PLEASE help! My hair is falling out...

[Deanie1]

I was put on a new med for my rheumatoid arthritis and I am rapidly losing all my beautiful thick curly hair. I probably have less than 1/3 left and I expect to be bald by the time we go to WDW in 3 weeks. For those who have gone through chemo, what do you find is most comfortable and cool to wear on your head? I have gone on an oncology site and I want to order two things - either a hat, baseball cap or a scarf. Do scarves stay on when tied like a pirate? Do I bare it all when on RnR? I have stopped taking the med for now but it is still falling out like crazy so I will probably have my head shaved before we go.

 

[CynJ]

First -

I would ask if your doctor warned that this could be a side effect of the medication? If not, it's definitely worth a call to him. A couple of other things cause ramped up hair fall - anemia and Vit D deficiency most notably (I learned that the hard way when clumps of my own started falling out and found that I was severely low in both iron and Vit D)

I was partial to beanie caps myself. The light weight cotton ones really aren't overly warm (and I don't like to be hot). http://www.hatsscarvesandmore.com/c-Turbans.html

FYI - be really careful about sunburn on your scalp and ears. It's easy to forget but a sunburned head is NO fun.

Good luck!

 

[Aladora]

I want to second the

When I did chemo and was not wearing my wig, I wore a cotton bandana most of the time. The one I had was a pre-formed one, similar to the ones sold here. I bought mine at a little shop run out of the BC Cancer Agency where I went for treatment. You might be able to find something similar at a local hospital.

I loved the fact that it took no skill to put it on and I could grab it easily if someone rang the doorbell. I also embraced what I was going through, I even got shirts made that said "Yes they're fake, my real ones tried to kill me!" What you pick to wear will possibly depend a lot on how much you want to hide or not hide your hair loss.

I don't think I have any pics of me wearing one but my son loved to "borrow" one of them and wear it everywhere!

 

[Deanie1]

I think that three of my drugs have possible hair loss as a side effect but I never did notice until I added the third drug on. I stopped it about Sept 1 but I think the damage is done. I am currently being tested for my iron stores and thyroid but so far I have not heard anything back. I am in Canada and we have a good health care system but I have to wait three weeks to see my family doctor. Nine months to a year to see most specialists (in my city in British Columbia). I think the doctors believe that it is most likely the new drug. Luckily, I started off with tons of hair and I am hoping it won't all fall out. I have about 1/3 left and if I could retain this, I will be OK although my part will certainly burn now. But, I imagine it will get worse and then later grow back in. But terrible timing! I guess I will have to wear a hat that ties on at Typhoon Lagoon.

Thank you for that web site. I was looking at it yesterday and then could not find it again. I think I had better order one ASAP as we leave on Oct 16! Any more ideas are most welcome.

 

[Deanie1]

Aladora, II am in BC, in Kamloops in fact. Was it the Cancer Clinic in Vancouver? I thought I would call the Kamloops Ca Clinic but I may drive down to Kelowna also. Thanks for the tips. Do the scarves stay on when ones hair is all gone?

 

[Aladora]

(in my city in British Columbia).

/wave to a fellow British Columbian!

I'm in Victoria so this was at the Vancouver island cancer centre but I am sure if you call your local cancer clinic they would be able to help.

And to answer your question about staying on, I lost all my hair and the bandanas stayed on. They tie at the back of your head, just below where your skull rounds back towards your neck if that makes sense.

You know, I might have the pink one still somewhere. It is identical to the blue one my son was wearing in the photo above...if you would like, I could mail it to you.

Let me know, I'd been hanging on to it out of superstition but now that I am well past my 5 year survival date, my chances of recurrence are slim to be unworthy of stats!

 

[Camshell]

I was put on a new med for my rheumatoid arthritis and I am rapidly losing all my beautiful thick curly hair. I probably have less than 1/3 left and I expect to be bald by the time we go to WDW in 3 weeks. For those who have gone through chemo, what do you find is most comfortable and cool to wear on your head? I have gone on an oncology site and I want to order two things - either a hat, baseball cap or a scarf. Do scarves stay on when tied like a pirate? Do I bare it all when on RnR? I have stopped taking the med for now but it is still falling out like crazy so I will probably have my head shaved before we go.

I had some health issues for the past few years. After figuring things out with the help of a naturopath I discovered I have a gluten intolerance (not celiac). I went off gluten and after about a month everything magically improved. I felt 10 years younger. I've been gluten free for over a year now and feel great.

Anyway I've been reading up on gluten and some folks believe there is a connection between wheat gluten and arthritis. Just passing on some info if you want to check it out. "Wheat Belly" and the "Wheat Belly Cookbook" have a lot of info on this subject.

 

[Deanie1]

Camshell - yes, I have heard about the celiac diet for rheumatoid arthritis and I am also going to be starting that in the next day or two as well. It couldn't hurt! Hard to give up some of those foods but for the sake of my health, I will do that. Thank you for the great advice. I don't mean to be vain, but I LOVED my hair (95% of the time).

Aladora, I have PM'd you. Thanks. I did call our Cancer Society but they can only help with cancer patients. I am also ordering two hats online to have delivered to my sister's in Seattle so I can get them before I catch our plane. I don't know what I will do on roller coasters, though - I guess bare it all? I cannot risk my scarf coming off and jamming the ride, perhaps injuring someone.

