Hair Loss

[Danica]

hi Everyone,

Just wondering if anyone has experienced sudden hair loss. I have been on the same meds for almost 3 years now withthe exception of adding tecta for acid reflux back in may. None of the meds i am on will cause hair loss but all of a sudden over the past 2 months is is c oming out at a rapid rate and i have no signs of new growth. At this rate i will be bauld by x-mas.

Any ideas?

[Pete]

You might want to ask your doc about folic acid. I take 1 mg/day to counter hair loss side effect of methotrexate. Seems to be working so far (16 months).

[Dirty Don]

I am on mtx and pred...I had a lot of hair fallout then Mayo prescribed 3 mgs of folic for me. Hair came back with a rush...even had curly hair for a while! LOL!

[NikkiNicole]

My hair is starting to thin. I am this close to shaving it all off because it's thin in a stripe on the back of my head!

[Danica]

Thank you for the folic acid idea. I will talk to the docs about it when i go in next week. I have had curly hair my whole life and would to keep it. It just feels like one more thing right now on top of all the other life changes over the past 4 years. Do you ever feel like you could take a vacation from yourself for a week or so for a breather? lol. if only.

[Dirty Don]

Thank you for the folic acid idea. I will talk to the docs about it when i go in next week. I have had curly hair my whole life and would to keep it. It just feels like one more thing right now on top of all the other life changes over the past 4 years. Do you ever feel like you could take a vacation from yourself for a week or so for a breather? lol. if only.

Yeah, it seems to work well with no side effects at all. Keep the curly!! We do need vacations too, from ourselves as we exist now...but sometimes the vacations can be dangerous now for us too! LOL! It's a rollercoaster at best from here on out...I'm not a kid anymore, hate rollercoasters! LOL! Not really...just too old...hehe! Hang tough, listen to your body, and get good docs!

[Dirty Don]

My hair is starting to thin. I am this close to shaving it all off because it's thin in a stripe on the back of my head!

I wanna see a pic! LOL! Are you on folic at all? Should be, it does help many.

[annekat]

Don and Pete, are you implying that folic acid mainly works for people experiencing hair loss as a result of taking MTX? Or would this be true for ANY hair loss, such as that from CTX or the intensive chemo that cancer patients get? Or even hair loss from old age? Just curious. Folic acid is cheap!

[Pete]

Don and Pete, are you implying that folic acid mainly works for people experiencing hair loss as a result of taking MTX? Or would this be true for ANY hair loss, such as that from CTX or the intensive chemo that cancer patients get? Or even hair loss from old age? Just curious. Folic acid is cheap!

Speaking for myself, I was prescribed folic acid to prevent hair loss while taking mtx. I did not take folic acid during the 16 months I took ctx. I did not experience hair loss on ctx.

[annekat]

Speaking for myself, I was prescribed folic acid to prevent hair loss while taking mtx. I did not take folic acid during the 16 months I took ctx. I did not experience hair loss on ctx. Hmm, that's interesting.... I kind of got that impression from Don, too, in various posts, that it might be MTX specific as far as folic acid preventing hair loss. However, I DID experience hair loss on CTX and think other people have, too. When I started tapering it and went off it, and switched to MTX, the hair loss definitely slowed down.... but then, I started taking folic acid with MTX, too.

[Danica]

just read up on folic acid / hair loss, it will will work for anyone experiencing hair loss as it contains stuff your body may not be getting enough of. I am going to go get some after work. Thank you for all of the kinds words. Pics will follow soon. Just not too fond of the body by prednizone at the moment. haha. I do have a great team of docs and have just added a new one for the hair problem that i will go see on the 21st. I will keep you posted. It could be sress related too. They say to look back 6 months and see what stressers you had. Dad had a major heart attack, i was coming out of a major rough patch in my marriage and was diagnosed with stenosis. all within a month. I also like to internalize. I have been noted for keeping problems inside to spare the ones around me. not always the best way to deal with things, but a very hard habit to break away from. Maybe yoga. Yup i think i will try Yoga. That will make me a calm person for sure. Right?

[annekat]

Thanks for doing the research, Danica. Even though you still aren't sure quite why you got the hair loss, I hope the folic acid works! I buy it at a discount grocery store right off the shelf in the supplement section for less than $2, if I remember right. It is 800mg. pills and then my multivitamin has another 200mg. for a total of 1000mg. Maybe I'll step up the dose and see if my thick, curly hair comes back to its former glory!

[Alysia]

Hi Danica.
suuden "big" hair loss can be the result of stress/ trauma/ something scary that comes suddenly.
mtx caused me a bit of daily hair loss so I am taking: folic acid 5 mg per day, avazinc, multivitamin which is called "strong hair". in addition I found 2 kinds of shampoo that stopped the hair loss. one is with Obliphica. the other I bought in my barber shop, it is called Sarina. it is very expensive but I prefer to stay with my hair "on". enough is enough with that disease.

[carriej22]

I started losing my hair when my imuran dosage went up. About 30% of my hair or maybe even more.

