My Hair is STILL falling out!!!!!!!!

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PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 11/28/2011 5:32 AM (GMT -6)   
WHAT IN THE HEC!!!!!!!!!!!!!!!!!!!!!!!!  Really.....Honestly......why won't it stop.  I don't want to be bald and I only wish I was exaggerating I am going to be bald very very soon.  I try and not touch it as much as possible.  Thank goodness it is dry from the thyroid disease or Lupus or whatever that way i don't have to wash it that much.  I have to take a valium to do my hair, honestly.  I wish I was kidding on that but I just am not.  I had that super bad sugery in June that because of the complications almost killed me and I have been told I probably always had this Lupus underlying because I have had symptoms of it pretty much forever and a couple times had a positive ANA but nothing else.  When I almost died from that surg and its complications I just never recovered and just kept getting sicker and the doctors kept getting mad at me (for some stupid reason???)  but I finally asked for an ANA test because of my mouth problem actually I had heard about Sjorgens on the radio or something my doctor roller her eyes but ran the test and it came back positive and the game has been on since then.  I have fired her as my doctor as there is so so so much more to that story but my doctor now said I am lucky to be alive at all after that ordeal he can't believe I lived as sick as I was.  He is not convinced i don't have the autoimmune hepatitis and won't be convinced unless I have a liver biopsy and last monday I turned a little bit yellow, not my eyes so much but my skin definitely.  I was on Prednisone for three weeks and been off a week and am DEFINITELY in a flare again....full blown!!!!  But MY HAIR when will it stop falling out....is it a side effect of Lupus this bad.....to go bald bad????????  I mean I am going to be bald soon! cry

jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 110
   Posted 11/28/2011 7:34 AM (GMT -6)   
My mothers hair and mine falls out in clumps. She's taking a supplement from Walmart. I think its by spring valley. It's called hair skin and nails. She swears by it. Her hair is falling out less and she has new growth. I tried it but my stomach will not allow me to take it (i have severe damage from celiac).

U have a lot going on! Maybe that will work for u and be one less thing to worry about...
Jessica, diagnosis: Celiac Disease, Systemic Lupus Erythematosis
MVP, Clinical Depression, Anxiety
Celexa, Atenolol, Prilosec, Prednisone, Meloxicam

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/28/2011 1:07 PM (GMT -6)   
That's gelatin/ biotein capsules. I took it for awhile to help my thin nails and achy joints. It does help thicken nails, since your hair is made of the same stuff as nails it couldn't hurt to try it.
Joy

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 11/28/2011 3:17 PM (GMT -6)   
I think it is the Biotin stuff I did try that but I seemed to get diarrhea so badly, I may give it another try if I can get some other things calmed down. It is just freaking me out! Thanks you all.
Peggy
Lupus Hashimotos Thyroiditis (Thyroid removed 1984) Gastric Bypass 2002
Synthroid 250mcg, Topomax 100mg, Lamectal 300mg, Vit D 50,000 mon/thurs, B12 1ml inj once a week, Plaquenil 200mg 1daily then 2 daily alternating, Prednisone (for flares) Valium PRN, Lasix 40mg 2x daily, Potassium,Percocet 10/325PRN, Imitrex inj or nasal PRN, Phenergan, Vyvanse 40mg, Multi Vit

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/28/2011 4:30 PM (GMT -6)   
Try just gelatin capsules instead. They are harmless and help grow nails, too.
Joy

BEW_thatwasfast
Regular Member


Date Joined Sep 2011
Total Posts : 51
   Posted 11/28/2011 4:43 PM (GMT -6)   
Is your hair long or short?
 
When my hair was in a longer style, I noticed the hair loss more.  I recently got the 'Judi Dench' cut (do a Google image search if you're curious) and it looks much better this way.
 
I also have a ton of cute hats and caps for bad hair days.
 
Hope that helps!!
 
