Hair falling out by the handfuls!

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nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 3/4/2009 12:12 AM (GMT -6)   
Is anyone else losing their hair? Over the past month my hair has been falling out by the handfulls! I'm no on any new meds and all of my labs came back really  good this tiime!
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.


Ides
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Date Joined Nov 2003
Total Posts : 6796
   Posted 3/4/2009 12:29 AM (GMT -6)   
But what meds are you taking? Though you may have been on some for a while, sometimes the hair loss component takes a bit of time before it builds up. I was on Imuran for 6 months without problems. Then my hiar began falling out. Found out that Imuran was messing with my metabolism of folic acid. Several years ago I was on prednisone for about three months before the hair loss started. That time I lost over 50% of my hair. It did grow back - not as quickly as I would have liked - but it did come back.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 3/4/2009 5:28 AM (GMT -6)   

Dear Ides,

I'm on quite a few meds...Neurontin, Lyrica, Vit E, Vit D, Nexium, Plaquinil, Relafen, Ogen, Requip, Pravastatan, Cymbalta ,Valtrex and the occasional pain med thrown in. My PCP just started me on Morphine 15 mg. two days ago so it can't be that. I've done this in the past but couldn't pin point the cause. I've been in some sort of flare since Christmas...either Fibro or Lupus but my sed rate is good. It's just disturbing when you brush your hair and the brush is full or you run your hands through your hair and it falls out in what looks like  clumps. There are no bald spots but is has really thinned out all over.

Nurse 2

 


Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.


Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 3/4/2009 11:19 AM (GMT -6)   
Hi Nurse,
 
I'm having that too right now. All my labs look great as well, and I'm on no new meds. Lupus itself can cause hair loss.  Even though our labs look great, we still have the diesease and it will do whatever it wants!! 
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 658
   Posted 3/4/2009 1:33 PM (GMT -6)   
Be sure to read the post "help with thinning hair".  There is good info about the effect of flourescent lighting causing flare/hair loss.

diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 3/5/2009 1:58 AM (GMT -6)   
What meds are you taking? Prednisone and Imuran did that to me but it didnt start for a few months after I was taking it. Might be med induced.
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications: CellCept, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 3/7/2009 9:38 AM (GMT -6)   

Hi!

My hair falling out in clumps was one of my earliest autoimmune clues. High antithyroid antibody levels, and since I take synthroid, much less frequent. Happens about every year, and I keep my hair short.

sue


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 3/19/2009 9:07 PM (GMT -6)   
Well, as I write this I just ran my hand through my hair and a bunch of it came out. It feels really dry too, almost dead. I was able to get my appt. with the new rheumy moved up to this coming Mon. instead of next month. I sure hope she has some sort of majic up her sleve or even a voodo doll......who cares at this point. I had another one of my "stupid spells" as I call them yesterday when I went to see this pain doc for the first time. I had driven the car about 50 miles or so over the last two days which is a big No=No for me. I was up all night with a severe headache and vomiting. I slept the 2hr trip up to the doctors office. We stopped at a mall to walk around and then it hit me.....stumbling around, talking like I've had bloody Mary's for lunch and just stupid confusion. It's like an "out of body" thing....I know that I'm not making any sense when I talk but I can't help it. I know what I need and want to say but it won't come outl Thank goodness my husband took me and was able to talk to the doctor. It turns out that this pain doc is the same sort of doc that I already see....doess the same treatments,etc. and I have no intentions of changing doctors so it was a total waste of time.
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.


aashi1000
New Member


Date Joined Mar 2009
Total Posts : 12
   Posted 3/20/2009 2:20 PM (GMT -6)   
Hi Nurse ,

Don't worry you will be fine as it happened with me also fews months back . I even had lost big patch of hairs and losing hair from all over my head . Initially dermatologist thought that it is becos of lupus and she has given me many shots of steriods on monthly basis but still didn't help much . After few months she also checked my iron level and found out to be low . Once I start taking my iron regularly my hair fall stops and now I am growing back my hairs all over my head .

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 3/20/2009 7:23 PM (GMT -6)   
Nurse, when all my hair fell out on interferon, which is like having a huge lupus flare, plus I alraay was having a lupus like problem, it was due to an elevated FSH hormone, due to damage to my endocrine system bythe disease. There''s a blood test for FSH (follicle stimulating hormone). I got some pretty nasty permanent skin problems too, so endocrine crap can be bad, and they should be able to test and adjust. My ob/gyn is better at the hormones than my rheumie, who did dx my thyroid disease despite a normal TSH based on antibodies, so they help too. My endo is like, if I'm not dying, I'm okay, just keep popping the synthroid and estrogen. also, the endo freaks out whenever I get steroids for AI when I'm so messed up from getting them all along, you know most of us do so much better on them. A good endo is hard to find. My ob/gyn handles all that now and tests alot more and will refer me to someone good, so I go through her. She just tested a bunch of that stuff so its not a hard test to get. Lowerng my estrogen helped alot with my facial hair and body hair. She has helped alot and I have less hair loss as a result. But she ran tests first and I take some other stufff. I'm just saying, if it bugs you you can check with the ob/gyn. When I was on interferon, the docs tested it but didn't do anythng because I was going to be done and it was a common side effect. I was retested laterand they were lots lower near normal.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/20/2009 9:41 PM (GMT -6)   
When I flare here lately mine falls out bad. My hair, over the years, has totally changed textures. It feels like someone else's hair on my hair! I used to have really thick, coarse, straight coal black hair (american indian) Now it's dry and thin and frizzy on the ends. Judy

