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Sjogren's Syndrome
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Posted 4/17/2014 8:59 PM (GMT 0)
Hi Everyone,

I'm looking for a little guidance....maybe moral support for others going through similar symptoms.

I was diagnosed with Sjogren's 2 years ago.  I was very fortunate to have it diagnosed quickly (less than 7 months) and thankfully while I have some symptoms (none are dibilitating)...but it seems they are all getting worse.

My biggest problem has been related to my eyes/mouth dryness and have been functioning fairly well.   Lately however, I find I am really starting to suffer from lots of aches and pains and extreme fatigue.   I'm so tired I have fallen asleep at my desk at work!!   My aches and pains are not that bad.  Pain radiates often in my hip, both shoulders and a few fingers and 1 thumb.   The pain sometimes is just a dull ache and other times, I want to cut off a finger or two!!   

My RA and GP have both suggested using Plaquenil and I have refused twice.   I feel like I'm not at the point that I need to be taking medications on a full time bases.  Further, I"m 42 years old and I'm concerned that should I start taking the meds now....what will happen in my 60s?  Will the meds still work?  

Is anyone taking Plaquenil and if so, do you find it works for fatigue??   Should I just bite the bullet and give it a whirl??    I should mention that I believe many of my aches and pain is related to the fact that I am obese (especially in hips/knees).   I imagine this plays a part in how tired I am at times.  Having said that, I'm so darn tired all the time, that I have no energy to do anything. 

I appreciate any feedback anyone can share. 

Posted 4/17/2014 10:18 PM (GMT 0)
Plaquenil is known to stop the progression of the illness. Once it gets bad you can't go backwards, so there is no point in waiting to start it - quite the opposite, in fact.

Yes, it can help with the fatgiue.
Posted 4/19/2014 2:17 PM (GMT 0)
Welcome to our forum nikki1972! I completely agree with Lynnwood that plaquenil helps stop the progression of your disease, so the longer you wait the worse your Sjogren's becomes. Plaquenil is a fairly benign medication and was originally developed to protect against malaria. Later it was found to help autoimmune diseases. It can be months before you get relief with plaquenil. I wouldn't wait any longer. Feel free to stop by our forum any time, even if it is just to vent. Love, Butterflake
Posted 4/22/2014 5:17 PM (GMT 0)
I would agree with others...do not wait to try the plaquenil.  It does take time to build up in your system.  The most important thing to remember when taking it is to be certain to have a baseline eye exam from an opthamologist not an optometrist and then be followed minimally once per year or every six months as it rarely can cause eye issues.  Also take it with food until your stomach gets used to it.

Although I understand what you are saying about not wanting to start meds at your age (I am only a few years older than you and have been on plaquenil for a year), it does help me with fatigue, it helps with my aches and pains and it has helped some with my dry eyes...worth a try.  It is the first line of defense with many AI's - there are more serious medications that really need to be considered seriously but this one I had no hesitation in my decision to start it and am glad I have.

Keep us posted.

Take care.

Posted 4/23/2014 5:59 AM (GMT 0)
I currently take hydroxychloroquine (Plaquenil is a trade/brand name) and have been for the last 2 months, I'm in the early stages as it can take 3-6 months before the "full" effect of the medication is felt. However I can say that within the time I've been taking the meds, while I'm still very tired, I do feel as if I've got more energy (if that makes sense).

Once thing I've noticed is that I'm aware of my discomfort more - not sure if it's because I'm experiencing more "flare-ups" (as the meds haven't taken full effect yet) or because I'm not concentrating on trying to keep awake. But either way, I'm glad that I've been prescribed and taking hydroxychloroquine. I've heard stories on forums on where people have come off it as they were unsure of the effects of the drug only to realise after a few months off it what hydroxychloroquine was doing/preventing/keeping at bay.

-Ken
Posted 4/25/2014 1:14 PM (GMT 0)
I was diagnosed with Sjogren's in November 2013. My doctor wanted to put me on Plaquenil as soon as possible but required I see a optamologist (sp?) before he would write a prescription. I couldn't get into the eye doctor until January 9 which is also the day I started Plaquenil (I take hydroxycholorquine). I try to avoid meds as much as possible because if there is a side effect I'm going to have it. Initially I did have a side effect with Plaquenil. had diarearha (sp?) 2-3 times a week for 2 months or so. The doctor said once my body adjusted the side effect would go away. But I have been so impressed with this med that even if my body had not adjusted I would continue to use it. My legs and hips stopped aching. My inner elbows stopped hurting (I can now flush the toilet without hurting). My ears have stopped itching so much that I would put bobby pins in them to scratch. It has not helped me yet with my mouth and lips or being tired but since I haven't reached the six month mark I still have hope. I am with the others and encourage you to start Plaquenil. I think you will feel much better and slowing the progression of this disease is important.
Posted 4/25/2014 3:43 PM (GMT 0)
I found that the generic (hydroxycholorquine) kept on bothering my stomach, so I use Plaquenil (brand name) instead. Works great!
Posted 4/26/2014 3:11 PM (GMT 0)
Plaquenil was my try with meds. It gave me eye problems; my eyes felt like they were dilated all of the time and the sun drove me crazy, even though I was wearing dark sunglasses. I have to say though, that otherwise I felt terrific. I am actually thinking about trying it again. Nothing else works with me. I am the side-effect queen.

If I were you, I would give it a try.
Posted 4/26/2014 3:12 PM (GMT 0)
I meant to say it was my "first try" with meds.
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