Hugs,
Brandi
dx: SLE 07/2011, OCD 2006, osteoarthritis 2002
rx: plaquenil 200mg/day, methotrexate 10 mg/week, NSAID for pain, zoloft 200 mg, folic acid

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 11/28/2011 5:25 PM (GMT -6)   
My hair started falling out when the other Lupus symptoms started and read on the Crohn's forum that folic acid is good to stop hair loss so started taking that and it has slowed down. This will sound odd as all hair falls out but never had hair come out before. My hair is very short and have it cut every 5 weeks but even running my hands through hair wet would never have any on my hands but when it started falling out it would be on my hands, pillow, in the plughole, shower. My hair is naturally thin and not a lot anyway but you could definately see my scalp more.

Try some normal folic acid tablets, they seem to have slowed it down for me. Like I said a lot of people on the Crohn's forum use them to counteract the meds used that can cause hair loss.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, numerous surgeries for abscessses & strictures. Humira - very bad permanent side effects incl joint pain, hair loss, fatigue & nreve damage. Azathioprine, immodium, simethicone, fludrocortisone, oxycodone, gabapentin, tramadol, amitriptyline, Folic acid, vit d & calcium.

kernal
New Member


Date Joined Dec 2011
Total Posts : 14
   Posted 12/16/2011 6:37 PM (GMT -6)   
PJ - I feel your pain! I actually just got my hair cut in a short style and I already feel better.....I had thick curly hair my whole life and when the Lupus started I lost a ton of it and it hasn't come back. I never know if it's the meds or the Lupus, but it sucks!!!! Please don't feel that you are alone and here a few tips:

Nioxin is a great product that protects the scalp and helps slow down thinning and breakage. You can order it from Amazon or google it for a salon near you that sells it.

I take: 3mg of Folic Acid
Biotin 2500 mcg
Vitamin D3 - 5,000 iu/day


I also take a probiotic capsule - one per day.

I hope this helps. If you can go shorter, do it - it will help.

God Bless.

Karen

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 12/23/2011 1:57 AM (GMT -6)   
Thanks you all. I am going to go to the hairdresser next week I think....yup I have a valium I just checked hahahahahaha this is just super distressing to me along with all the other things going along with it. I try to NOT touch my hair at all I wish I was exagerrating but I just am not, I pretty much leave it the hec alone! I see my rheumy on Jan 3rd, the new Vascular doc about all this HORRIFIC swelling still going on since the "surgery from hell" so now with more compitent people on the job the pieces will start to fit together a little better.

I really appreciate all of you so much, I truly do! For those of you that celebrate Christmas as such MERRY CHRISTMAS, to those of you who don't please enjoy the time the world has allowed you for a little rest and relaxation.

Thanks again everyone!
Peggy
Lupus Hashimotos Thyroiditis (Thyroid removed 1984) Gastric Bypass 2002
Synthroid 250mcg, Topomax 100mg, Lamectal 300mg, Vit D 50,000 mon/thurs, B12 1ml inj once a week, Plaquenil 200mg 1daily then 2 daily alternating, Prednisone (for flares) Valium PRN, Lasix 40mg 2x daily, Potassium,Percocet 10/325PRN, Imitrex inj or nasal PRN, Phenergan, Vyvanse 40mg, Multi Vit

precious flower
New Member


Date Joined Dec 2011
Total Posts : 2
   Posted 12/23/2011 3:56 PM (GMT -6)   
i was diagnosis with lupus just this last August. I was taking prednisone along with my plaquinal and the two toegether was giving me high blood pressure. Which may of been the reason for my hair lost. I almost went completely bald. I also had the thick curly hair and now my hair is just growing back a little now. But it is baby soft and no curl yet. I hope the curl comes back. Maybe talking to your doctor about your medicine may have something to do with your hair. I hope you find the answers you are looking for. Also, if you dont feel weird about wearing wigs, sometimes the cancer society will let people get wigs if for some reason their hair falls out and does not return. But i would definitly talk to the doctor, that may be the issue. :-)

kernal
New Member


Date Joined Dec 2011
Total Posts : 14
   Posted 12/23/2011 6:00 PM (GMT -6)   
Precious Flower - how are you feeling since your diagnosis? The hair thing.....ugghhhhh!!! I think the bottom line is.....if the disease isn't causing it, the meds are most likely the cause....or it can be both.
 
