Hydroxocloroquinine

[bakingD]

Hi Everyone, am wondering if you have any info on the drug as my Rheumatologist wants to start me on it, as I am aware Pred only deals with the symptoms whilst you go through PMR whereas this drug actually treats the disease process.I have had several attempts at reducing red dose and back comes the pain and stiffness.

[PMRpro Ambassador]

Tell us a lot more about your attempts to reduce - time scale, doses and so on.

There is no evidence it helps reduce pred in PMR - only anecdotal reports from rheumies who think it works. But my rheumy thinks methotrexate is the thing and Prof Dasgupta in the UK swears by lefunomide. I tried methotrexate - never again!

If you can take it without side effects then any of them may be worth trying - but I did set the bar on the low side (didn't need to, for me it was awful very quickly). But if it were me - I'd be asking for testimonials from users. I am sceptical.

[bakingD in reply to PMRpro]

I started on 20 mg Pred back in June for a week,then 15mg for 5 days,then 10mg for 5 days,5mg for 5 days then stop and all my symptoms came back.Then tried 2 more attempts with much slower taper but still symptoms cane back /am currently on 4 ng Pred and really struggling needing Paracetamol and in tears most days!!

[PMRpro Ambassador in reply to bakingD]

I can't write what I wanted to say - I'd be banned!!!! Your doctor is a fool and needs to do some reading. Ignorance like that is inexcusable. Of COURSE your symptoms returned!

You need pred at 20mg for a month, at 15mg for a month and so on. PMR is a chronic condition with a median duration of just under 6 YEARS, not weeks. You don't need another drug, you need pred alone used properly.

rcpe.ac.uk/sites/default/fi...

is a basic approach which probably works fairly well - their flare rate is 1 in 5 instead of 3 in 5 - which must tell you something since they work over a period of at least 2 years.

Take the paper to your doctor. If they won't read it and take notice - you need another doctor.

Oh - I missed it first time round but plaquenil is a DMARD, a drug aimed at rheumatoid arthritis, PMR is a vasculitis, it affects blood vessels and not joints. Plaquenil will NOT work on the mechanism of the disease - what utter rubbish. If it did they would use it in PMR - they don't, pred is the mainstay of management. For a very good reason - it works, other things don't. No-one yet knows what the mechanism of PMR is...

[bakingD in reply to PMRpro]

thanks for the advice it makes sense that I have done a too fast tapering of Prednisolone

I did get a second opinion as I was sceptical and so have just had an MRI pelvis will wait for result then hopefully get bacon red at a proper dose and reduce at a proper slow rate!! thanks v much

[PMRpro Ambassador in reply to bakingD]

Are you in the UK? Where?

[bakingD in reply to PMRpro]

Am in the south of Uk near Guildford- was really fit until last June am 55 yrs old and feel like 95 at the moment!!

[PMRpro Ambassador in reply to bakingD]

Is private for one appointment an option? Is Chertsey get-at-able? If so you could try getting an NHS referral from your GP to a superb PMR guy there. But what you have a present is useless.

[bakingD in reply to PMRpro]

yes chertsey is gettable not that far away who in Chertsey should I see??

[PMRpro Ambassador in reply to bakingD]

Dr Rod Hughes comes highly recommended by everyone who has seen him. He listens, he thinks and if he isn't happy he investigates properly. He also usually adds a private patient to his NHS list if appropriate. Google Rod Hughes rheumatologist for details (and videos).

[bakingD in reply to PMRpro]

thank you so much for that - I am seeing a rheumatologist on wed with my MRI results and will see what he says but good to k now there is a good per consultant I can go to THANKS AGAIN

[Daisychain12 in reply to PMRpro]

PMRpro you’re saying plaquanil is not indicated for PMR at all??

[PMRpro Ambassador in reply to Daisychain12]

Except as a putative steroid sparer - but there is little evidence and it isn't recommended.

[Daisychain12 in reply to PMRpro]

What is putative please?

[PMRpro Ambassador in reply to Daisychain12]

"generally considered or reputed to be."

by some doctors at least...

[Daisychain12 in reply to PMRpro]

Do you have anything I can take to my gp to show this? He has been very good and has over ridden the rheumatologist regarding pred. But he still wants me to try plaquanil. I am reluctant and scared but I don’t know why. I think it’s because I’ve got a long history of gastric trouble. Gastroenterologist said I had worst case of ulcerated stomach and oesophagus he had ever seen. Also had helico bacto pylori.

