What would you do?

LauraMax

LauraMax

Cathlete
OK this is a little personal & long, but there's always such great support & advice on this board, so I'm soliciting your opinions.

A few of you may know I have psoriasis (hence the year round tan). I've been fighting it for more than 25 years. Tanning (costs money & time, not to mention the cancer risk), creams, fighting w/the insurance company to get my meds.

During the last 10 years or so there have been new, "systemic" drugs used to treat psoriasis. Most of them carry a high risk of lymphoma so I've resisted, but I'm losing this battle & it's exhausting me.

There's one drug that does not carry a risk of cancer, but there are 2 side effects that are bugging me. The first is a very high risk of birth defects, which I'm not so concerned about b/c I'm 38 & I can't even get a date, much less get pg.

The second is hair loss. Something like 50-75% of people who take this drug experience hair loss. It's completely freaking me out. On the other hand, the drug is like 80% effective for clearing up psoriasis.

Yeah I'm really vain, & I can't stand the thought of my thick, curly hair thinning. But b/c I'm really vain the skin problem makes me crazy too, not to mention the expense, time & frustration that goes along w/it.

What would you do? Would you go on the drug & hope that you're among the 25% who don't lose their hair? Or would you stay off the drug & continue the fight?
 
It's not permanent hair loss is is? If not, I'd take the drug and opt for a short cute pixie cut until you're off the drug.

Carolyn
 
Ummmmm, sorry, but I would not want to lose my hair. I worry enough with dyeing my hair once a month, and it has thinned out alot just from that over the years, but that is just me. You have thick hair, right? Well it doesn't matter cuz you might lose alittle gradually or you could lose alot...I wouldn't take the chance myself. Bald is beautiful for some, but you got beautiful hair, Laura. Don't take the chance. JMHO

Charlotte~~
 
Laura,

My grandpa has had sever psoriasis for at least the last twenty years. He has a ritual we call "shmearing up," which he used to do several times a day with a myriad of prescription and non prescription creams. About two years ago, he started getting some kind of light therapy, and now he only does a "light shmear" once a day. I believe he sees a doctor in Brooklyn for the treatment. As soon as i find out what the name of this thing is, I will post again. Hopefully, it'll be another option for you to consider.
 
Thanks Gina, that's sweet of you. I'm guessing he does PUVA therapy, it's a combo of topical meds & UV exposure. I'm already doing this, it's just so darned time consuming & expensive. Plus, again, the risk of skin cancer--I've been doing the UV therapy for more than 20 years & I'm sure my luck will run out eventually.

Besides, it would be really nice to know WTH my real skin color is. :+
 
My Mom had cancer when I was a little girl, went on chemo and lost all her hair. We used to play with all her wigs and try to laugh as much as we could. My Mom passed away not too long after all that, but we all learned that life and laughter and love was alot more important than hair.

I had really long hair, and when I was in my early 20s got a plum role in West Side Story. Trouble was, I had to look Puerto Rican, and long straight hair didn't cut it. I thought about my Mom, and said "go for it". They cut it all off, permed and colored it, and it was a great experience for me.

Since then I have colored my hair, shaved my hair, let it grow, wore it curly, straight, and next week I am getting it cut down to about an inch all over my head. I just don't make it that important, I have many more priorities in my life, as well as challenges, and hair becomes so unimportant in the "big picture."

My two cents, but it's only hair when all is said and done, it does NOT define who you are as a person. Your heart does.
 
I can understand to a point your feelings. I have to start taking plaquenil soon for an auto immune disease I have. They say it is an unlikely side effect, but you can lose hair or it may bleach your hair!! I guess I won't worry about it, unless it happens, then try to explore other options.
Can't tell you what to do, but I wish you luck!


Maeghan AKA megadoo

http://www.3fatchicks.net/img/bar072/slider-but3/lb/203/145/159/.png[/img] [/url]

http://www.picturetrail.com/megadoo2
 
I guess you have to decide which is more important - your hair or clear skin with less risk of cancer in the future. You have TONS of hair:) I bet if you lost a bit, nobody would even notice!
 
That's it, Laura. I'm sorry it didn't work well for you.

I once took a medication that made my hair fall out. Like you, I have thick curly hair, and no one noticed when I was losing it because I had plenty. However, it bothered me a lot. I'm wondering when the hair loss "kicks in" relative to when the meds would begin working for you. Could you try the medicine and discontinue it if you begin losing your hair?
 