Luckily it stopped; and is now beginning to come back.

[Boonickel]

I'm with you, hair is falling out. Folic acid didn't help. Driving me nuts. I have hair past my shoulders and its like the hairline is moving up. Instead of it being at the bottom of my neck my hairline is about midway up.

[annekat]

I'm with you, hair is falling out. Folic acid didn't help. Driving me nuts. I have hair past my shoulders and its like the hairline is moving up. Instead of it being at the bottom of my neck my hairline is about midway up. Sorry to hear that. Maybe try more folic acid? I think Don said he takes about 3mg. per day, which is 3x what I take. In any case, I hope this condition is only very temporary for you! Best of luck to you.

[NikkiNicole]

I take folic acid, it doesn't seem to be helping. I usually part my hair on the side and the back part of the part is getting bigger. It's a gradual loss, thank goodness. I'm not finding huge massive chunks of hair in my hands or on the pillow.
It's just par for the course for me. If I have to shave my head, I will.

[Allisonquast]

Is ctx cyclophosphamide?

[me2]

Is ctx cyclophosphamide?

Yes, we use "ctx" as abbreviation for cyclophosphamide. Also known as Cytoxan .
When I used lots of it thirty some years ago, as a young man, I lost lots of hair. Later it all came back. Now I'm loosing it again.
Except this time its because I'm an old guy. Not a bad way to loose hair.

[mishb]

Mine just got very thin and thinner on top, so like Nikki, I also part mine on the side to try and cover the little thin parts.

More folate has produced curlier hair with Shirley Temple curls for me.......and if I brush the curls, then my hair is a mass of - frizz :razz:

Oh the joys

[windchime]

Has anyone experienced any hair loss with just the predisone? Yesterday while combing and blow drying my hair I noticed about 3-4 times more hair coming out than normal. Could it just be the stress? Any ideas?

[Dirty Don]

If you've been on pred already for a while, then one would suspect the stress. And stress can be caused in an offhand way by pred in that it makes some manic and anxious while on it at first.

[Boonickel]

haha that's my natural stuff.

[windchime]

If you've been on pred already for a while, then one would suspect the stress. And stress can be caused in an offhand way by pred in that it makes some manic and anxious while on it at first.

I started 40 mg a day last week down to 30 mg starting today. Was on a 6 day dose pak the week before that. Not on any other WG drugs yet. Waiting for the second opinion to come in and the doc to get back in town.

In addition, I kind of expected to feel better by now (I'm an inpatient sort especially with illness). Although my breathing is getting better I still more or less feel like crap. :confused1:

Of course there is stress. Not working, waiting for my short disability to kick in, which will only be 50% of my regular income. Not complaining though, better than nothing. Has anyone in the US been successful in getting Social Security Disability for this?

[annekat]

it could take some time to feel a lot better. Getting some real Wegs drugs might speed up the process, though pred alone can help a lot with symptoms. You need the real Wegs drugs to stop the disease in its tracks. If your breathing is getting better, that is a good sign.

I was successful at getting SS Disability for this, so I would go ahead and apply if I were you. You might want to wait for a current dx, though I realize you were dx'd in 1972. WG is on a list for special consideration for benefits, and I think your age will be in your favor, along with any extreme difficulties you are having. In my case, I hadn't paid a lot into the system so my benefit check is comparatively small, so I still have to drum up other income. You are allowed to work a limited amount and still collect. I maintain my pottery business for additional income. You can get income other places such as rentals, annuities, as long as they aren't work related;these and whatever assets you have don't count for SSD. For SSI, which low income disabled people get without having paid into it, assets and all kinds of income do count. If I understand it correctly.

[windchime]

I was successful at geting SS Disability for this, so I would go ahead and apply if I were you. You might want to wait for a current dx, though I realize you were dx'd in 1972. WG is on a list for special consideration for benefits, and I think your age will be in your favor, along with any extreme difficulties you [/QUOTE]

Thanks for the info. I'm currently just exploring all my possibilites. Getting my little ducklets in a nice orderly row. I'm also gathering as many of my medical records as I can. Old AF and VA records that can take forever to get. I hate waiting. Didn' t like waiting 9 months for a baby either. Lol Just a little of my frustration coming out. Been doing so much research so I can share it with my docs that my head is spinning.

Doctor update tomorrow but will change threads.

[annekat]

I understand the head-spinning. It took me months to have the energy to complete the application for SSD, and the local SS office kept bugging me to get it done. Everyday things, keeping track of finances, documentation of any kind, has become more overwhelming than ever since having WG. And to be doing research on the disease at the same time, to share with docs who may be ill-informed.... well, that would be a real head-spinner, all right. I hope you are getting plenty of rest in order to be able to deal with all this.

[brew22]

Niki did your hair come back?? Mine is getting so thin..

[Pete]

Niki did your hair come back?? Mine is getting so thin..

Are you taking folic acid? My rheumy Rxed 1 mg/day to combat hair loss as a possible side effect of mtx. My hair is a bit coarser, but I don't notice any thinning beyond what I associate with aging (I'm 68.).

