What is hydroxy?

[LemonZest11]

Someone recently wrote on the mayo site that while taking pred, they also took 200mg hydroxy something because their rheumatologist said it would help to come off pred. 3 years after nil pred, they still take the hydroxy because the rheumy said it would prevent a relapse of pmr. Any clues?

[Hidden]

It’ll be hydroxychloroquine

See the link below

nhs.uk/conditions/rheumatoi...

[LemonZest11 in reply to Hidden]

Thanks, that's it. I will check out the link.

[Hidden in reply to LemonZest11]

Try this as well.

bnf.nice.org.uk/drug/hydrox...

[LemonZest11 in reply to Hidden]

Thanks but can't access that outside the UK.

[alvertta in reply to Hidden]

Only available to UK.

[LemonZest11 in reply to Hidden]

Nothing specific there, but thanks.

[PMRpro Ambassador]

As MrsN said, hydroxycholoquine, but there is no real evidence it works in PMR in general.

[LemonZest11 in reply to PMRpro]

So not a lot of info on it as a prevention to relapse?

[PMRpro Ambassador in reply to LemonZest11]

None at all in that respect. There is only a single poorly powered study about its use as a steroid sparer in PMR I think,

And since maybe 10% of patients get a real second episode of PMR it would take a massive study over many years to show it did - meaning that the "No to treat" figure wouldn't be very impressive. Most relapses/flares are due to reducing too fast or too far - we know the way to deal with that!

[fmkkm]

Hi there,

Sounds like plaquenil and the very first rheumatologist I went to gave it to me for GCA. I only took one dose and felt horrible with a great weight on my chest. I never took another just stuck with the prednisone. This drug has some very serious side effects which include eye problems.

[Hidden in reply to fmkkm]

I’ve always Noted that issue, incase any bright spark suggested l change over to it!

[fmkkm]

Here is one study that showed Hydroxychloroquine did not improve outcome for GCA patients.

acr.confex.com/acr/2009/web...

[pmrgcavictim]

I was prescribed Hydroxychloroquine about 8 years ago for back pain. Two and a half weeks later, I thought this stuff is working great. At 3 weeks from starting on it, my vision became slightly blurry, after another week it was really really terrible. I wondered if I would ever see properly again. Hydroxychloroquine stopped, and my vision returned to normal after about 4 months. It is now on my medical records as a no no. I've had PMR for 18 months, and GCA for 17 months, so keeping an eye on my eyes anyway. Trevor.

[Mjhollywood1]

I start taking hydroxychioroquine about 3 months ago. Off predsone 3 days ago after 3 years. So far doing ok. I am gluten free. Which I know works !!! But I let you know how the. ( predsone) free works. You have crazy dreams on this stuff !!! I don’t hear many people trying this for p m r but I try anything !!

[LemonZest11 in reply to Mjhollywood1]

Thank you Mjhollywood1, I will wait to hear how you go.

[7Louise]

Hello LemonZest11

I am new to the forum, and grateful for it!

I recently had a relapse of PMR, brutal while on holiday to the uk, but prior to that, I weaned myself off prednisone with adding B5 tablets to my morning smoothie, it was amazing and I was symptom free and off prednisone for 10 months. ( a move and renovating and the flight stressed my body and PMR reared it’s head , duh 🥴 but when I get down to say 2 mg , couple months from now, I will start changing it with B5 again) worked for me...

[LemonZest11 in reply to 7Louise]

That is really interesting 7Louis, did you come up with that yourself? What dose pred are you on now? Sounds like you taper pretty quickly too. How much B5 and do you drop the pred completely at 2mgs? Louis the fly? Very funny ... you must be an Aussie!