Author Topic: Hair loss - does it stop?  (Read 16982 times)

Corella

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Hair loss - does it stop?
« on: January 02, 2012, 01:34:19 AM »
Yet again I have just blocked up the shower with copious amounts of hair.  Yes I have a fair amount and babies growing all the time but as it goes my hair isnt looking in the best condition - dry/brittle and I have just soaked an entire bowl of warm olive oil onto it for 30 mins and then rinsed with Aveda shampoo and conditioner.

What I want to know is does the hair loss ever subside or stop, I have been on the Plaquenil for about 2 weeks roughly and am now on full dose, will it get worse with the plaquenil or can I hope for some respite?

Why the heck it cant fall from my bikini line or legs I do not know - why does it have to be my hair?

I could cry and yes I sound vain I know but I could still cry. :'(

Joe S.

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Re: Hair loss - does it stop?
« Reply #1 on: January 02, 2012, 06:37:06 AM »
Are you on MTX? Chemo drugs can cause this.
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Corella

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Re: Hair loss - does it stop?
« Reply #2 on: January 02, 2012, 07:10:00 AM »
Are you on MTX? Chemo drugs can cause this.

No, just Plaquenil.  Hair loss started a year ago, its dry and brittle as well but thyroid normal so I am told.

OH well, just pray that it evens out or slows down or even stops at some point.

lolo1979

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Re: Hair loss - does it stop?
« Reply #3 on: January 02, 2012, 08:47:01 AM »
Corella-
I am having the same problem, which I am 99.9% sure is from the plaquenil. It has been going on since month 3 on plaquenil, and I'm now on month 6. I hoped it would slow and stop after a while but it's just getting worse.

I'm now at the point where I'm probably going to have to reduce or stop the plaquenil, even though it is helping me in other ways. It stinks. I wish I had an answer for you.

How long have you been on the plaquenil?

Corella

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Re: Hair loss - does it stop?
« Reply #4 on: January 02, 2012, 05:13:52 PM »
3 weeks, but the hair loss started a year ago.  I have heard that folic acid helps with hair loss - is that true?  Some people say their hair loss is helped with plaquenil, but I know my hair has been crap for a year so not sure what to expect.

Vanity will prevent me from going bald because if the plaquenil makes it worse, I will stop it.

Joe S.

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Re: Hair loss - does it stop?
« Reply #5 on: January 02, 2012, 06:31:29 PM »
I just figure it is the male pattern baldness that runs in the family. My cousin got it in there twenties. I guess that my genes are a little retarded since I am 58.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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mshistory

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Re: Hair loss - does it stop?
« Reply #6 on: January 02, 2012, 07:11:19 PM »
Women lose hair due to androgenic alopecia too, so it may or may not be from the Sjogren's or Plaquenil. Your hair loss may just be genetic (a lot of mine is, though the SjS may be exacerbating it). The only way to know for sure what is causing your hair loss is to see a dermatologist who specializes in hair loss. They will most likely recommend doing a punch biopsy of the scalp to determine if the cause of your hair loss is androgenic or due to autoimmune process, etc. I opted out of the punch biopsy since I don't heal well and I had obvious miniaturization of hair follicles (which almost always means androgenic alopecia).

Unfortunately, if it's AGA, women are usually treated with spironolactone (a diuretic) and Rogaine. I learned the hard way that spiro is NOT a good idea for those of us with SjS...

I am now off the spiro and hair loss has picked up again. It sucks, but not much else I can do about it. Really, Plaquenil is the most hair friendly med you can take to manage this disease - the others have a much higher risk of hair loss as an adverse effect, so I wouldn't jump to blaming the Plaquenil.

Also ask to have your iron and thyroid levels checked often since both anemia and hyper/hypothyroidism can cause hair loss as well.

Believe me - I know how difficult it is to lose your hair. I'm 32 and will probably be in a wig before 40 (if I make it that long with my bio hair - it has always been fine and thin to begin with). It sucks, but I won't jeopardize my health for my hair (which is why I'm now off the spiro).

Good luck and I hope you find some answers.
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Corella

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Re: Hair loss - does it stop?
« Reply #7 on: January 02, 2012, 07:37:39 PM »
All the women in our family have always had heaps of hair - I have tons of it, it started a year ago when my AI symptoms started, I have been on Plaq about 3 weeks - roughly.

Had my thyroid check done back in August and it was normal, doctor has just run a parathyroid check last week so we will see what that throws up.

It has gone brittle/dry as well in the past year - I think it is sjogrens to be honest, although I poured an entire bowl of warm olive oil and left it on my hair for an hour yesterday and it looks marginally better and I added Argan oil as a styling aid.

I think I may up my omega 3 oils, I take 4 a day but there is scope to increase it - according to the label. :(  I had my hair dyed darker back in November and although I have had only 3 weeks of Plaq - actually 4 weeks as I started it and had a short break, it is going lighter and my face - skin pigment is picking up colour if I go out in the sun even with total sunblock, how on earth can a drug change your hair colour? very odd.

And, may I add that yesterday I took my little dog swimming on the beach, we were only there an hour and boy am I paying for it today, I have chest pain, sore airways/dry lungs, aching, exhausted.  Funny how the sun does this to me.

lolo1979

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Re: Hair loss - does it stop?
« Reply #8 on: January 02, 2012, 08:00:35 PM »
Corella,
In a way you are lucky that your hair loss began before plaquenil, because you know that is not the cause- at least for now. People have such varied responses to plaquenil and I've also read that it HELPS hair loss in some.  It's like any drug- it affects everyone differently.

Since you've only been on it 3 weeks, I would wait it out and see how it affects you. You could be one of the lucky ones whose hair benefits from it. Or, you could experience so many benefits in other areas that the hair loss doesn't bother you as much.

It's really hard to say but I think you should give it a fair shot. And this is coming from someone experiencing hair loss from it. It has helped me greatly in other ways, so I am in a bad spot trying to decide what to do.

joanb

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Re: Hair loss - does it stop?
« Reply #9 on: January 02, 2012, 10:55:26 PM »
Hello Corella

My husband was diagnosed with SS five months ago and we have both been reading posts on this forum looking for all the tips on how to deal with it.

Just wondered if your hair loss is to do with anxiety? There has been plenty of that in our house over the last six months and it can affect your hair quite markedly.

Husband has been on Plaquenil for just on three months and his hair is really thick and eyelashes have grown thick where they used to be sparse.

We are also from Australia - regional NSW, currently doing really hot days.

Corella

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Re: Hair loss - does it stop?
« Reply #10 on: January 03, 2012, 01:20:09 AM »
consultant reckons it is the sjogrens - it all started a year ago when the major symptoms started, very brittle dry hair and skin but thyroid is normal or was a few months ago but its been rechecked so waiting on results.

It ties in with my dry mouth and eyes that started at the same time.  I am pleased that I put a big bowl of olive oil on my hair though, made a big difference today and it looks better and I am going to talk to the specialist about taking a vitamin B complex which is meant to help.