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Comment by Sas Holland on December 9, 2014 at 8:52am

Hi Rebecca, this stemcell transplant, it is very new and experimental, I think  they onlyperform it for about 2-3 years (at least on FFA patients)

Comment by Sas Holland on December 9, 2014 at 8:30am

I got my bloodresults  back: iron, ferritin, B6 en B12 all OK except vitamine D was  a little bit low, 67, but not very,  my GP says it should be at least 75.

 

I also finally heard from de Hair Science Institute  from dr Gho (hair stemcell transplants). They tell me that on 1 of  every 10 treated FFA patients the new hair falls out in about 1-2 years. But they didn't say how many FFA patients they have treated.

I am still having doubts about whether or not to take the Cyclo and the test transplant though

Comment by Kristen P on December 8, 2014 at 11:25am

I actually have low Ferritin levels, so no, I haven't experienced that! I've been taking liquid iron at lunch to boost them (at least when I remember to take it.) I can't take it in the morning or at night because I can't take with the minocycline.

Comment by Donelle on December 5, 2014 at 4:11am

Mycophenolate mofetil (MMF) is the pharmaceutical name for Cellcept.  It isn't called Cellcept here in the UK.

Comment by Classical Anne in NC mountains on December 4, 2014 at 10:41pm

Pam, I'm just so glad you're finally seeing a specialist about it.  It seems you have had more itching and burning than anyone else, and that it has gone on way too long.  I do hope they find that there is an allergen you can easily avoid from now on!

Comment by PamW San Diego, CA, USA on December 4, 2014 at 9:52pm

I think Cellcept is prescribed for FFA because it is autoimmune. For some unknown reason, our body is attacking our sebaceous glands. Cellcept suppresses our immune system so it does not attack our body. My dermatologist said that she would equate cellcept with Plaquenil with regard to danger and/or side effects. She said cyclosporine needs to be monitored much more and is a more serious drug. I continue to have burning and itching that is really hard to cope with. My palms also itch, which makes the doctor think thatbitbis an allergic reaction. I am being sent to a specialist to see if I am allergic to something before my doctor changes around my prescriptions. Personally, I think it is the Plaquenil that makes me itch.

Comment by Donelle on December 4, 2014 at 4:26pm

Hello all

I am writing to report on my visit yesterday with my dermatologist, Dr Aisha Ali in London.  Let me first say that Dr Ali spent a long time just talking with me.  She was entirely personable and concerned about the lack of attention paid to those suffering from this disease.  I mentioned that I'd gone to the CARF conference in November and that I had met many women there who do not seem to fit the FFA profile. She thinks the profile (middle aged, middle class, well educated postmenopausal women) is inaccurate; she has seen many more types of patient than one would expect, including many men.  She thinks this is a result of failure to seek treatment and in many cases misdiagnosis.  She is passionate about getting the information our and has asked me to spread the word that she runs a hair clinic at Charing Cross Hospital on Tuesday mornings.  Anyone living in England can ask for their GP for a referral to this clinic.  She also has patients from Scotland and Northern Ireland but the referral may not be as straightforward.  Dr Ali will also be working with Dr Christos on his DNA project.  Finally Dr Ali said she treats every patient individually and does not prescribe the same drugs for everyone.

I have had FFA for a number of years.  I was misdiagnosed for a number of years by London's top NHS dermatologist.   Since the summer my hair loss has progressed and now I am experiencing itching and burning that are at times overwhelming.  I had been taking hydroxycloroquine but Dr Ali has switched me to Cellcept, saying that this is the frontline treatment now.  I am concerned about the side effects but she assures me that cyclosporin has more of an impact on the liver than cellcept.  I will have to have my blood tested weekly at first then tapering off.  The goal is to keep the hair loss at bay until the disease burns itself out.  Dr Ali assures me that this does happen, and has happened to several of her patients.

Comment by Sas Holland on December 4, 2014 at 3:54pm

yes it is very good isn't it Rebecca, which conditioner do  you use?

I use Devacurl (but it's  not for sale in Europe, or it was.t untill now, so I have to pay a lot of VAT taxes) and Jessicurl.

Comment by Sas Holland on December 4, 2014 at 3:44pm

Thanks for sharing this Kathy and Mike'sDeb,

I too try not to bother to much about my FFA and to accept it and keep in mind that there are much worse things that could happen. My kids, husband and myself are healthy and happy and that's the most important thing in the world. I am more and more inclined to not taking the Cyclosporine after all and thus not have the HSI transplantation.

I already use the Curly Girl (CG) method for my hair,  for a year and a half now, which is not using shampoo with sulphates, no silicones in conditioner and styling products and no parabenes in both. My hair is much more shinier, healthier and curlier  and less frizzier than before.

Comment by Mike'sDeb on December 4, 2014 at 3:01pm

I am with you Kathy...doing my best to approach it from as most of a natural lifestyle approach as I can. I was diagnosed this past June but we think my highly active time was at least a year ago. I have thinned out brows and have lost about an inch of my hairline. Since I am premenopausal and hypothyroid (since age 16)...I am inclined to believe my cause of this autoimmune disorder is environmental and the last thing I want to do is add potent drugs to my body for a condition that is not life threatening. I have experimented with makeup for the brows and different hairstyles and so far so good. I certainly wish I didn't have this disease but considering what others have to deal with I have learned to accept and adapt. I been on rogaine for a few months and at the suggestion of my hair stylist I have started a shampoo system from redken that also has minoxidil. When discussing this disease with my kids they reminded me that it can only be seen if someone is "in my face" and to those that are in my face it does not matter. I know everyone has to be comfortable with their decisions...best of luck to all!

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