Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
My hair has fallen out significantly, so much so I can see scalp in some areas. I take enbrel, Plaquenil, and was on arava. Because of severely unpleasant side effects and then the hair thing, my rheumy said to stop arava, which I did two and a half weeks ago. No difference. It actually began back when I introduced arava...so we assumed it was arava coupled with the fact it is a known side effect of the drug. It increased astronomically, however, when I introduced enbrel.
Someone mentioned on here Plaquenil can do it...so I took it upon myself to decrease my daily dose from 400-200mg, but pain creeping in and don't want to harm my joints long term so may not do that.
Called rheumy hoping for a script or something. She asked if I was taking vitamins and biotin to which I said YES, then asked if I was still on folic. I said no, and she asked why. I said, uh, because I'm not on methotrexate. She said take the folic. This is all we can do she said.
Help. I am literally going bald, so much so husband noticed and said something similar, so I know it isn't just me freaking out. Enbrel makes no mention of hair, but I know it started writhing the week of my first injection coming out in clumps. I will need a wig come 6 more months of this.
Someone mentioned on here Plaquenil can do it...so I took it upon myself to decrease my daily dose from 400-200mg, but pain creeping in and don't want to harm my joints long term so may not do that.
Called rheumy hoping for a script or something. She asked if I was taking vitamins and biotin to which I said YES, then asked if I was still on folic. I said no, and she asked why. I said, uh, because I'm not on methotrexate. She said take the folic. This is all we can do she said.
Help. I am literally going bald, so much so husband noticed and said something similar, so I know it isn't just me freaking out. Enbrel makes no mention of hair, but I know it started writhing the week of my first injection coming out in clumps. I will need a wig come 6 more months of this.
Really.......
I am concerned it's the enbrel, though. Or enbrel is making it worse.
It's terrible. I have lost so much, honestly. It comes out in massive handfuls every day. I am almost in tears sometimes over it. It's just really saddening, you know? Thx for the comments.
I love my hair. and i have craploads of it. it's like as large as my italian personality. i whined when I cut it off before the neck surgery (above the brace) but I was not going through what you are. i realize intellectually that who cares about hair. But in reality my hair runs through my emotional fault line. Mine fell out shitloads when I was on MTX. but NOT with any of the three biologics. I am feeling for you.
was there a time when you were NOT on plaquenil and you were on a biologic so you can sleuth this? what do you think about the folic advice?
I can already see a response or two now...
something along the lines of these are the sacrifices we all make for treatment....
yeah again, makes since intellectually BUT in reality not all of us went bald at 33 with treatment
hang in there Lion, tell us what you find.
Depot
Keep us posted.
Trish, I knew you used something and that's one reason why I called. I was hoping for a medication to help (couldn't remember the name at the time), and she virtually said this is all we can do. My next appt I will ask for it by name.
And let me reiterate, this is not thinning but seeing down to the scalp with nothing more than one thin layer of wisps to cover, several areas around my face. Literally, in 6 months, I'll probably need a wig if this doesn't slow down...maybe sooner.
annette has a point - maybe a shorter 'do might make you feel more in control? a lot of women are wearing it shaved on one or both sides.
good luck!
Was taking 3000mcg biotin but bought yesterday 10,000 mcg one a day biotin.
On multivitamin.
Taking slow fe iron, my h/h and rbc were low last visit, not to mention my wbc count, but unsure if that is partially to blame or not.
Be patient and keep taking those supplements!
Good luck!
Emerald
Everyone, what about Rogaine for women? Worth a shot, any one have experience or know someone that does so you could give some info on it and it's outcome?
And yeah, I rarely wash anymore...but am indoors predominantly so it stays fairly clean long.
Thx again everyone!