What drugs help your sun sensitivity?: I was told... - LUPUS UK

LUPUS UK

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What drugs help your sun sensitivity?

Comeonpeeps profile image

I was told after diagnosis that nothing could be done to help with this. I'm on hydroxychloroquine and I'm still extremely sensitive to the sun. What drugs help yours please?

30 Replies

I used to be horribly sensitive to the sun but have found my tolerance increasing with long-term hydroxy use, generally controlling disease activity and factor 50, if that helps? Also UV filtered sunhats and things.

But someone has told me recently that mepacrin helps with hers.

Drugs arnt always the answer.best and only things to do that I'm aware of even after 8 years is cover up head to toe,wear factor 50 all year,sunglasses and wide brimmed hats.also limit uv exposure Inc through glass and from light bulbs especially fluorescent kind x

I have been told hydroxychloroquine and Mepacrine both help. I used to take hydroxy, now on Mepacrine. Hard to know how much they help, but I still avoid the sun completely for the hot part of the day and need to keep covered even in the house.

I cover up head to toe with Linen and Weave clothing,Wide brim hat Sunglassess plus Upf50+. In doors I have Filters on all my windows keep my lighting to a minimum.The sun is at its Hottest between 10 - 4 so try not to go out between those times.

yup , I am afraid if it part and parcel of Lupus and Hydroxychloroquine my dear . We learn to live with it and cover ourselves up and protect ourselves with factor 50 or else suffer the consequences of skin problems like rashes or flares up of any form. try good quality factor 50 and brim hats and also very dark glasses.

As for me I try to avoid the bright days as much as possible due to light sensitivity as well of my eyes at the moment so I have double whammy of skin and eyes. on a bright days atlike at the moment I am walking around in the house with dark glasses 😂😎

I feel for you knitsewpurl...I take azithromycin which causes photosensitivity of my eyes.im entitled to reaction lens in my glasses free of charge but its not enough and need to wear wrap around sunglasses on top 😎 xx

that is strange I take azithromycin as well but for my chest. I have never come across it being photosensitive on the leaflet unless it has changed recently.

I take it prophylatically for my chest .the mhra recently issued a safety update about prescribing it and hydroxy at the same time due to an increase in heart issues so until they find the cause of my heart issue I'm not to take them at the same time.

Azithromycin could make you sunburn more easily. Avoid sunlight or tanning beds. Wear protective clothing and use sunscreen (SPF 30 or higher) when you are outdoors.

rxlist.com › patient-ima...

Zithromax (Azithromycin) Side effects, Images, Uses ... - RxList

just read the leaflet on Azithromycin - they only mention on possible changes of eye sight and increase sensitivity to skin. there is a warning on heart condition if it was issue to them. when I was issued this several years ago I was asked to go for ECG before starting on it due to my slightly abnormal cardiac history as I have a mitral valve leak that back flows which directed a murmur. this all happened when I was diagnosed at the same time of my Lupus- the cardiac problem, which I get some swelling across the body occasionally but it is manageable. Rheumatology has not contacted me for over 2 years so I really dont think they are going to right now. not really going to chase them for it at the moment. Whenever I call them , it would be we will call you back but there will be not call backs I had twice this type of phone calls . So , what is the point when a patient is in pain at that point and they don't call back, I have just leant to deal with it my pain and swelling. I know they have failed in their duty of care for not doing their job . Because they are suppose to be checking patient bloods every 6months at least to check their levels.

I have other appointments(eye and bladder ) to deal with plus my hubby (not too well since post covid) as well. I did not get Covid . Thank the Lord for that . the rest of the family caught it. I really don't know how I did not get it. But I was very meticulous with the cleaning, washing and cleaning. like a crazy woman cleaning every thing. almost to the extreme of being OCD. 🤪

The mhra update was issued in March and I contacted my Rheumy for advice after the chest xray I had on admission in Nov showed my heart is enlarged.i have a heart scan next month.i really feel for those who can't get appointments when I was struggling after lung flare in Nov I rang and the secretary gave me appointment line number to ring.i was given an appointment 3 days later for the Sunday ive also had the hospital ring to say my renal review is over due can I go up in 2hrs time to see my consultant... it was first thing and I was still in my pjs .I'm also still on fortnightly bloods after an mmf increase and another lung flare.Im really pleased you didn't catch covid and I hope hubby improves further.

Well back to the knitting and sewing.im just sat sewing up my latest sofa rest project xxx

So pleaseed that you managed to get appts, 👌. I have been quilting a very large quilt on my sewing machine last night ,lol . just doing the boarder now. it has been a real task doing it it is huge 😂 trying to rotate this beast!!

Oh wow I can imaging the weight in it.i hope you post when you've finished I'd love to see it.ive just snapped my thread as I've pulled up the mattress stitch so I'm going to have to go back and cast off again 🙄 x

I was taking prophylactic azithromycin as well due to severe/brittle asthma and recurrent chest infections, after I saw the post on Lupus UK on Facebook regarding the interaction between this and Hydroxychloroquine, I got in touch with my GP and I was taken off this due to the the advice from the MHRA.

