New Member with Questions

[Chrisb]

Hi All,

I'm new so sorry for all the questions...

Back in April I noticed my hair started falling out. I was tired but I had a low ferritn level of 4. I thought it was due to this.  I also noticed that my eyes hurt a little after work but I thought it was just from the computer screen.

I was misdiagnosed as being anorexic because I was so thin. Well I've always been thin.  So they ran test. I have a slight positive ANA 1:40 but tested positive SSA Speckled.  My hair has been falling out so bad and has not stopped to this day.  My eyes are so dry.  I have all ducts plugged and am using restasis.  My mouth dryness comes and goes.  But I don't have have any joint or pain.  I can still do spin/ lift weights and ride my bike. Although the wind kills my eyes. 

The doctor has recommended plaquenill but I'm scared of more hair loss and I've read that it does nothing for the dry eyes and dry mouth.  Does plaquenill really slow down the progression of Sjogrens?   I had a friend tell me that it slowed her hairloss down.  Any others?

Thanks so much!
Christian :-)

Oh and are there any athletes on the board that can still exercise?  Is there hope?

[Ark mom]

Hello and welcome to the family!

I'm sorry that you are here, but I am sorry that I am here!  LOL. 

My hair is thinner, yes, but I don't think it has gotten worse since the 7 months I have been on plaquenil.  I expect it to get worse as I continue increasing my
Methotrexate dose, a drug I started recently because plaquenil wasn't working as well for me as I wished. 

I have had sjogrens a long, long time.  I have been a serious recreational tennis player, 4-10 hours per week, but have had to slow down due to a high flare this year.  Now that I am feeli better I will get back on the court with the limitation of playing at night or indoors only.  I am going to start getting back into things slowly by working out each day until I am back in shape.  I am determined to be at least somewhat of my former self! 

If I were you I would want to try the plaquenil.  I have had no side effects at all.  Some do, but you never know.  I did get better on it, just not enough, but most of my symptoms are systemic.  Good luck!

[eyeamdry]

I'd agree with Ark Mom.  I' ve been on Plaquenil and methotrexate for six years.  They help, but by no means clear everything up.  We are all different and people seem to be afraid to try medicine.l  I can understand this, but you really have nothing to lose.  If you don't like it, it doesn't work, or makes you sick (nausea), you just stop it.  It might help you a lot and if you don't try it--you'll never know.   Good luck.  Lucy

[laura88]

I've been on Plaquenil for 7 months now.  While my biggest complaints are fatigue and joint pain vs. dryness, I have noticed an increase in saliva.  No change with eye dryness from what I can tell.

[Chrisb]

Wow thanks so much.  This sounds so vain but I've lost over half my hair.  If I lose anymore, I will be bald.  I'm so scared that the plaquenill will make me lose my hair....

Also will I be able to go outside if I take Plaq? I heard it makes you sensitive to the sun.  I also have vitiligo.  I'm hoping it won't make it spread.

[susanep]

Welcome to the board, and I take plaquenil. I have been on it for years now. Before I was on it, I could not lift my arms long enough to brush or wash my hair.

It is worth it to me for that, and I am not aware of any side effects.

I am losing hair, and I had very thick hair all my life, but that has been in the last year so I am not sure what is causing it. Maybe just getting older. lol....

Take Care
susanep

[Styx]

Christian, I am assuming you are male, correct? If so, could the hair loss just be male pattern hair loss (i.e. androgenic)?

I'm losing my hair, but I don't think it's Sjogren's. My family is bald

Styx

[Sleepy In Seattle]

I never lost hair form Plaquenil, but I definitely did (and quite a bit!) from Mehtotrexate - plus the hair I have left is very fine and wispy and breaks easily.

if you are worried about it, ask your doc if it's okay to take daily B-vitamins - and extra Biotin. I have heard that it can help quite a bit. I wish I'd known earlier - I just started taking it a couple of weeks ago.

I hate the hair loss, but still - it's better than feeling so awful all the time. The drugs have worked reasonably well for me with very few side effects - I hope you have the same good luck.