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Hair loss, help!


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#1 Patty Arche-Hueck

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Posted 20 October 2010 - 08:14 AM

Since I am feeling better I went to the beauty parlor today. I know I am losing hair, but my beautician saw how much it is and also how my hair has changed structure. I mean, it was very thick, and now is fine. Also while I am blessed with so much hair, I am losing it and is noticeable. Now my question, is this due to scleroderma, or to the prednisone? Please let me know.

Hugs,

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#2 janey

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Posted 20 October 2010 - 11:19 AM

Patty,
I too, suffered hair loss, a great deal of it, when I was on Methotrexate. Many of the immunosuppressants are really just low dose chemo drugs, so they can cause some hair loss. I changed the hair style a couple of times so that the thin hair wasn't quite so noticeable. I've been off methotrexate for 3 years plus now and my hair has grown back plus some. The other day while taking a breathing test, the technician commented on how thick my hair was and what pretty hair I had. I was thrilled! So I would probably chalk it up to the meds rather than sclero. The good news - it does grow back!
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#3 miocean

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Posted 20 October 2010 - 02:29 PM

I, too, lost hair at the onset of scleroderma, but it became thicker again. I always had fine hair, but a lot of it. It thinned out a lot. Over the years it returned to normal. Now it's thinning again, but that's because of Prograf, an anti-rejection drug I am on. I know it's frustrating and affects your self image, but in the scheme of things, it's not the worst that could happen. Part of it is age, and part of it is the changes of scleroderma, but I accept myself for what I am way more than I ever did, wrinkles around my mouth, flabby skin (better than hard skin!) and all. Talk with your hairdresser about treatments that might make your hair look thicker. It might help.

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#4 gigi08

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Posted 20 October 2010 - 03:18 PM

Hi Patty,
I too suffer hair loss but mine is alopecia. Is yours coming out in round spots or thinning all over? Mine starts with a small round spot and gets bigger. 9 years ago I lost just about all my hair and it did all grow back in. I have thick hair. I have suffered from hair loss for the past 9 years off and on. I am currently being treated again for it. They say that stress can cause it. It is an autoimmune disease. I get steroid shots in the head around the area that is suffering from hair loss. Right now the whole back bottom of my hair is almost bald and it's working it's way up my head. I was just to the doctor last Friday and got more shots. I'm going once a month to get them. The top is still nice and thick which I am thankful for. I would suggest seeing you doctor about it because it can be caused by different things.
Gigi08

#5 Joelf

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Posted 21 October 2010 - 12:46 AM

Hi Patty

I can empathise with you as I think my worst fear when I was diagnosed was that my hair would fall out due to the medication I would have to take. Thankfully it didn't, but I felt that I could cope with almost anything so long as I didn't lose my hair so I do know where you're coming from!! ;)

Perhaps your hairdresser could suggest a new style that would disguise the hair loss you're suffering and as Janey does so rightly say, it will grow back!! :)

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#6 Vanessa

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Posted 23 October 2010 - 08:09 PM

Hi Patty,

I was losing hair by the brushfull and blocking my shower drain at the onset. My hair also took on a most unattractive wire wool look. I found that putting some ordinary oil in for half an hour or so before shampooing helped.

However now thank goodness it seems to have settled down.

So it may just be a stage.

Fingers crossed

Vanessa

#7 Margaret

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Posted 24 October 2010 - 03:31 AM

Hi Patty ,

I have been hesitant to reply to this because I don't have Scleroderma or any autoimmune issues. I did experience my own fine, thin hair falling out (in gobs) several years ago, though, and was told it was due to stress. Someone recommended OTC Gelatin capsules and my primary care physician recommended OTC Biotin. By using both of them, my hair has returned and is healthy again. You could try that combo and see if it works.

I have noticed that since Gareth started Synthroid for his hypothyroidism, that his thick hair is thinning quite a bit. I'm not sure if I will start him on supplements, though.

Take care, Everyone.
Margaret

#8 Patty Arche-Hueck

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Posted 24 October 2010 - 02:18 PM

Thank you guys. At least I am not alone, and it is good to know it will grow back. Tomorrow I have a doctor appointment (with rheumatologist) and I will talk to him about this, thanks. My husband is going with me, so he can remind me all I have to ask (the list thing is great but I am not so good keeping on with it.)
Posted Image Patty

#9 Shelley Ensz

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Posted 04 November 2010 - 07:31 AM

Patty, how did your appointment go? Did your rheumatologist mention anything that can be done to help with your hair loss?
Warm Hugs,

Shelley Ensz
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#10 Patty Arche-Hueck

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Posted 04 November 2010 - 07:40 AM

Shelley, I forgot. Yes you can laugh out loud, I forgot, so many things. I will see him again in December. Thank you for remembering. Sometimes I think only my husband knows I am still alive. (I know it's not true, but I can't help it.)

