Starting hydroxychloroquine

[Karen1983]

So i have finally been given the go ahead to start hydroxy (been waiting 6 months) has anyone got any advice for me/ what to expect please

Many thanks

[LouLamb]

I only just started one tablet a day on Saturday . Everyone has told me that it can ages before you see any results .

[EOLHPC]

👍👍👍👍

I was advised to take both morning & evening doses with food. I manage a lot of chronic early onset inflammatory GI conditions, so this timing made sense to me. Even so, my oesophagitis & gastrtis did flare at first while my bod was adjusting to hydroxy. But these flares settled down within a few weeks. I also had 7-10 days feeling headachy & spaced out at first, but nothing too bad. Again, I put this down to my body adjusting

Lucky me: I felt BIG Benefits from hydroxy during the first week! Apparently this is unusual, but I have met others here who benefitted right away too. Eg the strange smell my hands had been giving off for ages disappeared right away (horrible: like burning electric wiring), and the pain in my ankles, wrists, elbows & shoulders damped down greatly. Also, hydroxy just took the edge of my chronic fatigue & cognitive impairment....I felt just that bit better, which was v encouraging.

I've been on daily hydroxy for 6 years now. 2 years ago, I had to pause daily doses due to sinister bone marrow blood results. Right away my chronic neuro cerebral symptoms flared enough to make me certain I needed daily hydroxy in my daily oral combined therapy lupus treatment plan. I was relieved when rheumatology & immunology said I could go back on hydroxy again after 5 months off it

In the years since I started hydroxy, Lupus UK has given us news re research into its effectiveness: eg studies have now established that benefits are cumulative. So, if hydroxy agrees with you, chances are you'll be on it indefinitely. But do make sure your optician tests for any possible side effects, especially macular degeneration, during your annual check ups. You can do Amsler Grid tests at home in between optician appts:

eyecaretrust.org.uk/pdf/eye...

Wishing you success with hydroxy...hope you'll let us know how you get on with it

🍀🍀🍀🍀 coco

[Lupiknits in reply to EOLHPC]

The first couple of weeks of hydroxy upset my stomache a bit. I was told six months to notice a difference, thought I hadn't , and after about a year, I stopped. Started again because, yes, it had made a difference. Nothing amazing - I'm not bouncing around,, but I'm definitely better with it than without.

[maybehope]

Been on them now for nearly 2 years. Yes they take a while but do make a difference. Slight upset stomach to start with but that soon settled down.

[weathervane]

Hi karen , i was lucky , i started at 100 then up to 200mg with no side effects that i noticed . It did take about 3 months to take effect though . Wishing you all the best xx

[Karen1983]

Thank you all for the replies they are very encouraging i am feeling very hopeful that i will too benefit from this drug i will keep you posted. Keep well everyone xx

[Cas70]

Thank goodness for Hydroxychloroquine! I improved after just a few weeks, energy levels back, itching, bone pain all down to a bearable level. Take it with your largest meal I would suggest - stick with it and be patient- it is slow to work but work it does. Good luck

[Karen1983]

Fantastic thank you so much feeling so postive 😀