Methotrexate reaction

[Angie4now]

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

[happytulip]

If it's spreading and "stinky" could it not be an infection? Has a Dr seen it? Also if it is itchy would an antihistamine not help?

[Angie4now]

Hi,

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.

[Hidden]

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 ?

[Potatos in reply to Hidden]

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.

[Angie4now in reply to Hidden]

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.

Best,

Angie

[Angie4now in reply to Hidden]

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.

Best,

Angie

[KittyJ]

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.

[Angie4now]

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

Best, Angie

[lillyofthevalley37]

My best advice is to take bicarbonate of soda - baking powder in US I think ?

Also GABA and natural bio identical progesterone cream

But the best thing for lukemia as you probably know is tumeric

Research found that street kids in India never suffered from lukemia it was down to consuming tumeric ?

As for the sun if you cannot cope with the sun have coffee or tyrosine both promote melanin

[Angie4now in reply to lillyofthevalley37]

I am going to try that. Do you use turmeric powder or pills.

[lillyofthevalley37 in reply to Angie4now]

You can buy turmeric in all supermarkets, it can be added to smoothies, soups etc - this is certainly the cheapest option

Not sure about turmeric capsules ?

[Angie4now in reply to lillyofthevalley37]

Thank you!

[KittyJ in reply to Angie4now]

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.

[Angie4now in reply to KittyJ]

Thanks KittyJ, I will.

[Flor1rence]

hi Angie, I would ask the doctor to refer you to a Dermatologist, they are experts in skin conditions. good luck x

[Knip in reply to Flor1rence]

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😥

[Angie4now in reply to Knip]

Hi Knip,

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.

Best,

Angie

[Knip in reply to Angie4now]

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

[Angie4now in reply to Knip]

Hi knip, I am in New York. Thank you very much! 🙏🙏,

Best,

Angie

[Angie4now in reply to Flor1rence]

Hi Flor1rence,

Actually my doctor is a skin cancer dermatologist and came highly recommended and top of her field.

Best,

Angie

[Flor1rence in reply to Angie4now]

oh that's great, hope you get sorted out soon, let us know how you are doing x

[Angie4now in reply to Flor1rence]

Thank you 😊 I will.

[widgie]

I gave up showers years ago. It seemed that the 'sharp' water droplets caused such a response I scratched the skin a lot and ulcers started to develop

I then started on baths with a small improvement...... later adding various bought or prescribed oils to the water , some of which worked

My answer for the last few years has been to stand in a few inches of bath water and use a face cloth. this seems to work adequately

[Angie4now in reply to widgie]

That makes sense. I will try that. Thank you

[65_women]

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.

[Angie4now in reply to 65_women]

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,

Angie