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Hair Loss and Johns Hopkins appointment


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#1 aka79

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Posted 30 March 2009 - 06:50 AM

Hello,

It’s been a while since I last posted. I do have a lot of updates.

I went to Johns Hopkins a couple of weeks ago. It was great; they checked me from head to toe and the doctor gave me a tutorial on autoimmunity. He told me that we have to respect the fact that I have a positive SCL-70 and telangiectasias, but since nothing else is affected I should go on with my life and stop worrying so much, I can even pursue getting pregnant. He wants to see me again in 6 months and do a PFT test. He explained that some people with family histories of autoimmune diseases (my sister has lupus and mom has Sjogren's, Hashimoto's, etc) might have positive ANA and it does not have to mean anything; he also told me that he has seen patients with positive scl-70 for 10 years that have yet to develop any symptoms. I am hoping I am one of those lucky ones. He did say that antibodies seem to show up before symptoms appear according to a lupus study. Another good thing is that my nail fold capillaries are normal, I don’t have any signs of Raynaud's and my skin is soft.

Now, the not so good news and the reason why I’m posting. I am going bald!! My hair is falling out like crazy and I probably have a third of my normal volume left. I don’t have any rashes or scars, just the thinning and it’s even. It is really scary and it has been going on for about a month. I had my thyroid checked and although I also have positive antibodies, my TSH levels are normal. Could it be related to stress? I’ve had some major stressful events in the past 3 months: finding out about the positive ANA, 2 surgeries and a complicated pregnancy (I miscarried about a month ago, not due to sclero but to a chromosomal abnormality). The hair loss started while I was still pregnant.

As you can see, I’ve been through a lot recently. I just wanted to recover from all this, but now this hair situation is really scaring me. I tested negative for lupus, and it seems like hair loss related to sclero seems to be in patches from what I have read. Anyone has experienced hair thinning with their sclero? Could it be that bad just because of stress? I am not on any medication other than vitamins.

Sorry for rambling, thanks for your answers.

Ana

#2 Jeannie McClelland

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Posted 30 March 2009 - 07:45 AM

Hi Ana,

It's good to hear from you again, although I am desperately sorry to hear about your miscarriage. One of my younger family members lost a baby due to trisomy 18 a couple of years ago and it was devastating to all of us. Her good news is that her second pregnancy has resulted in a totally healthy, truly splendid little boy who is now 6 months old. I'll keep you tucked in my heart and hope you have a good outcome next time.

That's good news from Johns Hopkins! Hurrah! We'll be looking forward to good news from your 6-month follow-up and PFT, too.

We have a page on Alopecia (Hair Loss) that might be worth looking at.

I've ended up losing most of my body hair (not typical) and did go through a period where I was losing a lot of my 'crowning glory' (matter of opinion!), but that stopped of its own accord and seems to have grown back in. I've become a lot more careful of how I treat my hair and what products I use, so possibly that's helped. I honestly don't have a clue whether it was stress induced, connected with some adrenal insufficiency issues that are resolving, or what.

Warm hugs and best wishes,
Jeannie McClelland
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#3 Shelley Ensz

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Posted 30 March 2009 - 07:47 AM

Hi Ana,

I'm glad your appointment at Johns Hopkins went so well! That must be an incredible, huge relief for you. It is definitely deserving of a Sclero Happy Dance!

What did they say about your alopecia at Johns Hopkins (or, did you develop it since then)? Did they send you for any tests or offer any treatment for it? All sorts of things can cause or worsen hair loss, including thyroid disease, starting or stopping birth control pills, hormone imbalances, stress, and even diet (for example, sometimes it can be caused by gluten sensitivity).

My personal hunch (and I'm not a doctor, I have no medical training at all, not even a fake Internet degree) is that since he gave the go-ahead for pregnancy, it might be due to your going off birth control pills. :rolleyes: But you need to have a medical evaluation to delve into the cause and hopefully restore your beautiful locks to their former glory.

