If you suffer significant hair loss, like I did, while taking mtx, there could be a genetic reason. A recent DNA test revealed that I have the MTHFR A1286C gene mutation (homozygous, for me--from both parents). This gene mutation is apparently fairly common especially in European ancestry. People with this mutation cannot process synthetic folic acid. So all the synthetic folic acid supplements in the world would not have made any difference. If you are on mtx and hair loss is a problem, ask your doctor about the MTHFR mutation. It could be the culprit!
Interesting info for those with hair loss on methotre... - NRAS
Interesting as I had this but no other side effects. So I kept the hair it came out in handfuls whilst I'm lucky and have very thick hair it was really noticeable and upset me. So it wass topped and I was given Arava which has left my hair alone and I feel great.
That's interesting. Did you get given an alternative folic acid or just told to eat 20kg or parsley a day?
I was taken off of mtx because of the hair loss about 4 years ago. Nobody said anything about a possible gene mutation at the time. I only discovered the mutation a few months ago and then made the correlation. I was taking a folic acid supplement just because I thought it wouldn't hurt, but I have since stopped it because it is only mucking up my system. I am consciously making the choice to eat more greens now. This mutation affects people undergoing chemo and those trying to get pregnant, also. I'm surprised there is not more information about this being shared publicly. Maybe in time.
Presumably that would effect all side effects of mtx? Which would explain why some people like me don't seem to get any side effects (touch wood) while others, such as my cousin, think it's a horrendous drug.
My friend is a nutritionist and I was talking to her about my methotrexate the other day. I have had to stop it due to side effects. She said she thought I probably had a gene defect which means I can't absorb synthetic folic acid. She said I would need to take a particular form of non synthetic folic acid together with sub lingual B12 again the non synthetic form
Would be nice if doctors mentioned this genetic culprit to patients before going on methotrexate. Maybe it's just my experience with doctors, but it seems us patients are more well informed than these specialists when it comes to certain things.
For example, every RA doctor I've spoken with is unfamiliar with turmeric paste or LDN. For my vitamin D deficiency, my doctor put me on D2 supplements, even though I told her that vitamin D3 is much more easily absorbed. Doctors told me that Accutane was safe, as was Prilosec and Effexor. It's no wonder patients have to often times resort to self treatment.
Anyway... thanks for sharing this information. It will be good to know if/when it's time to go on Methotrexate.
When I see a doctor, I ofttimes ask questions just to see what they say. Answers are many times different between doctors and different than all my research. I believe it is in the patient's best interest to educate themselves and then combine all information to make the best decision for their health.
Incidentally, I would NEVER call Accutane a safe drug. It serves a purpose, but it should never be taken lightly!
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