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Dermatomyositis: Does anyone else struggle with summer and sun?

Posted by missamy @missamy, 2 days ago

I was diagnosed 3 years ago. Now on rinvoq and IVIG infusions twice a month. Summer is hard due to the sun setting off inflammation and pain/flares. Does anyone else struggle with living daily life out of the sun?

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minnesota10 | @minnesota10 | 1 day ago

I’m so sorry to read what you are dealing with. But I kinda understand I have photodermatitis, which means the sun is not my friend. It is my enemy.. I have to be careful wear a hat. I have a number of them., I wear long sleeves and then hot sun that are light and flowing, And I do wear driving gloves time to time to protect my hands when I’m driving.
I wish you the best and navigating the waters and learning how to control your dermatitis issues..
Wish you the best

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pm56 | @pm56 | 1 day ago

It is important to stay out of the sun if you find it triggers rashes for you - many use the rashguard shirts with a built in UPF of 50, wide brim hats, high SPF creams etc.

How are you finding the combo of IVIg and Rinvoq? Does it seem to be working for you?

I have DM, but I’ve been dealing with RA and spondyloarthritis for about 7 years and started testing positive on the myomarker as soon as I stopped the new biologic I had a bad reaction to. It’s likely DM was underlying all along but just never picked up.

I’m on Rituxan and starting SCIg next week (I got a clot in the brain after IVIg so no more IVIg for me!). Hoping that if it works, I can recertify to drive so I can be more independent and finally get out of the house 🙂

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minnesota10 | @minnesota10 | 23 hours ago
In reply to @pm56 "It is important to stay out of the sun if you find it triggers rashes for..." + (show)
Profile picture for pm56 @pm56

It is important to stay out of the sun if you find it triggers rashes for you - many use the rashguard shirts with a built in UPF of 50, wide brim hats, high SPF creams etc.

How are you finding the combo of IVIg and Rinvoq? Does it seem to be working for you?

I have DM, but I’ve been dealing with RA and spondyloarthritis for about 7 years and started testing positive on the myomarker as soon as I stopped the new biologic I had a bad reaction to. It’s likely DM was underlying all along but just never picked up.

I’m on Rituxan and starting SCIg next week (I got a clot in the brain after IVIg so no more IVIg for me!). Hoping that if it works, I can recertify to drive so I can be more independent and finally get out of the house 🙂

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@pm56
I’m not on the medication you are taking and I have to be just plain careful.
I’ve had the sensitivity to the sun most of my life since early childhood.
Have you done skin testing for chemical chemicals? I know for me I am highly sensitive to chemicals and there are so many things out there that are supposed to be safe, but are not safe.
Medication’s are really bad as I also have an egg white and a milk allergy. Both of these are in a lot of medication’s also, they have an inactive group on medication. For me if it’s active or inactive, I will react.
I have found also certain times of the year I react worse. They tell me the sunshine changes throughout the year as to what is actually in it.
Also, there is aluminum and medication’s the coloring. I can’t have aluminum coloring.
I hope this can make you start thinking what else might be triggering your reactions and I do wish you the very best

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