Rheumatoid Arthritis: The sun is too hot!: Hello to all... - NRAS

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Rheumatoid Arthritis: The sun is too hot!

trevo profile image
22 Replies

Hello to all of you good people. I have just joined this forum and I I hope I will be able to both give and receive help/advice/experience through so doing. 11 years ago, I was diagnosed with Palindromic rheumatism, have been diagnosed with RA for 10 years and have taking medication for 10 years. Having gone through the steroid, larger Methotrexate and Hydrochloroquine doses, I had declined the Humera for about 18 months due to a fear of injections but My prescribed meds are now reduced to; fortnightly 40mg Humera pen injections (I'm due to be changed to the cheaper version in April), weekly 10mg Methotrexate, daily 200mg Hydroxychloroquine and weekly 5mg folic acid. I also take Vitamins B,C,D and E (almost daily). So far not too bad and my last blood test showed CRP at 3 and ESR 27. However as Spring arrives early (hopefully) and the days lengthen, the sun stays in the sky longer and due to the side effects of the medication tries to incinerate me. Am I right in thinking that this is a consequence of the Methotrexate? If this is the case I was thinking of asking to come off of the Methotrexate and just take Humera. Does anyone have any experience of or advice on this?

Many Thanks.

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trevo
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22 Replies

I've been on MTX for around 20 years, and the sun doesn't bother me. Although anyone on MTX is advised to "Avoid direct sunlight. Methotrexate causes an abnormal skin reaction if you are exposed to sunlight. You could develop severe redness, pain, and peeling of the skin. If you are in the sun, use sunscreen on your skin and wear eye protection and a hat."

Simba1992 profile image
Simba1992

The same applies for Humira, unfortunately:(

rab1874 profile image
rab1874

Welcome Trevo I’m on mtx and have just switched over to malimunub from Humira and took my 1 dose on Sunday so hopefully it’s as good as Humira was, I would just reiterate what the others have said and use plenty off sun cream and avoid the midday sun plenty people here will give you good advice

AgedCrone profile image
AgedCrone

I honestly think it depends on how you reacted to the sun before taking Mtx. I have always been comfortable in the sun, & found no difference when taking it.

I took it for 7 years,& never burned....I was only as careful as usual....I did use good sun creams, & didn't lay out in the mid day sun .

Guess it's trial & error.

nomoreheels profile image
nomoreheels

Hiya trevo, welcome. Certainly both MTX & HCQ can cause sun sensitivity. Like everything though we each respond differently, much depends on if you tanned easily previously, no burning mind. I do & lived through very hot summers with both DMARDs & neither affected me, even taking my 'prescribed' daily 20 or 30 mins Vitamin D without sunscreen. Obviously if you're being affected then cover up in cool, fine, natural clothing, a hat if you find it's necessary & increase the factor of your sunscreen. If it's still a problem then the only thing I can think is to keep out of the sun between 10am & 4pm as the sensible natives tend to!

Simba1992 profile image
Simba1992

This is what science says about drug induced photosensitivity.

dermnetnz.org/topics/drug-i...

nomoreheels profile image
nomoreheels in reply toSimba1992

How very odd. The most commonly questioned here, confirmed as causing photosensitivity (increased sensitivity to sunlight/skin sensitivity), MTX, isn't listed yet it's one of it's most commonly reported side effects (NRAS).

Simba1992 profile image
Simba1992 in reply tonomoreheels

I was also suprised that no biologics or Mtx was mentioned. I did look around a bit to find info but didnt find any research on photosensitivity and RA meds. One link that stated that research hasn't been done enough. Perhaps it's more of a precaution that real evidence(?)

nomoreheels profile image
nomoreheels in reply toSimba1992

Keeping on the New Zealand info their medsafe.Gov website for MTX states under side effects - skin & hypersensitivity reactions - Erythematous rashes, pruritis, urticaria, dermatitis, photosensitivity, skin depigmentation/hyperpigmentation, vasculitis, petechiae, ecchymosis, telangiectasia, acne and furunculosis/folliculitis have been reported following methotrexate administration medsafe.govt.nz/profs/datas...

Simba1992 profile image
Simba1992 in reply tonomoreheels

Photosensitivity is mentioned separately for RA drugs but looking at them as a group and target for research cannot be found.

nomoreheels profile image
nomoreheels in reply toSimba1992

The link I gave is specifically relating to MTX yes, not other DMARDs, anti-TNF's or biologics.

