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Plaquenil--used To Treat Crest?


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#1 Maddy07

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Posted 13 October 2007 - 02:55 PM

I'm just curious. I see many here are or have been on Plaquenil. Is this a disease modifying drug? What does it do exactly and is it something you can be on long term?

I appreciate the info or links!

Maddy
Maddy
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#2 Margaret

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Posted 14 October 2007 - 04:01 AM

Hi Maddy ,

My son started Plaquenil in June. I was told it "jump starts the immune system". It is not an immunosuppressent like other drugs used for Sclero. For my son, it has done wonders and has reversed many of his Sclero/UCTD symptoms.

Take care, Everyone.
Margaret

#3 Sweet

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Posted 14 October 2007 - 04:31 AM

Hi Maddy,

My rheumatologist does consider Plaquenil to be a disease modifying drug. They truly don't know exactly how it works. It does reduce the pain and fatigue and has the ability to "stop the disease in its track and keep it from progressing" Those are my rheumatologist's exact words. It was originally created for malaria, which as you may or may not know is the famous "sleeping sickness" - therefore that is why it helps with fatigue.

I tried to wean myself off of it once, (because I'm so anti drugs) but I tell you what I will NEVER do that again. Within 2 days I could not get off the couch! Funny, if you ever want to know how well something is working for you, just try to stop it and the appreciation comes back!

It will be a lifelong drug for me unless I start having problems with my eyes. You do need a baseline eye exam and then yearly checks to ensure you aren't having any problems. I'm in a total brain fog right now and so I can't think of the technical term that you run the risk of having with your eyes with this drug.......basically to check to make sure there isn't any plaque build up on the back of your eye that can cause blindness and is not reversible.

Maybe someone else that has a brain working today can help me out with the term!! And I'm the nurse!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Jordan's Mommy

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Posted 14 October 2007 - 04:43 AM

My 7 year old daughter has been on Plaquenil for almost 2 years now. It is considered a disease modifying drug, but not an immunosuppressant. My daughter has never complained of fatigue or stiffness, but that might be because we caught the disease early on, and the medication has prevented it from the start. Her vision is great, but we have yearly eye exams to check for macular changes, as the retinas can be affected by the Plaquenil.

Jennifer

#5 Maddy07

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Posted 14 October 2007 - 07:49 AM

Wow thanks for the info! Fatigue is what is killing me right now! Some of it is due to my shortness of breath (just diagnosis with PH a few days ago so just beginning treatment for that and will take time), but I'm just so tired no matter how you look at it.

I'm a a SAHM with 2 young boys (1.5 and 6 years) and it broke my heart when we had to start sending my 1.5 yr old to daycare because I am too weak and tired to care for him. It was probably the most devastating part of being so sick lately. I hate sending him every morning...hate it.

My rheumatologist and I are not necessarily on the same page and I have it set up with insurance to get a second opinion. But I see the first rheumatologist this coming week and in my mind it's sort of her last chance to see if we can get on the same page. I've had a CREST diagnosis for 10 years now and she mentioned at our last visit that she feels I don't have that, but have Sjogren's instead. Mind you I have no dry eyes, mouth, or anything else. And I consistently test positive with the anticentromere pattern. And I have the R, S, and T of CREST. And now the ph which is definitely seen in people with CREST.

Anyway, I've had my heart cath which she was sort of waiting on, and we have a diagnosis for my shortness of breath. It's time for her to TREAT me now. Enough waiting and seeing and guessing. I don't know if Plaquenil is the answer, but I know that if it's something that is disease modifying, and can help with fatigue, I'd sure be interested in at least discussing it!

Thanks for the info...you all are the best!
Maddy
Maddy
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#6 nan

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Posted 14 October 2007 - 12:22 PM

Maddy,
Like Pam I tried to go off Plaquenil for a whole month and the pain was incredible! I am hoping that my eyes stay healthy so that I can stay on it.
take care,
Nan