and I too suffer from migraines and headaches and that was something that prednisone took away until I was off prednisone. Prednisone masked my arthritis, bursitis and other things that started to pop up at low doses.
I've been off prednisone for over 1.5 yrs and just now starting to get back to some semblance of normal.
I'm in Canada
Yes. I have been suspecting that the prednisone is the reason my migraines have pretty much stopped. That’s so great that you are off prednisone! so have your migraines come back now ? I’m worried about this. Those migraines are awful.
I also wondered if the prednisone is masking other issues, like it’s so hard to tell the difference between that and PMR. so I guess this means you tapered it off while feeling some pain.
Have you always had pain since you started the pred? You should have at least 70% improvement. If not you should go back to your doctor and tell them. What issues are you having that you think may be pred or PMR?
No I am mostly 100% pain free until I get down below 4 or 3 or 2 mg. (Several attempts)
The issue is that when I get real low on the dosage, I feel some mild shoulder and arm pain. Usually just my left side. It gets worse as the days/weeks go on and then I up my dose to get rid of the pain so that I can properly taper. Very low to no inflammation in labs
I’ve been tested for every possible autoimmune disease.
By how much do you reduce eg from 4mg to 3mg or 4mg -3.5mg?
I was doing 4 to 3 over course of 10 weeks transition and then held 3mg for 4 weeks
Then tried 3mg to 2mg and flared in 2022. Spent 2023 getting from 10mg back down to 4mg again
Problem I have is that methylprednisolone only comes in 4mg tablet as smallest in the U.S. (Trust me I’ve checked every where. I know Pfizer makes it smaller for other parts of world)
gets difficult to create 1/2 mg pieces so not easy to do 4mg to 3.5mg
This was previous taper in 2023
I’m currently flaring at 6mg and figuring out what to do I’ve never flared at this high mg before but I’m going through a lot of family stress (multiple events) since April which should calm down soon
So hence why Rheumy is recommending a mild sparing agent with all my taper failures.
I’m also taking LDN ( prescribed by my regular doctor to help w taper) which I thought was helping for a while but not sure now
I’d love to know if anyone else from US can taper off Methylprednisolone. maybe I should ask in separate post
Can you get a pill cutter as a 0.5mg reduction may help?
I am using pill cutter. To cut 1/2mg it is 1/8th of the 4mg tab which is difficult to precisely cut. Turns to dust or just not an exact 1/2mg. 🫤
Doesn’t have to be exact - you so long as it’s smaller than the dose you are tapering from….. although trying to get an eighth of tablet certainly sounds very taxing.😳
It is not the end of the world if it is not exactly the same amount day to day, but it may make the reduction easier.
You should always have your pain under control. If in pain you should not reduce or you'll end up in a flare. Get your pain in control. In the end I had adrenal issues so I was in utter exhaustion.
I recommend that if your feeling adrenal exhaustion don't reduce, stay put for weeks/months to let adrenals catch up.
I got off prednisone in January but I really say March because that's when the adrenals started slowly kicking in.
As for migraines and headaches they are back but not as bad. I've learned over many years as soon as I feel a twing I take 2 extra strength ibufprophin painkillers. That usually works thus no perception meds. Fingers crossed 🤞
Yes prednisone can mask other issues but as I mentioned mine started to surface at your dose.
I appreciate your sharing very insightful info. even about the migraines
what I meant by 'you probably tapered off in pain' is that you must have felt the arthritis pain but I guess you could tell it was different than PMR pain?
Absolutely; you get to know over years the difference in pain. If any over counter pain killer works it's not pmr.Trigger fingers; bursitis in one hip, arthritis is specific fingers are a dead give away.
As for migraines as I mentioned I learned to stamp it out asap.
At one point in my life I had migraines 2-3 times a week. Stress again.
So if pmr can teach you anything is to really try to get rid of stress and it humbles you to slow down and learn to say no. It took me the 1st year to say no.
I've carried that on in remission and I believe it's better for my health. Good lesson to learn.
In lower doses I started to really loose muscle so I went to my son who does strength conditioning for top athletes and he got me back feeling better. Unfortunately covid hit and my bursitis so I need to return. I do swim laps daily.
I’m going to try your suggestion to try over the counter meds again next time I feel pain when tapering and pay closer attention to see if they work or not
In the past I thought they didn’t. But will give it another go. Thx!!
Hi there, while I haven't heard of that, I'll be interested to see replies. I've been on Prednisolone for just over 2 years and desperate to get off them.
"My Rheumy says it's better to be on Plaquenil than steroids long term"
Possibly - but it VERY rarely works in PMR! If you can get to 4mg on your own before the inflammation builds up again - then stop at 4mg when you get there. Wait a bit before trying another 1/2mg taper, very slowly.
You are never heading relentlessly for zero come what may - you are titrating the dose to find YOUR optimal level, the lowest dose that gives the same result as the starting dose. The more often you try to force getting lower, the harder it becomes to keep things under control. It is a mistake many doctors make in their fear of pred longerterm even at low doses.
