How long to feel effects from Hydroxy?

[Rhsana]

Hello,

Recently diagnosed with mild Lupus and new to the LUPUS community. Though I have been around on the Thyroid one for a few years as that is what they initially thought my issue was.

I have been on Hydroxycholoquine for 9 weeks now, having been put on it during one of the worst flare-ups of my life. I think the fatigue is starting to be a bit better as I have been able to do a full day's work which I haven't been able to do since April (though it completely exhausts me still).

I still have really bad inflammation all over my body, painful feet along with a host of other symptoms. Question is - how long has it taken people to see some really obvious improvements on the hydroxy? Is that even possible? My doc thinks what I have is 'reversible' given the right treatment, has anyone ever experienced that? Any thoughts/experiences would be so appreciated! Thankyou!

[Choccy8]

I think I was told 12 weeks for it to take effect when I first started hydroxychloroquine. I started on steroids and hydroxychloroquine, then Mycophenolate was added in to the mix. I think some people find hydroxychloroquine enough to control symptoms. For me, after five years on it, I realised hydroxy was affecting my mental health quite badly, so had to come off it. It's taken a while finding a combination of drugs and doses that suits me, but hopefully things are on an even keel for a bit. Hope you carry on feeling better.

[KnitSewPurl]

Hi Rhsana welcome to Lupus . I was diagnosed with this since 2010 but became quite ill since 2005. Been on Hydroxychloroquine since. 2010. I still get painful feet and weekly flare up. with the addition of lupus lesion spots. Rest is the best I usually find good balance knowing what you can do and what you can't. mine was with severe migraines which lead me to leave my job due to ill health as I was not able to do any work at all the migraines were so bad I was getting it daily several times a day. until I started Topiramate slowed it but I was still them when I started Hydroxychloroquine it totally ceased it . for months. now I only get it once a while a very slight one.with a bad flare.

it is still early days for you it should start to work . the fatigue and the pain on feet should clear up. but not unless you r stressing yourself or pushing yourself hard then it will come back again. the body you will need to listen to it and understand how to manage it with out getting to much flare ups and getting unstable.

the other thing is diet. watch what you eat some things you eat can flare up your lupus. mine was garlic and mushrooms .check and see what is causing your flare.

Hope you settle in with the Hydroxychloroquine. All the best xx

[dg70]

It took nearly a year before I could see some benefits. The best thing was it has helped bring my dsdna down to near normal levels so its helping my immune system without me realising. I think some say you only know what good it is doing when you stop. 🙂It's improved my tiredness a little but anything is a bonus. I am having a massive flare at the moment (staph infection, mouth ulcers and sores covering my mouth and tongue) but haven't flared up like this since last year. I hope its the hydroxy that limits the number of flare ups. It's such an unpredictable thing Lupus/Sjogrens for me that anything you can take that holds things back from progressing is a bonus. Not sure about Lupus being reversable though? Hydroxy as far as I have been told is not a cure just an aid to controlling your symptoms a bit better. Fatigue will be your constant companion so don't overdo things or it can come back and bite you hard. Most people could not manage a full days work with Lupus so don't feel a failure if you can't manage it. I can recommend watching some of the webinars with various consultants on the lupus site as they are so informative about this condition and all the side effects and treatments. lupusuk-virtual.org.uk gives you access to old webinars but you need to log in. There is one on fatigue. I am only a couple of years since diagnosis so you get used to doing a lot of research.

[MusicalFurbaby]

Hi Rhsana, welcome to this community! A lot of us are on hydroxy, so I hope you get some good feedback on your question. ☺️

I was on hydroxy 200mg for two months, then my rheumy increased to 400mg and it was a further 2 months—4 months total—before I noticed any improvement. The main benefit has been to my constant rashes and sores, which are far better than they were before. I have not noticed any improvement to my joint pain or fatigue; I have been told it takes 6 months to get the full effectiveness, and it’s been more than 6 months now for me. Hopefully you get more benefit! Good luck!