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E42brchick
09-03-2012, 08:50 AM
Hi all,

I've been a bad flare for about 6 wks now so I went to a 2nd rheum for another opinion. My regular rheum is very good, ver nice, but at my last appt with him he basically conveyed that this is as good as I will feel unless I have organ involvement. So basically unless I start to have kidney or liver issues this is as good as I'm going to feel and I refused to accept that. I'm still having severe joint pain, stiffness, brain fog, and severe fatigue. Then there's the hair loss. It's getting severe. The round bald patches are coming back above my temples. My hair is very thin now. I'm losing chunks at a time and I am having side and flank pain. So this other rheum did a full rheumatology draw. 10 vials and a urine sample. Hoping to get the results tomorrow.

I know severe hair loss can come with the lupus, but have any of you also dealt with alopecia?

Thanks

steve.b
09-04-2012, 05:54 AM
sorry i cant help.....
but glad you are getting another opinion.

Saysusie
09-04-2012, 10:29 PM
Yes, I have. I lost vast amounts of hair all over my scalp. However, I went completely bald on both sides of my scalp (middle of my scalp). I had to wear wigs for over a year.
While hair loss due to Lupus is usually never permanent, the re-growth is seldom exactly the same as the previous head of hair. My hair did regrow, but the texture is different and it is not nearly as thick. The two spots that were bald remain - to this day - very fine (like baby hair).
Because my hair loss was due to my disease, none of the "so-called" regrowth products (like Rogaine) had any effect at all.
As I mentioned, the good news is that the hair generally always grows back, it just may not grow back in the texture or thickness that it was before.
Nowadays, wigs are so much easier to wear, there are many more style options and many more types to choose from with price ranges from $15 to $200+ dollars. So, please do not despair too much about the loss, it is temporary and you have so many interim options.
I wish you the very best..

Peace and Blessings
Namaste
Saysusie

The Survivor
09-05-2012, 10:56 AM
I'm really sorry to hear about the troubles with your hair. I haven't had this issue(yet). I've only had lupus for two years now. However, I have an aunt who has lupus. Her hair has disappeared in great increments to the point where she wore wigs. Also, I know a few people at my dialysis unit whose hair have either diminished or went away completely. So I don't think its uncommon for lupus patients to lose some or even all of their hair. Its most unfortunate, but all you can really do is wait for it to grow back. It'll probably happen sooner than you think.

tgal
09-05-2012, 11:36 AM
I am having to completely readjust to my hair. It crew back a completely different texture as well. I used to have very straight hair and now my hair is wavy! I never lost as much as others at one time but so I didn't have to do the wig thing. Mine happened in pieces over a longer period of time and now my whole head of hair has changed. I have no idea how to fix wavy hair so it is something else I have to learn!

E42brchick
09-08-2012, 08:04 AM
Thanks for the responses. I'm not happy that we have to go through this but it's comforting knowing that some of you have dealt with this so I don't feel like I'm losing my mind lol. I went and saw my first rheum again because the symptoms were getting bad with extremely bad night sweats, mouth ulcers, not to mention the hair loss. I told them about the blood work my 2nd Rheum just ordered so they got a copy of it. My first rheum was so mean about me getting a second opinion! He said my blood work showed nothing and in fact my ANA wa negative this time. Well, so what! I know lupus can "decide" when to show up in lab work so it shouldn't be unusual that the ANA was negative! He says my lupus is mild and the hair loss is not from the lupus. He said I should go to John Hopkins for testing! And he said he didn't want me to leave the practice but if I did that it's my choice. Well darn right it's my choice and if he's going to be offended at me getting a second opinion then maybe I will leave! Ugh-sorry.

So then my new rheum called me and said my liver enzymes were elevated and I need them retested this week. Blood showed nothin eh? They also want me to get a scalp biopsy. Ouch.

I know lupus could affect the liver but can plaquenil also affect it? Is it unusual that lupus could effect the liver before the kidneys? I did have some protein in my urine too. Just some thoughts.

steve.b
09-08-2012, 09:02 PM
..... Is it unusual that lupus could effect the liver before the kidneys? ......

anything is possible with lupus.
i had my lupus effecting my liver when i was diagnosed.
for me steroids, mtx and plaquenil sorted out my liver.....
but it took all three.

indigo
09-11-2012, 03:31 AM
hey,

Just wanted to add my alopecia experience - mine happened with lots of bald patches all over my head, some growing back as some new ones were forming, and i think it had all grown back after a year. It hasn't happened again since. At the time everyone had a different nickname for me - spotted quoll, swiss cheese... but it was the least of my worries actually. I was more concerned about how terrible I felt than how I looked.