Hairloss and Methotrexate

[*Niki*]

Has anyone suffered excessive hair loss while taking methotrexate. I have taken mtx on and off for the past 2 yrs and never suffered any side-effects. After having Infliximab in Sept, Oct & Nov last year (which worked for a short while) and then having Enbrel injections afterwards whilst still taking 10mg mtx my hair is falling out at a great rate. I am losing, on average, 300 hairs a day (the max no. for normal hair loss is 150).  My derm thinks i am absorbing the mtx at a faster rate than ever before and the only reason i can think of for this is the Infliximab infusions.
On my derms advice I stopped the Enbrel for 2 wks but this had no effect on the hair loss. Last week he told me to stop the mtx (i was on 12.5mg for the 2 wks i stopped the Enbrel) and resume the 2 injections of Enbrel a wk.  As yet the hair loss isn't showing any sign of stopping and i'm gettin major stressed over it as i don't relish the thought of being bald again.
I'm usually pretty good at dealing with everything that p throws at me but this time i'm really struggling, i'm not sleeping, the p is flaring and i'm feeling really really down.  

[SJ]

 

You and your system have certainly been through it with all the drugs lately...

One of the side effects of MTX is most certainly hair loss...although it didn't really affect me that much when I was taking it (just as acitretin is not now).

It may well be and probably is the MTX, but then again stress in all forms can also be a culprit, can't it? And I have no idea whether infliximab and enbrel could have an affect on this too.

I have two female friends, both of whom are not P people, who have both suffered hairloss due to stress...so I do truly empathise with you as they and I have spoken in depth about it.

I hope you can find the 'culprit' in your regime, and I truly hope it ceases as soon as possible. Me saying 'don't get stressed' is quite ridiculous advice, I know   So instead I'll say 'hang in there' and I'm thinking of you  

SJ

[david_8]

hi, Niki

sorry to hear your having such a bad time, my heart goes out to you
take  deep breaths relax d/stress  i know its easier said than done
 

  do you/they  know your over all accumulative mtx dose, have they suggested mtx injections
 if you was on tabs
 

 you say bald again what was the diagnoss that time

these new bio/injections/infusions have loads of side effects  let alone when used in combinations, whats your derms treatment  plan  as any hair been sent for histology as a  trichologist  been mentioned,  ask him what his treat/plans are this will help with the stress
knowing what going on

i hope  you  get answers soon  stay positive

[*Niki*]

Hi David,
My accumulative dose has not been mentioned (nor have i asked). MTX injections have not been discussed as my derm is pro the biologics-he thinks Enbrel will work for me long-term. I'm doubtful as i started a trial last May on Raptiva for 12 wks, my p worsened so i started Enbrel (which couldn't stop the flare) and was admitted to hosp in Sept (for over 3 wks) with p covering me literally from top to toe. This is when i was given Infliximab which is great at the "shot-gun"approach but not long term.
 I went bald in 1980 when i had full blown pustular p affecting the whole of me. It was a culmination of the p on my scalp and Tigason.  
The last time was in 2001, the p on my scalp was so thick that bald patches were appearing as the hair couldn't grow and i couldn't treat it with ointments so i helped it along and shaved my hair to a blade 2 skinhead.
No hair was sent for any tests, the only tests he did were bloods; iron and thyroid, both came back normal which is why he thinks it's the MTX.
My p has gone into overdrive with my arms becoming covered in just 1 week.
My options (when i see him in March) are; Increase the Enbrel to 50mg pw, Infliximab, Try MTX at a lower dose on its own or MTX with the Enbrel.
I can honestly say i now don't know which way to turn, i feel i've made no progress in the 30 years i've been seeing a derm and that my hairloss is not been given the importance it should.
I know i'm not helping myself but it's so goddamn hard to look at the screaming pink, burning, flaking patches of p and sit every day counting the hairs that fall from my head and  be happy.

[*Niki*]

Hi SJ
Thanks for you kind words, to have people who totally understand where you're coming from is such a great help

[SJ]

Hi SJ
Thanks for you kind words, to have people who totally understand where you're coming from is such a great help

 

It's not though, is it? You are going through an awful time and if coming here and having a moan or a cyber hug helps, well great. I wish we could do more...I am sorry that there are no straight answers and you are caught between a rock and a hard place.

I truly do feel for you Niki...having severe P is pretty darn hard, but your general quality of life isn't helped by your hair loss and the derms don't seem to understand it isn't all just about the skin...it's how we feel too.

You know where to find me if you need me  

SJ

[*Niki*]

A light at the end of another tunnel .....................
I have been off the MTX for 12 days now and i am extremely happy to report that my hairloss, although it hasn't ceased completely, has more than HALVED.
I'm awaiting a phone call from my derm to arrange an earlier app so i can discuss my supposed options but i am feeling a whole lot better and can   eventhough the p is on the rampage.

[SJ]

Well that's much better news

 

[*Niki*]

Hi SJ, It most certainly is and its getting better by the day-i've only lost 146 in the past 3 DAYS-i'll be like rapunzel in no time at this rate  

[*Niki*]

Just to say the hair loss is continuing to decrease   and although the p is spreading rapidly, i feel much better in myself.  Today i'm   so to my p i say - Let battle commence, i'm armed wi a phial full of enbrel, a tub of emulsifying ointment, and a roll of stockinette LOL