Plaquenil for treating PMR

[BuddyBearF]

I have a follow-up rheumy appt where we will discuss adding Plaquenil. I am trying to become as informed as possible so I can ask the right questions and make the best decision. My PMR symptoms started Nov 2021. I was diagnosed with PMR June 2022. Started on 15mg Pred for 1 week then down to 10mg Pred. I do still have some pain/discomfort in hips/thighs/shoulders, but it is manageable - not nearly as bad as it was before I started Pred. My Dr. feels PMR is never going away, based on my lab results, and wants to start Plaquenil as a long-term medicine. Is anyone taking this drug? What has been your experience? What was the purpose in adding it?

[piglette]

Going from 15mg to 10mg is quite a drop. Normally people start in 15mg check they feel OK over three to four weeks then drop up to 2.5mg. How was the pain when you first took the 15mg was it better than it is now? I do suspect that you may have reduced too fast.

There has been some discussion on Hydroxychloroquine (Plaquenil) on this board. healthunlocked.com/pmrgcauk...

[BuddyBearF in reply to piglette]

Thank you. The pain before Pred was terrible - a 5-7 on 10 point pain scale with Tylenol 8hr and Advil - taking both all the time. I have been able to stop the OTC pain meds and pain is now around a 2 most days. It took about 5 days for the 15mg to provide pain relief. The pain got worse for a few days when I went to 10mg, but it went back down eventually. I did have less pain at 15mg than 10mg but the pain now is definitely manageable. When the symptoms first started the pain was so bad I could hardly move. By the time I saw the Rheumy in June I could at least move on a limited basis but could not raise my arms and sitting (rising from sitting), going up stairs, walking were all really hard.

[piglette in reply to BuddyBearF]

You should not have more pain at 10mg than 15mg on going. You want your life to be as bearable as possible. Steroids are a wonder drug.

[DorsetLady PMRGCAuk volunteer]

Agree with piglette -too fast a taper-and one week at initial dose is hardly long enough.

Not sure your doctor can say PMR is never going away - but if you had been tapered correctly you would be feeling a lot better and wouldn’t need to add on another drug.

Just as a matter of interest what are your lab results?

PMR is normally a self limiting illness -but no one can say how long.. anything from 2-6 years.

You might like to read this then at least you’ll have a better understanding of your illness -

healthunlocked.com/pmrgcauk...

[BuddyBearF in reply to DorsetLady]

Thank you. Which lab results? There are so many and lots of flags...

[DorsetLady PMRGCAuk volunteer in reply to BuddyBearF]

ESR & CRP - inflammation markers that are used to diagnose/monitor PMR/GCA

[BuddyBearF in reply to DorsetLady]

I honestly don't know what any of this means...

AHG Sed Rate (ESR) is at 9mm/hr (in March it was 64 and in May it was 31)

CRP is 1.1 mg/dL - H (standard range for this is different than tests done earlier this year where CRP was 18 in March then 10 in May with standard range of 0-10mg/L)

These are all the other flags: AHG Rheumatoid factor 3: IgG 28 u/ml - H

AHG CBC Absolute Eosinophils: .79 k/uL - H

AHG CBC Eosinophils: 11.7 % - H

AHG CBC MCHC: 29.8 g/dL - L

AHG CBC RDW: 15.2 % - H

AHG CBC RDW-SD: 54.4 fL - H

eGFR: 88.38 mL/min

[DorsetLady PMRGCAuk volunteer in reply to BuddyBearF]

The ESR & CRP have reduced whilst been on steroids , but that is to be expected. All it shows is they are doing their job -decreasing the inflammation levels, it DOES NOT mean you haven’t got PMR. If anything it confirms you have - and the medication is working.

In reply to your question further down re tapering - you shouldn’t be reducing if you still have symptoms/pain. That shows current level is probably not quite enough and you need to stay on it a little while longer.

[PMRpro Ambassador in reply to BuddyBearF]

You could ask us - especially the flags. It is unusual to have many flagged.

[PMRpro Ambassador]

On here it is often called by the substance name hydroxychloroquine rather than the brand name.Look at the related posts and you will get links to other threads about it.

