Hydroxychloroquine for PMR instead of prednisolone?
Posted , 10 users are following.
Came off prednisolone last November. Flared up again in January.
New Rhuematologist gave intramuscular Depo-Medrone, have now had another injection but relief only for 4 weeks this time. He has suggested, because I am fighting going back on Pred, Hydroxychloroquine.
My question is has anyone tried this?
Haven't been on the site for ages but it was my bible for 3 years.
DJ
0 likes, 29 replies
maureen_87112 D_J
Posted
Hi D J I haven't heard of the treatment you have been having although I am desperate to get off steroids which I have been taking for over two years. I have gained 2 stone in weight am feeling bloated and hungry most of the time. I have been on 20mg prednisone for the last two months but every time I start to reduce the dose my aches and pains come back with a vengender!
EileenH maureen_87112
Posted
How are you reducing? If you are trying to reduce in big steps it won't work. Have you seen this:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
It has helped many patients reduce without flares or steroid withdrawal pain - which are so similar you don't know which is which.
And cutting carbs drastically helps both the hunger pangs and weight loss. Pred changes the way you process carbohydrate and your blood sugar swings about causing the hunger. More insulin is produced - and leads to fat being deposited in certain places, around your middle, on the back of your neck and round your face.I lost 36 lbs by cutting carbs - when I eat carbs I gain weight stop eating all except non-root veggies and salads and I can lose weight.
maureen_87112 EileenH
Posted
D_J maureen_87112
Posted
I just hated the moon face but worked hard at cutting carbs and taking exercise.
Chin up!
DJ
ros85177 D_J
Posted
Hi There
I have been on hydroxychloroquine on the advice of the rheumatologist for 15 months. She gave it to be because she reckoned that it was "generally good for the arteries". I have GCA and started 60mg pred in Feb 2014 and came off it in June this year. The hydroxychloroquine is, as far as I can see purely as a sort of possible preventative. I have not had any side effects and have been to the optician before and since starting it. I still dont know if it is doing any good or what her ideas are of continuing it...indefinitely or what!! As far as I can see there is no evidence for itts use in PMR/GCA. In my case, it was given when I had a brain MRI which showed small white dots possibly blood vessel damage, but without follow up scans I cant see how it can be monitored. All very strange. She said that if I was unhappy about taking it ...I should just stop....which doesnt give me any confidence in its supposed usefulness. As of now, I am just doing as I am told!!!!
EileenH ros85177
Posted
I can only assume it is based on the work from which I took this quote:
"Hydroxychloroquine (Plaquenil®
, especially at the higher standard dose of 400 mg per day, independently decreases the risk of cardiovascular morbidity in people with rheumatoid arthritis, according to new research findings presented this week at the American College of Rheumatology Annual Meeting in Boston."
I'd give you the link but it will go for moderation - but copy and past this quote into your search engine and you'll find it.
Hydroychloroquine gets a very brief mention in the latest PMR guidelines but only to say it doesn't appear to do much as a steroid sparer...
Some white dots are perfectly normal on an MRI scan - most of them are blood vessels but it is also a perfectly normal part of aging that they increase. I had an MRI done several years ago and was told that there were very few such signs for someone of my age.
I suppose on the basis of that paper it can't do much harm if you have no side effects - but do keep having your eyes checked as I gather that is a primary concern when taking it.
D_J ros85177
Posted
Thanks for your reply.
Interesting hearing your view on Hydroxychloroquine and the reason you think you were put on it.
I know it has an effect on the retina after 5 years of taking and a scan before and after is a must.
It has no effect on my angle closure glaucoma which I checked when the drug was mentioned.
Reading the link EileenH sent I now think if i can't hack the symptoms I will have no alternative but to go back on pred.
Terrified of getting GCA well done you getting over it.
DJ
Sarac413 D_J
Posted
I am also taking hydroxychloroquine as well as prednisone. Rhumy said it will hopefully help me to get off of the prednisone. So far no difference but I reduced to 2.5 mgs in Aug from 5 mgs. It's been about 3 weeks and my hand, feet and hip pain is back with a vengeance! Calling rhumy tomorrow to see if I should go back to 5 mgs. So frustrating!! I was diagnosed in December with pmr and started at 20 mgs. I have been up and down twice now from 20 mgs to 10 to 7 to 5 to 2.5. I can never seem to get lower then 2.5 without the pain returning.
Anhaga Sarac413
Posted
FYI I started with 15 mg prednisone June 2015. I have taken no additional medications although I use some alternative strategies to help reduce cytokine activity. I am now, apparently successfully, at 3 mg with some optimism that I can reduce a little further before the end of the year.
Sarac413 Anhaga
Posted
EileenH Sarac413
Posted
There is no evidence hydroxychloroquine will help get you off pred in PMR/GCA. It is mentioned for that reason in the latest international guidelines.Only pred manages the symptoms, using both together MAY allow you to manage on a lower dose of pred - but it won't replace it.
Danrower EileenH
Posted
You recall we had similar PMR initiations. Hope you are approaching remission!
Dan
EileenH Danrower
Posted
Nah - had a flare! I'm fine though - back down to 10mg pred from 15mg in February.
I don't think there is any - not going by the statement in the 2015 recommendations for the management of PMR. About half way down this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find a link to this
2015 Recommendations for the Management of Polymyalgia Rheumatica - a EULAR/ACR collaboration
At the end of recommendation 7 it says:
"The group recognized that no recommendation can be made for the use of other non-biologic (ie, conventional synthetic and conventional targeted) DMARDs in PMR because of the lack of good evidence from PMR studies. Hydroxychloroquine was investigated by a single very low QoE retrospective study reporting no benefit regarding relapse rate."
This document was developed over a long period with at least 40 of the top experts in the field. If they don't think it works - why on earth should any other rheumatologist suggest to patients it will help get them get off pred? When it doesn't help - it is the patient who feels they have failed.