Question about Plaquenil (hydroxychloroquine)

Bones, joints and muscles
1

Hi all,  I saw my Rhuemy last week and he is concerned about my being up to 9mg of pred  for the past 5 months (from 4mg). I've been on pred for 28 months. Starting decrease to 8mg using DSNS method but notice the difference. It has been a week and it's not getting worse so I think it is withdrawl pain, not flare. Will try week two and see what happens.

My Rhuemy said he'd like me to try Plaquenil along with pred to see if I could decrease easier/faster.

Does anyone have experience with this and if so what dose of pred and plaquenil did you take? Any input would be much appreciated.

Thanks friends😊

Diana🌸

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Diana, you may have seen my response to a recent question about taking Cybalta.  I'm not a fan of add-on drugs without proven facts on what the medics claim they will do for folks with PMR. 

Have you considered trying to reduce by .5 drops on the DSNS reduction plan?

 

3

Hi Diana,

There is a fairly recent study (2011) by the American College of Rheumatology regarding hydroxychloroquine - the Forum won't let me give you the email link but if you are interested - Google - Arthritis & Rheumatism, Volume 63, November 2011 Abstract Supplement - Abstracts of the American College of 

Rheumatology/Association of Rheumatology Health Professionals 

Annual Scientific Meeting, Chicago, Illinois November 4-9, 2011. - Clinical Profile And Therapeutic Approaches In Polymyalgia Rheumatica: Is Hydroxychloroquine A Useful Steroid-Sparing Agent In The Management Of The Disease?

It reviews several DMARDs with a several hundred male and female patients - but as usual there is no positive answer to whether we should use the drugs or not - the answer is "Let's do lots more testing !!"

We are all interested in DMARDs  - like you I am struggling around 4-5 mg of pred - up and down with minor flares - doing it very slowly - and I'm also taking Methotrexate. I seem to be stuck at the 4-5 mg level and the pain and fatigue won't go away.

Anyway - let's see what everyone has to say about this.

Thanks for bringing it up.

All the best,

Dave

 

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Hi Jean,

In the past I have reduced by .5mg once I get to 8mg but that's a good idea since I seem more sensitive to reducing now.  Will do that👍.

Will check the discussion on Cymbalta.  

Thanks,  Diana

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Hi Dave,

Thanks for the info. Will look that up.  

My Rhuemy wanted me to try methotrexate but he said NO ALCOHOL!!

We're in process of planning a trip to Italy so that just won't work🍷😉 so he suggested the plaquenil.  

I told him I would consider it if my attempts to decrease didn't go well.  I really don't want to take any more meds.  I know if it was a magic solution everyone would be doing it.

Can't wait to get back to 4mg. I felt great. Maybe you need a bit higher if you're in pain?

Hope you find your happy dose soon!

 

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 Eileen's response on the Cymbalta chain is thought provoking on many levels. biggrin

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Do you remember the subject line. I can't find it😋

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hi David,

Could you send me a PM with the link. I went through what I think was the whole index on the report and couldn't find it.

I seem to be having brain issues today!!

Thinks

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Hi Diana,

I was on  hydroxychloroquine Sulfate 200 mg tab, 1 x day. For about 6 months.

It did nothing to help with the PMR, and it had a very significant side effect for me of increased visual photosensivity. Had to wear sunglasses in the house. When the rheumy found out about the photosensivity, she stopped the plaquinil. Took a month for photosensivity to return to normal.

It was on the recommendation of another rheumy, (well respected doc and institution) who suspected that I might have late onset rheumatoid Arthritis (LORA), due to the involvement of my hands, wrists, feet, and ankles. It does not appear that I have LORA, as my  joint degredation is osteo, not rheumatoid.

I seem to have read that plaquinil is NOT effective on PMR alone. And for me, it had a very significant side effect.

I think the half life of pred is 12 hours, but the half life of plaquinil is a month or two.

So, I do not recommend it for me. And I add 2 data points for you. ( my recollection about some article which I'll look for, and my personal experience with the drug.

Good luck and have a nice trip.  

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Thanks Dan for your info.  I don't see much point in taking something if it's not going to help or worse, add more side affects.

Some articles say yea and others nay that's why I thought I'll trust personal experience over "research"??

We may come back via Florida so may see you😊.

