Comment

Comment by Liz on February 18, 2013 at 9:56am

Hi Rebecca. I was prescribed Plaquenil and I wont take it. The eye hospital said that they would keep an eye on my eyesight if i do choose to take it but I am very short sighted and to be honest I would rather be bald than have any further eye problems. I have been told by my optician that any problems are not reversible and that the drug can interfere with colour vision which is another thing I would rather not risk.
x

Comment by Susanne on February 18, 2013 at 8:11am

Rebecca - I know this can all be so overwhelming. I struggled with the decision as well. I did not have an eye exam before starting it, but was told to be sure to have my eyes checked every six months from here on out. I did have a liver function test before starting and my derm took one again when I had been on it two months. It is interesting to see what different doctors recommend. My doctor did say that it is quite safe for the most part. Almost all drugs have some sort of side effect, but as far as plaquenil goes, the extreme side effects are very rare, from what I understand.

Comment by Alice on February 18, 2013 at 8:08am

My opthalmologist said she had seen only 1 case of retinal problems resulting from to plaquenil. It was a 80+ year old woman who had been taking it for over 20 years and it reversed itself once she stopped taking the drug. She also told me that a lower dose is being used now than in the past, so the danger is lessened. I tried it for a while, went off when I didn't think it was helping but am thinking about going back on it for the long haul. My internist also told me that it was generally well-tolerated. As long as you get regular eye exams, I think it is safe. But I would recommend getting a baseline exam before starting it, just to be on the safe side.

Comment by Lorn. New York, USA on February 18, 2013 at 7:44am

Hi Rebecca. I had an eye exam before I went on placquenil and the eye exam included my eyes being dilated and the field vision test. My eye dr didn't think that placquenel is bad. He told me his mother has been on it for years and he had quite a few patients on it. He did have one patient who had some sight loss because of it but she knew she was having a problem and waited too long to see him. He told me if there is a problem and it is stopped early enough,it is reversible. I have been on it for seven months and had a six month eye exam recently and my eyes haven't changed.

Comment by Jules UK on February 17, 2013 at 5:02am

I wonder if there's any correlation between loss of body hair and the amount of hairline we stand to lose? The derm I saw privately thought he could do something for me because I had only lost underarm hair as well as hairline. Dr Harries expressed no such optimism, and I can't afford to see Dr Rajpar again. No improvement since startng homeopathy - but I'm not really surprised!

Comment by Stacey on February 17, 2013 at 3:35am

For those visiting Salford, If the travelodge you mention is near Old Trafford, there is also a Premier Inn there which has free parking. I was there a few weeks ago for something else and the Premier Inn rooms were really nice. Its on the other side of the water to the Hospital but looking at Google Maps it should be quite accessible. I dont have my appointment til April and only live 2 hrs away so wont need to stay over but this might help someone. PS it was easy to get to the trafford centre too for shopping!

Comment by Stacey on February 17, 2013 at 2:57am

My hairloss started whilst I was on an implant for birth control, i had that removed and was put on the pill- just a normal one probably not one of those recommended for hair loss. over the last two months whilst on the pill I have had whats felt like flare ups, more sensitive scalp, hair prone to breakage etc. I then came off the pill but this was only a few weeks ago and my flare ups are still there. Its very frustrating I have an appointment in 6 weeks so hopefully I will get a diagonsis then.

Comment by Heidi Short UK on February 16, 2013 at 4:43pm

I've lost hair on my legs, arms, eyebrows and hair line. I have noticed my eyes are dryer and don't water as much as they used too. My head doesn't itch its tender if i tap it by mistake with a hair brush.
I started my menopause when I was 43 and I'm not on HRT and that was the first thing I asked my derm but he said it wouldn't have made a difference, if I was on it or not!

Comment by AC from CA, USA on February 16, 2013 at 4:33pm

Rebecca- I'm just curious about whether anyone has noticed any influences to this disease related to the use of any birth control pills, or bioidentical hormones. In your experience, it sounds like the pill you started after the disease onset made no difference, correct?

Thx- A

Comment by Alice on February 16, 2013 at 9:46am

Pam, I also had a scalp biopsy that was + for LLP, but dx'd w/ FFA due to the pattern of hair loss.
I'm wondering what other hair loss others have noticed. A few years before I started losing hair on my brows & hairline, I had trouble w/ eyelashes falling out. An eye doc suggested using hot compresses over my eyes to unclog the follicles. I still have trouble w/ lashes falling out easily, but they grow back. My eyes are also very dry.
I've also lost all of the hair under my arms and most of the hair on my legs, which I am not sorry about. The hair on my forearms is much thinner. In fact the only place I don't seem to have lost any hair is where it doesn't show unless I am stark naked, if you know what I mean.
What other hair loss have you noticed besides brows & hairline?
Alice

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