My Rheumatologist actually also said that also. That Plaquenol does not work well in PMR. She really wanted me to try Methotrexate but I’m afraid of it
Would that be better option?
Exactly the same applies - although for some people MTX does work well, it is only for a small minority. Again - if you can get to 4mg on your own, it is silly to add in a drug that isn't guaranteed to work and has its own portfolio of adverse effects that are potentially far worse than any associated with 4mg for a couple of years. The top rheumies in the field are horrified at the concept. If you were stuck at above 10mg then even I would say you should try it. At just under 10mg, there is an argument. At 4mg - it is a very weak one.
I 100% agree with pmrpro. You have made it under 10mg in 2.5 yrs which is awesome. Take your time and don't let them push you.
Thank you! 🥰 I tried 3 times to get below 3mg and flared. will try again. lol
Did you ever flare and have to go up in dosage during those 9 years or did you just go extremely slow with with one long taper all the way to zero?
As my new rhumitologist 1st said 9 yrs. you must have gone up and down. NOMy 1sr rhumitologist never thought I'd ever get below 5mg.
For me even at high doses and only dropping 1mg from 20mg using the Dead Slow Method I could feel it.
Unlike alot of people I would stay at that dose for up to 3 mos until I felt my bloodwork was ok and I felt good. Many times my rhumitologist would say my bloodwork is fine but I'd say No. It maybe be your normal but not mine. When my markers are here that's when I feel good.
I always knew my body and limits because I played competitive sports up until about 2 yrs prior.
I really feel you need to be in tune with your body.
As many long time PMR people say this is not a race. For some you can go through it easier others like my cousin, she's a lifer.
I figured the dead slow method is the best and you can double up weeks if your feeling it. Time in-between drops, listen to your body.
At low doses drop slow and cut those 1mg pills. If adrenals giving problems stay put. I stayed at one dose for a yr to get caught up.
You can always private message me.
Wow! Insightful! Thank you 🩷
Rheumatologist told me that I need to get off the prednisone (7.5 years on) but that my hands and arms and feet etc are all full of osteoarthritis that the prednisone has helped masked. So I guess pain as you get lower and lower is expected. I have had a vacation from AGING but now it is coming at me full force! But the difference is, tylenol *paracetamol does help with this pain so not PMR pain.
Certainly at higher doses [whatever they might be] the Pred is masking any inflammation from osteoarthritis- much as it masks lots of different inflammation pain. The problem is that your osteoarthritis may or may not be getting progressively worse, but you don’t know that until you get to the level of Pred that isn’t working on that inflammation - and when the pain caused by bone on bone resurfaces.
I was shocked when she took an xray of my shoulder...where I had no pain..and said that it was pretty bad.. and she was surprised it didn't hurt yet!!! I never realized that PMR and prednisone would be a sweet respite from getting OA pain! what a trade off. And then she told me after telling me to get off prednisone that they often treat the OA with what? yup. prednisone! but for me I assume she is planning something else. But as long as the tylenol works I will stick with that. Just hope the PMR is gone! Will find that out in the next couple months with this taper. Not going down more than .5 every 2 months!!
I had osteoarthritis way before GCA - and GP - wise person that he was - said many people over 50 are likely to have osteoarthritis - for some it causes pain, for others it’s doesn’t…
Luck of the draw I guess, much like life itself… and yes mine did hurt, except when on high GCA doses! and afterwards pre replacements… - thank goodness for them.
I tried planquenil. My body didn’t like it and my liver bloodwork skyrocketed so I had to stop. I was only on it two months but I was able to get from 9 to 7.5 in that two months so it is possible that it did help me but I never got to the full dose.
I tend to agree with others that stopping the yoyo is the more important step right now. go slower and don’t overshoot the last dose that you felt good at before you had to increase again. stay there a couple months.
I personally don’t believe that a steroid sparerer at low doses of pred is necessary.
Plaquenil is a branded versus of hydroxychloroquine (HCQ). HCQ is a very widely-used immunosuppressant which can be used as a steroid-sparing drug. In that application, it takes 6 - 12 weeks to take effect, and patience is needed beyond that.
The following article concludes that HCQ works well in patients who develop arthritic symptoms several months after an initial diagnosis of PMR; but not well in the minority of 'true' PMR/GCA cases.
A summary (abstract) is here:
pubmed.ncbi.nlm.nih.gov/278...
The full text is here:
dovepress.com/polymyalgia-r...
The study was not randomised or controlled, but the article is peer-reviewed. It makes interesting reading, because it underscores how difficult PMR is to diagnose, and how snap decisions can result in non-optimal treatment.
This work by Brawer is not regarded highly by his peers in the PMR field. There was also some doubt at the time about the standard of peer reviewal for Dove Press. And frankly - many of us said when it first appeared that we were very glad that we hadn't been under his care!!!
Hi. I tried Plaquenil (well, generic version) for 8 or 9 months. Took my rheumatologist over a year to convince me to try it. Wasn't aware of any particular side effects, but it did not help me with prednisone tapering, so my rheumatologist agreed that I shouldn't continue to take it. She told me it has helped some of her patients with PMR, but not all. So that was my experience with it.
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