This is just one listing of RD meds that can be related to photosensitivity everydayhealth.com/rheumato...

Others (anti-TNF's) include adalimumab, infliximab, golimumab, etanercept & certolizumab pegol, I would think their biosimilars too though I've no evidence to support that.

Simba1992 profile image
Simba1992

Looks like photosensitivity should be taken seriously when on RA meds. Not so much a question of if you usually burn easily or never. The drugs seem to change the chemical composition of skin that may react with the UV and light from the sun.

MarshaM profile image
MarshaM

When I started taking the methotrexate and plaquenil the sun felt really hot on my skin but after a couple months it didn't seem to bother me anymore. So I still play tennis during the day when the sun's out and I don't feel like my skin is burning anymore I always use sunblock. One of the side effects of plaquenil and MTX is sensitivity to the sun.

corrective profile image
corrective

So I have suffered from rheumatoid since I was 24 years, now 57. My daughter suffered fromsvt(heart) which hindered our ability to use puffers for her asthma. I researched and found certain essential oils could treat the asthma. While she was growing up my ra was controlled as I always had the oils on my skin being absorbed. I studied aromatherapy. I never acknowledged the connection so as she grew up I stopped practicing aromatherapy! Since I turned 50, I had a bone morrow test, they caused a peripheral bleed and was put in a induced coma. It took a long time to start to walk but I continued to work! My next event in 2015 I fell in the house and broke my back!then 2016 I went to Fiji and returned with meningitis where I was hospitalised for months again almost last song my life! I went home at Xmas and 8 days later I was rushed to hospital after bleeding from the nose and mouth. The anethesized me three days running and eventually opened me up for major surgery, died twice but revived. After being released from hospital I attended a surgeons appointment where I fell on the driveway and broke my hip. Twelve months later I drove out west 400km for my grandsons bday. I had felt really well. The next day I could not get out of bed, tired lethargic, not eating or drink fluids. At the end of the day my daughter came to cheap on me and called ooo. I was rushed to Dubbo ICU where I spent a week and then airlifted to Newcastle ICU for a week. Again I was told I wouldn’t make it till morning to make arrangements I was dying. I got ra at 24, felty syndrome at 40 and Leaukemia at 53. February 2018 My daughter(rn) came home and then talked essential oils and asked if I would use them again. Since then I have taken a cell repair essential oil treatment and living a new real life. In February 2018 I could not eat I am 5’7” and weighed 55 kilos. I was bedridden showered by the nurse then put back to bet or in a recliner. I could drive or walk out doors I don’t believe in fasts but the proof was in the pudding. Good luck everyone

cathie profile image
cathie

I’m not sure how relevant this is but I developed a sensitivity to sunlight + perfume in skin creams. I’d been taking methotrexate for about ten years but have no idea whether that was connected. I had a red face and puffy eyes which one rheumy thoughts might be lupus but it wasn’t. Just using perfume free creams (cheaper) has sorted it.

trevo profile image
trevo in reply tocathie

Many Thanks Cathie

BonnieT profile image
BonnieT

Hi, Trevor! Welcome. I started methotrexate last February and found that during the summertime I couldn’t stand to be out of the air conditioning and didn’t spend much time outside. So it does seem that the med may be the culprit to that aspect.

BonnieT profile image
BonnieT in reply toBonnieT

Sorry autocorrect changed your name, trevo!

trevo profile image
trevo in reply toBonnieT

That's fine. It is.

-Terry profile image
-Terry

I've been on MXT and HCQ for many years and have only just found out about keeping covered in the sun from my Arthritis meeting. Last year I had to have a skin graft on top of my head due to BCC also behind the ear. I'm not sure whether this is due to the tablets , but I wish I had known before.

RedPip profile image
RedPip

It is the Methotrexate (MTX) , I have been on MTX since 2013 and Cimzia and MTX since 2014 , I have got the MTX reduced down from 25 mg to 15 mg and have to put factor 50 suntan lotion on even in the winter , the sun tan location does not give you 100 % protection so keep covered up and wear a hat that's all I can advise

trevo profile image
trevo

Thanks for all the replies. It appers my original cupposition was correct. Has anyone managed to come off of the Methotrexate and just use Humera?

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