dreamscometrue
  • Female
  • Spring Valley, NY
  • United States
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dreamscometrue's Discussions

Alopecia-Long Term Sufferers; Do you find studies exclude you?

Started this discussion. Last reply by Moonbeam 12 hours ago. 26 Replies

Hi Good Positive People:)Have you found that when you apply for studies on Alopecia of any kind, Areata, Totalis, and Universalis that if you've had the disorder for more than 5 years they exclude…Continue

Seronegative Rheumatoid Arthritis and AU, soon to start meds, but scared

Started Sep 13, 2017 0 Replies

I was just recently diagnosed with seronegative RA and I also have AU.  I know the drugs for RA can help with the hair loss for AU but I am scared to death of the side effects.  My Rheumy tells me…Continue

Infections-Candida, Oral infections, any infections. Did you have any chronic infections before starting Xeljanz?

Started this discussion. Last reply by Camryn Mar 23, 2017. 37 Replies

I was wondering if chronic internal infections contributes to long term inflammation in the body thus triggering some sort of attack against the body with auto-immune disease.  I figured since…Continue

Astaxanthin-Natural Anti-Inflammatory

Started this discussion. Last reply by dreamscometrue Dec 10, 2016. 10 Replies

First let me start off with a little info about me.  I'm 53 yrs old, I have AU. I'm not currently under any treatment for it.  I have asthma, seasonal allergies, and what seems to be the start of RA.…Continue

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Latest Activity

Moonbeam replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"I got distracted and didn't address your original post. :) Yes, I've found studies exclude us based on the duration of the disease. I tried to get into the Pfizer study. Nope. Not gunna happen. I DID get into the Concert Pharmaceuticals…"
12 hours ago
dreamscometrue and janetparsons are now friends
yesterday
dreamscometrue replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"Stay positive Janet!  Someone is bound to hear us.  It is very frustrating and hard living and coping with AU, and it hurts a lot that we get passed over and ignored, because they feel ts not a death sentence, to them its just hair. …"
yesterday
janetparsons replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"i am from newfounland, have au for 44 years, i am now 64  years, it MADDENS ME! I TRIED THE CANCER SOCIETTY FOR A NIGHT CAP THEY WOULDN,Y EVEN LOOK AT ME,sorry foor the caps, it makes me soooo mad!! i suffer  more with thisdisease at least…"
yesterday
dreamscometrue replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"I was taking MTX for over 7 months before I started on Humira.  The injections, honestly you dont even feel it because the needle on the pen is so small, you'll question whether you did it right before you say it hurts; you dont feel…"
Friday
Moonbeam replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"I was just about to start taking Humira (hoping it might help the AU) but then I had a panic attack, when I was thinking about sticking myself with a needle, and worrying about side effects, so I canceled the medication. :( I'm going to try…"
Friday
dreamscometrue replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"I have AU and I also WAS diagnosed with RA.  But today after seeing a new rheumatologist, she doesnt think I have RA at, and she's not sure what is causing my problems.  I am taking Humira but was advised to get off of it.  I am…"
Friday
cwincos replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"Drug companies want to get the best possible results in order to get the drug approved for alopecia. It can be discourage but don't lose hope.  Once the trials are done and the FDA approves the medication for that purpose, they it will be…"
Thursday
dreamscometrue replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"My pleasure Leigh, I really hope your research project helps create change that so many of us need and look forward to getting the help we have sought for so many years and decades.  You're very welcome"
Jul 9
Pamela replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"I wouldn't call it lucky. It fell out completely in a matter of a week. It was 10 years before it came back only to have it fall completely 7 years ago again. In the last few weeks I have grown some brows and lashes. I will enjoy them for as…"
Jul 9
Leigh replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"Very helpful to have your feedback...I hope to continue researching Alopecia (AA, AT, AU) in the future.  My study's results will hopefully suggest directions for future research projects and having your voice be part of this study will be…"
Jul 9
dreamscometrue replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"You're lucky Pamela, mine never came back.  It took almost 10 years to lose everything and each year it got worse and worse until I was left with no hair at all.  Just until recently in the last 2 months, I've been on Humira, my…"
Jul 9
Pamela replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"Yes very difficult. I have always had AU. It came back a couple of times but always returned to AU"
Jul 9
dreamscometrue replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"Thanks Leigh! I did the survey and the questions were great and many hit to the point of what its like living with Alopecia day to day, but I do wished there were more questions about those of us who have AU, which many people dont…"
Jul 9
Leigh replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"These issues are some of the very reason I made Alopecia the focus of my dissertation research.  Please consider sharing your thoughts and experiences or forwarding to anyone that might want to participate! Hi friends!  Leigh McGinty, a…"
Jul 9
dreamscometrue replied to dreamscometrue's discussion Alopecia-Long Term Sufferers; Do you find studies exclude you?
"I will!  "
Jul 7

Profile Information

Relationship Status:
Single
About Me:
I believe that in dreams and thoughts create the energy needed to make all things possible. I believe in dreams and miracles, and when you do, manifestation occurs.
Do you have alopecia?
Alopecia universalis
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall (2 comments)

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At 8:46pm on July 19, 2016, dianna said…

Hello what you use and you hair grows back???

At 1:45am on August 8, 2012, LeslieAnn Butler said…

Hello and welcome!
How are you today? I have AU, too.
Leslie Ann

 
 
 

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