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|Who’s Lost Hair Using
Hi Ed and all the other Flakers out there. I am 37 years old and about 30% covered with P right now. I have recently had a huge amount of stress with a death in the family, a career change and a move of house and absolutely nothing topical is working for me. My skin is really really sore and my PA is starting to hit my lower back. ANYWAY to cut the long and usual short, my derm has suggested MTX seeing as my kids are now teenagers and I am single and I don't foresee myself doing the nappy thing again. Well I am scared. In 1992 I embarked on a course of Tigason and within a month I had lost every single hair on my body! I was totally bald and from having long thick hair down to my waist. It was totally soul-destroying for me to get up every morning and count the hairs on my pillow till they were all gone! My derm at the time was most surprised as he had seen hair loss with some patients but had not seen it ALL go.
I am ready to try MTX but according to my current derm between 1 and 3% of people suffer hair loss and that terrifies me. I would be interested to know if any other Flakers have lost hair (it sounds crazy I know) and if so, HOW MUCH?!
If my blood work proves okay I am scheduled to start it next week with a dose of folic acid once a week too. I am a bit nervous about the blood work though because just after my brother-in-law passed away three weeks ago, I sat up night after night drinking copious amounts of sherry with my sister... aaaghhh!!!
Anyway, if anyone has hair loss experience on MTX I'd be interested to hear about it.
Cheerio from Cape Town, South Africa -Caroline
Ed’s Immediate Response: Hi Caroline. Thanks for sharing your story at Flake HQ. We're three weeks away from the next update, so you're going to be making your decision about MTX way before FlakeHQ readers can pitch their two cents to you. So, I thought I'd toss my two cents at you in the mean time.
After your Tigason experience with hair loss, I don't blame you at all for being apprehensive about MTX. Did you read my Methotrexate journal at FlakeHQ? I was a bit worried about MTX, too (understatement). There's a long monograph about the drug linked from Dave'sPsoriasisInfo site that you might find interesting. (Go to "Other Places" at FlakeHQ.) Check with your doc, but I don't believe you'd have to worry about massive hair loss before you have an opportunity to stop the treatment. I found the MTX effect to be VERY gradual and, if you're unlucky enough to get the hair loss, again, maybe it would be gradual, too.
Also, I think the elevated liver enzymes that might prevent you from taking MTX come from sustained heavy drinking — or non-alcohol-related liver problems. The good news here is that if your pre-MTX blood work up shows enzyme elevation they probably won't let you take the drug.
Anyway, Caroline ... I hope this helps and let me know what happens or what you decide. I'll post your original email for April — so there's plenty of time to get an update in there, too. Good luck! -Ed Dewke
[From Caroline:] Thanks so much Ed for the info.
I have just been to the MTX monograph on Dave's site and now it has really given me the heeby jeebies. I have gone from scared to quite terrified!! But I am in pain and my skin is really really sore particularly on my lower torso and sitting programming all day in front of a computer does not help matters at all.
I know how scared you were prior to embarking on this road too and the fact that you have finally gone there kind of gives me encouragement too. Most of what I read on MTX focuses mainly on the negative side; i.e., the side effects. My derm seems to think that when monitored and controlled properly it is in most cases okay.
I can't help feeling a little shallow at my concern over hair loss when the other side effects are so much worse and most people with P and PA have a whole lot more to worry about than whether they have hair or not. I guess one can only understand the trauma and insecurity of going from waist length hair to nothing at all when you've actually been there. It sounds shallow and vain and I must apologise for this. I too suffer extensively from P and PA and I know only too well the difficult road we flakers have to travel.
My blood work comes back tomorrow and I shall let you know what transpires.
In the meantime, thanks again for all the time and effort you spend on-line giving us encouragement and hope. It is greatly appreciated. Till next time... -Caroline
[More from Caroline:] Hi Ed: Well the blood tests came back and I am pleased to say my liver is in perfect shape! Apparently two small sherries a night for a week does not do irreparable damage and I would not be considered a border line alcoholic! In fact he laughed when I confessed my anxieties. My lungs look good too and so being in relatively good health I shall embark the long and dangerous road of MTX. My derm is starting me on 20mg, but first tonight I will take 5mg and then have another blood test done next Wednesday. If all is okay with the old liver then my 20mg starts next Thursday. I am nervous as anything and still anxious about my hair. But the derm says he has not seen anyone lose hair on 20mg of MTX before so I am cautiously optimistic that I shall keep mine! As my tummy is fairly sensitive at the best of times, I am preparing myself for long chats and intimate moments with the toilet bowl.... I'll let you know how it goes. Talk to you soon... -Caroline
[More from Caroline:] Hi Again, Ed: The MTX is working fabulously well. After 3 weeks (20mg) my lesions are a pale pink with visibly reduced flaking. No side effects either and the blood works have all been okay. I have experienced slight hair-loss but no bald patches yet! Keep your fingers crossed! Why I didn't do this before, I'll never know. I'm hoping for an even greater improvement as the weeks go by, but right now I'm more comfortable than I've been in months.
This weekend I was looking after my 4 year old nephew. I decided to take him to visit my mom. Well, little Derek was pottering happily around Grandma's kitchen when all of a sudden he stopped dead in his tracks, tugged me by the arm and pointed in absolute horror at a glass jar of oats on the kitchen counter.
"Aunty Cara," he questioned with eyes as large as dinner plates and in all the innocence only a four year old has, "Why does Grandma keep a jar of psoriasis on her kitchen counter?"
Well, we just cracked up! I doubt any of us will be eating oats for a while!! Take care. -Caroline
Ed’s Response: Let’s end, for now, with the wonderful little-Derek story. (Congratulations on your progress with Methotrexate. And stay in touch!) -Ed