I hope that you are on a med regimen that is helping you since your diagnosis. God Bless.
 
Karen

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 12/23/2011 7:16 PM (GMT -6)   
It is all just freaking me out. I guess if it just hadn't hit me out of daggone nowhere. I was supposed to have a simple little surgery be out of work a week and go back to life as usual, and THIS my life is a cluster......I am 6 months into my recovery and I can finally say this is the best two weeks I have had ....... I had know idea I could get this sick EVER, my brother (a surgeon) said I have always probably had lupus just lying dormant in the background for a long time because I have been symptomatic one way or another for years and when I had this near death experience it just threw my body over the edge to where it could no longer let it linger and just brought it to the forefront. and boy howdy is it here. Geesh! My best friend is a drag queen that is going to be a good thing because we are going to do the wig thing together but he wants me to go do it while I still have some hair so I am not as like freaked out about it. I lost so much hair in the shower today my husband had to come use the plunger to unstop the drain. I literally have to take a valium on the days I wash my hair. I know it sounds wimpy and like "oh grow the hell up" but it is the straw that is breaking my back
Peggy
Lupus Hashimotos Thyroiditis (Thyroid removed 1984) Gastric Bypass 2002
Synthroid 250mcg, Topomax 100mg, Lamectal 300mg, Vit D 50,000 mon/thurs, B12 1ml inj once a week, Plaquenil 200mg 1daily then 2 daily alternating, Prednisone (for flares) Valium PRN, Lasix 40mg 2x daily, Potassium,Percocet 10/325PRN, Imitrex inj or nasal PRN, Phenergan, Vyvanse 40mg, Multi Vit

precious flower
New Member


Date Joined Dec 2011
Total Posts : 2
   Posted 12/23/2011 7:55 PM (GMT -6)   
I've been doing a little better but i have my moments like medicine problems. My hair starting to grow back a little but i am watching to make sure that the plaquinal does not throw my blood pressure up again and plus my prednisone is now on a lower dosage. I only take 200mg of plaquinal because the high dosages cause severe headache for me. I am ajusting to this decease after a life threating attack to my body in August. but i ended up learning alot in a class called "Living Healthy with Chronic Conditions". It help me cope with all this tough stuff at the beginning. I would recommend that class to anyone that struggles with a chronic illness. yeah

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/23/2011 8:51 PM (GMT -6)   
Peggy, two years ago (December 21, 2009) I had GERD surgery (Nissen Fundoplication). The following summer I started having terrible back pains. I went through 4 months of PT to calm my back. December 2010 I fell at work and injured my shoulder and foot. From January to Feburary I was in PT again. Just as soon as I get dismissed from it I get hit with terrible pains all over and fatigue. It was Lupus rearing it's ugly head!

I feel like my surgery triggered my Lupus, too.
Joy

kernal
New Member


Date Joined Dec 2011
Total Posts : 14
   Posted 12/25/2011 11:29 AM (GMT -6)   
I recently went to my first support group for Lupus. It's amazing how differently this disease affects everyone in regards to it's severity. I think i am having a hard time accepting that I have this illness. I don't want to sound negative, but everything in my life has changed since my diagnosis. I feel very limited. I know it could be worse, but I think we all have our own individual journey and experience. I don't think it's acceptable to be in chronic pain for the remainder of my life....or anyone else for that matter. Is there such a think as remission from this disease? I hear of so many people that have flares from time to time, but it seems like a lot of people do well. Anyone out there ever experience a remission? if so, for how long?
 
I just stopped taking Leflunomide because of diarrhea and flu like symptoms. I am on Prednisone and Methotrexate until I see my doc next week. The Prednisone seems to help.
 
I hope that everyone is having a safe and happy holiday......i think you are all wonderful:)
 
Karen

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/25/2011 8:51 PM (GMT -6)   
Well, I do have some days with no pains and the fatigue is mild. I haven't had a feel great day yet, but I'm new to all of this.
Joy
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