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 3/21/2009 7:35 AM (GMT -6)   
smhair  One of the great mysteries of life.... tee hee. I recently noted that MY body hair has relocated if you get my hint........I am basically bald where I haven't been bald since I was 11, and the hair that is supposed to be THERE is now what's frizzing around my face! Where can I order industrial strength conditioner??? Oh, never mind, it will probably all fall out just after my next rheumy appt. anyhow.
sue

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/21/2009 12:26 PM (GMT -6)   
sue, Know exactly what you mean! Crazy!

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 3/21/2009 8:51 PM (GMT -6)   
Judy, mine is doing the same thing! It used to be I couldn't use any conditioner and my hair was so thick I had to use special hair bands to tie it. it is long and now just has a fizz ends to it. It breaks off at the ends too so I can't keep it all one length. I ended up buying some clip on hair pieces to give my hair more body when I go out. They are cheap and great. But I also got weird sticking out of my hair on the sides, it wont go completely straight and it looks even like its crimped in the long parts sometimes. what a mess.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 3/24/2009 8:47 PM (GMT -6)   
Wow, it is so good to talk to people who know what it is that you are experiencing! Please forgive all of the misspelled words in my notes. my head usually hurting so bad that I can't reallly focus my eyes and then when I read it back a few days later it lools likeInever finished 2nd. grade. I had a hysterectomy when I was 31 yrs. old (I'm 53 now) so hair in certain places just sort of disappears anyway. Today is a much better day than yesterday. I have increased the Neurontin like the doc said and took Valium to help with the spasm and tylenol or percocet for the pain. about 3 p.m. I started to do a few things around the house. Not too much because I have the energy of a nat.Hope everyone ha a bettter day today.
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.


purplerose652
Regular Member


Date Joined Mar 2006
Total Posts : 124
   Posted 3/24/2009 9:32 PM (GMT -6)   
I have had fine hair all my life. But in the last 10 years it was falling out so much I almost bald. Since I have been on plaquenil my hair has been growing so good. It is still fine, but the bald spots are gone and it doesn't fall out anymore.
Take Care,
 
Renee
 
"Grace by which I stand."
 
Fibromyalgia, IBS,Gerd, Scoliosis, & Costochondritis, Lupus
 
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2741
   Posted 3/25/2009 8:48 PM (GMT -6)   
Hi Nurse2:

I too have issues with my hair falling out. I keep my hair cut real short and if the hair is falling out to much I just take a clipper to it and shave my head. My daughter is embarrassed on my behalf but I don't let it bother me to much. When I was on cytoxan my hair fell out in patches and it was easier just to be bald.

I hope that you can look at the thread mentioned and maybe find something that will help you. I'm sorry that you've got to deal with this. Keep your chin up you're beautiful no matter what with or without hair, you're wonderful.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 3/28/2009 12:46 AM (GMT -6)   
The texture of my hair has changed drastically in the last month or so. My bangs look like they do when I visit salt water areas such as Florida....just friz and unruley. I guess we have to laugh and wonder just what "fun and interesting" things tomorrow brings. Yes, we are all beautiful and strong individuals aand we should be proud of that....fuzz,frizzed or bald!
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 3/28/2009 1:23 AM (GMT -6)   
I've had this as well and it was during a very stressful time 9 months of contract negotiations for the employees of the union then 3 months as the employer negotiating the contract for the staff of the union. What wasn't turning grey was falling out by the sink full. Everyday I do relaxation and stress relief exercises and the hair has stop falling out for now. It can also relieve some pain as well besides we can all use a nap. I hope things get better for everyone.

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, ?????  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg and Amitriptyline 10mg
Life is what you make of it.  Just something I try to remind myself every day.


nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 3/31/2009 1:40 AM (GMT -6)   
BigBry,
The doctor mentioned to me that I should try some meditation, relaxtation techniques, etc. if for no other reason to give myself 15 to 30 min. of time to myself just for myself. I hate to be stupid about this but how do you get started? Did you buy some of your favorite music....buy a special tape, etc. to get started? I'm really going to try it if I have to do it at 2 a.m. in the morning.
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.


Fiesta
New Member


Date Joined Mar 2009
Total Posts : 14
   Posted 3/31/2009 12:16 PM (GMT -6)   
Hi, Nurse2:

Forgive my asking the obvious, but have you been checked for B12 and iron deficiency anemia? My hair was falling out copiously and, even if I merely touched it, that was all it took for handfulls to hit the floor. My hairdresser could not believe it. She had never seen hair so fragile in her life.

The ferritin level must be checked--just having a serum iron will not do. Also, I think several with SLE have said they have B12 deficiency as well, so..... These deficiencies do terrible things to your hair, believe me! Mine is finally growing at a normal rate again and doing fine... after almost a year of treatment. Anemia (was it the iron or B12 or both?) can also make your hair turn gray--rapidly.

As a nurse, I'm sure this is nothing new, but just thought I would mention it....

Take care,

Fiesta
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