Drug Reaction Rash?

[Nanosaint]

Newbie here. I'm wondering if anyone else developed a body-wide rash after starting Hydroxychloroquine. I have Lupus and Sjogrens.

[heatherevans28]

Yes, I developed a terrible rash across lots of my body after 3 months and had to have an emergency biopsy done because it went down my throat. It was diagnosed as a severe allergic reaction and so I cannot take the drug anymore. When did you start hydroxy? Has your doctor seen the rash and recommended what to do?

[SLEEPINGDOG in reply to heatherevans28]

I have been on Hydroxychloroquine for about 7 years now. It has a few side effects, but nothing we can’t live with without too much distress! I'm sure you know that it uses Quinine which was originally found to combat malaria, but one of its (many) side-effects, as I'm sure you know, is that the quinine part of it has been found to help us by reducing the onslaught of Lupus. Which works well, It has not been proved to help with COVID 19 though, despite Pres. Trump’s hopes.

Originally, when Lupus struck, it had several bad effects but nobody knew what had hit me, so they were treated individually [but sadly it doesn’t work like that!]. For instance, I had found the skin peeling off my back, so I was given skin moisturising cream; I developed an inability to get my limbs to obey the brain instructions – like, for instance, my left foot seemed to be glued to the floor and I couldn't move it - my left hand got stuck to the bannister and wouldn't obey my brain's instructions to open and let go until my wife peeled the fingers off the woodwork one by one, and I was given sedatives for that, but eventually a young [F1 Grade] Doctor linked all these problems together when his studies revealed that Hydroxychloroquine had a beneficial effect on all of these symptoms, so his Consultant started to try it out on me and it took a little getting used to, but seemed to work well.

At first I got the runs a lot, and bladder weakness – which is getting worse, but I blame that on underlying health problems – however I’ve found that taking the meds with a meal and taking in less fluid seemed to help with that. They say it can cause hair loss, but my age and metabolism has beat Lupus to it, so that one is of no concern to me! Fortunately for me, I don't seem to suffer from the nausea side effect, which many people seem to.

Weight loss, and appetite loss are said to be common side effects and why, oh why, has that effect by-passed ME? when I first developed Lupus I lost over 20 lbs in two weeks without medication, because my stomach wouldn’t hold anything down – not even water and when I was taken to hospital, I was put on a drip until I found myself able to eat solids again, and even drink water. The hospital nutritionist told the kitchen and ward staff to give me high calorie meals, and snacks in between meals, such as biscuits with every cuppa (which is like giving an alcoholic a bottle of wine of their choice, with every meal and in between, and I was born overweight and have been on diets etc all my life)

However, apart from the above, Hydroxychloroquine seems to have increased my tinnitus and exacerbated the hereditary family curse of skin problems giving me an occasional strange rash which I've never suffered from before. It also appears to have taken away my self-control substantially, and my eyes seem to leak at the silliest things, like sad bits in The Simpsons! Are there any? - my eyes apparently think so . . . . but give me a story like 'Call the Midwife' or ‘Casualty’ and I'm a total wreck! (see what I mean?), however, I don’t believe that is caused by Hydroxychloroquine but my underlying problems and I also lose my temper very easily (which I never used to do). Thank goodness my children are grown up and live elsewhere, so they don’t suffer me at my worst and my wife is a total saint with seemingly endless amounts of empathy. Fortunately, I'm also normally very laid back, so I quickly regain control again before I slap anybody.

I had a body-rash before I started to take hydroxychloroquine - forms of Dermatitis run in my family - so I expected it. but it got really bad and I lost about 25% of the skin off my back, but I'm now sure it was caused by the Lupus, but when I started to take hydroxychloroquine it gradually disappeared, although my skin everywhere still remains vulnerable, and I get small rashes (2p size) frequently. I don't know if any of this helps to add to your comparisons; incidentally, the Pfizer COVID protection hasn't caused any notable changes!

[Foggyme]

Yes, I also developed a body wide rash due to hydroxychloroquine. My whole body felt as if was burning and I also had a systemic reaction (temp of 38.9). I had to be admitted for IV steroids and antihistamines - though I'm not suggesting that this happens to everyone who develops a drug related rash - I was just unlucky, I think.Further to that I've been told never to take chloroquine again.

I've also seen reports here of those who have had rashes which have abated over time, so its possible to have a reaction that settles once the body learns to tolerate a new medication.

If your rash is burning too and most definitely if you get a high temperature, it would be advisable to get seek immediate medical attention and stop the hydroxychloroquine until you’ve been properly assessed.

I think the bottom line is that allergic reactions come in many guises - the severe and the not so severe that may well settle over time. However this affects you, it’s best to report the reaction to your rheumatologist and to your GP (especially if your rheumatologist is one of those who is difficult to contact). Some rheumatology clinics also have telephone helplines or access to nurse practitioners which may help (though many have a 48 hour response time, which won’t be of much use if your reacting really badly and need help right now).

And of course, if the reaction is really severe contact the out of hours medical service or go directly to A & E.

Autoimmune deranged bodies can often react badly to drugs so please don’t worry if this is a drug that ends up being 'not for you'. Your rheumatologist should be able to work with you to find something that works for you and your body.

Good luck. Please let us know how you get on x

[Florence91]

Not personally Nonosaint and I have taken it for 13 years but it's possible to be allergic to anything of course, and rashes come with autoimmune diseases. Do show your doctor so you can work out which. All the best

[daffodill2]

I have been on Hydroxy for years I have alway been ok but I do get face rash but that is normal with lupus,but I would contact somebody if you are worried take care

[gco34 in reply to daffodill2]

Same I do hate it

[libby25]

Hi Nanosaint

I Have been on Hydroxychloroquine for 7 years now. Initially had rashes but changed brand to Zentiva only and no more rashes, other than the normal rashes when feeling run down and having a flare. Perhaps you could ask for the Zentiva brand and this may help you, unless of course you are allergic to any brand and then you would have to discuss your options with your Rheumatologist I guess.

Hope this helps.

[gco34]

I get facial redness

[RachelD1972]

I had a terrible face rash with hydroxy. Everyone kept saying it was my lupus rash and I knew it wasn’t. Put up with it for 10 months & spent a fortune trying to manage it. Eventually a pharmacist told me Hydroxy can cause severe sun reactions to some patients. Rheumy took me off it and within 3 days it had gone. Pls let your rheumy know and if necessary take pics of it too.