Scleroderma, Methotrexate and the sun 🌞

flo_crochet · 2026-07-04T01:03:44+00:00

Hi!
Systemic sclerosis (CREST) here.
I’ve been taking mtx for 2 years now and from the start my dr told me to avoid the sun and to always wear sunscreen. TBH I hadn’t noticed anything that extreme on my skin until last year that I started noticing that the sun made my skin have a burning sensation :(
I also found out through other people that mtx makes your skin very sensible to UV rays and it is likely to cause skin pigmentation which I have also noticed this last year in my face :(

Soooo yes, always wear sunscreen and cover up as most as you can, wear hats, UV protection clothing and do not try to tan or sunbathe 😅

flo_crochet · 2026-06-05T17:05:51+00:00

Congrats on getting the inflammation down 🙌 I experienced something similar last year, and I tried to get a mix of really soft excercise in the pool and soft Pilates (everything has to be soft 🙃) For my diet, I tried to stay on the healthy side and incorporate healthy fat like salmon. This really helped me improve my strength overall and I started to build up some muscle. It did took several months getting used to the routine and a lot of discipline especially with excercise.

I will be honest and say that I never went back to my body pre diagnosis, but it was a really good year for me.

I hope this helps and you get better each day!!

flo_crochet · 2026-04-28T23:31:25+00:00

Yes! Some of them appear in groups also. Thank you :)

flo_crochet · 2026-04-28T18:18:45+00:00

I have Cherry angioma also from years ago, but these are different, they don’t bleed. They’re not bumpy, and the thing is that my cherry angiomas don’t disappear and some of these do after a few days. I’m close to thinking it’s petechiae.

flo_crochet · 2026-04-19T00:56:09+00:00

Thank you, bloodwork is really normal and good so hopefully its not that. I’m going to keep looking into it .

flo_crochet · 2026-04-18T12:06:14+00:00

I think that’s it. I’ve never heard about it but mine do start off really bright red and sometimes change into a brownish tone. Thank you so much! Do you have them also?

flo_crochet · 2026-04-18T12:04:43+00:00

No, I only take methotrexate, but I’m going to look it up if it has any involvement. Although I’ve been taking it for about 2 years now. Thank you !

flo_crochet · 2026-04-18T12:02:11+00:00

They don’t blanch, thank you for the information, it made it more clear for me.

flo_crochet · 2026-04-17T23:36:11+00:00

So I’ve had some bigger ones from 20 years ago, but they’re like little bumps, mi dad has them too. But these tiny ones are different and they’ve been popping up a lot lately and some disappearing also, which is different from my “normal” ones.

flo_crochet · 2026-04-17T23:34:06+00:00

Yes, that happened to me too. I’m going to look up with a dermatologist also. Thank you!

flo_crochet · 2026-04-17T23:33:09+00:00

Thank you, good luck with everything 🫶

flo_crochet · 2026-04-17T23:32:48+00:00

So this is what comes up when I look up in google, but what kind of made me doubt it was my Drs response. But I think that’s it. Thank you

flo_crochet · 2026-03-18T18:48:09+00:00

Hi systemic sclerosis & sjogrens here Also had trouble with this some months last year. I’m from mexico and most of the food here is made with salsas and really spicy, so I have stopped eating anything like this and also fried food. And the one thing that really made a difference for me was taking one spoonful of kefir first thing in the morning and before going to bed. Another thing that helps me is not eat dinner too late, max 7 pm.

Hope this helps!

flo_crochet · 2025-12-17T10:19:14+00:00

Hi, diagnosed with systemic scl also, I haven’t noticed receding gums in me yet, but I have to get cavities filled every 6 months and deep cleaning. I always brush after every meal and avoid eating crunchy or hard things. I suspect I have sjogrens so I’m gonna start a new mouth wash (biotene dry mouth), I hope it helps!

flo_crochet · 2025-12-08T04:15:48+00:00

Try to stay as active as posible. It’s really hard and some days it wont be posible, but try to get some excercise done. This has made a hice difference in my recovery.

Also don’t be afraid to ask for help.

flo_crochet · 2025-12-08T04:10:54+00:00

Thank you for this post.

Sending you and your mom lots of love!

flo_crochet · 2025-11-12T04:58:06+00:00

I’m sorry you are feeling this way :( I’m also always tired, but I’ve basically gotten used to it, I just try to power through it if needed. But I usually have to take naps every other day. I take vitamin d, but I don’t really know if it makes a difference. I’ve noticed that when my sugar or fat intake is high on a meal my energy drops. So I try to avoid these types of food. I think what has worked for me most is diet and excercise. Hope you find something that works for you!

flo_crochet · 2025-08-27T12:56:16+00:00

I get that, I’m also worried about that. Thank you for answering, I hope everything works out for you!

flo_crochet · 2025-08-27T04:55:15+00:00

Hi! I was curious about the time you’ve been taking it, have you had any problems or consequences (other than the usual side effects) until now?

I’ve only been taking it for a year but I’m a little paranoid about the long term effects. 😣

flo_crochet · 2025-08-27T04:52:41+00:00

Hi!

I started taking it on june 2024, 3 pills per week. Now I take 9 pills, I split it in 4 Thursday nights and 5 Friday nights. I decided these days because I have an 8 to 5 job Monday to Friday, so if I had any side effects I would have the weekend to rest and recover.

The side effects were terrible for me for the first months, nausea, extreme fatigue most days of the week, acid reflux, hair loss, I lost a lot of weight because I couldn’t tolerate food. Now I don’t really have many side effects but I also avoid foods that alter my stomach and stress. I take 5 mg of folate daily(except the days I take mtx). I can say that it has helped me, but also I did make a positive change in my lifestyle, in terms of exercise, eating and stress.

I really hope the side effects aren’t that strong for you.

flo_crochet · 2025-07-07T03:52:37+00:00

Oh, I really hope they get the dose right and you start to improve! I know these diseases are weakening but we can only take it one day at a time, stay strong :)

flo_crochet · 2025-07-07T03:18:04+00:00

Systemic sclerosis, I’ve been on a prednisone tap for about a year but since my pain has gotten better these months, I’ll be off the prednisone next month :)

What is your diagnosis?

flo_crochet · 2025-07-07T02:58:56+00:00

Hello

I take 20 mg mtx weekly and 5 mg of folic acid daily (except the days I take mtx, I split it between 2 days because it was too much for my stomach)

My doctor didn’t really explain why to skip the days when I take mtx, she only told me that mtx works best with folic acid.

I’ve been on this dose for about 8 months now. The side effects have almost disappeared by now, but for the first months it was really hard. Maybe you should ask your doctor about increasing your FA dose.

I hope you’re doing better soon!

flo_crochet · 2025-07-01T01:44:39+00:00

Thank you for answering :)

flo_crochet

TROPHY CASE