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Crohn's Disease Forum » Your Story » Looking for suggestions


07-06-2017, 12:01 PM   #1
lindy Cee
 
Join Date: Dec 2016
Location: glasgow, United Kingdom
Looking for suggestions

I was diagnosed with Crohns in October last year, I had 3 Infliximab infusions, last one 3 months ago, I stopped them as Crohns went into remission and my hair has fallen out by the handful, I don't want to have any more Infliximab's but Im flaring now and Im looking for suggestions - ie. what do sufferers take that helps their Crohns, not necessarily medication, what helps you?
Thanks my fellow Crohnies x
07-06-2017, 04:51 PM   #2
Sophabulous
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Join Date: Jun 2016
Location: Cheshire, United Kingdom

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I was diagnosed with Crohns in October last year, I had 3 Infliximab infusions, last one 3 months ago, I stopped them as Crohns went into remission and my hair has fallen out by the handful, I don't want to have any more Infliximab's but Im flaring now and Im looking for suggestions - ie. what do sufferers take that helps their Crohns, not necessarily medication, what helps you?

Thanks my fellow Crohnies x


Hi there,

I read this the other day regarding the hair loss. I thought it might help you to make a decision if the hair loss is the reason you stopped the infliximab.

http://dansharpibd.org/telogen-effluvium/

I had quite bad hair loss when I started azathioprine but to be fair it has died down now. I thought the above article made a lot of sense.

Best of luck, please don't suffer and get in touch with your GI team if you're struggling x
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
07-06-2017, 05:17 PM   #3
lindy Cee
 
Join Date: Dec 2016
Location: glasgow, United Kingdom
A very interesting article, not sure how accurate it is though, I did notice a little more hair coming away before being diagnosed but nothing significant, I waited so long for a hospital consultation that I eventually got admitted to hospital in January, my potassium levels were very low by that point and I was almost suffering from malnutrition and lost 2 stone, I was then given steroids and Infliximab but it wasnt until about 2 months later it started really coming out. I think it has slowed down now, Im taking Biotin daily and switched to paraben and SLS free shampoo, will see how it goes. Thanks for responding X
07-06-2017, 09:07 PM   #4
ronroush7
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I second the above statement about not suffering. Call your GI.
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07-07-2017, 06:13 PM   #5
wildbill_52280
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Join Date: Sep 2009
Here is some advice i just gave someone recently.
http://www.crohnsforum.com/showpost....18&postcount=5
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Learn How Fecal transplants restore good bacteria that regulate inflammation to induce remission and how it has potential to be a cure for IBD in the future. Follow the link below.
http://www.crohnsforum.com/showthread.php?t=52400
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