Help

[Coco12345]

Hydroxycholorquine I have been on 5 years,but my skin had come out all over my body with red spots/marks and have been this might be an allergic reaction to the drug,I have been told to stop taken and see what happens.I am a bit worried about my lupus doing this but have not been told to take anything in place,can anyone help thankyou

[Redfox25]

I am not medically qualified but I'll share my experience of this.

A few weeks after I first started taking hcq I had an extremely bad 'reaction'. Hives all over, so itchy I couldn't sleep and it had me in tears. I was told by a GP to stop taking hcq as it seemed like an allergic reaction. Fast forward a few months and I saw a new rheumatologist who thought trying hcq again would be a good idea and I thought it might be too, having researched the drug, lupus and skin issues. So I tried it again (I was nervous) and I had no reaction. So I am not allergic but had a case of urticaria (hives) and angioedema, diagnosed after the fact by a dermatologist. This can be brought on by a number of environmental factors, one of the main ones is a food. I read on Johns Hopkins website that around 10% of lupus patients get hives.

Of course some people are allergic to hcq and it can be extremely serious so that should be considered. I'm not sure how likely it would be to be an allergy of you've already been on it for 5 years. Do allergies develop over time? Perhaps someone else can help on that part and that is something I think you should raise with your rheumatologist.

I think you are right to be cautious to stop taking hcq as it has been helping you. Can you get specialist advice ASAP? I'm sure if this was me then my specialist would want to heat about it.

Best of luck.

[Coco12345 in reply to Redfox25]

Thankyou I will call my consultant today x

[eekt]

Hello Coco, I had an allergic reaction to HCQ, an all-over pin-prick red rash that spread rapidly (and continued spreading for a week after stopping) plus swollen lips that peeled. I'm sure someone here will know how to tell the difference between hives and a lupus rash, but you maybe have other symptoms of allergy like a faster heart beat?

There's no direct replacement for HCQ, it's the only immune-modulator, so other treatment would be based on your current symptoms. xxx

PS if your lips swell, speak to a doctor...like I didn't..!

[Coco12345 in reply to eekt]

Thankyou x

[maggielee]

Hi Coco

I would taking pictures and document it, helps the doctors ..

I been hydroxy for 5 years no reaction like that...mine come from UV ....food for thought...spread once it started..

Hope you get to the bottom of it..ml

[Coco12345 in reply to maggielee]

Thankyou x

[AimeeA]

I was on hydroxychloroquine for a while but started to have side effects and stopped taking it. It's not a given that you must be on hydroxychloroquine with lupus, and there are other drugs that can and do treat people when necessary, so listen to your doctor and stop taking it.

If you experience additional symptoms after going off it, then just let your doctor know and they'll come up with a plan to address whatever those symptoms are.

For myself, I found the most effective treatment to manage flares was figuring out what my triggers were and avoiding those things, so lifestyle changes. I can't go out in the sun, and I have to avoid things with sulfites in them (like wine) and other things I know I'm allergic to. I also carefully manage my stress and the amount of rest I get, and changed jobs into a lower stress job since stress is a huge trigger in lupus.

So be proactive about researching and managing your lifestyle to prevent flares and you won't need as much medication to control it.

[Coco12345 in reply to AimeeA]

Thankyou x

[Sleepyhead1234]

Hi Coco

Sorry you are getting skin problems from hydroxycloroquine. I could not tolerate it as it made me sick and constant upset stomach. We are all so different it's hard to give anyone advise but hopefully your Rheumatologist will see how you go without them and perhaps may start you on something different. Don't panic about not taking anything for your lupus. My rheumatologist stopped my chemo for 2 years as I was incredibly breathless all the time. I saw pulmonologist, dermatologist, cardiologist, endocrinologist and gastrologist who all wanted to do various tests, for a time it seemed as if l lived at various hospitals. Now 2 years later my rheumatologist has ruled out any underlying cause I've been restarted back on to chemo. If you are worried or your symptoms get worse please go and get an appointment with your main specialist even if it has to be a telephone appointment due to corona virus.

I do hope your skin settles down soon.

Best wishes

💜💜💜

[Coco12345 in reply to Sleepyhead1234]

Thankyou x