[PMRpro Ambassador in reply to Daisychain12]

A common side effect is nausea and vomiting.

The only thing to hand is this:

rheumatology.org/Portals/0/...

where they comment on hydroxychloroquine/Plaquenil as having been found to do nothing in a single weak study. There is a reference but I haven't read it as I can't get at it.

[Daisychain12 in reply to PMRpro]

Thank you so much. I am very very grateful xxxx

[Longtimer]

Think my sister tried it for RA, but it didn`t suit her, and along with most DMARDS, they take a while to have an affect, so don`t expect a quick response like pred.......

[fmkkm]

Hi there,

I tried it once and felt like I’d been run over by a Mack truck. It is an anti malaria drug that can work with Rheumatoid arthritis. Ask your doctor for references showing studies where it has worked for PMR by treating the disease process. I don’t think they exist but would love to see them. If he/she can’t back up their claim that it modifies the PMR disease process then best to get a new doctor, that’s what I did, post haste.

[bakingD in reply to fmkkm]

thanks for the advice will ask Doctor!!

[PMRpro Ambassador in reply to fmkkm]

There is one "poorly powered study"...

[Daisychain12 in reply to PMRpro]

Oh dear. I am not very good at saying no to my gp because he tries so desperately to help me. I see it in his whole body language.

[PMRpro Ambassador in reply to Daisychain12]

Can your GP prescribe it? In the UK it is for specialist use only. I thought you said you were getting a second opinion? In which case I wouldn't change anything beforehand.

But I promise him - plaquenil does NOT alter the disease process in PMR which is a vasculitis, not an arthritis. And Sanofi, who make the stuff, say they don't know how it works in RA either. PMR doesn't get a mention. So what makes him think it does? He'd have to come up with the evidence for me...

products.sanofi.ca/en/plaqu...

[Daisychain12 in reply to PMRpro]

PMRpro YOU ARE A SUPERSTAR. Thank you. This is what I need. I will discuss this with him. Yes our gps can prescribe plaquanil. He is quite strenuous in his belief that plaquanil is a good choice so it’s great that I have something to show him. Understandably he hates having google quoted at him. I get that. He told me that every rheumatologist in Melbourne prescribes it as a steroid sparer!! Xxxx

[PMRpro Ambassador in reply to Daisychain12]

That isn't google - it is the documentaion issed by the company! All I can say is, thank goodness I don't live in Melbourne! They didn't carry the day at the international meetings to draw up the guidelines - so it can't be that effective!

You could also mention to him that there are immunologists who are concerned at the combination of pred with further immunosuppressants as "steroid sparers" as evidence is emerging that the longer term effects seem to increase the risk of various cancers and they feel a tad more pred is probably less of a problem in the long run than piling up drugs one on top of another, especially when there is no good evidence of the effect.

[Daisychain12]

Oh I’m so scared.

[PMR2011 in reply to Daisychain12]

I was on Plaquinil 2 years and never had a problem. I think it did help me taper Pred. Got my eyes checked annually, never had a problem there either. Worst case if you have side effects you stop it. You won’t lose any ground.

[Daisychain12 in reply to PMR2011]

Yes that is what my gp says. The trouble with me is my extreme sensitivity to drugs. I have a list of contra indicated drugs a mile long. My body does very odd things with no rhyme or reason. Xxxx

[PMRpro Ambassador in reply to Daisychain12]

All the more reason to say no = the more different things they stick you on - the more different interactions are possible. Spent ages discussing that with my cardiologist the other day - luckily she agrees!

[Hidden in reply to PMR2011]

I have been on Plaquinil for 6 months now and no problems with it. I am down to 1 mg now and hopefully through with the Pred soon. I have had PMR for 3 years and 3 months now.

[Telian in reply to Daisychain12]

Don't be scared, you've had plently of advice and no-one makes you take anything you're not sure about - just say so - there's a saying 'if in doubt don't do it!

[Daisychain12 in reply to Telian]

Hello Telian!!! Thank you!! I always forget I am an adult and have a voice! 😳xxxx

[Telian in reply to Daisychain12]

You have - you talk to us! Medics are normal people discussing your body with you, listen to them and if you don't understand ask them to repeat in simple terms - you can still take time to decide - no rush ever. xx

PS: when I get round to it I've got photos of my granddaughter's prom night in the Sunshine Coast....

[Daisychain12 in reply to Telian]

Oh yes it would be fantastic to see your photos please!! Thank you for your wonderful words xxxxxx

[SheffieldJane in reply to Telian]

Yes please post the photos Telian!