Hi all,
My rheumatologist recently suggested I try a prescription of Hydroxychloroquine as I am tapering off of prednisone for my PMR and still having trouble with very sore muscles.
Have any of you tried this as a potential way to help with PMR pain and what were the pros and cons?
Earlier I was prescribed Methotrexate and absolutely hated how I felt using it so I quit it cold turkey and decided to take my chances just slowly tapering the prednisone.
Contrary to what many doctors appear to think, you don't take a course of pred and then simply taper to zero. Reading your profile suggests to me that you also don't quite understand the use of pred. Pred is used to achieve remission of SYMPTOMS by combatting the inflammation: drug-induced remission. Nothing except time will achieve the other type of remission where the underlying autoimmune activity burns out and ceases to be active. It isn't masking anything, it is dealing with the inflammation by stopping the action of the inflammatory substances. Nothing exists that will do more than in one way or another, And pred is the only thing that does that for all the mechanisms, even the biologics Actemra and Kevzara are just very expensive, albeit effective, steroid sparers but they only work on one mechanism and if your PMR involves others they don't work perfectly.
This a recent publication by a leader in the PMR fieldon this concept - I think one of the most important pieces of work for years - if only more doctors were aware of it:
You may have had PMR for 2 years but PMR does not obey any timetable - there was some discussion on another thread a few days ago where I quoted papers that say some 40% of patients still require pred after more than 5 years. We find that 4 to 5 years is a more realistic expectation than the up to 2 years that in fact only about a third of patients achieve. There have been posts recently from several people who have finally got off pred - all well over 5 years and a couple over 10 years.
If you have all-over muscle pain, the chances are that you have tapered to below the thing you are really seeking: the lowest effective dose. You say you are at 2mg - what was the dose at which you last felt good? That is the dose you should be at, not forcing a reduction come what may. You will get lower, just not yet.
You can try hydroxychloroquin, one person on the forum who does not tolerate pred has used it and it works well for them but most people find it does nothing for them and there is no good evidence of its successful use in PMR. Nothing replaces pred - if it did, it would be used instead of pred. If you do decide to try it, make sure you have an eye examination beforehand and regular checks at the very least every year. HCQ may have few adverse effects but there is a very real risk of loss of vision if you develop one particular one.
Hi PMRpro
Thank you again for your response. I really appreciate your amazing degree of knowledge about PMR and a lot of what you have shared with me I can use in future consultations with my rheumatologist. I do actually understand that the Prednisone does not cure the PMR it fights the inflammation caused by the PMR. The confusing thing is that since starting the Prednisone my bloodwork shows my inflammation markers are now within normal range so why do the symptoms of the PMR seem to recur as you taper to a lower dose of the Prednisone even though my blood is checked monthly and the inflammation numbers have not risen?
Because there must be enough inflammation present for long enough to trigger the liver to produce the proteins in enough quantity to register. They often lag behind the increase in symptoms for quite some time - I have known of it taking up to 6 months for markers to start rising.
In addition, your markers being "within normal range" doesn't mean your markers aren't raised for YOU. Many doctors think that the normal range is applicable to each individual patient - it isn't. The normal range is the range that covers 95% of a very large population of nominally healthy patients, 10,000 results are commonly collected, each patient having their own personal "normal". My normal ESR is low single figures, 4 or 5, so when it rumbled along at 16-18 for weeks during a massive flare, nobody connected it to PMR.
I was on hydroxychloroquinone (plaquinel) for 2 years along with Pred. I had no ill effects from it. You do need to have your eyes monitored regularly for eye side effects. I wasn’t sure it was helping, so stopped it. But then developed GCA so in hindsight I think it was helping. PMR PRO is right tho, the illness does not magically stop at 2 years. I was in my 5 th year when started Plaquinel.
Thank you PMR2011!
Hello fellow Canadian 🇨🇦
PMRPro has explained how PMR presents and related treatment goals. I would concur that it is likely that 2mg pred is too low of a dose hence your symptoms (sore muscles).
I’ve read from many folks on this forum that their rheumatologists want them off pred asap and will prescribe steroid sparers to this end (even when patients are at a low dose of pred). A simple increase in pred to the dose where you last had little pain might achieve positive results (as opposed to on-boarding another medication that may have side effects of their own).
I was stuck at 9mg of pred for 2 years so reluctantly tried Methotrexate. Unlike yourself (and others), I’ve had no side effects and I’ve been able to taper down my pred dose, albeit slow. It’s taken me 6 years to get down to 5mg (almost).
All this to say despite having the same condition (PMR), our tapering journeys will be different, we will respond to medications differently, and when/if we go into remission will vary.
2mg is a low dose…so is 3, 4, or 5mg, which may indeed provide you with much needed relief. Wishing you all the best as you navigate at lower doses.
Thank you so much again I am learning as I go and these insights really help!
I have been taking Hydroxychloroquine on recommendation from my rheumatologist. She prescribed 200 mg but I’ve been breaking the pills in half to take 100 mg daily, just for the last 5 months. I’ve had PMR for just over 2 years, and have been comfortable reducing to 3.25 mg of pred and just yesterday dropped to 3 mg. I don’t know whether the hydroxy is making that possible or if I’m lucky or if there’s a flare well hidden in the weeds ahead.
