SLOW RECOVERY ON HYDROXYCHLOROQUINE- ANYONE ELSE ... - LUPUS UK

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SLOW RECOVERY ON HYDROXYCHLOROQUINE- ANYONE ELSE FOUND NO IMPROVEMENT AFTER THREE WEEKS?

Tinkytink profile image

TAKING 400MG HYDROXYCHLOROQUINE FOR THIRD WEEK AND STILL FEELING REALLY AWFUL...HOW LONG UNTIL I EVEN START TO IMPROVE? i THOUGHT PERHAPS I WOULD SEE A DIFFERENCE AND FEEL MUCH MUCH BETTER BY THE 12 WEEK MARK BUT SO FAR....

17 Replies

I can’t really help because I’ve been on it for 8 months lowest dose and don’t feel much better my neuro wants to wait a year 🤦🏼‍♀️

Hope you feel better soon x

Hi Tinky! I take 300 daily. I’ve been on it for a little over a year now. In my opinion, I didn’t really notice how well it worked until I stopped taking it for a short period of time. It’s benefits don’t really come overnight. It took me being on it for about 3 months to really notice a difference, particularly with joint pain and skin manifestations.

Hope this helps! If you’re not experiencing any side effects, I’d stick with it for a few more months.

Took me about 6 months at 200mg to notice a difference.

I agree with others: stay with it. In my case I didn’t notice much at three months and by six months I thought it wasn’t doing anything. Others reassured me they could see a difference. For me, it was more subtle than I expected, but well worth continuing

I was started at 400 it took a good few weeks for me to notice an improvement with my skin and about 3 months with the joints. When it looked like everything was under control they reduced it to 200 and oh my god everything came back with a vengeance.

We all want whatever treatment to work quickly but sadly most don't and we can get a bit inpatient. Bare with it and hopefully soon you will notice a difference, small at first but as time goes on things should improve.

They have now put me back on 400 as what happened with the reduction proved it was working and that I needed the higher dose.

Please be patient and give it time.

X

Hi have tried it on and off for a few months but the monger I took it the more unwell I felt. but the last time it made me very ill as was possibly allergic to it. Could you keep a record of all your symptoms and when you see your specialist ask if this medication and the dosage is helping or would something else help. The only thing I found helped me was prednisone the difference was amazing I felt totally well but I know they don’t want to give it long term due to side effects especially on your bones. At the moment I am on no medication at all and am searching for natural herbal and vitamin supplements. Hope you see it helping you or them finding something else that’s much better. Keep a food and medication diary too as these made my symptoms much worse. Hope you get better soon. Take care. J😀

Hi Tinky, I have been on Hydroxychloroquine for 6 years - 4 tablets per day to start with following a massive flare when I was first diagnosed, then it was put back to 1 per day and finally for last 2 years 1 tablet 3 times per week. However during a recent flare it was raised to 1 daily again.

It took 6 months to 1 year for me to really feel the benefit of it, as Lupuiknits says it is subtle. My bloods improved which is why the Rheumy lowered the dose. But what really convinced me it works is when I forgot to take it for 4 days when I returned from holiday recently and I felt really rough!😫 I suddenly realised I’d been forgetting my Hydroxychloroquine and once back on it I began to improve again and get back on an even keel. ☺️

So give it a chance and stick with it. 🤗😘

Tinky, I'm really just echoing everyone else: 200mg twice a day and it took 12 months and coming off it (briefly, and like Spotty-ewe, accidentally!) to make me realise what a difference it had made. When something works so slowly, you don't necessarily notice that actually, all the symptoms are lessening. It's not a cure-all (and we're all praying every day that one day there will be), but for me at least, it's a big step to mitigating the various different sorts of pain and other symptoms and keeping me on an even keel most of the time . . . Good luck!

Been years on it and I haven’t seen any improvements 😭

Typically, it takes 3-6 months to start to see improvement on Hydroxychloroquine and up to a year to see full benefits. Your doctor should have told you this when it was prescribed.

In the meantime, do everything you can to be as healthy as possible.

Avoid sunlight, get as much rest as you can, eat nutritious food , and exercise to boost energy levels and lubricate your joints.

Check your vitamin levels (Vitamin D3 is especially important as individuals with lupus who have higher levels of vitamin D tend to have fewer lupus symptoms). Also, vitamin E, zinc, vitamin A, and the B vitamins (especially B12) are all beneficial in a lupus diet. Vitamin C can increase your ability to absorb iron and is a good source of antioxidants.

Be patient, be kind to yourself. Lupus is overwhelming and unpredictable. It will take time for you to learn how to best manage it. You will have bad days but also good days.

Hugs.

Agree with all who say stick with it - very slow worker. My energy slowly came back - we are all different so don’t give up. We all expect instant relief from this awful illness but there is no such thing I am afraid. Have you added Vit D and B12 to your meds - they do help. Good luck

Tinkytink profile image
Tinkytink in reply to Cas70

no actually I havent added anything and perhaps thats the next thing...a good multivit? Feel utterly exhausted. xx

Cas70 profile image
Cas70 in reply to Tinkytink

I was given Vit D and B12 before Hydroxychloroquine and it really helped. I bought a spray of each from Holland and Barrett - well worth it.

Mine took 3 months and I saw a great improvement

I would get in touch with your Dr and see what they say, I didn't notice any improvement after 3 weeks but I had stopped feeling so rough on them!! Good luck. xx

I had been on 1,200 mg per day for 5 years and I decided I wasn’t going to keep taking it. 5 years and I was still feeling so sick.

Tinkytink profile image
Tinkytink in reply to Jpabon

Oh my goodness. I was told my 400mg was the maximum they could give me for a year so Im shocked to hear you have been told to take so much for so long!! Did they not change you to methotrexate or another drug? According to science direct for hydroxychloroquine, the recommended dose is less than or equal to 6.5 mg/kg/day to a maximum of 400 mg/day.

Im sorry to hear they didn't help you. Seems to be a mixed bag but I am going to persevere as others are reporting that the slow burn really did actually help. Hope you find a solutions soon and thanks for your comments x

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