Hi everyone, my name is Angie and I am a CLL patient and was recently diagnosed with Lymphomatoid papulosis and put on 10MG of methotrexate along with Folic Acid except the day of. The first three weeks I forgot and took both. After four weeks I stopped because I noticed I was developing a new skin condition. I went to the doctor and was instructed to stop the MTX and find a Dermatologist in my area and do light box therapy. I haven’t been able to find someone in my area. I reached out back to my doctor and the RN called and said she would have some call me back. My skin condition has multiplied dramatically and it’s very stinky and itchy. I feel super uncomfortable. Has anyone developed any skin reaction while on MTX. I contacted Pfizer and left a message for a call back. I am absolutely going insane. Yesterday I tried the ocean, the water was cool but it felt great and I didn’t feel any itching until I came home and showered. I am including a picture. My entire body arms, legs, back, underarms all full of these spots and it feels terrible. Also, the doctor prescribed Triamocinolone Acetonide cream, which hasn’t relieved anything. Please advise if anyone on MTX has had a skin reaction. Thank you
Best,
Angie
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Angie4now
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I meant “stingy” yes the doctor saw it and prescribed a cream and I am taking Benadryl. Unfortunately no relief. It was a side effect of the methotrexate. Thanks for your response.
I’m not sure . I did get a similar rash but was due to being photosensitive because of MTX . It itches like hell and was stingy took about 9 weeks to go. Have you been in the sun ?
I also am very photosensitive since starting MTX. It looks similar to the photo. Mine is always very itchy and takes weeks to resolve. Mine is however restricted to the areas that have been in the sun.
Actually I wasn’t in the sun. When I developed this skin reaction and my doctor saw the skin issue and I informed her that I have not been in the sun. She recommended that I get sun. I was confused being that I am a CLL patient and just stopped MTX. Yesterday, I did go to the beach wore a wet suit and stayed in the water for a while my skin didn’t itch or sting. This skin reaction developed when I wasn’t in the sun, my doctor recommended light box therapy. I am confused if it goes away on its own I can wait. It seems to multiply. Thanks for your response.
When you say photosensitive you mean the therapy, because that’s what my doctor recommended box light therapy. I haven’t received an appointment. Wow! Nine weeks is a long time feeling itchy & stingy. I avoid the sun. My doctor told me I shouldn’t. Yesterday I went to the beach and I wore a wet suit, it felt great no stinging or itching until I took a bath.Did you apply anything on it. I am concerned that it ulcerate. Thank you for your response.
Have you considered it is something you are using in the shower or bath that you are having a reaction to? If it stops when you’re in the sea and comes back in the shower and bath I’d think it was something I’m putting on my skin. If you stopped mtx weeks ago it shouldn’t be getting worse. Just a thought.
It’s nothing that I am using. I believe the ocean water help relieve it. In addition the water was gold it sort of shrunk it when I was in the water. Thank you
Angie please check with your doctors before taking any supplements, for contraindications. We are not medically qualified to tell you what to take. Please be careful.
Gosh, Angie, that itching must be driving you mad...and I agree with Flor1rence that you need a rapid referral to a dermatologist. It's making me itch just reading your post and seeing your photo. GPs are good but they have knowledge about so many things that they can't be experts in everything. I hope you get some help and relief soon. If the sea water helped could you try draping a wet towel over your back. It might give you a bit of relief. Just a thought. x😥
I tried soaking in epsom salt, It didn’t help as much as the ocean, but provided a bit of relief and used Lavender oil instead of the tropical cortisone (triamcinolone acetonide cream). that my dermatologist prescribed and took a Benadryl last night. I actually slept good. Being that my entire body is covered except for my face and ears I was afraid to apply the cream all over my body. My doctor also prescribed light box therapy and instructed me to find a dermatologist in my area to perform. I couldn’t find a dermatologist in my neighborhood that performs the therapy. I was reading about it and I have mixed feelings. Thank you for your response.
Take care Angie. I'm guessing you aren't in the UK. I think we have it easier over here with the NHS, although it's under pressure at the moment due to Covid. Sometimes though it still pays to go privately to get to see a consultant more quickly. I really hope that terrible rash you have will clear quickly...it must be driving you mad. Really glad to hear that you got a good night's sleep. That makes such a difference. God Bless, x
Well from studying a bit on Chinese medicine anything rash on the skin any itch on the skin, is caused by an over active liver. Methotrexate is very hard on the liver.Read on Chinese medicine or talk to a Chinese medicine doctor they will tell you.
I went to my primary doctor on Friday and he ran blood works. I should get the results tomorrow. That’s a great idea I will read up on Chinese medicines. Thank you very much.Best,
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