Comment

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 ?

Comment by christiekd on December 20, 2013 at 11:52am

Sorry to hear this Rebecca!  If I were you, I would not do anything without further discussing it with your GP.  Maybe your levels are not significantly higher to warrant a change in your prescription.  You should discuss the risks and decide at that point whether to continue on with the plaquenil at the current dosage.  Plaquenil is very helpful when trying to stabilize this disease.  I hope this helps.

Comment by Celia on December 20, 2013 at 11:50am

What does liver level mean ?  How does your GP know it is due to plaquenil and not something else ?  What did she suggest ? One tab a day ?  I take only one tablet a day and I don't think it is making any difference to my hairloss, certainly not slowing down.  Kath - my Christmas present arrived today too -  something to enjoy later.

Comment by Pam on December 19, 2013 at 4:33pm

Yes, my present turned out to be a saliva sampling test! It does seem a bad time to put things in the post, with Christmas coming up next week!

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