mtx and hair loss | Arthritis Information

I'm sure a lot of folks have had hair loss w/mtx. My question is: if you have gone off it, did the hair grow back?

Susan

Yes, my hair grew back. It is still not as full looking as it was before loosing it, but the fullness was from hair I grew while I was pregnant.

So, yes your hair will grow back. Just make sure you take some kind of vitamins to help your hair grow. I was taking some kind of combo that was for hair & nails. My nails were so strong and long! And my hair felt stronger and did not seem to fall out as much.

Mine also grew back but not as thick. My doc wants me back on mtx, but I said no way. I may walk funny, but I won't be bald too!

Sha

not everyone looses hair on it either...i never did.

sha, i have to ask...vanity is more important to you than treating what can kill you? left untreated, RA can kill.

There is nothing wrong with being bald. I got a really bad hair cut one time. This gal cut it so short I hated it. I always said that I wondered how it would feel to be bald. So after I got that her cut. I went and had a barber shave my head. It may not have looked good but I sure did like it. I could get in and out of the shower in no time. I didn't have to spend alot of time on my hair either. It was great. The only bad thing about it was that people thought I had cancer and had lost my hair. I never really told anyone other than my close friends that I had had it done. No one would of believed me. My husband likes long hair and the day I came home with that he said, "Sure got it short this time, didn't they". It was funny. So I really didn't mind being bald.

RLS238600.4731365741

I have long hair again. But I can't seem to keep a nice hair do. I sweat so bad on my head. Everytime I fix my hair it goes limp in no time cuz of sweat. So I usually wear it up or in a braid down my back now. I wouldn't mind being bald again.

I had a friend on MTX and she got all her hair back.

I am still on it, and still sticking a lot of my hair on the shower wall during a shampoo! Uugh. It is starting to gross me out!

My hair has also thinned but it became very curly. I think its from the folic acid but not sure. Did this happen to anyone else?

[QUOTE=wayney]
left untreated, RA can kill.
[/QUOTE]

Well, I feel like a real dumbass here, but what? I mean I know it kiss your quality of life, left untreated. But how can it actually kill you?

well it can cause inflammation of the heart and lead to lung complications. here's a quote from medline.
"Rheumatoid arthritis is not solely a disease of joint destruction. It can involve almost all organ systems. The treatments for RA have also yielded serious side effects, reducing the patient's quality of life increasing the chance of death.

The complications of RA can include joint destruction, gastrointestinal bleeding, heart failure, pericarditis, pleuritis, lung disease, anemia, low or high platelets, eye disease, cervical (neck) spine instability, neuropathy, and vasculitis. Fortunately, better therapies appear to be reducing the occurrence of these severe complications."
http://www.nlm.nih.gov/medlineplus/ency/article/000431.htm

now let's see...heart failure can lead to death...correct? just having RA raises the risk of cardiac problems.
sorry if this scares or offends anyone but...that's part of living life with RA. I could site many more articles but the last time I said something like this I offended people. That's not my intention nor is it to scare anyone..but I've known since I was a kid that the risk is there. if you would like more info...pm me.

Hey Wayney:

How in the world could someone get offended over the info you just gave. I'm gonna go out on a limb here and say that maybe it will wake some people up who are so afraid to try or take some of these meds because of the side effects that may or may not happen. People have to understand that they must get this disease under control asap and not just because they are hurting, but because of the possibility of irreversible joint damage and what this disease can do to your internal organs also. Hope I didn't offend anyone. Good info Wayney, keep bringin it!

Allen

Sara G,

Don't feel like a dumbass, I still haven't come to grips with everything RA can cause. My Grandmother had it and she lived to the ripe old age of 86 and didn't take any of these drugs they are giving us today.

I'm just starting my third month of ARAVA and to it causes hair loss and I'm just begining to notice it while combing my hair. I'm starting to loose quite a bit.

Does this medicine actually cause you to go totally bald? Wayney I know you have delt with this obviously longer than we have. You are the encylopedia when it comes to this subject and I have learned alot from your research. Call it vanity, I guess but I watched as my sister lost her hair due to Cemo from breast cancer. It's hell, I guess women are challenged more to keep up their appearence. Make up, hair, dress and all of that. While men just take a shower, shake off and go to work. If they have to shave their head because they are going bald...that's ok..there's alot of bald men out there... But for women it's a totally different story.

Try "Nioxin" Sara, it helped my Sister tremendously, I'm going to be getting some myself.