Laura,

You've been given advice and know that only you can make this decision. I'm sorry you have to deal with this, but when you make your decision resolve yourself to it and move forward without further stressing or second-guessing.

In the meantime here's a {{{{{{{{{HUG}}}}}}}}}}}.
 
Aww, you guys are the greatest. :*

The systemic drugs take about 4 weeks to show effects. I did call my dr. & asked her whether the hair loss would be permanent & she said no, if I went off the drug my hair growth would return to normal.

Thing is, the psoriasis is not a big deal. I mean, I refuse to feel sorry for myself when there are people out there with REAL problems. OK sometimes it's a little uncomfortable & it's definitely not pretty, but it's not life threatening or painful or anything like that.

But thinning hair WOULD be a huge deal to me. My mom has naturally curly hair too & hers started thinning after she had kids. Now I can see her scalp. Seriously, I just don't know what I'd do without my ridiculous mop. My hair might not define me as a person, but it is most definitely a defining characteristic. When people forget my name they say "you know, the girl with the hair!"

At least they don't say "the girl with the bad skin........" :eek:
 
Laura,

It's great that you don't dwell on the problem too much, but don't beat yourself up if you get down about it. It is a real problem, especially since things that show superficially can affect us emotionally. I hope everything works out for you. Keep us updated :)
 
Laura, if you're looking for other options, I'd like to suggest finding a good naturopath/homeopath. You can be treated for this problem using natural methods without side effects. If naturopaths are not covered on your insurance plan, you will have to pay out of pocket but take it from someone who mainly uses alternative methods, you are worth it!

Amongst other health concerns, I've been losing my hair for quite a few years and it's gotten so bad that I'm going to have to seriously think about hair pieces or the like. The reason my alternative protocols are not working for me in this area is quite complicated but it's not because it's not the right choice for me, it's that there are other things going on in my system that we are having a hard time identifying. The medical industry just kept telling me that I was in perfect health....yeah, right, lol.

It doesn't sound like you have to make an immediate decision. I would say to weigh all your options and do what feels right. Do some research, make phone calls, talk to people and just get as much info as you can. No decision is permanent. I wish you luck in your process and I'm sending out lots of healing to you!

Bam
 
Hi Laura -
I don't have any advice that hasn't already been given, but I wanted to send a little encouragement your way and tell you I know you'll make the best decision for you. It is a big decision - and I must admit, the threat of skin cancer would probably sway me quite a bit. Good luck!
 
Hi Laura,

I have vitiligo and have been prescribed some of the same creams that also treat psoriasis. I've just started doing light treatments twice a week. You're right - they are expensive AND time consuming, since you have to drive to the dr. every time. And every time I go, I think about the cancer risk and how vitiligo is not a life threatening disease. I've had so many dermatologists tell me to just be glad it's not something worse like skin cancer. But, like you, it does bother me a lot - I'm very uncomfortable being in shorts or a bathing suit because of my white spots all over. It's especially noticable on my thighs and arms. I'm lucky that I'm fair skinned, but it's still pretty obvious. And don't even get me started on dating!!! I cringe at the thought of being asked to go to the beach or out on the lake in a bathing suit! :) I end up using lots of coverup makeup or self tanner. But, my skin still looks blotchy.

So, I guess I just wanted to respond and say that I can completely relate with your struggle. I don't have an answer for you, since I fight with the same issues. I know that there are SO many worse problems to have, and I'm very thankful for my health, family and friends. But I sure wish there were a cream or medicine out there for us with psoriasis/vitiligo that didn't have a catch or a downside!

Take care, and keep me posted on what you decide.

Jackie :)
 
I think it depends on two things:

which is more important to you... your hair or your skin? These days there are so many options with wigs or hair extensions, hair styles, thickening sprays, etc... Why don't you talk to your hairdresser and ask him/her what they think - if you decide to take the meds, can they help you out with extensions or something to preserve your hair? That way your covered both ways.

If it were me, I have to say I love my hair, it's my security, but...I also love my skin and hair can be cut and styled, skin can't. If you find a great med that will help you fight this disease, I'd say go for it. But definately have a talk with your hair dresser and see if you can be proactive on the problem before if becomes an issue.

best of luck, I'll be keeping you (& your hair & skin) in my prayers!

jen:+
 
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