Comment

Comment by Debs on February 21, 2013 at 8:19am

Hi Celia, yes I am jetting up to Salford tomorrow... I will ask about gluten/diet and see if Dr Harries has an opinion on that. I suspect that most medical doctors tend to not look at the whole person and taking a holistic approach where you examine effects of diet, stress etc is not really taught during their training. I will of course ask the question. I know I will be offered the same meds that you have Celia, which is OK because at the moment I only have the steroid lotion Dermovate to use and I have not been applying it because I don't thank goodness experience any itching or redness with my FFA... Stacey, I do use Nizoral once a week, I have not found any problems with it, I use other regular shampoos too, I feel that because I wear wigs to work now I want to make sure I keep my scalp extra clean for hygiene reasons and I feel that as Nizoral is a medicated shampoo it must give a more thorough clean - this is just my opinion. XXX

Comment by Jules UK on February 21, 2013 at 7:22am

Oh Stacey, you poor thing! I haven't tried Nizoral but had a similar experience with Protopic. If the hairloss slows now, you might assume a connection. I do feel that we're a bit like little lab rats -everything is trial and error! X

Comment by Stacey on February 21, 2013 at 4:22am

Hi Has anyone tried Nizoral Shampoo and how did you get on? I have shed loads in the last few weeks and the main difference that would cause any effect would be the nizoral. I have read about possible shedding when you start but wonder if I should just stop it. I have also found out that the pill I was on and the implant before that were andronic so I have changed to a less androngic one in the hope that the loss slows down. My hair line is going rapidly now

Comment by Alice on February 20, 2013 at 5:20pm

Ellen, Thanks for the info about the FM med you are using for itching. I tried it orally years ago, when they were prescribing it for just about everything but all it did was make me feel spacey. I didn't realize it came in a topical form. I'm glad the tea tree oil is helping. I've been using it along w/ TTO conditioner but now my hair seems very dry. I'm wondering what I can use for the dryness that won't further irritate my scalp. If it's not one thing, it's another.

Comment by ElleMN, USA on February 20, 2013 at 4:11pm

Just finally getting back to Alice re: the new medication I was prescribed to help with itching. It Gabapentin 6% buffered solution (prescribed in another form for fibromyalgia). I'm supposed to use it on spots that are unbearably itchy. I have only used it once; I switched to plain old tea tree shampoo and that seems to be working. I think the head and shoulders classic clean is just too strong for me. I'll post if I use it further with any success.

Comment by Simone NJ USA on February 18, 2013 at 6:00pm

Thanks Debs & Robyn for your comments...x

Comment by Robyn, Melb. Australia on February 18, 2013 at 5:44pm

Hi Rebecca,
I have been on Plaquenil almost 2yrs with no side affects that I can detect. My specialist made sure I had an eye test that included checking the retina before going on it. At first she said I needed to have the test every year, but last appointment she told me once every 2 yrs now seems to be the requirement as research has shown there only appears to be a chance of getting retina damage over long term use. It would be wise to make sure you don't already have any retina issues before commencing the medication I would think. I am happy at this stage using Plaquenil as I do believe it might be slowing the process for me - I don't believe that or anything at this stage will stop the process though, which appears to be the consensus in our discussions. Ultimately you need to be happy with taking any type of medication yourself. It's good that you can get feedback from others who have the experience.

Comment by Debs on February 18, 2013 at 5:34pm

Simone I want to stop my hair loss but my gut feeling is exactly what you have written, this condition doesn't seem to respond to treatment and the long term effect of taking drugs will have some negative impact on one's health. It is very hard to know what to do for the best.

Comment by Simone NJ USA on February 18, 2013 at 1:37pm

Welcome to you, Kath...

Comment by Simone NJ USA on February 18, 2013 at 1:36pm

Hi Liz:

I, too share your views. I was given a prescription of Plaquenil & haven't used it as yet. I have done many researches regarding all these kinds of anti inflammatory drugs into the body and over the course of time it leaves the body very vulnerable to thing like cancer an other infections. I'm not currently taken anything right now and still debating whether to just let this thing run its course since it seems to stabilize on its own and really the course of this disorder seems to be inevitable...thoughts anyone?

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