Alopecia World
www.alopeciaworld.com
Mycophenolate mofetil (MMF)
Hi all.
I am a regular reader sometimes commenter here.
I am 45 living in Adelaide, Australia. I was officially diagnosed last year after about a year or two of symptoms. Like many of you I had vague things going on which I now realise was FFA. My eyebrows started getting little bald patches and then after working out it wasn't my imagination and maybe some of my hairline was changing pushed it harder with my doctor.
My derm took one look at me and knew straight away. I also get dry skin on my eye lids, the creepy itchy feeling on my hair line and sometimes a itchy face. My eyebrows (what's left) get itchy. My nose and cheeks are red/flushed now as well.
My hair loss so far has been about 2 cm on the hair line only really noticeable to me because I look at it all the time! My hair breaks easily and has thinned. I am an anxious person with a history of depression and my thyroid I think is slowing petering out.....
The main reason for this post was to let you know about my dermatologist appointment. I was on Planquinil for a year and it made no difference to me. I was expecting the appointment to be nothing new but my dermatologist suggested we go on another drug. She wants to go hard to see if we can slow things down. I am now starting on Mycophenolate mofetil (MMF). Which is an anti-rejection immunosuppressive drug for organ transplant. She also saw my notes on the forum and today I started taking Finasteride as well.
Has anyone else taken MMF?
FFA is a bit soul destroying but I am trying to come to terms with it. Like many of you I see thinning hair, no eyebrows and realise it's more common than I think. I have to laugh because where my hair has broken off and trying to grow back (before the follicle closes up completely) it grows back curly. Oh how I always wanted curly hair! Just not sad little sparse ones on my hairline *rolls eyes*.
Love reading the forum, as it makes me feel less alone with this disease. Though I wish we all didn't have it.
Replies to This Discussion
-
Permalink Reply by Lo on
-
I've been in Celcept (mycophenolate) for a bit over a year. I've not experienced bad side effects and I take it with plaquenil and finasteride. I've never had the bad itch or pain with my FFA but do get a sensation along my hairline for sure. I also have the dark red dots at the base of my follicles along the hairline. Those have not gone away the entire time I've been taking the meds. I am losing hair ever so slowly... But honestly it is impossible to sa if the rate of my loss would've been faster or the same or slower in the absence of meds. I often think about going off them... But I'm afraid the process would speed up. I've lost about 1 3/4 to 2 inches around my ears and temples and about 1 inch art the front top hairline. I have. I eyebrows ... Had them cosmetically tattooed. I'm 45 years old as well and found my first bald patch above ear about 6 years ago. Sadly wrongly diagnosed and dismissed for 4.5 of those years. Began treatment about 1.5 years ago. Wishing you well.
-
-
Permalink Reply by Jacqui on
-
Thanks for the reply Lo. I am glad you are tolerating the meds. That makes me feel better about starting them. Yep that is the hard thing to say isn't it about the meds, if they are actually doing anything at all? When I stopped my Plaquenil I was extra paranoid in the mirror for sure. I am not a tablet taker, I just forget to take them! Taking them everyday kind of reminds me I have this disease.... but I guess looking in the mirror does that as well.....I too have had my eyebrows tattooed. Thanks again for your reply, all the best to you too.
-
-
Permalink Reply by BBQueen on
-
Hi Lo, I am also on cellcelpt (1-1/2 mnth), Fin and plaq (5 mnths). Ive lost 1-1/2 in around my face and wear a bang hairpiece. I "think" my hairloss has at least slowed down but I stll feel the itch. Im so desperate for this to stop. Its good to know Im not the only one taking all 3 meds. Its for sure scary but Ive had no side effects ( that I know of).
-
-
-
Thanks for the reply BBQueen. Hoping it's a winning drug combination for you. My itch isn't too bad just annoying. My eyebrows are more itchy at the moment. I cannot however stand a hat on my head as it seems to exacerbate the itch....
-
-
-
Let me know more about your bang hairpiece... My email is lobertella@yahoo.com. I would love to know if it clips in, tapes in... if it just goes on the front - or if there is also hair in the back to "blend". Any information would be appreciated. thanks so much, BBQ!
-
-
-
I will take pictures of it and post them here. I went to a hair restoration place in Salt Lake and she made it for me. Ive had a couple and I keep trying to better them as I learn more. I hate this condition and it has almost broken my soul but this hairpiece is a life saver. I would be in a wig if it wasnt for it. It tapes in the front lace and has clips that are in back. Its about 6 x 2 inch piece. It came about 16" long and the front i had her cut bangs. The most important part is to get the color to match. Its real hair so she added some highlights to match my hair. I wash and curl it. I take it off when i get home from work and wear hats on the weekends. Its not perfect becuz its not my hair but at least I dont have to wear a wig or a hat to my job. I paid about $600 for two pieces she makes out of the one larger stock piece she orders. I would order a topper from Jon Renau if the rest of my hair wasnt so freaking thick. I will work on the pictures so everyone can see it.....
-
-
-
Thank you so much! I have a very good friend in Salt Lake with scarring alopecia... if you wouldn't mind also sharing the name of the place who did it - I would appreciate that. She flew all the way to PIttbsburgh (where I am from) to find a hair replacement place. She ended up getting a lovely piece, but if she could go locally to have it cut/fitted when need be, that would be a heck of a lot easier for her. Thanks again.
-
-
-
Lo, Michelle at Better Image in Sandy, UT made this for me.
- Attachments:
-
-
Hair.jpg, 26 KB -
Hair 2.jpg, 127 KB
-
-
-
-
Lo, Do you feel like these medications are helping you? I think they are slowing it down, but I was hoping for more of an improvement. Maybe with more time on the med's.
-
-
Permalink Reply by sallylwess on
-
These are great, BBQueen.
-
© 2024 Created by Alopecia World.
Powered by
