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Posted 11/18/2010 8:40 PM (GMT 0)
I have been on Plaquenil coming up on 2 years.   Before going on it, when lots of symptoms were flaring, hair loss was one of them.  Right after starting the Plaq, that settled down and wasn't a problem for quite awhile.  But the color and texture of my hair did change - kind of bleached out and finer.  Over the last several months the hair loss has been significant and consistant again. 

It may have started in the early spring when I reduced my plaquenil to 200 mg daily on the advice of a new rheumy.   After about a month or so it was clear that symptoms were returning and my current rheumy told me I needed to stay on twice a day dose, which I've done since May.   At any rate - the hair loss hasn't stopped.   I don't really have bald spots - but fear they are in my future if this overall thinning keeps up.  Gobs come out in the shower, and my part gets wider all the time.  The hair is just bleached, dry, thin and lifeless.....and disappearing. 

Is this something anyone has experience with?   I would suspect thyroid issues, since I'm cold all the time, dry skin, etc. - but that's been checked and while the TSH is increasing, it's still within normal limits.

Hate to whine about a vanity issue....but any suggestions out there?

Lucy

Posted 11/18/2010 9:35 PM (GMT 0)
I've been on Plaquenil for 8 years and have never had a hair issue. I don't recall any discussion about Plaquenil causing that, either -- not to say it hasn't happened to someone.

Lupus itself can cause hair issues. Or if you are anywhere near menopause it can affect the hair. Mine is also thinner and a bit bleached out - but my loss was associated with Cellcept and can you really tell if blond is bleaching out or turning gray since I passed 50?

I may have heard that hair loss is associated with Sjogren's Syndrome as well as Lupus. They might check for that.

I know of several who have changed hairstyles to help combat the thinning hair issue. Shorter usually works better than longer styles.

Best wishes,
Lynn
Posted 11/18/2010 11:14 PM (GMT 0)
Like Lynnwood, I've been on plaquenil a long time - about 10 yrs. I never noticed hair loss with just plaquenil but when I had to start on methotrexate, that is
when it began to thin out. I also attribute it to menopause and lupus itself. I think it is a combination of those things. Mine is also dry and flyaway which
I combat with lots of product! I have heard some use a product line called Biotin which I haven't tried. I did have hair extensions put in just to help it
look fuller and feel better about myself.
Posted 11/19/2010 1:30 AM (GMT 0)
Thanks Lynnwood and Anna for your replies.  I didn't mean to imply I thought it was the plaquenil causing the hair loss.  When I started Plaq the hair loss stopped - it just started up again recently and I'm trying to figure out why.  I went through an early menopause 16 years ago - so I don't think that's connected. 

A little web searching from Mayo Clinic and Lupus Foundation indicates hair loss is fairly common with lupus.   Also can be caused by corticosteroids or other meds to treat lupus.   Thanks for the tip on Biotin - looking for other suggestions if anyone has tried something else that works.  I am wearing my hair shorter.  Next step would be a pixie cut and I'm not sure I can pull that off tongue    

Lucy

Posted 11/19/2010 1:35 AM (GMT 0)
I, too have been on this drug for about 10 years and have not had this issue with my hair. I agree with the others that lupus itself will cause thinning hair.....keep us posted.
Posted 11/23/2010 6:19 AM (GMT 0)
Hi Lucy,

I have been on plaquenil for almost 3 yrs. It was about 2 yrs ago when I noticed my first bald patch starting. It quickly grew, then another, and then a third, and they all eventually merged into one big spot on the top of my head. What I ended up having to do was to part my hair farther over to the side. With doing that I managed to cover up most of the damage. In fact, most people in my life (except for family) had no idea that I had a bald spot about the size of a deck of cards on the top of my head.

I ended up buying some fancy hats for the summer time to protect my scalp and also for protection against the possible winds blowing my hair all over the place..

I have since seen a dermatologist and it took trying three different perscription creams over the course of 10 months for hair to finally start growing back. I literally jumped up and down when I started to get baby fuzz growing back on my scalp:) I grinned ear to ear everytime I felt it. No one can make their hair grow as much as we might like to, and so I was thankful.

Since then it's grown back now almost 3.5-4 inches in length..not quite back to my normal length, but it's coming. However, that being said I now have a new bald patch on the back of my head which is slowly growing bigger. It has not responded to creams and now I'm looking at getting steriodal injections into my scalp in 1.5weeks to see if that will stimulate growth. I have been told that the hair loss on the top of my head was caused by lupus flares, but the hair loss on the back of my head is alopicia areata which is totally different.

All I'm saying is that it's been helpful for me to have a dermatologist to work with me on trying to get the hair to re-grow. It might be something for you to consider. A rheumatologist doesn't really specifically work with you on that. They can up your meds (ie plaquenil) if the problem is soley lupus related, but a dermatologist is the one who specializes in the skin and therefore what's going on with your scalp.

For me, I've been told that if my scalp doesn't respond to the injections I'll have to see a new specialist. One that specializes in both rheumatology and dermatology combined.

