View Full Version : Oh please help me calm down... Hair emergency!

October 22nd, 2010, 10:15 PM
So, I finally had a visit with a Dr. about my psoriasis, which has really gotten worse over the past few months. She wanted to put me on Enbrel but not covered by my insurance. She found something called Soriatane (Acitretin) that is covered and she started reading off about possible side effects and then she says "Alopecia" and stops and looks at my hair and says "oh no". She said that is what she thinks will work the best without putting my immune system out of order this winter. She is giving me a low dose of about 17.5 mg per day. I was reading up on it just now and it says a side effect is changes in hair texture, hair loss, loss of eyebrows or eyelashes. I am in tears thinking, ok great, so now I can either live with this awful, embarrassing skin condition or lose the only thing that has made me feel pretty while I have dealt with this. :( Which should I choose?

October 22nd, 2010, 11:09 PM
I use creams/lotion when mine gets bad...if you're consistent with using it, it usually makes it go away.

October 22nd, 2010, 11:14 PM
I am so sorry !!!!!
The only thing I can think of that might be helpful is this : while many people do experience terrible hair loss while taking this medication, many don't ! It is not an absolute that you will have this side effect. I have a client who has been on Soriatane for 6 months and she has experienced hair loss only on her arms. Her head, brows and lashes are just fine. You have a very hard decision to make and I don't envy you, but this may turn out just fine. :flower:

October 22nd, 2010, 11:26 PM
I remembered reading on a product review blog by a naturally curly forum member and her son has skin issues. The blog has some awesome hair product reviews. The line she mentioned was Sweet Nature by Eddie. Here is the link to the blog.

from her blog post....
"Wisdom Moisturizer--this product was too heavy for my hair. While I can generally use many products designed for textures of hair different than mine I do occasionally run across one that flat out doesn't work for me. This is one of those.

After watching youtube reviews I realized I could use this on my son's excema. I did and NO LIE it disappeared overnite. Literally. Truth. Could-not-believe-it. Now I just put it on him after he bathes (2-3x week max) and so far no excema. This cream did what hundreds of dollars of prescription product couldn't--it provided enough moisture to keep the itchy scalies at bay. Since my son has other medical issues the problem of him scratching and potentially making spots bleed cannot be ignored. It is actually dangerous for him.

I am a forever customer for this product for my son's skin. I use it on my feet, elbows, knees, etc. It is a great body cream. It smells like chocolate which is a complete bonus!

As I mentioned in my first SNBE review you can get smaller sample sizes of these products so you can give them a try before a full size purchase. HIGHLY recommended!"


October 23rd, 2010, 04:15 AM
I use Lush' Dream Cream when my allergies get bad, and it really helped! My doctor thought I had psoriasis too. If I were you, I'd try some more natural remedies before making the hair/skin decision.

October 23rd, 2010, 04:35 AM
I use Lush' Dream Cream when my allergies get bad, and it really helped! My doctor thought I had psoriasis too. If I were you, I'd try some more natural remedies before making the hair/skin decision.

Absolutely. I would do lots of research to see if there was something good for me to use instead first, and try everything before going the medication route. I'm so sorry you have to deal with this. :( It must be so stressful. Try to take lots of deep breaths and know that you can get through anything, and that your health, and your family's health, is the most important thing. Hair being Number 2. ;) I wish you the best!

October 23rd, 2010, 05:47 AM
I am so sorry that you're not only dealing with psoriasis, but that you're faced with this choice. :grouphug:

The one thing I do know for sure is that hair loss is not an absolute given with that medication. There are many people who don't experience it at all. However, I know you must see it is a major gamble.

I suggest that you do a lot of research, and go on this drug only as a last resort. Perhaps you've hit last resort time; I don't know, but I think you know that there are other risks with that medication, and it's serious stuff. A woman can't even try to get pregnant until she's discontinued use of the med for 3 years. Whether you want to have children in the near future or not is irrelevant; it just shows how very powerful and toxic that drug can be.

Have you looked into every form of alternative therapy and diet change, including consuming the correct balance of fatty acids?

Likely, you have done all of that research; I'm likely just grasping at straws, but there may be something out there that you've missed, or you might be able to get a second opinion. Was this doctor a dermatologist or a GP? Could you appeal the insurance company about the safer drug?

Please give it a little bit more time before you commit yourself to such a strong medication.

If however, your skin condition is driving you mad, then you have to decide which is more important to you. I do know how skin disorders can affect quality of life severely.

I really hope that you find the answer that will be just right for you. :blossom:

October 23rd, 2010, 06:40 AM
Are you not seeing appropriate relief with light therapy? It takes a lot of light therapy to keep my partner from turning into a patchy mess. Untreated, he ends up with about 1/3 of his skin covered in patches. 2x a week for about 15m is his maintenance dose, and his treatment doses in winter can go a lot higher. Missing even two doses produces a marked increase in how many patches he has.

