Plaquenil and Fibromyalgia

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SoSt9
Regular Member


Date Joined May 2012
Total Posts : 225
   Posted 9/12/2012 12:40 PM (GMT -6)   
My dr told me that she thinks that I probably have Fibromyalgia and an Undifferentiated Connective Tissue Disorder (suspected Lupus). She gave me Plaquenil for the pain that I have been having, and a steroid pack in the interm. Has anyone had a dr do this and had it help the fibro? I am just trying to gather information.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 34979
   Posted 9/12/2012 12:56 PM (GMT -6)   
I have never taken the steroids for fibromyalgia. Though it seems to me others have. I hope that the plaquenil works for you. Let us know how it goes.

I am sorry to hear that you may have lupus. I hope that is not the case. Fibromyalgia can mimic other illnesses. Let us know what the doc says about that.

Good luck with the steroids. I, myself, have taken different ones for other issues. Did not like them.

Hugs, Karen...
Moderator-Depression and fibromyalgia


fibromyalgia, Chronic fatigue, depression, allergies

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/12/2012 1:04 PM (GMT -6)   
Hi SoSt9,

I have MCTD...mixed connective tissue disease. In my case the overlap is lupus, scleroderma and RA. At one time I was taking plaquenil but now use methotrexate.

Plaquenil is an antimalareial med. It has an anti-inflammatory effect simular to NSAiDs...it helps joint pain and reduces muscle inflammation. Fibro is not an inflammatory process. While I was on it, it did nothing to help the everyday achiness of fibro. Plaquenil will also help with rashes. It does take awhile to build up in your system before you notice any results

Make sure you see an eye doctor for a base line eye exam.
If you use plaquenil there is a chance of a serious side effect, retinal damage...it is important to get regular eye exams while you are taking this med.

It initially helped me but I needed to start using an immunosuppressant,

Good luck to you!

Hugs, Robin
Fibromyalgia, Adenocarcinoma survivor, Lung Lobectomy, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12395
   Posted 9/12/2012 3:44 PM (GMT -6)   
I have lupus and fibromyalgia. It's hard to tell which one is hurting me when I'm in pain.
I picture Fibromyalgia as a sneak attack. It hits and runs in different places all through the day.
The Lupus is like an explosion. A huge bomb dropped on me. It can take months to recover from a flare. Also it is an all over attack.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/12/2012 5:20 PM (GMT -6)   
I forgot to mention prednisone...is that what the doc ordered for you?...a prednisone taper

Prednisone usually knocks down the inflammation pretty well and helps with the pain, but does not help fibro.

I'm pretty good about distinguishing the MCTD flares from fibro. With the autoimmune stuff there is obvious swelling, heat and redness around my joints and for some reason the soles of my feet will sometimes turn bright red...it is totally differant from my raynauds. Oh and I get weird rashes...lesions, my skin has changed due to scleroderma.

Fibro is always there...where the MCTD is more controlled, unless I'm having a super flare...then everything goes haywire.

In the end living with whatever you have is basically dealing with it the best you can trying to stay positive and take one day at a time. Life is still fun :)

Hugs, Robin
Fibromyalgia, Adenocarcinoma survivor, Lung Lobectomy, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 225
   Posted 9/12/2012 11:19 PM (GMT -6)   
@Joy - I have a couple different types of pain. When I was first put on the steroid in July, the pain I had in my shoulders went down, but the hips increased. Now they are all hurting. It seems that the shoulder pain is like a dull ache and the pain in my hips is more sharp and hurts more with different movements than the shoulder does. I also noticed that the pain in both increases as the day goes on. By this time at night, I am hurting pretty badly. I am trying to see if I can go without the Vicodin tonight, but I don't think I am going to hold out. I will say that I am figuring out that the sun does affect me. I don't rash (I don't think), but I become sick, nauseous and head-achey. I was outside talking to someone and realized that I really was not well. I went home and after a short errand, I had to go to bed. I have been really off since then. Until I had my first rhuemy appointment at this practice, I just thought that it is how people get in the sun.

@Robin - I am taking the steroid taper (Methloprednisolone?). about the pain, honestly, I am no sure to think about what is what. It seems that as one pain is getting better, another one is getting worse. I told the doctor today that I was so afraid of someone telling me that I didn't know what I was *really* feeling, or that I was faking it. She empathized. One thing she told me about fibro is that most (some?) people with it are hypersensitive to pain. It makes so much sense to me! I have always complained about pain that most others sluff off as nothing. I also seem to have pains that send me to the ER that make the docs wonder about me.

about the eyes, I actually had to get an okay from my Ophthalmologist before they would start me on this. I have weak spots in my retina, and recently had surgery to remove a large amount of floaters caused by a hole in my retina. They tacked it down with a laser as well because they could see the start of detachment. This is an actual retina ophthalmologist that I see, so I think I trust his word. :) I do worry about it though.

@Karen - Thanks! I do not like steroids. They make me feel not well in a different way than the pain. At this point though, I am willing to do whatever it takes to make the pain go away. I hate it. RE: Lupus, I will tell you what I told my mom when she told me "You do not want to have Lupus" as if me wanting it would change what it is or is not. I look at it this way. I have *something* going on. I just want to know what it is. I have been in oblivion for far too long, and this, whatever it is, is going to be around - name or not. I do appreciate the well wished though :)
UCTD (suspected Lupus) and probably Fibromyalgia.... still going through the tests and all that.

Frequent lurker... Part time poster.

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/13/2012 8:19 AM (GMT -6)   
I do understand the frustration of waiting so long to get a diagnosis...I also waited years. It is more difficult for doctors to figure things out when you have multiple or overlap conditions.

I always felt that the docs thought I was exaggerating my symptoms...I even started questioning whether it was all in my head. In time bloodwork and clinical symptoms became more obvious, and after seeing a number of specialists my diagnosis was finally confirmed.

So many of us on this forum have fibro along with other conditions...there are many of us with spinal issues, degenerative disc disease, gastro intestinal issues and much much more.

Every condition needs to be cared for...taking care of ourselves being proactive is the best thing we can do.

"Hope is not about everything turning out OK...it is about being Ok no matter how things turn out."

We are here for you :)

Hugs, Robin
Fibromyalgia, Adenocarcinoma survivor, Lung Lobectomy, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12395
   Posted 9/13/2012 12:50 PM (GMT -6)   
Try to cover up in the sun. I use sunscreen, UV protective clothing and a UV protective hat. I found them at Cooliebar. There are other available on the web.
The sun and fluorescent lights make me feel terrible. I almost pass out under halogen lighting.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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