Hi I'm mags and I'm new here

[Magsmaria]

I've been diagnosed with ffa and my dermatologist has put me on Hydroxycloroquine ( Quinoric). Has anyone else tried this medication and if so what results have you had. also how long does it take for ffa to burn out.

[Aud1950]

I also have it. Been on that medication for 1i months with no ill effects. Don’t know if it’s helping. No one has a real cure. Some medications work for some but not others. Again no one can tell you how long it takes to burn out, if it does. There’s a Facebook page dedicated to it. It’s invaluable. You get more info there than from doctors.

[Magsmaria in reply to Aud1950]

Hi Aud1950,I'm just hoping the medication will help stop it getting any worse.What I'm finding now is the medication is giving me heartburn.I was on omeprazole for acid reflux but didn't know if I could take it with the quinoric I will call my doctor tomorrow to find out.

[Aud1950 in reply to Magsmaria]

I haven’t had any problem. As to whether it slows it down, it progresses very slowly anyway so I’m not sure. I live in hope.

[Magsmaria in reply to Aud1950]

Morning,just called the Dr and he said I could take the omeprazol And the quinoric as long as I don't take them at the same time.He advised taking omeprazol in the morning and quinoric in afternoon or evening.

[Magsmaria in reply to Aud1950]

Hi Aud 1950,Ive just been reading that the medication can cause hair loss so why do they prescribe it for ffa...I'm baffled by it...don't know wether to keep taking it incase it makes the ffa worse...think it's a no win situation.

Mags x

[paw1 in reply to Aud1950]

Hi Aud can you post the details of the facebook group you referred to. Is it just for frontal fibrosing alopecia?

[Magsmaria in reply to paw1]

Hi paw1 I just joined the fb Alopecia uk group it's for all types of alopecia although I haven't seen anything about ffa and that's what I have.

It's a closed group so it's good if you don't want any of your fb friends seeing it.

[paw1]

Thank you Magsmaria. I am in the general group too. It is good but it would be great also to have a sharing group just for FFA

[Nadia21]

Hi Mags,

I have just been diagnosed with FFA too. How are you getting on a few months in? Is there anything you have found particularly useful?

Nadia