Replies to This Discussion

Permalink Reply by sallylwess on October 13, 2016 at 12:48pm

I'm happy to hear that Plaquenil has for you. I wish I could use it, but it gives me too many stomach problems. I was on finasteride for about nine months. I think while I was on it, I did see much less loss and fewer flare-ups. In fact, I think the flare-ups were pretty much not existent. I did gain ten pounds very quickly. By the the third month I was up six or seven pounds. The weight was distributed in the abdominal area. My waist expanded two inches. I also developed very tender breasts. Very tender. My gynecologist and my endocrinologist both urged me to stop taking it because of the disruption to my hormones as evidenced by the weight gain and tender breasts. I am 71 and am pre-diabetic. I could not risk side effects from the weight gain. I am now battling to get those extra pounds off. I stopped taking the drug last month. My health outweighs hair loss when it comes to treatment. Choice of treatment is a very personal decision that is not easy to make.

Permalink Reply by Lo on October 13, 2016 at 4:42pm

Hey, Will Be Healed!  I hope you are well!  I have been on Finasteride since my diagnosis in December, 2014.  It was the first drug I was ever put on - and have been on it since.  It is SO hard to say what drug, if any, are "doing the trick"... but I take it, along with Celcept and Plaquenil daily... and while I think my hairline is still moving back - it is very slow.  I went 5 years being told I had alopecia areata - and was steadily losing hair from above/behind my ears and at my temples... It went back close to 2 inches in that area.  Since being on the medicine, that area has not really moved much more - and the front/top hairline has been very slow moving.  Would the top/front and sides/ears be worse had I continued doing nothing?  That's the million dollar question.  I can only base it on 5 years pre-medicine and continual recession of the area around my ears and temples... and 2 years post-medicine, things seem to have at least slowed down.  I wish you all the best.  I have had zero side effects of the finasteride - I take 5mg daily. 

Permalink Reply by Tessa on October 14, 2016 at 5:06am

I was on finasteride for about 6 months and it seemed to be beginning to have a positive effect when the doc noticed I had raised liver enzyme levels and took me off it. The gastroenterologist (who checked via ultrasound that liver looks OK) has now said that raised enzyme levels can happen at first with finasteride and that it should settle back down after a while. I'm back on it, but watching bloods regularly to check no nasty effects. Has anyone else had this?

I was taken off plaquenil at the same time in case that was causing the problem.

PS Hair still falling out nicely!!

Permalink Reply by Will Be Healed on October 15, 2016 at 10:11pm

My doctor told me that there are only 5 mg pills and I should only take 1 mg daily, which means I have to my best to cut the pill in 5 peices. This dosage seems low compared to what others are taking. Thank you to those of you that responded. It is helpful.

Permalink Reply by Tessa on October 16, 2016 at 12:01am

My dose is 1mg a day and that is what my pills contain. I'm in Australia so perhaps that makes a difference. the pills are packaged by Hangzhou MSD Pharmaceutical Co Ltd in China if that's any help.

Permalink Reply by SJC on October 15, 2016 at 11:49pm

Hi there WBH,

I have been on Finesteride, 5 mg daily since December 2015.  I have had no side effects.  During the first 3-5 months I grew hair nicely at my temples and the typical "male pattern" recession point, along with no shedding.  So, I started growing hair pretty quickly with this drug.  Since July, the Finesteride seems to be less effective for me.  I have unrelenting scalp redness/inflammation and continue to shed all over my head, at times quite severely.  I also notice FFA recession is increased vs. when the Fin was first started.  It is frustrating as I was so hopeful when I showed a response to the Fin.  I'll maybe switch to Dutesteride next.  I wish you much luck and hope Fin is a success for you! 

Permalink Reply by Jacqui on October 18, 2016 at 5:47pm

Hey Will Be Healed, I am on Finasteride 5mg weekly.  I was meant to be on 1mg daily but the drug is expensive here and the doctor put me on the 5mg weekly for it to be cheaper (I am in Aus). I have had some weight gain but I think that may be because of my diet more at the moment rather than the drug (renovating our kitchen!) No other side affects.  As I have only been on it 2 months I can't say I have seen a dramatic change, maybe some baby hairs but it's so hard to tell sometimes...

I posted recently a study on this drug, you may like to search and have a look?  

http://www.alopeciaworld.com/group/frontal-fibrosing-alopecia/forum...

I also take Cellcept.  I had a year on Planquenil with no results. 

I see my derm next month and if my blood tests are fine she is going to increase the Cellcept.  

Good luck with your journey :)