Comment

Comment by Sas Holland on November 13, 2014 at 8:06am

hi everyone,

Donelle, I may have a hair stemcell transplant (the donor area will keep its hair follicles, so you  don't loose it there), which is only done for a couple of years by the hair Science Institute in Holland to my knowledge. I spoke to them this morning on the phone, they will only transplant 50 grafts of hair stemcells  as a test and the costs will be 570 euro. I then have to wait 9 months to see if it stays. They tell me they have doen it now in about 50 or so woman with FFA, but only very recently. 80% of them keep the new hair.  So they  stress out that they really don't know the effects on the longer term yet. So it is indeed expirimental on FFA patients, thats why they will only do it if you take the Cyclosporine.

Indeed Catherine it is such a difficult decision whether or not to take Cyclosporine.

I am also considering to start a diet of eating lots of organic fruits en vegetables and no gluten, no red meat, no sugar and no refined carbs. Has anyone tried something like this?

I will reconsider taking the Minoxidil Donelle,

Comment by Catherine on November 13, 2014 at 7:50am

I was on Cyclosporine for about two months and had no side effects, but decided to come off it as I was feeling increasingly uncomfortable about being on such a potent drug. It is such a hard question we all have to face: is it worth taking potentially harmful medication for a condition that is absolutely horrible but which is not life-threatening? It is a very personal decision. Initially, I was so traumatized by my diagnosis that I was ready to take anything, but now I am not so sure...

Comment by Donelle on November 13, 2014 at 7:35am

Jodie  Thanks for your info re cyclosporin. I have to admit I was put off after reading the info sheet.  With any of these powerful, off label drugs its always a matter of balancing the risk. I am planning to go to the conference in London tomorrow.  I will ask Dr Christos and the others what they think of Toctino and I'll let you know what I learn.  Best wishes.....

Comment by Jodie UK on November 13, 2014 at 6:49am

Donelle-I had to attend the derm clinic every 2 weeks while on cyclosporine for blood, urine and blood pressure checks. I didn't feel poorly, but I felt like I had a chill and if I needed to wee I had to go instantly and had that kind of sensation you have with a chill. Be guided by your derm and discuss any concerns with them

Comment by MJ on November 13, 2014 at 5:49am

I wonder if toctino is similar to elidel, which is also indicated for excema. I was started on this in September.

Comment by Donelle on November 13, 2014 at 4:45am

Jodie I am wondering whether its worth trying it.  Did lab tests show the adverse effect on kidneys/liver?  Did you feel poorly whilst taking it?

Comment by Jodie UK on November 13, 2014 at 4:41am

Donelle
It was about 2yrs ago I was prescribed cyclosporine, I was only taking it for few months and it was decided I was not a good candidate for this drug, as it was starting to affect my kidneys/liver,it's a very powerful drug and I don't think it can be taken long term, but I'm not sure about this.

Comment by Donelle on November 13, 2014 at 4:21am

Jodie I read some of your earlier posts and I'm curious why your derm has changed your meds from cyclosporin which seemed to be working for you.  Is there a limit on how long you can be on it?  

Comment by Jules UK on November 13, 2014 at 4:17am

Just googled Toctino. It's interesting that it's a treatment for eczema, like Protopic. I'll ask Dr Kaur about it at my next appt.
There was a phone conference last night about the Hairloss survey. We're really pleased with the numbers responding and especially FFA. Well done. The survey is staying open until Sunday because of the CARF conference - there'll be opportunity to complete it there.
I can't go but look forward to reading about what's discussed.
X

Comment by Jodie UK on November 13, 2014 at 4:09am

Hi C
I attend Dr Susan Holmes at Glasgow Royal Infirmary, I know she works very closely with Dr Christos as he spoke very highly of her on the telephone, at the time when I was taking part in his study.
I have had FFA for a long time now, and it's so unpredictable I don't know if I'm going through a quiet spell, or if it's Toctino that's making a difference, that's why I would be really interested to know whats Dr Christos opinion this drug. I have not heard of anyone else prescribed Toctino for FFA.

• ‹ Previous
• 1
• …
• 253
• 254
• 255
• 256
• 257
• …
• 506
• Next ›
• Page