Look at our Alopecia page for more information. It's definitely something to discuss with your doctor, if you haven't already.
Warm Hugs,

Shelley Ensz
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#4 Amanda Thorpe

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Posted 30 March 2009 - 09:11 AM

Hello Ana

I am glad you're back on the board! I am so sorry about the pregnancy, particulary with everything else going on.

Like Jeannie I lost some of my body hair, one day it was there and the next gone! I lost it on my arms and legs, when I realised it had gone I was quite creeped out about it thinking there was a big pile of hair somewhere in my house! :huh: Loosing it from the scalp is quite another thing though. Whilst becoming unwell I did loose a lot of hair when I washed or brushed it but that then stopped as suddenly as it started.

That the hair loss is fairly even and that there are no scalp abnormalities might suggest that the body is shedding what it considers excess hair in response to changes in it. I think Shelley's suggestion that it's conception related may be bang on.

I am glad the doctor was able to give reassuring information regarding your bloodwork and that you can now think ahead.

I hope the hair loss stops and look forward to more posts from you. :)

Take care.

Amanda
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#5 Jeannie McClelland

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Posted 30 March 2009 - 09:30 AM

Oh Amanda! You made me laugh at the thought of the big pile of hair - here I've been blaming it all on my border collies! It could have been mine - I'd better apologize to them. :lol:

Big hairy hugs,
Jeannie McClelland
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#6 Amanda Thorpe

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Posted 30 March 2009 - 11:47 AM

Jeannie, your poor dogs! Of course now I'm creeped out thinking about the pile of your hair as well as mine! :lol: Oh what a freakishly weird disease we have, I'm tellin' ya it's a made up disease, someone took all the worst symptoms of other diseases cobbled them together and called it scleroderma!

Amanda
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#7 debonair susie

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Posted 30 March 2009 - 12:24 PM

Hi Ana,

Never worry about "rambling on" -- really! We're here to support one another and this is the place to air things -- REALLY!

I'm glad you have had your appointment and gotten the information you now have.

As for the loss of hair, you must be my sister :D
I'll share my experience with the hair loss I had, which has grown back, by the way.

Mine took place about the same time my symptoms began displaying for Scleroderma. Mind you, I also have Psoriasis, as well as Psoriatic Arthritis. Neither it nor Sclero fair well in the same body, so "they" broke out in war, acting out at every turn. I began losing hair and like you, I ended up losing 2/3 of my hair -- I was HORRIFIED, Ana! Stressed?? Yes, I was!!!

After about 1 1/2 years, however, my hair had grown back. I have no idea why it happened; I may have, had it not grown back -- I was just relieved it did.

Now, fingers crossed, yours goes this way. In the meantime, "TRY" to get your stress level down the best you can. (Of course, we ALL know how THAT is).

Keeping you in my thoughts, ANA.
....and please remember, we are here --TOGETHER!

Some {{{Very Soft Hugs to tide you over}}}
Special Hugs,

Susie Kraft
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#8 nan

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Posted 30 March 2009 - 01:06 PM

Ana,
Thanks for sharing. I too go to Hopkins. Which doctor did you see?

I remember someone telling me one time that hair loss can happen with Lupus. Just a thought.
Nan

#9 Margaret

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Posted 30 March 2009 - 02:49 PM

Hi Ana ,

Last summer my hair started falling out, especially on top. I don't have sclero, but my primary care physician said it was due to stress. She ordered all the blood work for thyroid, etc., and everything came back normal. She recommended OTC prenatal pills and I'm well over 50! Although I am still very *thin* on the top of my head, it has stopped falling out in gobs.

Take care, Everyone.
Margaret

#10 gigi08

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Posted 30 March 2009 - 03:46 PM

Hi Ana,
So happy to hear that your apt. at John Hopkins went well and that you got such a good report.