Your doctor needs to learn about managing PMR properly because their attmpt so far will never really deal with your symptoms properly. Pred is a management strategy not a cure and first you put the patient on at least 15mg for 3-4 weeks until the symptoms are under control, Then you taper SLOWLY to 12.5 for a few weeks to get to 10mg in small steps. For many patients 2.5mg at a time is too fast - 1mg steps are better for them. PMR symptoms only "go away" when you are on enough pred and you aren't. OTC painkillers do nothing for PMR pain and are riskier than long term pred.

You should stay at the 15mg until the pain and symptoms are stable and that is your guide to how you should feel as you taper - you should never feel worse at the end of a taper than you did at the start of it.

PMR is a chronic illness - it lasts more than 2 years for about 2/3 of patients so if it only started in November and you were only diagnosed and given pred last month there is no way the doctor can say "it isn't going away".

Maybe your doctor could do with reading these:

rcpe.ac.uk/sites/default/fi...

rheumatology.org/Portals/0/...

There is one not particularly good study on the use of Plaquenil - claiming it as a wonder drug. It is in fact rarely used in PMR because mostly it doesn;t do a lot. There is one person on the forum for whom it works - I think he is the only one I have come across in over 12 years.

[HeronNS]

Definitely your doctor, unfortunately, does not understand PMR. Setting aside the flagged test results which may or may not be relevant to PMR (I know nothing but some on here have more medical knowledge), and going only by the CRP, you had a really good respnse to the pred apparently, as your CRP, although never very high, came down to a normal level. It is far too early to be considering adding another medication. I agree with the others who say your taper has been mismanaged. The difficulty often is a doctor is used to using pred short term in other illnesses, and if they don't understand the chronic nature of PMR they will expect a patient to react in a similar way. There's a reason why this forum community is so active; we are very often managing not only our illness and our medication, but also a doctor's mistaken beliefs about how we should be progressing!

Is this going to be the first time you meet with the rheumatologist? Referred by your primary care physician?

[HeronNS in reply to HeronNS]

By the way, do you mind sharing where you live, as there may be different advice offered depending what country you are in, different places having different procedures, etc.

[BuddyBearF in reply to HeronNS]

This will be my second appt. with highly recommended Rheumy. He tested for lots of things at the first appt (why all the lab results) and did hand x-rays to rule out RA, said sometimes RA disguises itself as PMR. But I really do have classic PMR symptoms and he felt that is what it is right away. GP who has background in Rheum also said it was PMR.

I live in US - GA. He told me at my first appt. that with PMR it's the rule of thirds with people who have it - 1/3 it goes away, 1/3 it does not, 1/3 it comes and goes. I am 53, so as he's thinking (based on previous lab results) that I'm in the 1/3 that will never go into remission and wants a "permanent" medicine that is not Pred.

It's very difficult to get into Rheumys in the US. My original appt with this Dr was March 2023 but a friend got me in last month. I have appt with different Rheumy in Nov that I've kept just in case I need a 2nd opinion. I was originally diagnosed with bilateral sciatica - 3 rounds of high dose steroids and epidurals on both sides. Epidurals did not help, but the steroids did - until I stopped taking them then the pain always came back.

Am I understanding correctly that the goal with the meds is just not pain relief, it's also to reduce the inflammation? If that's the case, I'm not understanding how Plaquenil can help with the inflammation - or the purpose of it really, unless it's to help with the pain. Right now, my pain is manageable. If I have a bad day I take 8hr Tylenol and feel much better. I would rather stay on the lower dose of Pred if the pain is manageable and not add another med.

Another question...how do you know when it's time to taper down? I had assumed it was when I had no pain, but would I start tapering down when I have mild pain/discomfort?

[HeronNS in reply to BuddyBearF]

My understanding is that plaquenil is used as what they call a "steroid sparer". Normally a steroid sparer would only be considered after some period of time (well over a year maybe more) and a patient has genuine difficulty tapering prednisone to a low dose even when they follow the best slow taper protocol. In this case a secondary drug can be tried to see if it will help ease some of the symptoms so the pred dose can be tapered further. Sometimes this is successful, sometimes not. And it is most unusual to consider using one when a patient has only been on pred for such a short time neither they nor the doctor know whether tapering will be successful.

