ITP and Alopecia, help

[SandyS67]

I was diagnosed with ITP in 2012 at age 45. Within 5 months of being diagnosed and on high dose of steroids. The decision was made to remove my spleen. The steroids were taking a toll on my body and I didn’t think I could go on with steroids. I lost my hair and could not sleep or eat. I was good for a month after the splenectomy and then platelets jusy dropped below 10 again and was sent for a series of rotuximab iv’s. I then ate food as close to source as possible. Meat from hunting and veggies from garden. It took a few years but My platelets have gradually inclined and they now stay around 100. A few months ago I noticed a patch of hair missing and went to doctor. I was then diagnosed with Alopecia. I freaked. It took me this long to get my hair this long. My hair wad really long when the steroids took it. In a couple months I have lost over half the hair on my scalp. Not sure why I am in here writing this, maybe looking for answers or solutions

[Ltinny]

I'm not sure if ITP is causing hair loss, but have a dermatologist check you out for hair loss and get lab work. I have lupus and ITP. I lost most of hair with lupus. The ITP came much later after the lupus. The hair situation is traumatizing, I really understand. I started wearing wigs. They have come a long way since the old days, and are really very stylish and cute, and comfortable. My hair eventually grew back, but as I am in my early 60s I still have thinning hair and globs that come out when I brush it. Sorry to hear about the hair loss, it is devastating I know, but it may grow back if it has not scarred the scalp. That is what my dermatologist said. As long as the scalp is not scarred, it will grow back. So you might want to ask the dermatologist that as well.

[SandyS67 in reply to Ltinny]

I don’t think a male could ever understand what a female goes through with hair loss. In 2 months from behind my ear straight to the front is bald on my left side, big bald spot on top, and 8 loonie size spots from the back and right side. My hair was close to half way down my back 2 months ago. Now there is only a few strands that long. I have appointments for when I am in days off to get a wig. But that’s a couple weeks away. It was hard enough going through ITP and splenectomy. Not sure why our body puts us through this. I could not imagine ITP and lupus. You are a fighter that’s for sure

[Ltinny in reply to SandyS67]

I agree with you. It is absolutely different for a woman to lose her hair. I feel so bad for you, I know that feeling. It's horrible and makes you feel defeated sometimes. I will share with you how my hair fell out, I always had a full head of hair, shoulder length. The top of my head, the crown was completely gone, bald. The back and sides were gone in big patches. At the time I was working in an office believe it or not, and it was one of the most gut wrenching things I had to do. Continue to work while everyone whispered. I went to a hairdresser to see if she could even it out somehow (because it was to my shoulders), maybe even a pixie cut, but the baldness was still there. She sold me some shampoo for my scalp, and proceeded to laugh and say, "one of the customers said why are you selling her shampoo when she has so little hair?"

At that point I was totally destroyed emotionally, plus dealing with the illness of lupus. I have not stepped foot in a hairdresser since then, 20 years ago. I started wearing wigs, and even though my hair has grown back in, I still wear them when I go out. It works for me, I never have a bad hair day. If the hair loss starts again, I have the remedy. The wigs these days don't have to cost a fortune, and believe me it lifted my spirits 100%.

Men don't realize what women go through with hair loss. People who have never had the issue I don't think really understand how severely emotional it is.

Hang in there, if you decide you want to try a wig, I'd be more than happy to give you a few wig sites to browse! It helped me tremendously

I'm glad you are going to actually see someone to fit you for a wig. That is great. I never did go anywhere, just shopped online b/c I had so much anxiety from the episode at the hairdresser..I didn't want anyone to see me like that. If you can get a consultant in person, to fit it and trim it..that is awesome! Let me know how it goes for you. In the short term, if you want to browse wigs online that is an option as well!

Take care.

[SandyS67 in reply to Ltinny]

Fortunately I drive a big truck and am alone all the time. I work with 70 male drivers, I am the only female driver. The guts laugh and tell me to join the club, they just don’t understand. I do hav a hard time going into grocery store and yes you see people staring and you just want to crawl in a hole and stay there. You are totally awesome and strong. Women in an office e can be mean. At least all the guys I work with have not stared or said a word, they all still treat me the same. Just like one of the guys. So I avoid restaurants and mostly eat what I can cook with microwave in truck and I have s fridge. I totally admire your courage.

[Ltinny]

Working with guys does make a difference, they usually are not petty like women. They say join the club..agh..they don't know the severity for women of hair loss, but it is kind of nice that they include you and in a way are saying..it's not a big deal to them. That is quite a nice human quality they have going

It has to be difficult being on the road with ITP. My doctor tells me don't do any strenuous sports like skiing, or contact sports. I bruise so easily, and definitely protect your head at all times, because if you bump it, you do not want a bleed. I feel like a mother hen! But I'm only trying to pass along info I have found out that may help others.

Being strong is a good thing, but usually we do it to survive. I know you are going to love getting the wig. It is actually fun after you get used to it. You will be out in those restaurants in no time! No more settling for microwave food. Let me know how it goes, b/c I was not brave enough to go somewhere in person to get a wig..I did the online thing.

More chat later

[SoporRose]

I'm not usually someone who advocates supplements, but when my hair started to thin, my mother sent me vitamins for Hair, Skin, and Nails, and they seem to have helped arrest the hair loss. I noticed a difference in my hair growth within a week of taking them. I've tried three or four different brands, depending on what's on sale at the store, and they all seem to work equally well. I do find that if I stop taking them for a few days, my hair starts thinning out again.

I am sorry you have this disappointment and stress in addition to the others that come with these illnesses. Hair loss really is traumatic for women. Bald men seem to be all the rage right now, but hairless women sure aren't.

Ruth

[prudencepayes]

Hi Sandy

I am also suffering from ITP and alopecia areata (patchy hair loss). I have a bald patch behind one ear about the size of the palm of my hand. I have had so many different powerful drugs to treat the ITP (prednisilone, rituximab, azathioprine, mmf, eltrombopag) that I am unsure whether the hair loss is a reaction to one of them, or my body recovering from one of them, or just another auto-immune episode not related to them. The good news is that 4 months after I noticed the hair loss there are definite signs of regrowth. It is growing back snow white but I understand this is quite common and it should eventually regain its normal colour. I don't really care what colour it is as long as I have some hair. I have read that the hair does regrow in over 80% of cases, so keep your chin up. You will get through this.

[SandyS67 in reply to prudencepayes]

Keeping our chin up and fighting is about all anyone can do with an autoimmune disease. Thank you

[jjjamesholder]

Thanks for posting your experience. It may help someone. ITP remains almost a mystery. We need clues and tracks to look down. I had athletes foot for 40 years between the small toe and second small toe. Once I got ITP it stopped. There is a relationship but not yet discovered. I suspect there are many causes, but we do not seem to know any of them.

[SandyS67 in reply to jjjamesholder]

Anything autoimmune is unexplained, we can tell our body all we want to just stop already but unfortunately it never listens.

[SandyS67]

I just found this site from searching in line for ITP and Alopecia to see if they were related. I wish I knew about it earlier. I am amazed by how many people there are like me. It does somehow make it a little easier knowing I am not the only one with this fight.