October 23rd, 2010, 08:16 AM
It's a personal choice for sure. Me personally, I would use creams and lotions, and natural butters and balms and salves and soaps. I would baby my skin and find the right mix of products to keep the psoriasis at bay before I would sacrifice my hair.
Psoriasis is not life-threatening as far as I know. Were it the big C or something like that, I would choose life over my hair. But some scales and dry skin, in my opinion, would be preferable to any type of alopecia on my scalp. I am very sorry for your perdicament and hope you go with whats best for you :)

October 23rd, 2010, 08:58 AM
I have no idea what advice I could give you, but for sure I can give you a big hug :grouphug:

October 23rd, 2010, 09:02 AM
I think you should try the medication, it isn't guaranteed that you'll experience those side effects.

The medication that I use for my psoriasis has a lot of side effects including hair loss, and I haven't seen any changes at all :) (i've been using it for 4 years)

Obviously these medications can be a little harsh like everyone has mentioned, but i'm assuming that you have tried everything else and medication is the only way you can get any relief.

I do want to say however that you should NOT EVER apply any creams or lotions that your derm hasn't recommended! Lotions that you buy in stores are full of chemicals and perfume, and you shouldn't even use them on any part of your body, never mind on your psoriasis!

Ask your doctor for a moisturizer if your want one.

October 23rd, 2010, 10:15 AM
This is my last resort. My daily (when I have time) routine for beating this without prescription drugs is to take a very long bath (20-30) min, until the excess skin gets can be rubbed off, then after finishing up my bath or shower, I have to put on the most moisturizing lotion I can afford, then about 5 hours later, it is all soaked in and I need to remoisturize. I take evening primrose oil, multivitamins, and Hydrangea root (which is the only thing that has made a difference but not enough). I also did a 3 month complete diet change that somewhat worked, but it was when I wasn't working 10 hour shifts and had time to prepare it all. I still eat healthy for the most part with an occasional chocolate. I am going to go through with it, and hope that the low dosage won't have as much side effects. I did find this article (http://archderm.ama-assn.org/cgi/content/abstract/142/8/1000) stating that 25 mg or less doesn't have as many side effects. My Dr. also said that since my Medicaid is about to run out, that I will soon qualify for free Enbrel. I just need a break from this. My skin is so painful right now and I am tired of trying "just one more thing".

October 23rd, 2010, 10:17 AM

I had very bad eczema for years, on my hands. Sometimes it looked like I had had some awful medieval disease - peeling, cracked, bleeding skin, swollen fingers, the lot. :shudder:
I was not given any medication, my doctor was quite open with me saying the causes for eczema are individual in each case, and are not fully known yet. I was given a steroid cream to apply on the affected parts, a base lotion to use for daily moisturizing, and I was told to protect my hands with rubber gloves while doing chores, especially ones involving water and detergents. :shrug:

It took me years to get rid of the darn thing, but I'm happy to say I haven't had a flare-up since 2005. :) My hands are still very prone to dryness, especially in fall-winter. I don't really know what made it all go away. Hormones? :shrug: Anyhow, what I want to say is that sometimes you just need a very basic but *consistent* skin care routine for your skin to achieve balance.

And you can always seek a second opinion. Try to ask another doctor about what you can do without going on a medication which could make you lose your hair.

October 23rd, 2010, 10:23 AM
OI! :eek:

I don't know who suggested that you take long baths, but let me tell you, that was just about the worst thing I could do when I had eczema. My skin would soak through, swell, and become so taut it would bleed and itch more than you'd believe.

I think you should keep your baths/showers short, just enough to get you clean. Then you'll still need moisturizer, and there is no rule that says you can only apply it once a day. The point is, give your skin plenty of moisture without stretching it to its limits (and soaking will do that!). I also found that super-rich, oily, "barrier" creams were no good. They didn't let my skin breathe normally. For nighttime, they are OK - but it's better to apply a lighter moisturizer multiple times a day than to cover your skin in an oily mantle and keep it on.

October 23rd, 2010, 10:42 AM
Oh no....this is terrible...
Can you get another opinion about the skin condition? I would wait before taking that.

October 23rd, 2010, 10:44 AM
*hugs* My mom has psoriasis (I am praying I don't get it--I do have seborrheic dermatitis which I've read before may be related to psoriasis, so I'm thinking that may be my "inheritance"). It does not sound like any fun to have. She too has had trouble with finding things that will take care of it. I wish I had some ideas for you. Strangely enough, she was using a goat milk soap...or maybe it was lotion...that was helping it for a while. (When she had cancer, the chemo made it go away completely, strangely enough, but obviously that's not a fix. Would be interesting to find out exactly how that worked, though)

I've heard before that henna can help; read it on the Henna Page a while ago. I tried it on my mom years ago...after a couple applications she thought it might've made it slightly better, but it made her itch like crazy and she couldn't stand it (I don't know if that was just the regular "itchy paste drying on skin" made worse because psoriasis is itchy anyway, or maybe it was the essential oils in it irritating a bit) so we only did it a couple times (it also makes it flake/peel like mad a day or two later, it's like it accelerates the process or something, though maybe with enough use it'd eventually just help it go away). And obviously you don't want to be orange anyway. I'd say henna might only be workable if you had a few small spots.