And I thought the FP+ was complicated.

 

[Soarin4us]

Try Topsyturbans.com, or google chemotherapy scarves. There are MANY pretty, fitted scarves with ties, that won't fall off!

 

[ttintagel]

I liked both the scarves and the pretty and secure tying instructions at http://www.tznius.com/.

I also liked canvas/denim bucket hats with a standard bandanna underneath to prevent slippage.

 

[Deanie1]

Thank you for the tip. I have bookmarked the site. It wouldn't let me view the bucket hat for some reason but I have just ordered a light colored denim bucket hat from another site. You have great taste! I just purchased a turquoise ball cap today. Normally my hair is so thick and curly that ball caps look lousy on me. I have also learned a lot more about my RA drugs today so I am almost certain that the combination of the two caused this. I am off both of them now but it means very sore joints, especially my feet, for oue WDW trip in a few weeks. Lousy timing!

 

[I Love Pluto]

I lost more than half of my thick curly hair due to thyroid issues. I found the baseball cap (which I could never wear with thick hair) to be of great assistance in my daily wardrobe.

It prevents sunburn, it looks cute, & they are stylish. They have really nice hats, such as the pink Minnie through the years one. It's OK. You're not alone.

 

[Deanie1]

Thanks, I will certainly look for that one. I plan to get one as soon as I hit the parks in 3 weeks. I hope I still have some of my hair left by the end of our trip.

Pluto, how fast did your hair start to come back in again after your thyroid issues were resolved?

 

[I Love Pluto]

It took about 3 months on the meds to see a difference. My hair is less brittle now also. It will grow back - not as thick as before - but it will grow back.

 

[Deanie1]

I am so glad to hear that your hair all came back. I had very thick hair so if it does not grow back again as thick, that will be OK. I sure hope it stops falling out soon though or else I won't have any left in a few weeks. I hope it lasts until Halloween Day as that is the day we get home.

 

[ratlenhum]

I have RA and take methotrexate and plaquenil. My doctor also put me on 1mg folic acid daily and it helps with hair loss.

 

[Deanie1]

I have always taken 5mg of folic acid the day after my methotrexate but since the hair loss, I have added 1mg/day on the other five. I can't get in to see either my family doctor or my rheumatologist until Oct 1 so I am just kind of fumbling around on my own. I am doing this as I can no longer get my Enbrel covered unless I try all these other drugs first. So, I will have some pretty painful joints in WDW. I might have to tone down my commando style Maybe I will indulge in more pool time .

 

[Worldgirl]

I have juvenile rheumatoid arthritis, I've also experienced a lot of hair loss to due my medications. I'd say I've lost roughly 50% of my hair but I have extremely long hair that goes all the way down my back so it's only noticeable to those who know me or actually look at my scalp. I currently take daily oral chemo class drug Arava, Diclofenac sodium, and weekly Enbrel shots. I used to be on oral Methotrexate but switched to the Arava due to a lot of vomiting. I'm not sure if it's an option with your insurance but I've noticed my hair loss has slowed down since switching to the Arava. This might be because with Arava I've also been allowed to take 4mg of folic acid every day. My doctors also have me on 10mg of the daily supplement called Biotin to promote hair re growth. I'm not sure how helpful it is but I have noticed several short new strands.

As for how to cover up the hair loss I normally use headbands and scarves to cover the front of my scalp and make it less noticeable. In Disney I wear a mickey ears hat everyday however I don't ride roller coasters.

I hope your still able to enjoy your Disney vacation despite your joints.

 

[Deanie1]

Worldgirl, thank you very much for the post. I am trying to learn as much as I can about the hair loss. The reason that I started losing hair in the first place is because my drug insurance plan will only cover the cost of my Enbrel only if I try every other drug first. Enbrel is just so expensive that I could not afford to pay out of pocket for it - $1540 for 4 wks here in Canada. So, I had to try sulfasalazine and 25mg of injectible methotrexate. I might have to do Imuran next and that should be it. I took Arava several years ago and while it seemed to be woring, I had an allergic rxn to it. I bought some biotin from the health food store but I am going to make sure that I take 10mg based on your post. I'm kind of flying blind here as I can't get into a doctor for another 8 days.

Do you remember how long after stopping the mtx it was that your hair loss slowed down? I have been off the sulfa now for 22 days but I seem to lose more and more hair each day. I just want it to last until Oct 31 (the day we come home).

Thank you everyone who has responded and I would love to hear from anyone else. I just love the help and support from the disBoards.

 

[Worldgirl]

You're welcome, I've also tried to learn as much as I can about the hair loss. I even got a hair cap to wear during sleep to prevent my hair from being pulled out by tossing and turning, It's hasn't really helped though. Over here in America the Enbrel price is even worse, $500 per shot without insurance. Sorry to hear about your allergic rxn to Arava. I've never found biotin sold in amounts larger than 5mg so I take 2 5mg pills a day together.

The hair loss started to slow around 2 and 1/2 weeks after the mtx and it got down to what it's currently at around 1 month and 3 weeks later. However I was on a lot less than you are on. It was only 8 mg orally once a week combined with Enbrel. I'm pretty sure any of my current hair loss from Arava. The doctors are still trying to find the right drug combination for me, and if the JRA isn't under control in 2 months the next drug is injectible mtx.