Comment

Comment by Paula uk on April 10, 2013 at 12:00pm

Thanks Liz, just trying to figure out what I should do next.

Comment by Liz on April 10, 2013 at 9:31am

Hi Paula. I see Dr Harries every 3 months. I travel up from Brighton. I see him because he is the nicest consultant I have seen. Although he doesn't necessarly offer anything different from other consultants, he cares, is attentive and makes me feel that I am not been rushed. For me it is not just the information I am given on FFA that is important, it is the way that information is given.
x

Comment by Paula uk on April 10, 2013 at 7:35am

Hi Debs,
can I ask ,how often will you see Dr.Harries?Is it every 3 months or does it depend on the medication you take.
Also would you say that he is the leading consultant on FFA and one I should try get referred to rather than London based derm. Who specialises in hairloss ? X

Comment by Debs on April 10, 2013 at 2:42am

There must be an established best practice protocol for checking liver function in patients on plaquenil, it is not a new drug and people have been taking it for a number of years for other medical conditions. I have my second appointment next Friday with Dr Harries, I will chase it up my end too. Surely the drug manufacturers must give guidance on it's usage to the medical profession. I know that it is common to take palquenil for many years with other conditions, so I am not too concerned at taking it for the relatively short period that FFA requires. However, I do want to keep myself safe. On a lighter note, I have discovered 'buffs' I have ordered 4 off the internet and am going to use them in the gym and on the beach when I go on hols next month, they are so comfy and you can make them into headbands, bandanas and all sorts.

Comment by Robyn, Melb. Australia on April 9, 2013 at 7:21pm

Hi ladies,
I have been on Plaquenil 2 years and had liver function and other blood tests done by my specialist prior to going onto Plaquenil. I currently see her twice a year, have an eye test once a year but at this stage she hasn't repeated any blood tests although my GP generally has me do blood tests once a year as normal practice. I recall the specialist telling me originally that information she has read indicated impact on eyes generally only occurs after using Plaquenil for 5yrs or more - and even then that's not with everyone. I have an appointment in early May with her so I'll check then her thoughts about blood tests & eye tests again. As we have discussed before I think there is a lot of difference of opinion due to there not being much research to date for specialists to work with.

Comment by Chrisy, MA USA on April 9, 2013 at 4:58pm

My derm mentioned that every time I have an appointment with her she would do the test. I've seen her twice so far and she tested me both times. Also you have to do eye check up twice a year.

Comment by Chrisy, MA USA on April 9, 2013 at 8:11am

Celia,
Thank you for the information you provided. I tried to change my eating habits. So I started with the master cleanse for 10 days. I guess I was hoping that I will cleanse my body and start fresh. I stopped taking all my vitamins in those 10 days only plaquenil. It didn't help. Actually it made things a little worst I think. Since then for about 2 weeks now I went gluten free, no alcohol, no dairy, eggs, meat. I have a lot of energy and feel great, my nails are the best I had in years but still I can see the inflammation in my scalp. It is progressing slowly but steadily. That said I am just not sure if changing your eating habits will help with FFA but it definitely help somewhere else. I will continue with this diet for now and see what happen.

Comment by Debs on April 9, 2013 at 1:50am

Ellen, no I have not taken accutane. I have not taken any medication at all apart from antibiotics a couple of times for childhood illnesses and I have used the contraceptive pill a few times in my life but not more overall than about 5 years in total. I don't think my FFA is related to any medication I have taken.

Comment by ElleMN, USA on April 8, 2013 at 8:23pm

I've been reading about lipids and sebaceous glands and was reminded that I took accutane in my early 20s. I'm wondering if that could have changed my sebaceous glands forever and now I'm paying for it.

Have any of you taken Accutane?

Comment by Michjo57 on April 7, 2013 at 11:03am

Caro, I'm having my eyebrows done next week and I am soo excited. The thought of not having to put them on every morning will be so nice, not to mention going camping and stuff like that. I know what you mean when I put my wig on, it takes years off. My son said I looked 35 when I wore my red one. My hair is usually brown and when I wear the red one that is very similar to my style, everyone says I love your hair color. I'm thankful there are cute wigs out there! I love the fact that they are all highlighted now, you just can't tell they are wigs. I get more compliments when I have my wigs on than I did with my bio hair.

I have resigned to the fact that nothing is going to help my hair grow back, except by the grace of God! I've just got to move on from going from doc to doc. I'm at peace with it actually. I'm not losing my hair because of chemo or anything. I'm not going to take Rx that might injure my organs. I have read many times that your body will take care of LP on its own, in due time. Might take years though. Peace to all!

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