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Plaquenil


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#1 Kathy D

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Posted 13 March 2009 - 05:12 AM

Curious,

Rheumy said helps with inflammation, but which inflammation? My joints?, Swollen hands?, or my insides?

Thanks!

KD
Diffuse Scleroderma Diagnosed March 2009

#2 Jeannie McClelland

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Posted 13 March 2009 - 06:29 AM

Hi KD,

We have a section on Plaquenil.

When my rheumatologist prescribed it for me, it was to address pain and fatigue, and to possibly take up the slack caused by having to reduce my dosage of CellCept. It took a couple of weeks to feel the full effects of it, but once it kicked in, it really helped. As far as the swollen hands go, nope, no effect.

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#3 JANQ

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Posted 13 March 2009 - 07:37 AM

Hi KD and Jeannie:

I am glad you brought up this topic. I am on the generic Plaquenil and Prednisone, both for about 3 months now. I have not noticed any difference in the fatigue, but have had a lot of reduction in joint pain. My hands are still red and swollen, with no difference.

I was under the impression from the P.A. at my rheumatologist's office that the Prednisone was the only drug that was being prescribed for my symptoms, however, in reading the article Jeannie gave, it seems that the Plaquenil also just addresses the symptoms.

Am I reading this correctly? If so, what addresses the disease? How can you ever get the disease under control if you are not taking medications to control it, just the symptoms?

Just curious after reading this post.

Hugs,

Janet

#4 barefut

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Posted 13 March 2009 - 07:40 AM

Thanks for the question - I have wondered the same. I wish I knew why my doctor has never suggested it especially since 'we' want off the prednisone.

#5 Jeannie McClelland

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Posted 13 March 2009 - 09:37 AM

Wow, you all do ask tough ones~

I think the short answer to the question "How can you ever get the disease under control if you are not taking medications to control it, just the symptoms?" might be that although they are coming closer (I think) to understanding what causes scleroderma, they really haven't pinpointed it yet. Until they do, they can't treat the disease itself, only its manifestations.

There are a couple of pages you might look at: Disease-Modifying Anti_Rheumatic Drugs (DMARDs), Scleroderma Treatments and Trials, as well as Scleroderma Treatments - General. On the 'General' page, there is a link to an article about the progress of a company called arGentis towards marketing what they believe is a treatment for what they think is the underlying cause.

The way I look at it is to think of each of my symptoms/complications as separate entities and if they can successfully stabilize or improve those, no worries~ The longer I stay healthy, the more chance I have to be there when they find the cure!

Now for the prednisone/Plaquenil question. Have a look at the section on Steroids. There are a lot pros and cons in regards to the use of steroids. I'd be willing to bet oh, say this week's lunch money, that almost all of us will have been on prednisone at one time or another. I was on it for a couple of years, but my wonderful rheumatologist and I had the risk/benefit conversation last year and agreed that for me it was better to come off it. All the things it had helped with came roaring back. I managed about 6 months off it, but was pretty miserable. That's when I went on Plaquenil (actually the generic version).

It's my understanding (and bear in mind you need to check everything I say with your doctor and/or a good pharmacist) that steroids are considered to be anti-inflammatories and Plaquenil, although an anti-malarial, is considered to be a Disease-Modifying Anti-Rheumatic Drug. The two classes of drugs each work in a different way. Each comes with its own set of risks/benefits. Which one a doctor favors probably depends on a number of factors: his own clinical experience, familiarity with one medication over another, each patient's individual circumstances, and the patient's preference (to some extent).

Whoooeee, am I long winded today! :lol: Was any of that helpful??

Big hugs and a set of virtual reading glasses to each of you to counter-act eye strain,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#6 Margaret

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Posted 13 March 2009 - 09:38 AM

Hi KD ,

I asked Gareth's rheumatologist once what Plaquenil was/did and she told me it was a drug that "jump starts the immune system". I am not sure what that has to do with the inflammation, though.

Take care, Everyone.
Margaret

#7 MaryFanPhilly

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Posted 15 March 2009 - 02:18 PM

Hello KD,
Unfortunately with sclero, inflammation is part of the territory. Joints, muscles, the whole shebang. One of the amazing and frustrating things about sclero, for doctors as well as for patients, is that there is no one single treatment which helps everyone. They pretty much throw everything at the wall and see what sticks.
That goes for disease management AND symptoms, which aren't the same thing and which don't even move at the same pace sometimes. DMARDS are by definition non-steroidal. Most doctors and patients will avoid steroids if something else will work! Plaquenil is one of the 'steroid sparing' drugs which help some of us.
In my particular case, I can tell when the 'flaring' occurs by the skin on the inside of my elbows which gets red and hot. Sometimes for days, sometimes for weeks. I have tried nearly every treatment with the only relief coming from Prednisone, that two-headed dragon that Jeannie describes. So you'll wanna be careful with that.
It might take some time and some trial and error to come up with a combination that will work for you. Good luck and keep your chin up! Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#8 betty32506

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Posted 15 March 2009 - 05:14 PM

I took Plaquenil for a few months and if it helped I could not tell it. There is a caution concerning the eye. So be sure to tell your eye doctor to watch for this.
Rods in the eyes are how you get color vision. I have always had color problems. My eye doctor had the retina specialist check. That doctor told me not to take it as my retinas are "compromised". I don't think Plaquenil had already caused problems but because of my history he said don't take it. Here is that risk/benefit thing. If you have color vision problems I would say have a retina specialist check your eyes.
Betty

#9 WestCoast1

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Posted 16 March 2009 - 06:10 AM

Hi Fam~

From what I know about Plaquenil, it has some of the same properties of a Immunosuppressive. However, it does not quite supress the immune system. From what I remember (which is not a whole lot these days) our immune system is over active in a negative way...anything that puts our immune system into overdrive can make us feel sick. Plaquenil was created for Malaria which causes arthritis like symptoms (among other things). Luckily it helped some symptoms of Lupus and other autoimmune diseases and has very few side effects.

I have been on and off of it for years now, and I can tell you from personal experience that a few months after being off of it, I feel more run down, more achy, and have more bad days than I do good. Once in a blue moon, my rheumatologist will ask me if the Plaquenil is helping and I can't really say for sure UNTIL I go off of it, and remember how much worse I could possibly feel.

I know that everyone reacts differently to meds, and it is not the answer for everyone. Meds are definately something to work closely with your doctor on. Keep notes of side effects, and decide if the good outweighs the bad.

For me, Plaquenil is a must. Hope this helps.

Hugs~
erin
*WestCoast*

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