Hydroxy

Hi all

After a recent flare I've been treated with steroids and mmf

Went to hospital today and a Australian dr who is doing a year work in the uk asked why I wasn't on hydroxy

I said I've been dx for 6 years and it's never been mentioned she told me everyone with lupus in Aussie is on this drug and gave it to me

Thoughts ?? Worried about eyesight and heart.

Does it work ???? Xxx

9 Replies

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  • Was put on hydroxy on first rumi vist can't say I noticed a difference but it can take up to 6 months to see a difference after 3 months that put me on hydroxy 7days and methatrexate 1day this made a massive difference but you can have a duvet day after taking methatrexate hope this helps

  • 6 years ago I started on daily hydroxy 400mg when my SLE diagnosis was recovered. It helped me within the first week & consistently has continued to help

    Within 2 years, daily amitriptyline 20mg & mycophenolate Cellcept 1000mg & then low dose prednisolone 5mg had been added to my daily combined therapy treatment plan. As I understand it, the hope is that this combo helps me avoid having to take pred & myco at higher doses

    I know I need daily hydroxy ongoing, because, not long ago, rheumatology & immunology had me pause hydroxy for 5 months, during which I missed it badly. I was very glad when I was given the ok to add hydroxy back in!

    My impression is that current thinking amongst uk lupus experts is that we all need to start our treatment plans with daily hydroxy initially...due to its long standing positive reputation (relatively high effectiveness with low side effects) ....and, if it suits us, we stay on it indefinitely cause the benefits are cumulative and long term...meanwhile whichever other meds are appropriate in our individual versions of immune dysfunction & connective tissue disorder get added to our treatment plans alongside hydroxy

    🍀🍀🍀🍀 coco

  • I have been on hydroxychloroquine from my first rheumatologist appointment. I was put on 400mg a day, it was cut to 200mg then upped again as I didn't feel as good. I'm not on methotrexate once a week and 50mg of amitriptyline and 5mg of steroids daily. I had to have my eyes tested before starting the hydroxy and paid extra for the photograph of the backs of my eyes. Optician said that most people that have eye trouble are on a much higher dose and have been on it for years and she said that's quite unusual.

  • I was started on hydroxy straight away. It took some time to show much improvement, and I stopped it for a couple of months, but noticed that it really does help. Back on it now and am staying on it.

  • Hi poodlegal,

    It is quite unusual that hydroxychloroquine hasn't previously been considered as a treatment option for you. It is the safest lupus treatment available and can be beneficial for a range of things which is why it is so widely used. As others have mentioned, the risk to eyesight with hydroxychloroquine is actually very low, unlike the older variant, 'chloroquine'. As long as you stick to the correct dosage and have your eyes monitored every year you should be at very low risk of having any noticeable adverse effect on your vision.

    May I ask what your concern is with hydroxychloroquine at the heart? It actually has been shown to decrease total cholesterol and bad cholesterol (LDL) levels, and people with lupus taking hydroxychloroquine are less likely to develop diabetes; both of these are risk factors for heart disease.

    Like any treatment for lupus, it will have varying results between patients. For some it will work brilliantly and for others they may experience adverse effects and need to stop taking it. Generally it is used a lot in the treatment of lupus because it is generally very safe and numerous studies have shown that it can increase the life expectancy in people who have lupus and take it regularly.

  • Hi Paul

    In the warnings it says can cause cardiomyopathy

  • Myself too can't understand why this drug wasn't even spoke about only with the Aussie doc. !!!

  • I wasn't aware of that potential side effect and I imagine it may be very rare. If it is a concern you could discuss it with your doctor and they may be able to state how much of a risk it may be for your individual case.

  • Hi there. I started hydroxy in February & I have found it to be highly effective. It really kicked in after a couple of months & I feel as good as I did when I was on steroids (in fact, a whole lot better as I'm on it permanently & it doesn't wear off as the steroids did). I also had my eyes tested before I started, so feel confident that my eyesight will be ok as long as it's monitored regularly.

    I would really say it's changed my life.

    Just a little warning that the hydroxy did make me feel a bit sick for a couple of weeks, but soon wore off.

    Good luck with it! 😃

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