Re: Revisiting MTX hair loss

[Guest guest]

Hair loss for a 13-year-old girl is traumatic. Wearing a scarf or wig

are unrealistic solutions to offer, in my opinion. Perhaps a second

opinion re: meds from another rheumy? I'm sure that a med adjustment

would solve the problem.

I had hair loss from Arava and was surprised at the blase reaction I

got from my rheumy's office. I work in a very visible PR job and this

was a big issue for me. Thankfully it stopped before the loss became

noticable.

I'm on antibiotic therapy now.

Sierra

--- In , " Lori Maynard " <lorimaynard@...>

wrote:

>

> My 13 yo daughter has started to lose her hair in clumps and has

noticeable

> bald spots on her head. Obviously she isn't happy with this.

>

>

>

> Her rheumy's advice is to wear a scarf or a wig. Sigh.

>

>

>

> She is on weekly injections of Humira as well as MTX. Her daily

meds are

> folic acid, Lodine, and 5 mg Prednisone.

>

>

>

> I am toying with either taking her off MTX completely for awhile, or

> decreasing her dose of MTX for awhile and seeing how she does. We

don't see

> the doctor again for about 3 weeks and I don't want her to continue

losing

> her hair. What have you all done when you have encountered such

problems?

>

>

>

> Thank you for your help.

>

>

>

> Lori

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I agree Sierra.

I lost my hair quick on Arava too and had to stop it for other

reasons. It grew back out shoulder length then lost it again on MTX,

I began wearing a wig to work and the co-workers wouldn't say

anything at first but then after they got a little more comfortable

with me, they would make comments about me wearing my natural hair

even though it had thinned so badly I was not comfortable with it.

So, imagine a teenager with this problem. Everything is magnified

when you are a teenager.

I just wish I had suggestions. Anything I say would have to be

something that comes from her rheumatologist first. Maybe the rheumy

should treat with antibiotics first in combo with a milder DMARD. Or

lessen the MTX like Mom is thinking. Maybe a second opinion from a

different rheumy. This RA doc is definitely taking the very

aggressive approach. Why is she on Humira weekly? Shouldn't it be

every 2 weeks? Also maybe upping the folic acid 1 mg higher until

side effects lessen might help and something he could have suggested.

peace and healing,

Ebony

> >

> > My 13 yo daughter has started to lose her hair in clumps and has

> noticeable

> > bald spots on her head. Obviously she isn't happy with this.

> >

> >

> >

> > Her rheumy's advice is to wear a scarf or a wig. Sigh.

> >

> >

> >

> > She is on weekly injections of Humira as well as MTX. Her daily

> meds are

> > folic acid, Lodine, and 5 mg Prednisone.

> >

> >

> >

> > I am toying with either taking her off MTX completely for awhile,

or

> > decreasing her dose of MTX for awhile and seeing how she does.

We

> don't see

> > the doctor again for about 3 weeks and I don't want her to

continue

> losing

> > her hair. What have you all done when you have encountered such

> problems?

> >

> >

> >

> > Thank you for your help.

> >

> >

> >

> > Lori

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Ebony,

Some people do not get the desire effect from Humira every two weeks so they

take it weekly.

Weekly dosing for Humira is an option.

Toni

[Guest guest]

Thank you all for understanding. The hair loss thing is a real insult on

top of the 40 lbs she's gained on Prednisone this year. No 13 yo girl

really wants to be dealing with such things on top of normal hormonal

changes.

My husband couldn't believe it when the rheumy suggested wigs and scarves.

Overall, we've been extremely happy with this doctor, but not over this

particular issue.

One thing he said is that hair loss is a temporary psychosocial issue. I'm

not sure what he means by temporary since in his next sentence he said that

her arthritis is bad enough that she needs to stay on MTX. To me this means

that his intention is for her to stay on MTX either forever or until she has

liver problems. I'm assuming (since he checks her liver function every two

weeks) that he would discontinue this drug if her enzymes were out of whack.

I kind of think waiting for liver problems is waiting a little too long and

that this kind of hair loss is somehow indicative of a heavy toxic load on

her body.

So, although I really do trust this doctor, I know that ultimately medical

decisions for our daughter are in our hands. I've decided to cut back on

MTX for a couple of weeks and then get her off it completely. In the

meantime, I've also decided to introduce antibiotic therapy and hope her

stomach can tolerate it alright.

I just wanted you to know that I appreciate your empathy. It makes me think

I'm not crazy to put such stock in just a physical thing as hair loss. I

hate watching my daughter go through this (both the disease and the side

effects of meds).

Lori