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Comment by Lauren on November 17, 2015 at 7:53pm

MnM, I saw under another conversation that you took plaquenal as well. What does it involve? My dr made it seem like blood testing every month was required and you had to stay out of the sun. What was your experience?

Comment by MnM on November 17, 2015 at 6:44pm

Lauren I did several rounds of injections the first year of my diagnosis and I have two dents several years later that have not filled in. I won't be doing injections again for that reason.

Comment by Sad in chicago on November 17, 2015 at 6:08pm

MJ, no tamoxifen for me.   I did have radiation though many years ago when I was first diagnosed.  But I think this is not due to any of that; either hormonal as I am done with menopause, or some sort of auto immune which has not shown up in any tests with an endrogrinologist I went to when I first noticed extreme loss.  Never in my life did I think I would be dealing with something like this.  and although there are worse things, you know it is hard not to feel sorry for yourself.  Thanks for letting me whine

Comment by Wyobalance on November 17, 2015 at 5:10pm

Sad in Chicago, they are real human hair (Indian I believe, not european).  They are the exact same color and texture as  my own hair.   I plop :)) them on approximately where my original hairline was and there is 1/4 to 1/2 inch gap between the little piece and my new hairline. I wear bangs, and even on the side the gap does not show.  If by chance I plopped one of them a little off to the side or something, I fill the larger gap with Courve'  camouflage until I re-plop them on the next month.  

Comment by Lauren on November 17, 2015 at 5:05pm

Mel, are you going to continue with the injections? Did you think it helped?

Comment by MJ on November 17, 2015 at 5:04pm

Sad,
I am a breast cancer survivor and didn't need chemo and I have had the exact same feelings as you. I think taking Tamoxifen was the start of all my ills.

Comment by Sad in chicago on November 17, 2015 at 4:18pm

Wybobalance:  Maybe I missed this but are the pieces you tape synthetic or real human hair?  And you just cut a few pieces from a bigger piece and plop them on with tape?  I cannot imagine how that works.  Don't you need to integrate pieces with your real hair?

Comment by Mel on November 17, 2015 at 3:59pm

I had one round of about 9 shots across the front which left two indentations. This was several months back and I was just noticing that the dents seem to be gone. I have not taken plaquenil though it was recommended. I don't know anything about doxycycline.

On a separate note I just heard back from the RN at Duke. She said: We have not extended the study out yet so yes please do continue to be patient. I am thankful for your continued interest. We will be in touch soon with next steps.

Comment by Lauren on November 17, 2015 at 3:50pm

I'm on doxycycline And clobetasol for the last 4 weeks which seems to work ok. I also have been using ketaconazol shampoo. I have noticed a decrease in shedding overall. I dint think the inflammation looked much better but the dermatologist seemed to think it did and that there was less flaking. She said the next step before trying plaquenal would be cortisone injections. I've heard of people having major denting from the injections which she said is true if its done in high doses. She also said the plaquenal you have to do monthly blood monitoring and stay out of the sun. Does anyone have any experiences they can share with using either cortisone injections or taking plaquenal?

Comment by Wyobalance on November 17, 2015 at 11:12am

Sad in C.  I do not remove the taped pieces at night.  The blue roll tape works very well for me.  As we know, we all are different.  The woman that uses pieces above her ears, don't last a full month, but do remain intact at least a couple of weeks, I believe.  I wash and wear these as though they are my own hair.  

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