Longtimer

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.....

Linny3 in reply to Longtimer

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.

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Longtimer in reply to Linny3

I know how you feel, am very often the same.....wish I had the answers for us....

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piglette

Have you tried reducing say half a mg a month?

Linny3 in reply to piglette

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.

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PMRproAmbassador in reply to Linny3

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?

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Linny3 in reply to PMRpro

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.

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PMRproAmbassador in reply to Linny3

Plaquenil won't help that!

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Linny3 in reply to PMRpro

Nor will the prednisone. I can't take any of the meds for fibro.

The plaquenil is to help taper off the Rayos. It will also help with the little arthritis in my back.

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piglette in reply to Linny3

As PMRPro says Rayos comes in 5mg 2mg and 1mg tablets and should not be cut. Are you taking just Rayos?

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Linny3 in reply to piglette

I take regular prednisone for when i need 1/2mg.

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piglette in reply to Linny3

Ah that makes sense. I was told not to mix normal and Rayos together, were you?

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Linny3 in reply to piglette

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.

Thanks

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piglette in reply to Linny3

It would be interesting to know. Does it say on the pack?

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Linny3 in reply to piglette

No there aren't any directions on the bottle or paperwork

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Linny3 in reply to Linny3

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,

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PMRproAmbassador in reply to Linny3

Yes, I've been on it for over 5 years - I think it is great!

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PMRproAmbassador in reply to Linny3

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.

But whatever works.

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Linny3 in reply to PMRpro

Actually, I just started taking 6mg at night of rayos and then 5&1/2-6 mg of reg prednisone in the morning. Seems to be working.

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forwardmotion

Hi Linny,

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.

Best always, forward motion 🙏

Linny3 in reply to forwardmotion

Thanks for the suggestion. I looked up Actemera and it scares me more than the plaquenil.

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forwardmotion in reply to Linny3

I decided to just stick with prednisone and slow taper. It’s almost three years now and I am at 4.5 and feeling pretty good.

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Linny3 in reply to forwardmotion

Were you on 10mg. or above for very long?

I now have fractures and that is very very scary.

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forwardmotion

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.

carolpatriarco01

I feel so badly for you and understand your wanting to get down on the prednisone as I also have every bad side effect from the prednisone.

I'm having good results from methotrexate as a steroid sparing drug

it's rough the first month but then it's been fine with no bad effects now.

I've also started medical marijuana and have managed to go down on pred.

I started at 20 mg. 15 months ago and I'm now down to 7mg. I take the mix of cbd

Oil and thc in a capsule just before I go to bed so I escape the high feeling while sleeping. I sleep great and feel good...

Or as good as can be expected with PMR.

Just thought I'd put out to you and everyone else on this forum my experience with steroid sparing.

Linny3

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.

olive2709

Hi this is how my rummy got me down i had GCA on pref for 42months

Gather you are on 15at the mom use calender months

15 for 1 month

15/14 Alternate days for 1month

14 for 1month

14/13 Alternate days for 1month

13for 1month

Just carry on my guy got me to stay on same dose form

November to March saying ,winter not the time to fiddle with dose, are you under GP or rummy if GP get referred

gazman152

Hi Linny3

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!

I hope my journey helps you with your decision

Regards

Gary

Linny3

Thank you for responding. Yes it does help to know how others have fared on this drug.

Good luck, happy tapering.