Comment

Comment by AC from CA, USA on April 20, 2013 at 12:50pm

I have been taking a suite of natural anti-inflammatory herbs since January and I think it helped calm the inflammation cycle I was in. I was losing hair and had terrible itching...the itching left after I was on these herbs for a few weeks. I think it may have cut short the loss that was in progress. I was only taking these herbs, no plaquenil our anything else. I take turmeric, bromelain (helps turmeric as Debs said, but is also anti, inflammation itself), boswellia, aloe vera, licorice root, and white willow bark.

I have a friend who has rheumatoid arthritis, also an autoimmune disease with inflammatory issues. She recently advised me to start taking Wobenzym.

Comment by Debs on April 20, 2013 at 10:28am

www.veganicity.com is a health food supplier based in East Sussex, because the supplements are vegan they don't use lots of binders and the product is well made.

TUMERIC EXTRA tablets are £11.95 for 30 free p&p
Contains: curcumin 95% 200mg, ginger extract 100mg, bromelain and black pepper (piperine) - ginger has anti-inflammatory effects and the bromelain and piperine improve absorption and increase bioavailability of the curcumin. I have looked at lots of formulations online and this is the best I can see in the UK and it is a good price with free p&p.

Comment by Chrisy, MA USA on April 20, 2013 at 8:46am

This is so interesting Deb! Thank you so much for sharing. I've been taking turmeric for a couple of months now in tablets but also in fresh form. I was able to find it at whole food and I make tea with it along with ginger. I guess it doesn't hurt so get as much as possible.

Comment by Debs on April 20, 2013 at 7:09am

Rebecca, when Liz and her mum speak to Dr Harries and he does some genetic investigations could your derm run the same tests in Germany so both doctors can contrast and compare the results. If there is the same 'abnormality' in both sets of mother/daughter DNA you could the crack mystery of what causes FFA... or at least point the doctors in the right direction of the genetic component to the condition. xx

Comment by Paula uk on April 20, 2013 at 5:31am

Hi Debs,
thankyou for all the information.Funnily enough one of my first questions on this was, if it was hereditary I was worried for my daughter.But I was told no it wasn't .
Thanks again x

Comment by Debs on April 20, 2013 at 3:47am

Pam, I feel in good spirits after my visit yesterday, just having information is empowevering and makes me positive. I have lost hair in the past few months but that was already on the way out when I started taking plaquenil. I have been taking it for 6 weeks so it will be take a few months to see if it is having any effect. I am heading off to the health food shop this morning to get some tumeric tablets it is worth a try.

Liz, yes I would definately get your mum refered then Dr Harries can do some investigations with you both, he is very interested in looking into the hereditary factor to help understand this condition. There are not many related sufferers around for doctors to get their hands on so to speak.

Comment by Heidi Short UK on April 20, 2013 at 2:39am

Hi Debs thanks for posting the info, its really interesting about the cucumin I might pop to the health shop today and get some tumeric tablets. Its also a worry about the connection being heriditary, on my first visit to the derm my daughter came with me and that was the first question she asked, I hadn't even thought of it but it was obviously been playing on her mind. But she was told NO it wasn't but other autoimune disease can be. Wether there was not hard evidence as yet and he didn't want her to worry her whole life thinking she too was going to loose her hair. That is one thing which keeps me positive that it is me with this and not her as she is a hairdresser/ beautitian and her hair is so important to her!
Thanks again Debs

Comment by PamW San Diego, CA, USA on April 19, 2013 at 6:50pm

Thank you so much, Deb. You are beyond awesome for asking and then posting your info. Based on Alice's recommendation, I have been taking Tumeric supplements with meals and I do think that it makes a difference in the amount inflammation in my scalp and other places ( like my joints and cheeks). I take 800 mg a day. Dr. Andrew Weil, who is very popular in the US for promoting anti inflammatory diet and lifestyle recommends Tumeric as well. Check out his website. I am on the generic for Plaquenil and have had no tummy issues, but I do take it with meals. I will ask my derm if there is a prescription for cucumin. You didn't say how you were. Do you feel as though things have slowed down?

Comment by Alice on April 19, 2013 at 5:38pm

I've been taking turmeric capsules for a long time. I think they may be helping but it's hard to know. In the US, you can buy them over the counter at your local grocery store or pharmacy. The last batch I got, I purchased from online from Amazon.com. I do take them with a meal, to avoid stomach upset as from spicy food. I've also found that oolong tea helps with the itching, either hot or iced. I use these in addition plaquenil.

Comment by Liz on April 19, 2013 at 5:08pm

Hi Debs. Thank you for the information. I wonder if Dr Harries might want my mum to get referred to see him. I shall ask him at my next visit. If he is interested in both me and my mum it might be good if he sees us both on the same day.
xx

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