You did mention that the hair loss started about a month ago and that you had been to John Hopkins about 2 weeks ago. Did you mention the hair loss at John Hopkins? I can sympathize with you concerning the hair loss and I think I know what you are going through. A little over 7 years ago I started losing my hair. I was seeing a dermatologist at the time for another condition and she did tell me that I had alopecia and told me different things I could try on it. Too much of my hair had fallen out for her to give me steroid shots. I tried everything I was told. I would look in the mirror and wonder, "Why me?" I believed and had faith that the hair would come back in and eventually it did, after losing over 2/3 of it. I was fine until about 2 years ago and I started seeing small patches again so I mentioned it to the dermatologist and she gave me steroid shots in the spots. I got them every month for 6 months and they helped and all my hair came back in just as thick as ever. About 3 months ago I noticed 3 patches again so I called the dermatologist as soon as I saw them and got my appointment. Once again I got shots in the 3 spots and I do have my next apt. on April 6th. She told me that it is alopecia and with alopecia it can fall out and stay out, or it can come back. She told me that the #1 thing that can cause it is stress. She does not think the medications that I am on are causing it.

The first time it happened I had longer hair. I was always dreaming of getting my hair cut short and spiked. I found out that our dreams can come true. Since losing it the first time, I have kept it short and spiked and I love it. :)

I'm also sorry to hear about your miscarriage. I know what that is like to go through also. I had 2 before I had my 2 sons and they are now 31 and 28.

I do hope that you keep us informed as to how you're doing. I would suggest seeing a doctor. if you haven't already. They may be able to help you.

Keeping you in my thoughts
Gigi
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#11 aka79

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Posted 01 April 2009 - 03:28 PM

Thank you so much for all your responses!!! I saw Dr. Wigley, I did mention the hair loss to him, but I guess it's hard to tell the cause because I was pregnant and my hormones were all over the place. He asked me if I had any rashes or sores on my scalp which I don't. Then honestly I failed to ask him what could the reason be. It's funny how my mind blanked while I was there; I even forgot to bring the questions that I had written down. He sent me for some blood work so I will follow up with him about the results.

All these months waiting for this appointment and I blanked!! Hubby couldn't come either!! Good thing is that I can email or call if I have questions :) :) he was so thorough that he even noticed some acne on my back and gave me a prescription. Hubby said that a new definition of a good day is when you go to the scleroderma center and come back with a prescription for your acne... and nothing else!!!

I will keep you posted about the test results. I just hope everything is okay for me to try to conceive again and this hair thing is just stress and not sclero creeping in.

I typed this from my phone, sorry about typos. :lol:

#12 debonair susie

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Posted 02 April 2009 - 07:16 AM

Sounds good, aka!

We all understand how the blanking out goes! Good job in writing out all questions!
Nice that you can email the dr about any questions, too!

Glad you will have follow-up appointment with him.

Thanks for keeping us posted!
Special Hugs,

Susie Kraft
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#13 Kathy D

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Posted 03 April 2009 - 03:08 AM

Morning AKA,

I do not have children but before my last miscarriage I started losing a lot of hair, in the shower, on my car seat, on my bed pillow, you name it. The doctor said it was my body adjusting to the pregnancy, and yes, probably stress too as I was aware my numbers were falling. All my hair has since come back.

Let us know!

KD
Diffuse Scleroderma Diagnosed March 2009

#14 luvbnmom3

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Posted 11 April 2009 - 07:19 AM

When my symptoms first began (Raynaud's, joint pain, heat & cold intolerance) my hair also started falling out like crazy. I don't know how much I lost, but I have continued to lose it but not as rapidly as when it started.

Mine is pretty unilateral; there is some on the right (in the front anyway) but my entire left side is quite thinner & I dry that side 'upside down' so give it life to keep up with the right.

The weirdest thing to me is that the hair loss is on the left side of my head and the majority of my symptoms from the scalp down are on the right. I mean, the left follows suit eventually, but the right is always ahead & worse.

So yeah... lots of hair loss here & it was one of the first symptoms.