Anyways, I took a moment to write all of this to you, just in case it might help you out. I know that my hair changing, losing some of it, etc has been hard on me in some ways, and if I can share part of my experience with you it has to help it mean something. I hope you find lots of useful tips to help you out. Take care Lucy.

-Ellie
Posted 11/23/2010 5:48 PM (GMT 0)
Hi Ellie -

I do feel that the hair loss increases when I'm experiencing other flare symptoms.  I've become extremely sun sensitive over the past couple of years as well,  and while I always wear sunblock on my face, etc. - I haven't given much thought to my scalp.   But I will now.  And of course, it makes sense....as the hair gets thinner and thinner, more UV rays penetrate to the scalp.

Thanks so much for relating your experience.   It is extremely helpful.  The change in my hair and overall loss is distressing for lots of reasons, as I know you understand.  I'm so glad you've found someone to work with you on this.  I've had finding a dermatologist on the back burner for a little while due to some patches on my face, but  I'll get on it now, thanks to your advice.   

Best of luck to you with the steroid injections - I hope they prove to be successful.  Maybe you can let us know how that works out?  Thanks again for sharing your advice and experience - it means a lot.

Take care.

Lucy 

Posted 11/26/2010 3:02 AM (GMT 0)
I am glad to know that sharing my hair loss story a bit with you has helped. I also am happy to let you know how my experience with the steriod injections work out. I'm having them done next Thurs morning (one week away) and to be quite honest, I'm very nervous about the whole thing...but I'm going ahead with it. I've pre-warned work that I might not be quite myself that day, or even the following day. I just don't know what to expect from side effects, etc. But, I'll give you an update once it happens.

-Ellie
Posted Today 4:04 AM (GMT 0)
Hi Lucy,
This is my first posting, hope it can help.
I was diagnosed with Lupus 5 years ago. It started with my just not feeling well, rashes everywhere and my hair falling out.
I eventually lost all most all of my hair. Then it was time to go back to work. I'd been out of work 3 months, just trying to
feel better. By the time I went back to work I still had very little hair. I wanted my hair dresser to shave my head so I could
go back to work with a happy face drawn on the top of my head :). She wouldn't shave my head, so I went very short.
Then I found a wonderful line of hair products called Nioxin. I use the Shampoo, Conditioner and a leave in product call
Scalp Treatment. My hair started to come back in, not only quickly, but thick and curly. I had never had thick or curly hair.
It is now 5 years later, I have lost some of the curl, but have not lost my hair again. It grows like a weed. I have to have
it cut every 6 weeks. Now I've decided to just let it grow for a while. The Nioxin is not cheap, but it is worth every penny.
You can try it out by just buying a small 3 piece kit that includes the 3 products I mentioned. The cheapest place I have found
to purchase the product is on e-bay, but many hair salons also sell it. I sure hope this helps you out.
Blessings,
Sally
Posted Today 6:33 PM (GMT 0)
Possi - thanks for your response.  I'm sorry about your travails with hair loss, which have been pretty profound.  Losing it all in 3 days must have been very disturbing, indeed.   I love your comment about getting a "hattitude", though - that acceptance of what is and knowing who we are (anyway) is powerful stuff. 

Sally - Welcome!   As it turns out, I kept up my complaining about the hair loss at my last hair appt. (sometimes complaining CAN be useful) and my  hair dresser confirmed it was much thinner and still coming out way more than it should.  So she suggested the Nioxin also.  I bought the shampoo and conditioner, but I'll be looking for the scalp treatment.  I have only used it 4-5 times, but already I'm seeing new growth at my hairline in front - lots of "babies".  That, and your story makes me very hopeful!  Checking out Ebay is a great tip, too.  Thanks for sharing - it's what makes this forum such a big help and comfort!

Good days to all -

Lucy

Posted 12/4/2010 7:24 AM (GMT 0)
Hi Lucy (and everyone else too :) I know that I said that I would write another post after I had my steroid injections. Yesterday was the appointment with my dermatologist. He gave me 23 injections to the area that I have Alopecia Areata. It didn't feel as badly as I thought that it would. I have to say though that my head was quite numb around that spot for a good rest of the day. He must've put a lot of freezing with the medicine. When it did start to wear off I noticed a residual headache for a while, but a tylenol seemed to clear it up. Today (the day after) I have been feeling a bit over tired, but nothing to complain about. The tiredness could be for a number of reasons, not just the injections. All in all it went fairly well, and I'm happy to say that so far it hasn't seemed to affect me all that much. My scalp is not tender at all today, and life continues on as per normal for me. I will watch and wait to see if I have hair growth. Take care all

-Ellie
Posted 12/5/2010 6:53 AM (GMT 0)
Hey Ellie - Glad to hear the injections (23 - wow!) went well, especially with no really unpleasant after effects!  Sure hope that continues to be the case and I'll keep my fingers crossed that the steroid resolves the issue and you start noticing new growth ASAP. 

Thanks for sharing  your experience and please keep us posted on your progress!

Best of luck, and take care -

Lucy

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