Methotrexate for Delayed Pressure Angioedema
watershelly posted:
Rarely is there any information on my condition: Delayed Pressure Angioedema/Urticaria. This disorder started about 20 years ago after my second child was born. I started waking up with hives from head to toe, swollen eyes, lips, and pain in the deep tissue of my skin - particularly where there had been pressure on my skin - walking, sitting, using my hands to cut things for dinner, driving, wearing tight clothes, eating hard fruits such as apples - swelling seemed to be brought on my everything! Well, it took nearly 10 years to get a correct diagnoses - I had been told I had lupus, scleroderma, and others, but all docs agreed that it was an autoimmune condition. I believe my rheumatologists categorizes it as Undifferentiated Mixed Connective Tissue Disease. Anyway..... after tons of cocktails of meds over the years, I was put on 15 mg of Methotrexate this weekend, in conjunction with 150 mg of cyclosporine and prednisone as needed (which was frequently before the MTX). Hoping the MTX will alleviate the need for the other drugs eventually. Having some stomach upset but not too bad, and a bit of hair loss - but it is early on to tell what the longer term symtoms will be. From all that I've been reading on this site from so many people, side effects vary from person to person. I am also taking 800 mcg of Folic Acid to combat mouth sores - I hear that it helps with hair loss as well.
peppernf responded:
Hello. I really hope that all goes well for you and that the MTX works well for you. I have been using MTX for more than 10 years, and am using 25mg per week now. The really helpful things to know are: drinking alcohol is a no-no. It makes you feel awful and can exacerbate liver damage; vitamin B and folic acid (but NOT 24 hours either side of the MTX dosage - it cancels the effect) is helpful in managing the symptoms. Regular blood work to check liver enzymes and general blood count are important. Otherwise - eating healthily with lots of fruit and vegetables, which is pretty standard. I really hope that things improve for you, and that MTX turns out to be the right thing for you. Take care of yourself.
watershelly replied to peppernf's response:
Thank you for the helpful words... I did know about the alcohol, bbut did not know about not having folic acid (and vit. within 224 hours of the MTX dose... my dr never mentionned this to me...Thanks again
khyre replied to watershelly's response:
No, take the methotrexate at the SAME time as the folic acid. It apparently has a different mechanism when treating delayed pressure urticaria/angiodema.

You're only supposed to avoid folic acid when taking MTX for treating cancer and that type of thing.