I was wondering if anyone has tried plaquenil as a steroid sparing agent?
I finally agreed to take it. I was diagnosed with pmr 22 months ago. Started prednisone at 20mg. Tapered to 15mg and have fluctuated up and down going as low as 6mg only to keep flaring. Have tried all year on the slow taper but can't get below 11mg-12mg. Dr. has wanted me at 7.5mg for about 6 months but I can't seem to do it. Until now , I have said no to the new drug. However, the side effects from the prednisone are really getting to be too much. You name the side effect and I experience it. I have started taking Rayos and that is giving me mouth sores and my hair is falling out worse than before.
So, I was wondering if anyone has any experience with this drug and if it worked for them?
Thanks so much for any input.
Have the best PMR day possible.
Lin
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Linny3
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No I haven't tried this drug.....but you are lowering too quickly...and it's worrying that you quote your doctor wants you down to7.5 for six months.......well, none of us can do exactly as our doctor wants or ideally what we want.....me included. Like you I have all the side affects, and have had PMR a long time compared to you. PMR takes as long as it takes...we are different.....
Thanks for the reply. I do understand that it will take as long as it takes. I told my dr. 7.5 was not going to happen and stayed on a slow taper all year. I am not sure how much more I can take of all the side effects when there is no end in site.
Yes that is how I have been tapering. When I get to 10.5mg. all the pain comes back. I go back up to where the pain eases, usually 11-11.5mg and stay there for a few weeks and try again.
How? Rayos only comes in 1mg multiples - and it must not be cut. But mouth ulcers are not a typical pred side effect, they belong with methotrexate and maybe you need some extra folic acid to get that fully out of your system. Is your doctor sure it is "just" PMR?
I am taking folic acid, maybe I will up it a little. I am also using the regular prednisone for the times I need 1/2mg. Dr. thinks the fibromyalgia is flaring.
No one every said one way or the other. I figured they are both prednisone with one being timed release the other not; sooo I figure it was ok. I guess I should ask.
RAYOS is a delayed-release prednisone tablet. It consists of a prednisone-containing core tablet in an inactive shell, which delays the onset of in vitro drug dissolution by approximately 4 hours. Each tablet contains 1 mg, 2 mg, or 5 mg of prednisone,
If it works that's fine - but if you take them at the same time then you will have a tiny amount of pred which probably isn't enough to do anything in the blood within a couple of hours and then a big boost about 5-6 hours later. Better might be taking the Rayos at night as usual and the other tiddly bit in the early morning.
I was diagnosed with GCA January 2016 and started on 40 mg prednisone. My first Rheumatology appointment was in April 2016 and he immediately prescribed Plaquenil. I took one that night and felt very poorly. The next day I did a lot of research and could not find any research that this drug was helpful with PMR/GCA and the side effects can be pretty hard. It is used for malaria, lupus and RA. In those diseases it is helpful for joint and muscle pain. Actemra would be a better choice because it is known to interrupt the inflammation pathway in GCA.
Anyway, I never took another Plaquenil and did not return to that doctor which made my GP angry and we parted ways.
One other thing, I was not told but found out from researching that this drug can affect your retina so you should get a baseline eye exam before starting it.
It took me about 9 months to get to 10. It’s been slow going since then. I do understand the worry about fractures and I’m sure that is why your doc is worried. We are all worried about our bones.
Thank you for your response. I have been on the methotrexate given by a daily shot. I did not have a lot of luck with it. I was on it for 14 months. The Side effects just got to be too bad and since I wasn't seeing much help I chose to go off of it. I have been trying the cbd oil with a small amount of pain relief. Can't get the other in our area.
I live in Australia and have had PMR for 22 months and managed to come off Prednisone at the end of August. No real pain with only small amount of previous symtoms showing up from time to time.
My treatment of the period consisted of Prednisone starting at 20 mg/day and dropping over time, 200mg/day of Plaquenil and 20mg Methotrexate per week along with a stomach pump inhibitor- Pariet 20 mg /day. My treatment seems a different regime to the UK!
I stopped Plaquenil approx 3 weeks ago and aches and pains and stiffness are returning. So it seems the Plaquenil was helping me a fair bit.
My first day back on Plaquenil today and we will see what happens over the next 2-3 weeks.
According to my Rheumy Plaquenil can take upto 3 months to be effective.
I believe the Plaquenil has affected my skin (dry patches and some small pigmentation spots) but feel its worth putting up with.
I've kept my eyes tested with no deleterious effects to date.
I also experience some difficulty reducing Prednisone from 7 to 5 even though I was on Plaquenil but was able to get it done without too much trouble- No Flares!
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