So far so good, but of course that’s the same thing I say about my plan to live forever 🤣
Hi MikeVanBC
Thank you so much for this response I actually did the same as you and lowered my dose to 100mg shortly after starting it. I am now also down to 3mg Prednisone and am just coming up up to 2yrs. since my diagnosis. Thanks so much for getting back to me it really helps to get other peoples opinions when you are second guessing where you are at in the progression of hoping to hit remission one day👍
It is wonderful and encouraging to hear of your progress. I have no pains so far, but still often have these weird jelly legs. I’m not sure if that’s caused by PMR, prednisone or adrenals, but my legs have felt different for most of the last 2 years!
There are an awful lot of people who would say the same!!!
Thanks for the comment Pro. Is there any clear explanation on Jelly Legs? Are they caused by anything specific, and do legs ever return to fully normal? Or is it possible this is some kind of nerve damage from PMR or medication that makes the legs feel this way for an extended period or forever? I initially assumed my legs would feel more normal by the time I got below 5mg of pred, but even at 3 they usually feel like marshmallows.
Honestly don't know. The average doctor will say it is myopathy due to pred. There must be a degree of deconditioning even when you continue with the exercise you can manage. I do know a couple of people who have also developed a form of neuropathy, also probably autoimmune. I did have myopathy when I was on methyl pred but I can't say I can recognise the marshmallow feeling!
I also had that issue of myopathy while on prednisone, but after tapering to zero, it took about 2-3 months for those “jelly legs” to disappear completely. I have had two flairs since getting to zero, but a week or two on 5mg took care of that. Now I just use 1-2 mg occasionally when I start getting that muscle soreness. Is the PMR gone……def not, but I just manage it the best way possible for me. If I try to ignore it and let it go, then it’s difficult to get a grip on again. So my rheumatologist has agreed to let me use 1-2mg as needed instead of staying on it full time as a maintenance dose. So far I have been off prednisone more than I’m on it.
I am re-posting this from my month-old reply to a similar request:
Here’s my personal, PMR treatment story of transitioning from prednisone to hydroxychloroquine (successful so far).
In August 2022, at age 67, I awoke to acutely painful, joint-inflammation stiffness in shoulders, hips, and lower back. My rheumatologist diagnosed PMR and prescribed immediately-effective, 20 mg daily prednisone. In subsequent months, we gradually tapered to an effective plateau of 10 mg daily prednisone.
In Spring 2023, attempts to further taper my prednisone repeatedly failed (aforementioned symptoms returned). At the same time, I increasingly worried about prednisone’s relatively severe side-effects, especially in the long-term. So, I enthusiastically requested a switch to a different prescription medication to treat my PMR.
In June 2023, while still on the 10 mg daily prednisone, I began an added prescription of 400 mg daily hydroxychloroquine, which is known for significantly less side-effects. Because hydroxychloroquine needs up to 12 weeks to be fully effective, there was a overlap of both medications at their aforementioned doses for two months.
Subsequently, the hydroxychloroquine remained at 400 mg daily, but the prednisone was gradually reduced to the following doses: 5.0 mg daily in early August 2023; then 2.5 mg daily in October 2023; then completely stopped in late November 2023.
I have experienced no PMR symptoms since my switch from prednisone to hydroxychloroquine. I remain at 400 mg daily hydroxychloroquine now. So far, I have noticed absolutely no side-effects.
My rheumatologist sees hydroxychloroquine as a relatively safe, “maintenance” medication for me now. He predicts I will remain at this 400-mg daily dose for one or two years more, at which time we will gradually try to taper off completely.
Along my way, I have found it extremely important to learn to discern the difference between my PMR pain and other muscular-skeletal pain, such as that resulting from age-typical osteoarthritis in various joints, and tendonitis in a various areas. I found an excellent physical therapist and an excellent chiropractor to help me with those non-PMR conditions. Otherwise, the mix of different pain tended to “muddy the water,” making it more difficult to specifically assess and treat my PMR with clarity.
In addition, my ambitious development of drug-free, stress-reduction ability has helped me add less emotional suffering to my intermittent physical pain. I seek to further hone this ability as a valuable, long-term investment.
Steve4444
You just hit the nail on the head!! As you go through each day the pain or specific aches vary greatly. I am pretty active and love to garden, we are in a new home and have multiple little reno projects going and I have two little grandkids that I hang out with a lot. Sometimes I will have an almost pain free day even though I have been busy and a couple days later I am so sore that everything hurts. How can we tell if our PMR is flaring or all is well and we should continue tapering the prednisone when you are literally a different person from day to day?
In my case, the schedule of the gradual, prednisone-tapering was strictly set by my rheumatologist, who prescribed blood work every six weeks, specifically checking sedimentation rate and C-Reactive Protein as a possible indication of whether the PMR was returning. There was a period during the tapering when I began to consistently awake around 4 a.m. with inability to return to sleep due to severe soreness in both shoulders. I feared my PMR was back, but at my next rheumatologist visit, he cited the normal levels of my recent blood test, and carefully examined my shoulders, and listened to my report of pain, and then he diagnosed rotator cuff tendonitis. That inspired me to buy a shoulder brace that allows for an inserted gel-ice pack. My new routine now is to ice my shoulders after strength exercises, and during my morning coffee (because I upset my shoulders by my side-sleep posture). Intermittent shoulder pain is just about gone now. So, in summary, the prednisone amount was never my decision, and I partnered with my physician to gauge whether the pain was due to PMR or something else.
Hydroxychloroquine treatment for PMR?
Could Hydroxychloroquine side effects decrease absorption of Prednisone?
Prednisone and hydroxychloroquine together for PMR?
Rheumatologist Visit: take Hydroxychloroquine and PMR isn't a vasculitis