Diana🌸

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The subject was Cymbalta - by judytal

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Hi, I have been started on plaquenil around a month ago (also on 7mg pred) and so far have had no side effects. I got my eyes checked out before starting. I am due to reduce the steroids to 6mg this week so will wait to see what happens. btw I have GCA not PMR, so the muscle pains are not the worst problem--I will have to check bloods to see how things are going. I cant find anything in the literature to indicate any benefit of plaquenil in GCA, but my specialist clearly likes it and if it has no side effects, I dont mind trying it.

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Thanks Rose,

Keep us posted on how you're doing.

Hugs, Diana

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Hello Diana

I haven't had experience of Hydoxychloroquine, or in fact any other DMARD.  It is just another drug that is sometimes offered as a steroid-sparing agent when doctors feel that patients aren't reducing their Pred fast enoug (or as fast as they would like them to!!).  However, as you have managed to reduce down as low as 4mg in the past, then I would have thought you would be able to do so again in the not too distant future. Still being around on doses around the 9mg mark after periods around 28 months probably applies to many people.  Are you doing the slow reduction by 1mg or half a mg?  If the former, then perhaps you could give the latter a try?  It is sounding promising that after a week on the present taper towards 8mg your symptoms aren't worsening.

Hydroxychloroquine is usually prescribed for rheumatoid arthritis and lupus, and often in combination with Methotrexate.  If you do decide to try it, do bear in mind that it can take 3 months or more to notice any benefit.  Apparently there is a rare risk of damage to the retina, so it is advisable to have an eye check with an optician once a year and tell them that you're taking hydroxychoroquine.

Difficult one, Diana - you can only try it and see.

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Hi Mrs. O,

Thanks for the info.  My Dr. did mention it would take about 3 mths to be of benefit. He also told me that you have to take it with at least a full glass of water and remain in an upright position for about 1/2hr to allow the pill to move right into your stomach. He said something in the pill makes it "sticky" and if it settles into your esophagus it can eat a hole through it.  That was really pretty much enough for me to say forget it but I thought I would see what other people had to say on the forum.

I will not be taking this drug and will continue my decreases at a nice slow pace. Will try the 1/2mg and steady as she goes.

hugs, Diana🌸

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You can post a link quite often - it will be held for moderation but if it is a pukka link it will be passed for general viewing and allowed through. If the moderator is on holiday it will take longer - just be patient.

4-5mg may be your long term maintenance dose. It is defintiely mine. You are NOT reducing relentlessly to zero - you are looking for the lowest dose that gives the same result as your starting dose. That is a very different thing. My rheumatology-trained GP is perfectly happy with me at 5mg. Anything under about 7.5mg is a physiological dose (what the body would make anyway) and associated with few side-effects and most experts are happy about a lower dose for long term.

So far there are no proven so-called "steroid-sparing" drugs. None of them work alone for PMR so they themselves won't do anything. They change the way the body metabolises pred so you may get away with a lower dose having the same effect. But you are adding in another drug with its own side-effects - and using a drug in combo with others has more side effects than it being used on its own. I believe that when they work it is because the patient either didn't have PMR but LORA or they had PMR plus LORA which also happens.

Some people have found they got to a lower dose OK - but then had a flare, sometimes a big one. PMR probably waxes and wanes - so you can't know if maybe you would have been able to reduce anyway during a quiescent period. That's why you need to keep trying a small reduction whenever it works.

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Hi Diana - as Eileen mentioned I'll try sending the link and see what happens.

http://www.blackwellpublishing.com/acrmeeting/abstract.asp?MeetingID=781&id=96259

Dave

 

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Diana, the potential "risk" of damage to the esophagus would put me off too!  Would far prefer to continue doing battle with the Pred which has been tried and tested now for so many years.  Many people I know have given the different DMARDs a try - a few have found some initial success in lowering their steroid doses, but most have ended up being back solely on Pred again.  Here's hoping you'll have more success if you do decide to try the half mg route - at the same time helping it along with a not too hectic lifestyle!  

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I've added the link to the discussion below if the correct one.

https://patient.info/forums/discuss/cymbalta-450091

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I've never heard of that - has he maybe got it mixed up with bisphosphonates? Plaquenil causes gastric irritation in some people but there is no warning about taking it and staying upright that I can find. It does cause sun sensitivity and can damage the retina and those are affected must stop taking it.