[annekat]

Does folic acid work for hair thinning with CTX, too? I've only heard about it in relation to MTX. When I was on CTX, my hair thinned quite a bit. When I went off it, it started coming back. Since I've been on MTX, I've been taking folic acid and it has continued to come back. I was also under the impression that the folic acid with MTX was for other reasons besides hair loss, "to counteract the effects of the drug", but am not clear on what those reasons are. I'd be interested to know.

[gilders]

When WG first presented itself 20 years ago I was on CTX for just a short period as I could not tolerate it. I lost pretty much all my hair due to CTX. Since then I've been on Azathioprine for most of my life without any hair loss issues. That was until earlier this year. I asked my Dr if it was due to my meds, but he thought it was just a result of my body being unwell (WG relapse).
The strange thing is I've only just started Folic acid earlier this year, just about the same time as my hair has started to thin significantly. I'm not suggesting that this is proof that Folic acid doesn't help hair loss as, maybe, my hair loss would be even worse if I wasn't already on folic acid.

[annekat]

My impression has been that folic acid helps with hair loss brought on by use of MTX, but not necessarily with other meds or in general. If it was that easy to stave off any kind of hair loss with folic acid, men and women all over the world would be buying it all the time, as it is cheap and available OTC. I don't know why this would be, though, that it only works with MTX, or even if it is true.

[lag713]

I was prescribed folic acid when I started taking methotrexate but still experienced hair loss. My rheumatologist then switched my folic acid for leucovorin to help with hair loss (and other side effects?) of methotrexate. I'm on 25mg of MTX 1x/week now and 5mg leucovorin calcium 1x/week within 12-24 hours of taking MTX. I no longer have major hair loss but I still lose more hair in my brush and comb than I did before starting MTX. Folic acid is supposed to be very helpful for healthy nails too.

[Dirty Don]

Triple your dose of folic; that's when mine began to work properly. It's a vitamin, can't hurt you.

[Velma]

Dear Danica,
The same thing has started happening to me too and I think it might be my shampoo/conditioner. I have been using a designer cleansing conditioner called Wen by Chaz Dean and noticed that it was really coming out when I brushed it. (The idea was that it did not strip the hair of natural oils with the chemicals of the shampoo. It is "all natural" too so I decided with all the chemicals in my body this was a good idea. ) However when I started looking on line and saw that hair loss was happening to a lot of people so I have stopped using it all together. So maybe a switch in your hair care products is in order.

Coincidentally Dr. Oz (a talk show in US) had a segment on hair loss yesterday and said it could be hormonal, inflammation, thyroid, and diabetic symptoms. You might mention this to your doctor. I know that cytoxan can make the hair thin but have never know Methotrexate to do it. As for a "cure" he suggested high fiber and protein diet, Vitamin D, Biotin, and lower the bad carbs to help from the inside out. With this disease you really need to mention this to your doc. I think that some hair loss is normal especially for women and our hormones but day after day after day there is a problem. I hope I caught mine early to reverse the damage done. Keep me up to date and good luck.

V.

[Pete]

I know that cytoxan can make the hair thin but have never know Methotrexate to do it.

V.

I think you have cytoxan and methotrexate reversed here. When I was put on mtx, hair loss was explicitly stated as a side effect, and I was Rxed folic acid to combat it. I was on ctx for 16 months and didn't have any abnormal hair loss.

[BarbW]

When I started MT I was put in folic acid. I am still losing a lot though. I am anxious...

[annekat]

I think you have cytoxan and methotrexate reversed here. When I was put on mtx, hair loss was explicitly stated as a side effect, and I was Rxed folic acid to combat it. I was on ctx for 16 months and didn't have any abnormal hair loss. I'm not sure about this, as I think they both can cause hair loss. I had definite hair loss when I was on CTX. Now that I'm on MTX with folic acid, it has slowed way down. The one question I can't get answered is whether folic acid would work against the hair loss from CTX, or if it only works with MTX that way. I have only heard of it being used with MTX and was not prescribed it with CTX. Also I got the feeling that there were other reasons besides hair loss to use it with MTX, that it works against some other negative effects of the drug. Anyone?

[Pete]

Good question, Anne. I was speaking from my own experience with ctx. Docs never mentioned it as a side effect, but they weren't wegs specialists either. Seems like we learn something new about our dumb disease and it's treatments every day. Big sigh...

[annekat]

Good question, Anne. I was speaking from my own experience with ctx. Docs never mentioned it as a side effect, but they weren't wegs specialists either. Seems like we learn something new about our dumb disease and it's treatments every day. Big sigh... I'm glad you didn't have hair loss from CTX, but I'm sure I've read of others here who have. There's a lot the docs don't mention. Mine isn't a specialist either and never mentioned hair loss, that I remember, but when he prescribed the MTX, I'm assuming he found out folic acid was usually prescribed with it, and he only mentioned it would "help with side effects" but didn't say which ones. I'd already read about it helping with hair loss on here, so possibly knew more than he did. Yep, it's a dumb disease, for sure.