LUV

KAT

Chemo for breast cancer is a much higher dose of methotrexate. I personally, have not known anyone on the dose for RA to go bald....thining hair yes. But not bald. I'm not disagreeing that going bald is traumatic for a woman...but loosing a bit of hair...I'm sorry I can't understand saying no to a med because of that. I lost very little hair while on MTX, most of it from how thick my hair got while I was pregnant. There are so many options for women with thining hair that I just cannot see why that would be a reason to say no to MTX. Even if it meant me going bald, sorry...my being able to have a better quality of life by being able to move is more important to me. This comes from having dealt with this most of my life.
Allen raises a very good point about side effects that may or may not happen. I think most people when hit with the thought of taking MTX automatically assume they'll get the nasty side effects that patients using it for chemo do. I know some people that say aside from a bit of fatigue, they have no side effects. I personally only had a day of nausea and increased fatigue when I finally was switched to the injectible form. While on the oral form, I was sicker than a dog... but despite that, I'd still go back on it, if I could right now. Not a question about it in my mind. I can't see being afraid of meds...until I've tried them and seen my reaction.

I understand what you are saying, if the meds are helping. I'm starting my 3rd month of Arava (I am newly diagnosed) And still there are more bad days than good. A simple camping trip, in a camper mind you not a tent like I have in the past, has left me hurting so bad today, guess from the night air like Mom said???? Does the night air make you flare???? Soooo confused.

KAT

night air doesn't unless i get chilled... but weather systems affect me. there's a low pressure system sitting close enough off our coast to cause small craft and high surf warnings...and i can tell it...been stiff for a day or two now...and not watching the weather til today and found out about it and it clicked. but for me laying directly under the AC vents causes me to hurt...even if it's 90 degrees, you'll find me covered up if i'm laying down.

I've been saying that all along about the AC vent. My RA said no...I think I'm going to change DR's It's been almost 3 months and I'm not getting much relief. Last night camping it was cold 56 degrees. I froze my butt off. Woke up this AM and could hardly walk. This RA crap isn't showing up in my blood but I have all the symptoms...? What's your take on that? Is it something I'm doing to cause it???

Still Confused

KAT

I know exactly what you mean Kat. I almost have to be shivering to go to sleep, so I turned the AC down and had one of those small fans blowing directly on me. I couldn't figure out why I was so stiff and hurting the next morning. No more fan, slightly warmer temp, problem solved. Thanks Kat, I thought it was just me!

Allen

Didn't offend me at all. Woke me up. I had no idea about heart involvement.

Kat--I'm not the one with hair loss. Was just reading the thread and caught waynie's post.

Thanks, waynie.

Kat,
the fact it doesn't show in your blood doesn't shock or surprise me. it seems to be fairly common in people that they have negative bloodwork. mine has been for 21 yrs...unless in the last two it suddenly changed.
i have all the other symptoms for diagnosis except nodules. i do think seronegative cases sometimes cause docs to hesitate in what they do..or even what they say. i've even found that being informed can lead to its own set of problems if a doc is rushed, they sometimes take less time to explain things if they know you know your stuff...i ran into that a lot. especially with meds. mine seldom shared side effects or anything. she only asked if i knew how to do the mtx inj. as an afterthought. i did in fact know and knew i could ask my neice (she's a paramedic) or even my pharmacist.
I've taken MTX for about 12 years and am up to 20mgs a week....I've noticed very LITTLE hair loss..probably losing the normal amount as I would if not taking MTX...in fact when I go for haircuts the stylist says I have a lot of hair and I tell her I'm surprised with the drugs I take . Before I was pregnant and not on any drugs I had thin fine hair. I'm sure pregnancy made it thick.

Since day 1 I was informed of RA being able to go to your lungs, heart, kidneys, liver. Even if it didn't, I'd still take the same medications for the joints. Ofcourse hearing that scared me!

I never experienced any hair loss when I was on the MTX but when I came off it most of my hair fell out, but maybe that was the flare. I had a 'Halle Berry' for months and then it grew back thick, black and curly - I love it =)

As for 'RA can kill'... I can kinda speak from experience, although I have Still's which is renowned for having systemic organ involvement. I've almost died twice, the first time because of lung damage leading to pulmonary embolism and the second time due to general systemic failure, which included kidney and liver failure and problems with blood clotting, temp and bp maintenance. Both times my parents were prepared for the worst and if it wasn't for the available medications I wouldn't be here. Personally I can bear any med apart from the dreaded pred, but I have to keep reminding myself that it has probably saved my life in the past.

Moonie

Wayney,

I never said my RA was untreated. I am on embrel,relafen and prednisone. When my doc suggested we try mtx I ask him to go another route and we did. I am pretty well controlled except on stubborn right knee and the flare up we all deal with. I would never choose hair over my life, but if there are alternatives why not try them?

Sha

I've been on MTX for a little over three years now I guess and I wouldn't say I have any hair loss. My hair has been falling out here and there as long as I can remember. It's normal.

I'm not saying that there isn't some "hair thinning" in some people; but I'd bet the majority of people that say "I'm loosing my hair

I really have experienced very few...and the ones I have were all a very small price to pay for the difference the medications have made in my life.

Lovie

sha,
it just wasn't clear from your post that it was being treated. most insurance companies will not pay for enbrel or any of the newer meds until it has been shown MTX doesn't work.

Wayney,

Mtx wasn't enough so insurance ok'd embrel and after that I stopped mtx and started with other drugs. Thanks!

Sha