Methotrexate : I was just prescribed Methotrexate... - LUPUS UK

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Methotrexate

Lisalu profile image
18 Replies

I was just prescribed Methotrexate for RA today and I have heard so many negatives about it. One major side affect is HAIR LOSS.. I have very long hair and it has already been falling out due to the illness itself, I can't afford for it to get any thinner. Just wondering if anyone has been on this drug for a long time, how much of your hair falls out? A lot or a little? I'm really scared to start this new med. And how long did you have to take it to be able to tell a difference in the way you feel? Please help!

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Lisalu profile image
Lisalu
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18 Replies
diane46 profile image
diane46

Ive been on this for 4\5 months and my hair is coming out but not has much has before med its calmed down don't be scared because the benefits for out weigh the side effects I feel great

Lisalu profile image
Lisalu in reply todiane46

Thank you diane46 .. I am feeling much better now about taking it.. all of these positives on this community have really helped!

Bronagh2015 profile image
Bronagh2015

Hi Lisalu, I agree with Diane46, my flare ups were causing more hair loss than the methotrexate ever did! These drugs are very expensive and your consultant would not have prescribed them unless really necessary. Give them a chance and try not to worry too much as stress doesn't help any of us. Good luck 😀

tazzydevil profile image
tazzydevil in reply toBronagh2015

Hi. Ive been on mtx 6 weeks now. I too was scared to take it but actually its been ok. A bit of a funny tummy and a bit tired and groggy but all this is very mild. I think i can tell a difference already but its early days. Its nowhere near as bad as i was imagining. I hope it works for you.

Lisalu profile image
Lisalu in reply toBronagh2015

Thank you bronagh2015..it seems I stay stressed since being diagnosed. .lol.. I'm gonna tke the med tonight.

Wendy39 profile image
Wendy39

I do have lupus but am not on methotrexate myself, but I know 2 people who are on it. One has had lupus for 10 years and has struggled with various lupus symptoms including hives and very reactions to the sun. She has tried lots of medications over the years with not much luck. She started methotrexate last summer and says this is the best she has felt for years. She swears by it. The other person I know takes it for juvenile arthritis - by weeky injection. Been on it about 18 months. Again swears by it. For these 2 people, the pros definitely outweigh the cons. I hope it works for you too. Best wishes.

kittykat68 profile image
kittykat68

Hi im in my 5 TH year of taking methotrexate and its a God send, it does take roughly 6 8 until u feel the benefit, I take mine Monday eve 930 make sure u dont take it on an empty stomach as its not good on ur stomach, I also take domperidone for the sickness and omeprazole for your stomach and a must is folic acid twice a week,I also take 300 mg plaqunil,Never take them borh together ur stomach wont allow ull be straight inthe toilet nobody tells u this i found out the hard way, hope.Ive helpedx

Lisalu profile image
Lisalu in reply tokittykat68

Thank you kittykat68. I'm also taking mine on monday evening. . I'm keeping my fingers crossed..

misty14 profile image
misty14 in reply tokittykat68

Hi Kittykat

Saw your Methotrexate post and I know from experience that you take Folic Acid every day except the day you take your Metho dose. X

kittykat68 profile image
kittykat68 in reply tomisty14

Ty for ur reply misty14 but as u know every lupy is different, I take 2 folic a week as perscribed by rheumy

misty14 profile image
misty14 in reply tokittykat68

Hi Kittykat

Sorry to say but your Rheumy is wrong with prescribing Folic Acid. As long as your not getting side effects from the Methotrexate then it's ok but if that changes you might want to ask him or your lupus nurse!. X

kittykat68 profile image
kittykat68 in reply tomisty14

misty14 its not a rheumy ita a dermy and they are not wrong as you will read in the passage below each lupus person is different wot may work for you may not work for me and so forth... so happy reading !!!A) Methotrexate suppresses cells which are metabolically active. One of the ways it does this is to antagonise an enzyme involved in the metabolism of folic acid. The enzyme is essential for cells to go about their business, and methotrexate in effect stops them doing this. This is fine when you're hoping to control the action of cells involved in inflammation but an unwanted spin-off is that it affects other active cells such as in the immune system, the stomach, the hair and the ovaries. In fact the drug suppresses any tissue which is ‘active’, that is, has metabolically active cells in it. Now, because of its action on the enzyme involved in the metabolism of folic acid, giving relatively large doses of folic acid acts as an antidote to the drug. If you were to take the folic acid on the same day as the methotrexate it would undoubtedly reduce the effectiveness of the methotrexate. But giving the folic acid on the other days of the week avoids this reduction in effectiveness and also prevents some of the side-effects (these can be guessed from the other target tissues listed above). Traditionally folic acid has been given on each of the six non-methotrexate days but there are some rheumatology departments now using folic acid only three times a week, or even only once a week. Incidentally, I presume you meant to write that you took methotrexate five tablets on one day a week, and this was then increased to six tablets on one day a week – methotrexate is normally a one-day-a-week treatment. - See more at: arthritisresearchuk.org/art...

I have a diagnosis of RA (have you tried asking this on NRAS HealthUnlocked too as most people on the RA community use Methotrexate at some stage?). I was on Methotrexate for two years by pill and later by injection. It worked fairly well for my RA and I did suffer plenty of side effects including to my liver but I never suffered any hair loss at all. I did have alopecia several times as a child and young adult so this was one of my great fears but it really wasn't realised at all. Good luck!

misty14 profile image
misty14

Hi Lisalu

Just to reassure you the doses they use for Methotrexate are much lower for our illnesses than for cancer treatment. When I took it it so helped the arthritis and stopped my hair falling out. It can take up to 3 months to work so patience is needed which is hard when we're I'll. Good luck I hope it works well for you. X

tazzydevil profile image
tazzydevil

I think the folic acid dose must be different for different people. Some people take it daily, others twice weekly, i take it just once a week. Tho i ran out once and didnt notice a difference.

Musicteach profile image
Musicteach

As many have said, it truly is a Godsend. I have been on methotrexate for three years and am on the maximum dose, with folic acid weekly and It makes a huge difference to my life. It does take time to kick in, but once it does, the benefits are very noticeable, and my hair had thinned, but is much thicker now. Good luck and I hope you will keep us in the loop as to how you progress.

Tiras profile image
Tiras

I have lupus and been taking methotrexate for around 2 years. Not sure if it is the meds or lupus but, I have no body hair at all from neck to toes. Hair on head got a little thiner. I did not loose enough to tell it. I look at the bright side, I don't have to shave or get brazilian waxed now.

Lucymay profile image
Lucymay

Hi Lisalu l have been taking methotrexate for 3 years, and have been taking folic acid once a week. Luckily my hair has not fallen out, in fact it was falling out more before l took methox. For me it took a few montgs to get the full effect, but worth waiting for. I take 17.5mg weekly. Hope this will help you. Good luck let us know hiw you get on with it.

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