Itchy scalp and hair loss

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Jamygirl
New Member


Date Joined Aug 2011
Total Posts : 4
   Posted Today 1:39 AM (GMT -6)   
I have had lupus for 10 yrs now, I'm 33 hears old. One really bad symptom I get is crazy itchy scalp, and then my hair falls out. So itchy I feel like I Mayb picked up a louse! I get my husband to check me everyday for lice. Never any there. It is literally driving me crazy, so many days of tears and depression. On top of all that I get the normal symptoms. Severe joint pain, plerisy, pericarditis, skin rashes, swollen eyes, hands and feet. Headaches beyond belief, depression and great sadness. I have 2 of my own children and three stepchildren all living at home still, they have a really hard time understanding my disease and really bothers them that I can't b like normal mothers who can do things with there kids. I have tried numerous meds none that seem to work long term, or else the side effects are unbearable. So my main question to anyone reading this is about the severe itchy scalp and then the hair falling out. Does this happen to anyone else. Thank you for listening and I'm sorry about the whole speel I just gave u. Pls help me

LupusMomma
Regular Member


Date Joined Aug 2011
Total Posts : 74
   Posted Today 2:16 PM (GMT -6)   
Welcome!! I have the itchy scalp and hair loss. I see a dermatologist for this condition and he prescribes something that I put on my scalp and the itching goes away after a week or so. (I would tell you what it is but I can't remember right now and can't find the bottle I had left) Anyway, I would recommend seeing a dermatologist to just see if there is something he/she can do to help. (my dermatologist is the one who found my Lupus to begin with) Good luck with your hair loss.

As far as your kids not understanding, or having a hard time with your disease, they will get it eventually. I know that it is hard not being able to do everything that you want to with your kids (I have 2 at home) but just know that you can only do your best and that the most important thing for your kids is for them to know that you love them.

LupusMomma

Lalah's
New Member


Date Joined Aug 2011
Total Posts : 4
   Posted Today 5:45 PM (GMT -6)   
Hey Jamygirl - do you take lotsa Omega 3 oils? It helps me with various itches? Helps as anitinflammatory for the joints as well? It's been my mainstay and saviour? Gotta take lots of it though? (I use flaxseed oil with natural vit. e, as i can't stomach fishoils etc). And, I take a fliud tablet which reduces the pressure in my brain to help get rid of headaches? (slow release one, low dose, as my blood pressure is normal, and, anything greater than that, and the blood pressure falls low and it makes me feel yukkier than ever? Bit of a tricky biz?). Good luck with it........... :o)

Jamygirl
New Member


Date Joined Aug 2011
Total Posts : 4
   Posted 9/3/2011 9:36 PM (GMT -6)   
Thank u for ur replys, I will defiantly try the fish oils. I have seen a dermatologist, couple years back I almost lost all of my hair going through a very stressful time. He gave me injections in my scalp to help with hair regrowth, worked really well. But this last flare I'm going through it's happening again. Alot of new symptoms also, it's been going on for over 2 months now. I would luv to wake up one morning and feel good and have no pain. As I'm Sur all of you would luv the same thing. Thanks for Ur help.

Jamygirl
New Member


Date Joined Aug 2011
Total Posts : 4
   Posted 9/3/2011 9:38 PM (GMT -6)   
How much omega 3 r u taking? And what other types of vitamins for ur itchy scalp? I would like to give it an honest try.

mog
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 9/20/2011 3:47 PM (GMT -6)   
Hi everyone,
just found this forum and thought you could help. i haven't been diagnosed with lupus but think i should ask for a test. i too have an incredibly itch scalp before losing three quarters of my hair (third time now). it all started with a pain in my chest, swollen deformed hands and feet, my achilles tendons were locked on for about six months and i couldn't even shuffle, i have hot flushes (but im on hrt), i lost two stone in weight, i have pleural effusion and now high sodium levels. I was initially diagnosed with fibromyalgia, then lymphoma (i had six lymph nodes removed from each armpit before they told me i haven't actually got it), now my diagnosis is rheumatoid arthritis!I take diclofenac, amitriptyline and sulfasalazine. HELP! Mog x

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12165
   Posted 9/20/2011 6:02 PM (GMT -6)   
Ask for the ANA test and the lupus blood panel tests from your rhuemy.
Joy

mog
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 9/21/2011 4:37 AM (GMT -6)   
Thanks Joy
I am seeing my rhuemy next Tuesday and plan to do just that. Do you think I should ask for a referral to a dermatologist before I become totally bald!
Mog

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12165
   Posted 9/21/2011 6:19 PM (GMT -6)   
I would after the rheumy sees you.
Joy

luk4dgudnit
Regular Member


Date Joined Sep 2011
Total Posts : 26
   Posted 9/21/2011 9:20 PM (GMT -6)   
Hello Mog
 
I had the same problem befor seeing a doctor. It was a long battle with all the symptoms and more. Very similar to your symptoms.  I think you should see a doctor and get a referral for a rheumy. At first, the visits can be discouraging but eventually you will get the result needed.
I'm a newly diagnosed Lupus patient and its taken years to get the diagnosis. I also was told I have fibromyalgia.  I was thinking at one point I was just getting old and out of shape :) Needless to say all the pain beginning with the scalp -down to the pain in my toes were all a result of the lupus flares.

mog
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 9/22/2011 11:41 AM (GMT -6)   
Thanks to Joy and luk4gudnit for your replies.