October 24th, 2010, 06:20 PM
I would choose hair over skin, since based on what you said, I would not want to be depressed over both, especially since you cannot guarantee A) that it will work and B) that Alopecia won't be a side affect. Honestly, diseases are usually better than the side effects of the drugs used to combat them, like Yaz and Avandia for example.

October 25th, 2010, 08:36 AM
Do remember that all side effects listen on medications typically affect the MINORITY of patients. Odds are you won't experience MOST of the side effects listed on MOST medications.

That said, I would be stressed too and I have had to struggle with this with another medication. Perhaps we would both be wise to remember STRESS hurts our hair, too! Good luck to you.

October 25th, 2010, 08:42 AM
I am swimming against the tide here but I would vote against the meds. There are a few more routine changes you could experiment with before going on a prescription--have you tried WO, Indian herbs, neem oil, that kind of stuff? Have a look here (http://community.livejournal.com/no_poo/tag/psoriasis%2Feczema), for example.

October 25th, 2010, 09:13 AM
Something I'm wondering about is whether hair changes and hair loss are risks only when taking the medication, or if these are permanent risks. Some drugs will cause changes that don't seem to go away even when meds are stopped, while others have side effects will go away when meds are stopped. That would make a difference to me, because if any risks to your hair would be temporary then it seems worth the risk to me. If you are truly suffering from this with no other options, then it might be worth it to try. You can always stop the medication if the side effects are unbearable, provided they are not permanent.

Also, keep in mind that everybody processes meds differently (as others here have said). For example, a poster above listed Yaz as a drug that can cause side effects that are worse than the disease it treats. For me, a drug with identical hormones - Yasmin - honestly changed my life, with no side effects to speak of. I know for other people this drug can cause unpleasant or dangerous side effects. It's a case of YMMV, and you won't really know what your mileage is unless you go for a drive. Just make sure you are monitoring your body and being very careful to follow up with your doctor often. Good luck! :blossom:

October 25th, 2010, 09:29 AM
Can you ask your doctor about Stelara? When it launched, we had patients come in and talk to our company (Johnson&Johnson) to share their stories about how well it worked for them. It really changed some people's lives. I'm not sure if you need to be at a certain severity or not. It's one shot every quarter if I recall correctly.

Good luck!!

October 25th, 2010, 10:02 AM
I assume this is past the point where steroid creams can control it?

Well, I was going to tell you that not too many people typically get side effects, but the alopecia rate in this one looks pretty darn high.

One thing that's worth considering is that the term "alopecia" tends to refer to hair shedding, not specifically to developing bald patches (alopecia areata) or going entirely bald. So you might just end up with a somewhat smaller ponytail, but nothing particularly noticeable except that you start being able to do intricate buns a bit sooner. Especially since you're on a low dose.

Do make sure you've fully explored your topical options before you go to a systemic drug. But if the psoriasis is bad, you may need to use something like this to get it under control, then can explore less drastic options for the long-term.

Also, are you prepared to avoid getting pregnant for at least 3 years after you go off the Soriatane? It looks like this stuff is NASTY to developing babies. If you plan to have children any time soon, you may want to reevaluate.

October 26th, 2010, 08:09 PM
I have had my tubes tied, so I don't plan on having any more children. It is severe. I would say at least half of the skin below both knees are covered. It is painful. I have started the medication. I am being closely monitored with this drug, and have blood work done this week. I have tried herbals, and topical creams with some help but it is just taking up so much of my time trying to make it better and it isn't working. I only plan on taking this until I can get better insurance, then getting on Enbrel or something less drastic. I will ask about Stelara. The only reason I am taking it is because it really is quite painful and I want to get it under control. Thank you Anje for the great info, and I really do hope you are right!

October 26th, 2010, 08:41 PM
I can definatly relate to you! I have chronic hives which is also an autoimmune skin disorder and it was terrible for over 5 years. Finally my doctor perscribed an immune suppressant called "cyclosporine". He said that it is very effective for autoimmune problems and commonly perscribed for them. The side effects are numerous but quite rare for otherwise healthy people. It worked so well that I haven't had hives since starting it. The best part is that the most common side effect is increased hair growth :). I have definatly noticed that my hair has been growing faster and even thicker. I would definatly reccomend talking to your doctor about it if your current medication dosen't help.