Replies to This Discussion

Permalink Reply by TrayG on January 22, 2015 at 3:13pm

Welcome Lynn - no need to apologize, not a big deal.  I was also recently diagnosed as well and have the same medication, use of rogaine and injections.  I feel that my treatment has calmed my scalp down, but I have lost more hair around my crown and by my ears and it's very concerning.  It is becoming much more noticable to me.  My scalp does itch and I've kind of attributed it to the Rogaine, but I'm not completely sure that's the cause.  My body does itch at night, but I just figured it's winter and my skin tends to get dry and has always been very sensitive.   If you are experiencing a rash, I'd probably try to get an earlier appt. at your derm or maybe with your regular dr. just to be sure. 

 

I wish you all of the best....this certainly isn't easy and it's been a daily struggle for me since being diagnosed.  Please keep us posted.  Good luck! 

Permalink Reply by Brooke on January 22, 2015 at 3:39pm

Hi Lynn:  No problem sending the message; we are all here to support each other.  I'm thinking too that the itch/rash is caused by the Rogaine or something else you are taking.  My derm. doesn't think Rogaine works for FFA but some people believe it helps.  I stopped using it because of the itch and then having to wash my hair every day.  I was diagnosed 2 years ago and am using similar treatments; the hair loss seems to stabilize for some time and then start up again.  It got worse in December and early January and I'm wondering if stress aggravates it.  I hope you get good results with your treatment!  Brooke

Permalink Reply by TrayG on January 22, 2015 at 3:43pm

Hey Brooke - real quick, I think from everything I've read and understand, stress seems like a major contributor to this condition.   The tough part is, not stressing when you see your hair falling out.....if some one could tell me how not to stress about that, I'd be forever grateful :)  

Permalink Reply by Brooke on January 22, 2015 at 4:19pm

Thanks Tray!  Christmas is always very stressful for me and I too haven't found a way to just relax.

Permalink Reply by Alice on January 22, 2015 at 4:27pm

Lynn, I think you should report the allover itching and rash to your derm, as it might be an allergic reaction to the Plaquenil. I haven't checked the med warnings,  but this sounds like something you should ask about. Many of us have red, bumpy, itchy sore scalps, which tends to come with the territory but may flare up in times of stress. It's the allover part that concerns me.

Permalink Reply by Lynn on January 22, 2015 at 6:04pm

Thanks to everyone who has replied to me! I cannot tell you how much it means to me. I have a call into my dermatologist's office, so hopefully I will hear back from her soon...

I forgot to mention that I had been using Women's Rogaine for the last 3 months, and that I fairly recently switched to the stronger Men's Rogaine, so that may very well be the culprit. My dermatologist said that since I tolerated the Women's formula, the stronger formula should be fine, but perhaps not.

I have been using Latisse for my eyelashes which had started falling out and Desonide Cream, 0.05% on my brows.  My eyebrows had a couple of very bare areas and this cream has helped thicken my brows considerably. I have to say that I have been quite dedicated to using all the treatments prescribed by my dermatologist.  

I have also lost most of the hair on my arms and a significant amount on my legs as well. This is such a strange condition. Some days it is very difficult to wrap my brain around. I think I have developed a bit of depression, as I have a hard time with social activities. I have to force myself "out there" sometimes, as I just don't feel like putting on a happy face, when inside, I'm so confused and sad about my diagnosis. (Not to mention uncomfortable and very itchy). I have only told a handful of people about my FFA. It's difficult for me to talk about, and everyone I have told has been supportive, but has had lots of well-meaning advice to offer, and says they cannot tell. One friend didn't believe me so I actually pulled my hair back and showed her my bald areas and she gasped and said "Oh"! Quite a shock for her I am sure! 

Thanks again for letting me express myself here. Although I am sad, my concerns and fears already feel a little lighter after being able to share my story with you all.

Permalink Reply by PamW San Diego, CA, USA on January 22, 2015 at 7:38pm

Hi, Lynn.  I could have written your post.  Same exact symptoms.  Try switching from Benadryl to Zyrtec.  I purchase the Allertec product from Costco, which is much less expensive than the brand Zyrtec.  It does not make you drowsy.  I take one every morning and it helps greatly with the itch.  If the itching is really bad, I will take Benadryl at night but I do wake up a bit foggy.  Next week I am having patch testing done by a dermatologist to see if there is anything that I might be allergic to.  I doubt it, but I will go through all of the testing just to satisfy the doctors.  I believe that people with auto-immune disease all experience the same types of symptoms - dry eyes, dry skin, dry mouth.  Don't know why, though.  Anyway, try the Zyrtec for daily relief of itchiness.

Pam

Permalink Reply by Lynn on January 25, 2015 at 2:19pm

Pam,

Thanks for your suggestion for using Zyrtec. I switched over and it is definitely helping more than the Allegra did and I don't feel drowsy. So far I haven't experienced dry eyes or dry mouth, with the itching and dry skin, thankfully. Let me know how your allergy patch testing goes please.

Lynn

Permalink Reply by PamW San Diego, CA, USA on January 25, 2015 at 5:28pm

Will do! Should know by the end of this week.

Permalink Reply by Marian on January 22, 2015 at 9:20pm

Hi Lynn and welcome to the group.  I have done it all to curb my FFA's appetite to consume all my hair!  I don't eat sugar, gluten (except for the very odd time when I treat myself to pizza or a beer) eat basically a whole food diet (except for previously declared sins).  I have been on Plaquinil for years (I have Lupus as well), tried doxycycline, use Rogaine 5%,have the steroid injections and use Clobestol lotion.  For the last 6 months I have been on AVODART and when I went to Derm today I showed him where I have a section of regrowth!  Not huge but a small maybe one inch square area that shows a chunk of hair that is about 3-4 inches long.  On the other side at about the same location on the head is a much smaller area but I see some shorter hairs.  I have been using Rogaine forabout 15 months and I for sure think it has helped thicken what hair is there but this new growth is not the same....I credit the AVODART.  I wish I had tried it earlier.  Has anyone else had any success with this medication?

Permalink Reply by PamW San Diego, CA, USA on January 22, 2015 at 11:11pm

Marian, what is your dosage of avodart?

Permalink Reply by TrayG on January 23, 2015 at 7:37am

Hi Marian,

 

Do you feel that the diet has helped your FFA as well?  Can I ask what made your dr. try Avodart?  I'm happy for you that you've had new growth, but I have never heard of this as treatment as of yet but I'm encouraged.  I wish you all the best and thanks!

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