Just had the ana and blood works done courtesy of my gp, don't know when I'll get the results but I'll keep you informed. He can't refer me to a dermatologist though because I have to go through my rheumy. I'm seeing him next Tuesday and hope I'm not totally bald by then! On a cheerier note, I woke up actually crying this morning, I haven't been able to produce tears for 2 years. They were orange but that's a side effect of the sulphasalazine. This site has been a Godsend, there is practically no information here in the UK (Liverpool).
So thank you, the USA for your lupus sufferers and of course John W Henry.

Mog

luk4dgudnit
Regular Member


Date Joined Sep 2011
Total Posts : 26
   Posted 9/28/2011 4:39 PM (GMT -6)   
Hey Mog,
 
I actually plan to post this where all us Lupus sufferers can view. Believe it or not, I was losing hair at an alarming rate. I had rather thick and long hair and within about 8 months I still have some length but its not nearing as thick. But, my television doctor actually said that eating a boiled egg a day will help with the hair loss(protein). Since I have been eating the egg daily, my hair actually has thickened and not so much shedding and loss. For shampooing my hair I use Nouritress. Some JCPenny Salons have it but I order off line. After 4 months of Nouritress and one egg a day, I can honestly say that my hair is glossy, silky, minimum shedding/loss and is getting thicker and growing.

Latina_B
New Member


Date Joined Oct 2011
Total Posts : 10
   Posted 10/15/2011 2:37 AM (GMT -6)   
I guess I'll be adding one more thing to my "complaint list" when I see my Lupus doc. My itchy scalp is driving me insane! Don't know what to do about it. And my mom and grandmother has been bugging me for the past few weeks to cut my hair. I have pretty long hair and I lose a lot of it as well. Like I've never had thick hair even when I was small but come on now. It's my hair and I want it long. So what if I shed a lot and you find my hair everywhere? It's not like you're going through this are you?

PJ555
Regular Member


Date Joined Sep 2011
Total Posts : 79
   Posted 11/6/2011 4:26 AM (GMT -6)   
I have had an enormous amount of trouble lately actually for years but I had a very traumatic surgery in June that was supposed to be super simple back to work in a week and that was to be that. Well.....it didn't happen that way. I suffered severe malnutrition due to being so ill before and the surgery became so major it didn't get any better after. I was in the hosp all together 22 days in June. However on top of all the other complications it seems to have created some sort of "flare" i have lost over 1/2 of my hair and at this rate I have about 1 no more than 2 months before I am bald. I have severe joint pain that started basically in my right hand but it now branchiing out to other joints. The fatigue is barely describable. That actually started over a year ago and I had to drink about 4 or 5 ...5 hour energy drinks a day to make it and they think that led to the major surg I just had that has ruined my life. I have lost my job and a whole host of other things. My Dr put me on Adderrall for daytime sleepiness and fogginess because I was falling asleep at traffic lights or in traffic or having to pull over to rest just to get home. Even my intestines felt tired. It was bizarre. The trauma of this surgery though has made my life a hell but due to financial ruins because we only thought I would be out of work a week and it is now 5 mths into it I went back to work 2 week ago but it is with an internist/cardiologist. He gave me a sample of Nuvigil and it has really helped with the fatigue. M rheum also just started me on Plaquenil and Pred on Tues so hopefully things for me will begin to change. I had trouble getting dr's to listen to me because some of the main symptoms were pain and that made them ignore me. I also worked for my PCP and she was and I do mean WAS my best friend and when I got sick she stopped talking to me. But when my mouth started having this absolutely bizarre freaky feeling I asked her to run an ANA and she rolled her eyes....yup you read it right....she rolled her eyes the ana came back 1:320..however the other panels came back negative but with me being 100% symptomatic and an ana that high she sent me to a rheum. He did more blood work and my vit d was bottomed out my calcium was low and my liver enzymes were elevated. He thought I had autoimmune hepatitis. Well I don't have the hepatitis and he said despite the lack of some blood tests being positive he is saying I have Lupus and starting the trmt. It hurts my feelings though when he says HE understands how I feel because HE is losing his hair too....and he thinks my hair is pretty.....it really hurts my feelings. I cry so hard everytime I wash my hair which is once a week, thank God itis dry as a bone too. I think he should know better. He is a man I am sure he would prefer to have hair but the impact is completely different. I don;t know sweetie good luck with your hair I am going to try your things, I am on Plaquenil, 50,000 IU 2 times weekly, I take a b12 inj weekly multi vitamin plus my meds. I also am a gastric bypass person but it was 9 years ago but I said that to say I only absorb about 60% of anything I take or eat. Good luck....

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1637
   Posted 11/7/2011 7:00 PM (GMT -6)   
While I did not have a ton of hair falling out per se, it was gradually thinning out big time. It was like no hair was growing in! I noticed about 6 weeks after starting plaquenil, my hair started growing back in, I had a lot of new sprouts. I didn't see your list of meds. It seems some of the other drugs cause the hair to fall out such as methotrexate. good luck to you-:) It's bad enough to feel bad but also lose your hair is no fun.....
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r
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