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Sarah2010
09-26-2010, 05:31 PM
Hey Gang.
So the Dr. said that she thinks I would benefit from trying a a cytotoxic drug. You all know what i'm talking about..Cytocin, Imuran , methotroxate etc.....I am nervous!! This seems pretty major. What drugs like these do you all take? How are the side effects/ benifits?? This may sound silly, but haves anyone ended up totally bald from these medications?? I ned to hear the good and bad first hand before I commit to one of them. Thanks team, I'd appreciate your responses.
-Sarah

Hillbillie
09-26-2010, 06:07 PM
Hi Sarah,
I take Imuran 200mg a day (I believe that is correct). I take it along with plaqunil and prednisone. I too was nervous about taking it but it seems to be doing some good with my joint pain. I had lost a lot of my hair and cut it off short before starting the Imuran. Now it is not coming out and seems to be growing faster than ever before. I like it short and have had a time keeping it cut as my normal 6 week cut has turned into 4 weeks to keep it short. So I say that it has helped my hair. Hope that helps ease your mind.
Billie

sillylupie
10-09-2010, 06:27 AM
Hello Sarah,

I am sure you have very beautiful hair from your concerns over the adverse possibility!!
Are you looking at getting pregnant in the near future?
If yes, please do discuss with the doctor for the best option.
I've tried Imuran but unfortunately was not able to tolerate - leukopenia (low, decreased WBC).

Good luck and pls keep us posted!

Islablue
10-09-2010, 02:57 PM
Hi Sarah, I too had your concerns when I started Methotrexate 5 weeks ago. I just knew I would have hideous bald spots and feel like crap all the time. Well, I'm happy to report that it didn't ever happen. I got a boost of energy a few days after my first dose. The first three weeks were the worst as far as side effects. Week one - flu like symptoms for 2-3 days and bad reaction to the sun, week 2- flu like for 2 days, still not a great sun reaction but I started wearing sunscreen , spf 50 and that helped. Week 3 - one day .. and you see the pattern. I'm glad that I'm on it because it's helped me have more good days than bad. I got some shampoo called Nioxin and it has kept my hair on my head for now. (I used to work in the hair makeup biz and my hair is IMPORTANT to me.. so i understand! haha)
I use my clip in extensions when I feel paranoid that my hair might look thin. They are really easy to use and you can get them at Sally's. I've had mine for awhile and they are cut and colored to match my hair. I guess they are that little boost I need when I am worried about the look of my hair. Anyway. I hope you decide on something and do it. I'm glad I did. (((hugs)))

Sarah2010
10-10-2010, 11:09 AM
Hey yall.

So, I havn't had a follow up with my rhumey yet...So, no changes in medications for me. I'm still popping the prednisone and plaqulinil on the daily. It's hard to say how my lupus activity currently is because i've been so sick with this stupid mono and sinus infection!!
Sillylupie: I have a son, and do NOT plan on having another for a LONG time :). Thank you for pointing out the concerns with pregnancy.
Islablue: I am glad to hear that you are tolerating and doing better on your new meds :) That sounds great, having more good days than bad days :).. I cant wait to get to that point. SO...about this Nioxin shampoo...where can I get some of this??? I actually have clip in extensions from sallys, thats funny you suggested that!!.I have worn them for years but actually havnt thought of wearing them recently because my dang head gets so sore sometimes. Hmm...well if I can get my hands on that shampoo and start clipping in my "weave" Im sure i'll feel more confident. Its not like i'm bald or have any bald spots..it's just my beautiful long hair is getting thin brittle and im loosing a ton of it!! Im sure I a the only one that notices the changes in my hair, but Im sure u can relate. Thnks for the time. TTYS
-Sarah

Islablue
10-10-2010, 10:05 PM
You can get Nioxin at a lot of hair salons, but if not I'm sure it's online. They have a whole line of stuff. Yeah I love my pop in extensions b/c my hair gets really brittle and thin at times too.
I upped my MTX dosage today and I notice kidney area pain, but not unbearable. Just enough to have me on the heating pad.