Side effect of hydroxychloroquine or symptom of seronegative lupus?

[Lupymo]

I’ve had a fantastic response to hydroxychloroquine and 3 kenalogue IM injections since June last year - severe joint and muscle pain n stiffness improved but had Pleurisy and Chostocondritis during the winter. I was always a sun lover but I get extreme burning feeling/Chinese burn like and horrible jaggy sensations after being in the sun (Scottish weather is rubbish but I had half hour or so at 18c today in the garden) for a short time. Resorted to factor 50 and the shade which I hate. Reaction is always preceded by weird phantom water or raindrop feeling on exposed skin, usually arms, legs but not my face. Feels like I’m going mad and was looking for the rain! Not overly stressed or anxious. I’m sitting her totally miserable and on Tramadol and Ibuprofen to calm it down (not really helping )My rheumy totally dissed any suggestion this was a side effect of hydroxy when I saw him in March, having been really ill with pleurisy etc following Caribbean holiday in January. Dr Google make some reference to Hydroxy causing photo toxic reaction but beyond that I can’t find much info, including trawling this wonderful site for information. I can’t face the prospect of life before the meds but equally I can’t cope with current pain and discomfort due to side effects or sunshine? Any feedback and advice or suggestions welcome. Told the doc that my past 3 holidays have been a washout as I always ended up Ill, debilitated and took months to recover. Im going on holiday next week, yes optimistic am I, but seriously I have no idea what Is causing my current sun induced problem or side effects and no clue what to do about it other than stop the meds or hide from the sun???

[Caza]

Yes I get this. Terrific description. I have RD & have taken hydroxychoroquine for five yrs now. I have a place in Tenerife lots of sun ☀️ there. When I first started taking them I kept thinking it was raining & would announce it to anyone that would listen. The sun would be shining with not a cloud in the sky & I would sit on the sunbed & wonder why no one else could feel the gentle raindrops 🤨. Of course after awhile I learnt to keep it to myself 🤫. I get the burning sensation as well. To be honest I’ve got used to it so it longer bothers me. I won’t sit in strong sun for as long as I used to (not a bad thing) & I use children’s sun cream. The benefits that I get from taking hydroxychoroquine far out way the downside. I don’t take any other meds, stomach won’t allow painkillers. Enjoy your holiday 😎

[Caza]

Forgot to say you have to have your eyes tested before starting hydroxychoroquine & then every 9-12 months. It’s very rare but they can affect your eyes 👀

[Lupymo]

Thanks for your reply Caza- can safely say it’s an unusual side effect of the meds now but am bemused as to how the doc disputed it could be Hydroxy related. Thanks for the eyesight test tip, fortunately no issues so far. Just wondering if there’s a good alternative to hydroxychloroquine, or if lowering from 400to 200mg might be as effective but without side effects?

[panda2]

Hi Lupymo,

I get this too! And agree you've given a terrific description as Caza says. However, I've only been on Hydroxychloroquine since early January and this sun sensitivity, plus odd water sensations started for me last June. I suddenly could not handle the sun at all for more than a few minutes and found myself hunching my shoulders beneath my hat and having suddenly no tolerance (as if I was getting too close to a fire) and needing to run for shade. Just last night I was feeling the raindrop sensation several times on one of my cheeks.

For me, I think the most devastating part of what Connective tissue disease is doing to me, is this sun sensitivity at present. It has ramped up even worse since last summer (and I fear this since it's only May), as I now cannot handle the sun coming through the windows inside and have to use a uv reflector baby pram umbrella to block the rays -- on my spot on the sofa *inside* my house...

I don't want to burst that wonderful feeling of thinking we've found an answer, but I suggest that it is possible that this could have developed without Hydroxy and as a function of the disease. Since photosensitivity is one of the symptoms. My neurologist explained the overlap between the connective tissue disease and the nerves sometimes, which explained the odd water feelings and horrible burning episodes. Are you SSA Ro+ by chance? This is often behind people with extreme sun reactions.

Just this week a Dermatologist has suggested I should go for light testing. If this keeps up for you, definitely take it to your Rheumy and/or Dermatologist. Really sorry you're having to deal with this too. It's pretty damn life-affecting.

Panda x

[Lupymo in reply to panda2]

Hi Panda2, thanks for your reply, I didn’t notice it at the time I don’t know what SSA RO+ means? My bloods always seem “normal”even with pleurisy and inflammation showing on ct lung angiogram test.. glad to say my rheumy is treating my symptoms and not my blood tests although he says sero net lupus isn’t a “thing”? Weirdly, since being sun sensitive and only 18 months post hydroxychloroquine treatment, my GP referred me to dermatologist last week as was told I have skin cancer and should be seen within 2-3 weeks. I’ve had this lump/looks like a bite above my wrist for many months and cannot help thinking the sun sensitivity has triggered it but can’t find research. Wonder if anyone knows of a link with autoimmune conditions and risk of developing skin cancer - it’s non melanoma, probably squamous cell carcinoma but till it’s removed that’s not 100% confirmed, it’s based on GP looking through a big magnifier thingy so far and having experience of similar lesions.

Apolog9es for late and lengthy post..

Lupymo

[Caza]

No mine is definitely the hydroxychoroquine but as I said I’ve got used to it & I think the symptoms have got milder or maybe I’m being more sensible with the sun. I did reduce the meds & stopped taking them for a couple of weeks not because of problems more because they were working so well I thought the very clever rheumatologist might of got it wrong 🤦‍♀️ & I didn’t have RD after all, stupid me. The result was I couldn’t get out of bed 😞. Back on them again very quickly. I did tell my rheumatologist & he just looked at me in amazement & said why oh why did you do that 😳!!

[Chanpreet_Walia LUPUS UK]

Hi Lupymo,

According to The Lupus Encyclopedia, potential side effects of Hydroxychloroquine are an upset stomach, nausea, changes of skin and gums, rash, seeing halos around lights, light sensitivity due to corneal crystals, weight loss, anemia and retinopathy.

We published a blog article on 'coping with light sensitivity' which contains helpful tips and information which I hope you will find useful: lupusuk.org.uk/coping-with-...

[nancarolyn]

Hi

[Fennella02]

I have had exactly what you describe but not caused by Hydroxychloroquine, mine was caused on separate occasions several years apart by doxycycline and hypericum (st johns wort). I assumed that it was neuropathic damage caused by drug induced photo sensitivity. It took 5 weeks to settle down each time.

I'm not surprised that your rheumy brushed your suspicions aside, they do that a lot when we suspect adverse reactions to our meds.

[nancarolyn]

Hi Lupymo. I am so sorry about the sun. I have been taking hydroxychloroquine for about 30 years and have not had any major problems. Started with 400 and now take 200 per day.The sun for me has always been a problem, even before taking hydroxy. As time goes on, I have realized that it takes my energy away and probably did when I was younger, but just wanted to be a beach person and have a little color, so I did not always pay enough attention to how it made me feel. Have since learned the hard way, that for me it does not mix well with lupus, so I am not much of a beach person anymore. Love the mountains more anyway and it is not worth the risk. Hope this helps. Good luck to you. My husband loves the beach. The last time we went I was in bed the whole time. Not fun. Take care of yourself. God Bless you, Nan