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Comment by Polly UK on December 20, 2013 at 5:13pm

Kath - Dr T only mentioned a saliva sample so I'll just send that and see what happens. Thanks for your reply.
Celia, Jess, MJ - the new guidelines this year which I've seen mentioned on a number of sites say dosage should be based on ideal weight for height and not actual weight. If it's based on actual weight then my dose of 400mg is only slightly over but based on ideal weight for my height of 5ft 2in it should be 325mg. I'm going to try alternate days of 2 tablets and one tablet until I see my derm in January. I am becoming concerned especially as I also take 6 tablets daily for heart and BP!

Comment by MJ on December 20, 2013 at 4:22pm

My derm made it sound like it was my weight. I had been under a lot of stress and weighed under 110 lbs at the time of my appt. i am seeing another dermatologist on Jan 10 and will be asking alot of questions. I am so grateful to have found you all!

Comment by Kath UK on December 20, 2013 at 4:11pm

Polly -    I sent away my saliva sample today and I'd noticed when I read the literature that came with the kit that it mentioned blood and/or skin samples.  Dr Tziotzios never said anything to me about wanting blood or skin samples and only asked me if I'd be willing to send a saliva sample for DNA testing.  So I just figured that the literature that came with the test kit was what they sent to everyone who participated in any kind of test for the hospital  (There must be many other research projects being run at Guy's all the time, I reckoned).  Did Dr Tziotzios say anything to you about wanting blood or skin samples?

Comment by Celia on December 20, 2013 at 3:49pm

Kath - how are you doing without a derm ?  Who is looking after you now ?

Comment by Celia on December 20, 2013 at 3:39pm

I am 5'3" - I was prescribed 200mg twice daily but I did not feel good with that - I take 1 only and feel OK.  It is a little disconcerting that the prescribed dose seems to vary according to who we see. Does 'size' mean body mass as opposed to height - that would make more sense.  Anybody agree ?

Rebecca - interesting that your derm said plaquenil doesn't work.

Comment by jess on December 20, 2013 at 2:55pm

my derm perscribed me 400my of hydroxy and I am only 5'1".  do you think I am taking too much?

Comment by MJ on December 20, 2013 at 1:36pm

Celia, I was originally told I could only take one 200 mg tab daily of the hydroxychloriquine because of my size. I couldn't go up another 200 mgs and the tablets don't come in smaller doses. Concerned that I simply was not getting enough, the prescribing doc said I could actually tolerate up to 340 mgs daily. Although the manufacturer advises against splitting the tabs, he agreed I should try. He thinks it might cause more risk of tummy upset. MJ

Comment by Polly UK on December 20, 2013 at 1:19pm

Celia - I phoned my surgery to find out my blood test results and the receptionist could only tell me that a GP had looked at them and they were normal. I will phone again in January and ask to speak to a GP to hopefully find out more.
I haven't read about avoiding alcohol with Hydroxychloroquine (mine isn't called Plaquenil but I assume they are the same thing). I drink a glass or two of wine most days! I have read that when Hydroxy is prescribed the height of the patient is more important than weight for determining the dose. According to this my maximum dose should be 300mg and I should take 2 tablets one day and one tablet the next. I will talk to my Derm about this in January. I don't want a build up of toxicity.
I have been on Hydroxychloroquine for 4 months and hair loss is much less but I am still losing some hair each day. The inflammation is also much better which is partly due to Hydroxy and also I think I'm having less flare ups since taking Cetirizine each night.
My saliva test has arrived and I will wait until after the holiday to return it. I would like to know a bit more about the skin test - does anyone know from where the skin is taken and if it can be done locally?

Comment by MJ on December 20, 2013 at 12:49pm

I was just reading back on some of these posts since I am still new to all this. I was particularly interested in the regimen you follow, Christie. I am only finishing my first week of clobetesol and although i am using a q tip very carefully applying it in my hairline, by the morning after two applications the prior day, my hair is very greasy. How are you able to then apply rogaine and retin on top of clobetesol? Or did I not read your post correctly? I am taking notes for my next doc appt. can you tell me a little more about how you apply these things? MJ

Comment by Celia on December 20, 2013 at 12:29pm

I'm sure we have all read the info regarding taking plaquenil and the side effects, but I've pasted this below.

This medication should not be used if you have certain medical conditions. Before using this medicine, consult your doctor or pharmacist if you have:

• certain eye problems (retinal or visual field problems from other aminoquinolines such as chloroquine)

Before using this medication, tell your doctor or pharmacist your medical history, especially of:

• alcohol dependency
• certain blood disorder (porphyria)
• certain genetic problem (G-6-PD deficiency)
• kidney disease
• liver disease
• certain skin problems (e.g., atopic dermatitis, psoriasis)

This drug may make you dizzy. Do not drive, use machinery, or do any activity that requires alertness until you are sure you can perform such activities safely. Avoid alcoholic beverages because they may increase your risk of liver problems while you are taking this drug.

As I said a few days ago. my GP said that it wasn't necessary to monitor liver and kidney function when on this drug.  I will ask him to explain this further for me.  I have asked to have copies on my test results done by the dermatologist.  Do the results of these tests go to GPs automatically for anyone in UK I wonder ?

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