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Biomarker for Diffuse Scleroderma skin has been discovered!


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Plaquenil


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#1 fancyface

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Posted 24 January 2008 - 07:38 AM

I was recently started on Plaquenil. Has anyone had success with it? The methotrexate did not work for me! It made me so tired that I could not function. My fatigue got better when I stopped taking it! The only thing about plaquenil is it takes so long to become effective but I am extremely grateful not being as tired as I was... :P

#2 Michelle2

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Posted 24 January 2008 - 08:04 AM

Hi there~

I take it and it took three month's before I notice even the slightest changes. I hope it works faster and better for you.
Take care and stay warm,

Michelle

#3 truman

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Posted 24 January 2008 - 08:11 AM

How often did you take the methotrexate?

I take three pills once a week, and I've found that I've been napping constantly. Is that a side effect of the medication?
Tru

It is what it is...........

#4 Sweet

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Posted 24 January 2008 - 08:39 AM

Hi Fancy,

I am on plaquenil, and even though it does take a few months to kick in, it's been a lifesaver for me. I tried to reduce my dosage once and I was so very sorry. I notice now if I don't take it approximately the same time each day, I start hurting more and am so fatigued. Stick with it!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Margaret

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Posted 24 January 2008 - 11:18 AM

Hi ,

My son, Gareth, started on Plaquenil last June and I can say that within that first month we saw major improvement in his vocal cords....he could talk again. It wasn't until Sept. that he commented that his food doesn't get stuck anymore..... from the esophageal dismotility. His pain slowly went away after the first month or two and his personality picked back up accordingly. The fatigue....well....he still lays around a lot at the end of the day, is in bed by 7:30-8:00 daily, but is not sleeping all weekend like before the Plaquenil. It is the first drug he has been on for his UCTD/sclero.
Take care, Everyone.
Margaret

#6 Jordan's Mommy

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Posted 24 January 2008 - 01:52 PM

My 7 year old has been on Plaquenil for 2 years now. She never had any physical complaints related to her sclero, so I don't know if it has been helpful or not. Her hair has thinned out quite a bit since she started taking it, but no other side effects have occurred. Her illness has not progressed since she started taking it though.

Jennifer

#7 Sd53

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Posted 24 January 2008 - 03:29 PM

I totally agree with Sweet, I've been on it as well as the Methotrexate (only because my body seems to tolerate it), and it helps me. My doctor also gave me 1 mg Folic acid tabs to take once a day for hairloss. It works for me, although I do still loose some hair anyway, nothing out of the ordinary though. Maybe ask your doctor about the Folic Acid tabs. Take care.

#8 fancyface

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Posted 24 January 2008 - 03:43 PM

Truman,
I took 5 methotrexate pills a week. Yes I was extremely sleepy! I would feel a huge wave of sleepiness just hit me out of the blue while working on the floor at my dialysis clinic. It was very disturbing! I feel much better off of it!!! :lol:

#9 fancyface

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Posted 24 January 2008 - 03:47 PM

I have noticed a change in my hair. I have naturally very curly hair and I have noticed that it is getting straighter :(

Has anyone noticed this? No hair loss yet though!

Melissa
(Mel for short)