Hugs,

Patty

#11 Shelley Ensz

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Posted 06 November 2010 - 08:23 AM

Hi Patty,

Oh, I know what that is like! I try to make a list every time I go to the doctor, because I am so liable to forget everything. And sometimes what I forget is the most important thing on my mind, actually. But in the doctor's office, it's not uncommon for me to get sidetracked, usually on something that is more important to them than to me.

Good luck remembering this for your December appointment. With any luck, your hair problem will have resolved by then and you won't even have to mention it. :emoticons-yes:
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 Sheryl

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Posted 06 November 2010 - 09:07 AM

Patty I also, always make a list. In fact every time I think of things even weeks before an appointment I write it down in case I might want to discuss it with my doctor or his nursing staff.

I rewrite the list the night before my appointment and go by importance in case we don't get to everything. I take my list into the room with ink pen in hand. I check them off as I go along. My doctor noticed a couple days ago that I skipped a couple items and didn't have check marks by them. He teasingly grabbed my paper work and answered all left over questions.

I make sure I am up to date on all shots and that they are in my chart and I have my copies of them. I just had the new combination tetanus / whooping cough shot. Since Whooping cough has now made its way back into the United States I thought I would ask about it and my doctor wanted me up to date on tetanus anyways so that one is done. I was going to have to wait until the age of 62 to get the shingles vaccine under insurance coverage. Otherwise it would have been very expensive. Now as of January 2011 many insurance companies will be covering a great portion of this vaccine's price, making it more affordable. Shingles isn't much fun to bear for a healthy person, so those of us with so many autoimmune issues it can really cause havoc for us. I was elated to get this information from my benefits representative this past week. It will cost insurance companies a lot less in the long run. There are many people here on this forum that have already had shingles. I know of about 20 friends and family members that have had this in the past two years. Now, I can stop worrying and finally get the injection in a couple months time. Who hoo!

Everyone, keep up to date records of your medical visits.
Strength and Warmth,
Sheryl

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#13 Patty Arche-Hueck

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Posted 08 November 2010 - 11:33 AM

Thanks for the reply. I am getting a printer,since it is very hard to me to use a pen or pencil,(my hands do not work as good as before) so to do a list is hard. I know is a very good idea, so I am working on the printer, to be able to do it in the computer. I miss myself so much!

I know people with shingles, I do not have them yet, thankfully. This is very new to me. I learned to deal and manage the fibromyalgia pain ,after a few years, but this swelling of my joints and the freezing sensation on top of it sometimes is too much. Now I have to repeat the lung test on January, last one was not too good,so another thing to worry about.

Anyways thank you ! You are always so helpful and nice,and I really appreciate your messages
Posted Image Patty

#14 Jeannie McClelland

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Posted 08 November 2010 - 12:26 PM

Hi Patty,

When I read about you wanting a printer because it is difficult to write, it made me think of a couple of other things. One is that you could get one of those little memo recorders (an office supply place or an electronics 'shack' should have them) and keep your list on it. They weren't very expensive when I bought mine. Also, you might try getting a referral to an occupational therapist. The one I saw had all sorts of resources and maybe they could recommend software that would transform your speech to type. And have you tried the special fat, cushioned pens? They are really easy to grip and very comfortable to hold. My hubby who has very long hands/fingers loves them because a normal pen/pencil is too skinny for him. (Huh, he should have been a piano player!)

:bye:

Jeannie
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#15 miocean

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Posted 08 November 2010 - 02:59 PM

Patty,

I had major problems with my hands. I could barely write and even using a keyboard was difficult. Over the years they have improved. My handwriting is much better, but I have to use a thicker pen with a cushioned grip. The ones I use come with a free refill, the only problem is I lose them before the ink runs out! There are also voice memo recorders if writing is an issue. Good luck with finding a solution.

miocean
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#16 CraigR

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Posted 14 November 2010 - 04:25 PM

This isn't going to be any help at all.

8 Years ago I lost all my hair due to chemotherapy for lymphoma.

There wasn't much left to lose.

I thought it was great - no hair to take care of and no shaving!

Craig