hydroxy how long before it works?

[katidid]

I'm on week six and no clue if it's working. what should i expect to improve first? i don't know what to look for and am on so many medicines i don't know which effects what! 😞

[Lupiknits]

It seems everbody is different. My rheumy said 3-6 months because it takes time to build up. For me, I couldn't really notice any improvement in particular, but then I had an overall feeling of being better than before ( helped by others pointing it out: I was a bit of a miseryguts at the time)

I think I've seen others on the forum say they felt the difference much faster.

[Ianrussell69]

Hi with me I took hydroxy for 3 months with no noticeable improvement I was the put on methatrexate one a week as well and this made a big improvement but I believe it can take 6/12 months to notice improvement with hydroxy stick with it now my Meds are sorted at moment I have more good days than bad although the methatrexate pills made me feel very unwell for 24/48 hours after taking them I now inject and have hardly any side effects hop they sort your Meds out quickly

[LouLamb]

My doctor said could take 3-6 months . I started noticing the reduce in my fatigue in about 1 and a half - 2 months

[whisperit]

I was told 3-4 months. When I started on hydroxy, I had significant breathlessness and sore and swollen hands/Raynaud's. I was put on prednisolone at the same time.

Both the breathlessness and the swollen hands (but not the Raynaud's) improved gradually but there was no point when I thought, "Aha! It's started working!" I imagine that the steroids would have begun to reduce the lung inflammation fairly quickly. After about 3 months, the steroid dose was reduced until 12 months later I am down to just 4mg daily. Since my lungs have remained clear, I imagine that this is mostly due to the hydroxy. Hope that helps x

[Leave-me-alone]

Same, I was told at least three months. But in my first month I already experience an other flare up. And have been put on double 400mg for one month and then go back down to 200mg.

[Nurseladybird]

I think the improvement is so slow and subtle that you're not really aware of it. I didn't really notice an improvement as such, but when my rheumy decided to cut it down to 200mg, I certainly noticed that and felt so much worse! I put it straight back up to 400mg myself and told her I was never cutting it down again.

It's certainly not a 'miracle' and I still have days where I feel rubbish, but more days overall that I can function. I suspect it took a good 6 months to reach maximum effect? I've now been on it for a year and a half. I immediately know if I've missed a dose as I get a banging migraine, so I'm pretty careful to keep taking it.

[Hidden]

Mine took 7 months to kick in, after 4 years I lost a lot of weight and so had cut the dose down to 200mg last year, it stopped working and now I'm back on 400, and still waiting for it to take effect again properly.

It's slow to work, but quick to vanish, with no yahoo moments of sudden wellness x

[Wendy39]

Hello. I guess you are new here? Or I've missed previous posts. Welcome. I was diagnosed in 2013 and I think I would say that it took 12 months for me to feel like I was really getting somewhere. I was put on 2 x 200mg of hydroxy immediately, but to be honest I think the doctor wasn't a lupus expert and he didn't really appreciate how low I was. I was always very strong and independent and used to carrying on, no matter what. But when I look back I wish I had been firmer about how bad it had got for me. I think really I could have done with a good course of steroids to help lift me out of a flare that had really been the whole of 2013. Anyway, hind sight is all very well. Some of my rashes cleared within 3-4 weeks, but now with my knowledge this might have been coincidence as we were going into winter and less sun, so photo sensitivity might have calmed down anyway. All of our lupus symptoms are different, although we do have symptoms in common, each of our combinations are different and none of us knows where our own lupus journey will take us. But you have come to a very good site to learn and ask questions. Arm yourself with knowledge about lupus and then you'll be more self aware and be able to pick up on triggers and flares. Do you keep a diary? I have been keeping one for over a year now. I keep record of headaches and what meds I have taken for them, fatigue, hair loss, whether I need a nap, skin rashes etc etc. It's quite useful as sometimes help see patterns and also I have brain fog with flares and so helps me remember stuff at medical appointments. Three and a half years post diagnosis now and I am now on hydroxy, MMF and mepacrine. This combination has helped me enormously. I hope you'll stay with us and keep us posted on your progress. What symptoms are you still getting? What other meds are you on? Hydroxy is an anti-inflammatory and I think the starting block for most lupies. It is said to be good for fatigue, aches and pains and skin complaints. It is not an immune suppressant. When will you have a review with your rheumy? Best wishes. Wendy

[nanleighh]

Hi Katidid, Don't give up, it took a good 6-8 months to get the full benefit for me but it was worth the wait. It made my joint and muscle pain and muscle weakness almost completely subside. It has helped my fatigue but still have it. I thought I would be in a wheelchair but it gave me my life back. It has not however done anything for the rash on my face and neck. Also has made my hair thicker. Everyone is different I know but if I'd given up after two months I wouldn't have the benefit I have now. The best of luck to you. Nan

[Cas70]

Hi Katidid - I have to agree with the others - there is no Eureka moment you just realise one day that you are feeling better - my joints stopped aching so much, my head stopped itching etc just slowly - I was told a year for full effect but everyone is different and all have diverse symptoms- patience is the key. You will still get flare ups. There are no miracle drugs but we have come a long way - just a few years ago it was a killer. The hardest thing is to accept you have a chronic illness.

[Chanpreet_Walia LUPUS UK]

Hi Katidid,

Hydroxychloroquine is the most common anti-malarial drug used to treat lupus however; it can take 3 to 6 months to exert its full effect.

As lupus presents differently in everybody, symptoms can vary from person to person so it cannot be stated what signs to look out for. Nevertheless, once the medication becomes effective, symptoms should be fairly controlled. We published a factsheet on ‘LUPUS: and Medication’ which you can read here: lupusuk.org.uk/wp-content/u...

Please keep us updated, all the best.