Will it ever grow back?

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Regular Member

Date Joined Mar 2006
Total Posts : 147
   Posted 5/16/2007 10:32 PM (GMT -6)   
The past two weeks or so, I noticed my hair started coming out again. First it was just a few strands here and there. On my pillowcase, my towel, or on my shirt. And now, it's just coming out whenever I'm running my fingers through it, in the shower, or just brushing it. I find myself crying in the shower, because it just upsets me so much. To just see the hair in my hands or to have to clean it out of the drain. It's worst enough knowing that I have to take all this pills just to survive and function everyday. That's fine, I can hide that and people won't have to know that I'm sick and I can deal. But I don't want to look like a sick person and have people pity me.

But I'm just so tired of it. I miss my long hair, and I haven't been able to wear my hair down since this whole ordeal began. And I just can't take it. It would stop falling out and finally start growing again. But then I'll just lose it all, and I'm back where I started. I'm tired of covering my head with scarves and hats and keeping it pulled back to cover up the bald spots.

Will it ever just grow back?
I was diagnosed with Lupus with Antiphospholipid syndrome in Nov 05.
Current list of medications includes:

Cellcept 250mg/4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 10mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day

Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.

Rituxan infusions twice every six months

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/17/2007 4:45 AM (GMT -6)   
((((((heidi)))))), I'm so sorry sweetie, A woman's hair is her crowning glory. so they say anyway. The good news is that I have read a lot about hair growing back. I don't know what meds yoy are taking as far as what they do to you. I'm sure others here can help you with that. I have noticed that my nails are growing like crazy. Not sure which drug it is that's doing that but if imagine if my nails are growing my hair is growing too. I used to have such thick hair and a couple of years ago it started falling out in hand fulls when I would brush it. now it is thin but it still looks ok. there are things they advertise on the web about hair care products for lupus. I don't know how much they work though.

I know the hair bothers you but I also know it's not just the hair. It's all of it This crappy disease that wants to leave no part of your body untouched. It's relentless and it's tiring. and you just want to feel normal for a change. I know sweetie we all feel that way sometimes. Please just tried to hang tough and keep coming and sharing your feelings with us. We all know what it feels like and we all love ya .
God Bless ya!
God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , vicodin.5x3, Evista for osteo,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex. pred.10.mil.
Come ye, all that are weary and heavy laden, and I will give you rest!

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 5/17/2007 9:13 AM (GMT -6)   
Heidi, I'm so sorry you are going through this and I know how upsetting it is. I've been having major hair loss since Feb of this year. I used to have lots of curly hair and now it is thin and fine and lost most of its curl. It's very upsetting seeing your hair in the drains, your hands, and in your brush. Not only does lupus cause us hair loss but a lot of the meds we are on contribute to it too.

The good news is that it will grow back. The other day I was doing my hair and I saw a patch where a chunk had fallen out and was now growing back. I'm not sure if the new growth can keep up with the rate I'm losing hair though. Some people here have reported good luck with some shampoos for thinnning hair or hair loss. I've heard people mention Biotin (I think that's the brand).

I agree with Carol in that the ssadness can come from everything that this disease takes from us and seems to leave nothing untouched.

Hang in there and take care.

Do you still feel like the infusions are helping you?
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Regular Member

Date Joined Apr 2007
Total Posts : 81
   Posted 5/17/2007 12:12 PM (GMT -6)   

Hello there,

I lost a lot of of my hair through chemo.  My eyebrows too.  I always had my hair cropped and spikey.  Even though I have periods of losing it now when I am in a lupus flare that lasts for a while, I find it rather disconcerting even though I am sure it will come back in fullness before long. 

As you know our hair often thins and can become somewhat patchy when lupus is active.  Not all people go through this but those of us who do usually get the growth back when our flare is under control.  

This doesn't happen unfortunately with people with discoid lupus, as the scars that are left by the rash leave permanenet bald areas.

Also some of the medications can make the baldness happen.  Cytoxic drugs can cause it.  The hair should regrow when the drug is discontinued. 

Take care everyone.

goldenwings  yeah

Regular Member

Date Joined May 2007
Total Posts : 20
   Posted 5/18/2007 8:46 PM (GMT -6)   
i too have lost alot of hair.i used to have beautiful thick blonde hair.now i have very thin hair.its very hard to lose your hair.but im sure you are a beautful woman.i do know that it does grow back .i had to stop my chemo for a few weeks and its starting to come back in.but i have to start chemo again in a few weeks and it will go again.hugs to you ...love marie

Regular Member

Date Joined Apr 2006
Total Posts : 41
   Posted 5/19/2007 7:07 PM (GMT -6)   
I was looking at pre lupus picture of myself the other day with my long beautiful thick shiny healthy hair. Then I looked in the mirror at my kinda long much thinner hair that I keep up or pulled back to cover the several bald spots along the crown and back and one side. And had to clean out the shower drain today (losing hair is more common than not for me with lovely disease). I was completely distraught about my hair during the first five years of this, and now, it doesn't really matter as much to me, largely because I feel lucky and blessed to have a "mild" case and still have kidney and other organ health. My hair sometimes grows back, then it goes away again.

That said, I am very very self-conscious about my hair, and although I can embrace it sometimes, other times, I mourn. I'm so sorry for you you. Big Hug!

SLE diagnosed 1992
Peripheral Neuropathy diagnosed 2002/2003
Type II Diabetes diagnosed 2006
Meds: plaquenil, neurontin, relafen, nortryptiline, soma (as needed)

Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 5/21/2007 8:08 AM (GMT -6)   
It is horrible isn't it? I used to love the fact that I didn't have to "style" my hair really and I could just brush my fingers through it and it looked decent. Now I have to tuck it back behind my ears so I can make sure the sides are covered. I have been thinning really bad where most men recede and to me it looks horrible. You can't tell the way I style it now but I always have to be aware of it so I don't go back to my old habits of just pulling it back.

Ponytails now too are a bit of a hassle. I have to make sure that all the thinning spots are covered. Ponytails used to be a hair-do of convenience but not anymore :(
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


Regular Member

Date Joined Jan 2007
Total Posts : 135
   Posted 5/22/2007 4:51 PM (GMT -6)   
My hair is thinning too. It seems to come in phases. Right now it's thinning again. After a shower I lose a handful. After brushing my hair I wave goodbye to it as I put in the trash. It's awful! And it does grow back but it never seems to catch up lately. My rheumy put me on a multiple vitamin with minerals, folic acid and extra vitamin B complex and I am praying it helps. He also says that meds used to suppress the immune system that we take thins your hair. Flare do to. I'm so sorry your hair is thinning. I hope and pray it grows back twice a much soon.
Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SVT tachycardia/Arrythmia '06, SLE '07, Raynauds '07....Plaquenil, Hydrochlorothyazide, Cardizem, NorQD, Naproxen, Folic Acid (for mouth/nose sores), Multivitamin, Flonase.

Regular Member

Date Joined Apr 2007
Total Posts : 81
   Posted 5/22/2007 6:37 PM (GMT -6)   

Hiya everyone,

I have just received some new information concerning hair loss like e go through.  Unfortunately at the moment I am having problems using my hands properly so I am finding it difficult to type without editing and re-editing everything.

The info points to iron deficiencies being one of the causes.  When I am able I will post it here so you can have a look.

Take care.
goldenwings  sad
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