I contacted my Rheumatologist who said he thought as I take it 3x a week I'd be OK but as a precaution to alternate them so I don't take them at the same time until they find the cause of my enlarged heart.i have a heart scan in 2 weeks. X

I hope your heart scan goes ok. Let us know how you get on. I was taking them every day as they’re also supposed to help with inflammation for asthma, but I have a fast heart rate and my blood pressure is at the higher end of normal so we decided it would be best to switch to another one x

Thanks I was in heart failure for a year in 2014 before they knew the cause of the inflammation but I was on no meds then so this was abit of a puzzle although Rheumy did say he can't rule out the covid vaccines as the cause.I hope other meds work for you 🤞 xx

hootie26 profile image
hootie26 in reply to KnitSewPurl

to my understanding, doctors and nurses in the USA were taking Hydroxy as a preventative to Covid. At the onset of the pandemic my mail order prescription forwarded my one year supply of Hydroxy. In the package was a memo explaining why I was receiving 4 (90 days supply) bottles at once. It stated that in the coming weeks there would be a strain on the availability of the drug and that they wanted their patients to have at least a six month supply. Not long after that I was terrified reading about others running out of medication and having great difficulty getting prescriptions refilled. It was actually my eye doctor that informed me that the frontline medical providers were given Hydroxy to help fight against/prevent Covid.

hootie26 profile image
hootie26 in reply to KnitSewPurl

any and all types of light is a pain in the head for me as well. I remember once getting an eye exam the Dr asking to see my sunglasses, told her I didn’t have a dedicated pair. That was when I was educated on how having Lupus and the sun’s effect on my eyes, she gave me a knew prescription with UV 400 minimum!

KnitSewPurl profile image
KnitSewPurl in reply to hootie26

I had to argue and prove to the optician every time to get high dark coated lens to get a grade 3 shade on it as it is the recommended allowed coated darkest for driving. not sure how to get that UV 400 (not sure if that is already the recommended coating over here ) will check coat on it though as all my glasses at the moment are prescription. the worse part is that I recently had cataracts done and it is effecting my eyes so badly and the lens they put in is wrong and my eyes has not adjusted well to it I am still seeing multiple images with it and is so light sensitive and made it even worse. Seeing the consultant in June they are aware of it of the Irregularities of the eye. I am not sure if my macular has deteriorated either as I have not had any report back from all the test I had recently. So it is a waiting game to see my consultant both for my macular and cataracts.

Uv clothing, sunglasses, high spf sunscreen

I find the Sunsense brand of products quite good as I develop severe skin rash after just a few minutes in the sun! 😏

Hello Comeoknpeeps. I agree with everyone here. Most of. The clothing I wear outside has built in SPF by a company that makes UV protective clothing and hats. My skin breaks out in rashes with sun cream. Lately in the house my face goes bright red with any lights. Most are LED. So I’m going to buy new sunglasses very dark for the house. I take plaquenil as well and one of the side effects I read is sensitivity to sun! Best, Titters

The same as the others spf50 and a hat!!

Hi there,

I have just started an 8 week trial of mepacrine (on top of hydroxyxhloroquine, methotrexate 25mg injection et al) to try and get rid of the rash I've had for over 2 years that nothing else will shift. I have been told it is good, for some people, for sun sensitivity. I've only been on it for 4 weeks so it still needs time to build up, and I don't want to jinx anything by saying how it's going, so I'll report back in another month. I still need to slap on the factor 50, a good one with max UVA, UVB and long UV protection, and be sensible with the sun. I can't wear a hat, unfortunately, I wish I could, so if I really need to go out in the sun I use a UV umbrella as well as sunscreen.

Hope you find some relief. I know how depressing it is.

Take care.

Saphnelo is supposed to be the latest in sun sensitivity. I am going to start infusion this Wednesday and have found some post in here related to others experience with Saphnelo. Hydroxychloroquine can help but does have bad eye side effects which I experienced. Hats,sunscreen, sunglasses, and even the blue screen UV blocker lens help.

Hi ya

Sunblock factor 50 and wide brim hat not being in sun 11am to 3pm.

I use a blue filter on phone and pc as I react to there light.

Hope that helps

Sorry your suffering

Cotton clothing a collar on top

Good luck Whippet_lady with the mepacrine. Will you let me know how it goes please?

Thank you for everyone's comments - much appreciated. xxxxxxx

Before being diagnosed with Lupus I would bask in the sun. My eyes would hurt, skin would have problems. Not knowing my love for the sun was actually causing me more harm than good. I’m at the stage where any form of light or sun is an irritant to my eyes. Being on Hydroxy I have to have my eyes checked 2x/year, doctor has to expose me to bright light just to look behind my pupils to ensure I’m not developing blood clots. Now I wear 400 UV rated sunglasses, minimum 50 factor for skin, and always wearing long sleeves and pants for protection. Thanks for asking this question, I thought avoidance was the only option

I bought a double sided umbrella that blocs all sun. I think I bought it through a Lupus web site

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