Is Hydroxychloroquine a good idea?: Hello everyone... - LUPUS UK

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Is Hydroxychloroquine a good idea?

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Hello everyone,

I have recently been diagnosed with APS and in process of lupus being investigated. My consultant has asked me to consider taker hydroxychloroquine.

I’d welcome hearing your experiences- good, bad or indifferent. Thank you

14 Replies
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Hydroxychloroquine seems to help with reducing inflammation (from recent blood results) and joint pain. I have experienced constipation, nausea, indigestion and dizziness since taking this drug. Today I was told that I'm pre-diabetic. I don't know if these symptoms are drug induced or part of autoimmune conditions . I've now been told to look at diet and exercise, do at least 30mins cardio raising activity a day, this will have to be swimming because my joints and fatigue will not cope with high impact exercise. I suppose you are aware there is a long term risk of irreversible damage to the retina/sight so you should have annual/six-monthly eye examinations. I'm not sure and have not been told there is an alternative to hydroxychloroquine for mild SLE. My rheumatologist told me immunosuppressants are given to those with severe SLE and they come with many complications. I was only diagnosed in October 2018 so consider myself a newbie.

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Hidden in reply to KeepingUpBeat

Thank you, that is helpful. I had a blood clot in a vein in my eye which has caused damage so I’m reluctant to take it.

KellyInTexas
KellyInTexas in reply to Hidden

Please look at HU Hughes/ sticky blood. I’m out of time at the mo, but will meet up with you there.

In a word- yes. For many reasons you should try if you can to stick it out. But brand zentiva will have less fillers to react to. This may be your problem.

Djlr
Djlr in reply to KeepingUpBeat

Benlysta is for people in the mild to moderate category (see info below)– it is something you definitely can keep in mind along with your Hydroxychloroquine.

It is not for people who are having major problems, I would research more and bring it up to your doctor.

rheumatology.org/Portals/0/...

drugs.com/comments/belimuma...

Hi am sorry you have been diagnosed with lupus I have tried the hydroxochloroquine twice both with severe side effects but some people I know have been fine. Why don’t you get a daily diary of symptoms and if you experience side effects or feel unwell I would stop and see a dr. I am now treating my lupus by going on a vegan diet. I am taking a lot of supplements and am having fresh basil, mint, rosemary and oregano in smoothies with anything that is anti inflammatory. I am drinking 2-3 litres of water. Taking a steam bath a few times a week and am researching natural cures. The only water I drink is bottled and my symptoms are starting to calm down I am hoping to improve. Wishing you all the very best. I hope you feel well soon. Take care. Elena.

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Hidden in reply to Elena1234

Thank you for your understanding. I have modified diet quite a lot in last 8 months and it’s definitely helped me feel more well generally.

It’s interesting reading the leaflets on hydroxychloroquine- it informs of the side effects and I was thinking yesterday ‘isn’t that the same type of things I’m getting with the APS and lupus?’ 🤔

Good thing is, my consultant is not making me rush the decision.

Djlr
Djlr in reply to Elena1234

Great ideas - I also find the better we treat our bodies the way you are doing, the healthier we are living with Lupus.

Eating organic, lots of fruits and vegetables (maybe stay away from the nightshade vegetables which have been said could cause inflammation with arthritic patients ) ( definitely "no alfalfa sprouts" - the enzymes definitely create joint pain/ inflammation in lupus patients & possibly "garlic" is bad for us too)

webmd.com/lupus/qa/why-shou...

So I totally agree, eating healthy, staying out of the sun, resting, following the Lupus guidelines makes a huge difference in the way our body is able to live with Lupus💜💜💜

Yes- this would be a correct course of treatment.

But remember it is based on ideal body weight not actual "weight". It is based on height.

hss.edu/conditions_top-ten-...

aao.org/eyenet/article/rx-s...

blog.arthritis.org/news/wro...

I hope these help for you, and work with your doctors they are on the right track. 💜

APS here. Possible other autoimmune stuff been on Plaquenil for about 6 months now. It’s helped with the fatigue quite a bit, also the arthritis. My rheumy feels it will help prevent clotting, and if I have lupus (don’t have positive antibodies for it except ANA and APS, ) it will help that also.

I had one side effect, soon resolved, and have my eyes tested regularly. Blood tests are fine too. Hydroxychloroquine really really helped my aches and pains and energy levels. My GP was more interested in giving me Metformin for diabetes, and statins for cholesterol - he has never shown as much interest in my Lupus/Sjogrens. I lowered my sugar intake and my levels dropped to an acceptable level. Surgeries are encouraged/rewarded by the number of “diabetic/cholesterol “ patients they have - article in the Daily Mail yesterday ! Good luck

KeepingUpBeat
KeepingUpBeat in reply to Cas70

I totally agree with you GPs are pushing pre-diabetes and very soon the have you on Metformin. I got a letter from my GP surgery this morning suggesting I attend a 12 weeks programme at the surgery aimed at those at risk of developing diabetes. I wish they would show the same level of interest in all the other things I've got going on in my body. I won't be attending I know all about healthy diet- removing starches, carbohydrates, sugar and sugary foods and take daily exercise.

Cas70
Cas70 in reply to KeepingUpBeat

Hi - i had the same pressure. I told them they were giving me blood pressure. I told them firmly no and I would sort it myself - issued me with a testing kit and made forward appointments! They NEVER do that for my Lupus - or follow up blood tests! Rang me constantly to attend a “diabetic interview” with head of Practice. He really tried to bully me ! After 2 years of rubbish consultations due to Lupus I stood my ground - his parting words were “you can’t do this alone”. Unbelievable! Except we with Lupus know it’s true.

I have been taking hydroxychloroquine since i was first diagnosed when u was about 10. I am now 15 and i didnt get any major or intense side affects from this. But keeping a diary to track your medication and the side affects really helps in remembering small details for your doctor to know and decide if you should continue or not.

I love it! Helped w joint pain tremendously. I've been a fan for the last 12 years

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