It takes usually about two years to achieve a low maintenance dose of pred which continues to control symptoms. Some people it's faster, others take longer. The low dose needs to be enough to continue to control symptoms because inflammation which causes our pain is also causing damage to our tissues. It's not just comfort which is important here, it is actually controlling the level of inflammation. There is nothing much we can do about disease activity. Eventually for most people PMR goes into remission. But prednisone cannot hasten remission, nor can any of the standard steroid-sparers which are used with some patients. The only other medication which may help, and it has mixed reviews from those who have tried it for PMR (it's not approved for PMR yet in many places so not too much data yet) is tocilizumab, also called Actemra. At the moment this treatment is extremely expensive and usually used only for patients who are having a lot of problems with pred. It has been used for some years for RA and now for GCA (GCA requires a much higher dose of pred than PMR, so there is a good reason for using it).

Rule of thumb for tapering: no more than 10% of your dose. Your 5 mg drop was 30% and I assume you did it overnight, no gently introducing it over a few days or weeks. Have a look at our pinned posts, there is one which has some slow taper plans in it. In fact, take a gander at the FAQ post which links to numerous helpful and interesting posts. You'll a link to it just below your post starting this thread.

Here is how I started my pred journey just for comparison, and because it is a little different than what is usually described here: I'd been undiagnosed for well over a year. Started 15 mg for one month. Then tapered by 1 mg per week (this is the step that is different from what the others on here usually are told to do, and faster) with instructions to stop if symptoms reappeared. All my PMR symptoms were gone within a few days of starting pred. They reappeared when I got to 9, so I went back to 10 for a couple of weeks then started using a slow taper method. By the end of my first year on pred I was at 3 mg. This is considered good progress. I tapered initially by 1 mg a month, then gradually slowed down until I was tapering by half a mg every six weeks. The lower the slower. Going too fast, in too big steps leads to flares and actually to returning to higher doses and ending up taking more pred than a slow careful process provides.

As for PMR never going away. There are some of us here who now say, so what? We are managing our illness with the lowest dose of pred which still relieves our symptoms, and which gives us good quality of life. I've been taking pred since 2015, most of that time at a dose of 2 or 2.5. it is what it is, and I prefer this than adding more medications which also come with a suite of possible side effects. Pred is my only medication, barring the occasional otc painkiller for headache, or seasonal allergy med! As a 75-yr-old North American I think I'm doing well. No doctor has ever suggested anything wrong with my staying indefinitely on pred, but that is probably because my usual dose is so low. I do try to taper further from time to time, and go completely by how I feel, weighing the possibility of pred withdrawal rather than actual PMR symptoms as I taper, but have not been able to get successfully to zero yet. Sorry, this has turned into rather a long post.....

[cranberryt]

Planquenil is used more often for RA, and only occasionally as a steroid sparer for PMR. Your RA factor came in high so I am surprised they are saying you have PMR over RA.

As mentioned, if it’s PMR, you should be on 15-25mg prednisone for 4 weeks or until your labs return to normal. They should not be tapering so quickly!And you should only taper when bloods are normal and you are not in pain. If a taper results in return of pain after the initial adjustment in the first couple days, one should go back to the previous dose for another month before trying again. And then perhaps a smaller drop.

Planquenil is used for RA, not steroids. It takes 3 months to start working. They should do a chest xray prior to starting plaquenil. They should also follow your liver bloods regularly as one of the rarer side effects is liver damage.

My rheumy refused to treat me for PMR because I was under 50 so insisted on treating me for RA instead (My RA bloodwork was perfectly normal and xrays were always clear so we disagreed on this dx.). She wanted me off prednisone asap and when I refused methotrexate, we tried planquenil. I was only on it 2 months because my liver numbers rose sky high pretty quickly so I came off it before it even fully kicked in. It *may* have been helping somewhat as I did get down from 9mg to 7.5mg in the 2ish months I was on it but it’s really impossible to tell. I eventually fired my rheumy over irreconcilable differences and my PCP took over my care.

It sounds to me like they want to treat for RA and not PMR, and my guess is because you are so young, they don’t want you on long term steroids at a young age.

(For reference: I was dx at 48, had 80% improvement in 24 hours on 20mg. I just passed my 3 year anniversary of my dx and am now 51. I am at 2mg now. In the past year I have also been dx with celiac and colitis, My bloodwork is rising for the first time since it normalized. My PCP wants me to see the new rheumy in town to see if there is anything more we can do to get me off the 2mg, though I am perfectly happy staying at 2mg for life if necessary. However, I will see the new doc and see what he says.)