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Just back from my derm and told her I was thinking about going drug free for a while. My hair loss and thinning is slowish and I have never really been that inflamed.
So I guess to tell if it's doing anything or not is to stop. So I have stopped my Finasteride and Cellcept and we will see what happens. If things ramp up at least I can say that taking them makes a difference rather than just guessing at the moment.
And maybe after 3 years diagnosed I am beginning to kind of accept things, if you ever really can that is....
Jacqui
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So glad things seem to have settled for you illustr8r!
I've heard it takes about 6 months (after stopping Finasteride) for the hair to start falling out again. I'm on Dutasteride and would LOVE to quit taking it (made me gain weight) but I'm too worried that everything I have gained, I will lose in a few months after stopping. PLEASE keep us posted in a few months on your results from stopping it. Thank you!!
My derm said Cellcept leaves your system quickly but yes Finasteride will take a few months. I gained weight on it as well but I must say I was drinking more alcohol and eating more junk so it could have been that as well! I ca't say I gained anymore hair apart from some baby ones but maybe it slowed my loss but who knows! We need some clinical trials on all our drugs to take the guess work out. xx
Jacq. I am very much looking forward to hearing how you fair med-free. I was diagnosed in Jan 2015 and have been using clobetasol every day since! When I stop the inflammation gets terrible and my scalp turns beet red and the pain can be unbearable. Though that makes me "unlucky" I appreciate that I'm lucky to have SO much hair my loss is masked fairly well.
I've had a lot of drama with my Doctor's office this week because they treated my urgent need for the Clobetasol refill as not urgent at all. I'm tired of being treated as if my scalp pain is "in my head" no pun intended.
Oh no Dragon&Fox, so sorry about your inflammation and being treated so badly trying to get relief :( Hoping you have had some relief since. I have never really had much inflammation. I can see my activity and have the itchy, crawly feeling. This was much worse on my eyebrows that my scalp but now I have not much eyebrows it's only occasional. xx
Is there anything you do that helps with the itchy crawling sensation? It is a constant reminder of this awful disease
No AnnieMay as really it's not that bad.... I have itching at the nape of my neck at the moment but as I said to my derm, I scratch at it now and then but not enough that I am asking her for relief for it. x
Hi Jacq- I was officially diagnosed in March but I'm sure it really started last summer when out of the blue my scalp started itching like crazy. Just like so many of us I started losing the hair in front of my ears, temples and forehead. My eyebrows started disappearing a couple of years ago but of course everyone said it was age related. My dr has only prescribed topical steroids and now she has me using Tacrolimus solution every other day. I feel like this has all happened so fast for me including so many changes to my skin. I've thought about other medications but I seem to get every side effect and with no idea if anything really works right now it's not worth it to me.
And just like you every time I use the topicals I'm reminded of this awful disease. In some ways I honestly wish I didn't even know I had FFA because it has a way of taking over your life. This is a 'lonely' disease and I'm so thankful for everyone here. Good luck to you and all of us as we try and navigate our way through all of this.
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