Plaquenil for Fibromyalgia

[PennyPru]

Hello, I'm a newbie and so very appreciative of all the kind people here and your willingness to help others who are struggling for diagnosis and proper treatment. I've just been Dxed with fibromyalgia and I am having quite a go at trying to find medicine that helps me instead of hurts. I strongly suspect SLE as I have many ACR criteria (cold sores in mouth and nose, pleurisy, blood and protein in urine etc.), but my rheumo does not agree, as he says my ANA isn't high enough (although it was positive and speckled).

I'm trying to get creative about getting medicine that I hope will help me. I was wondering if anyone has ever been granted a "therapeutic trial" of plaquenil to treat fibromyalgia? I've been struggling with the meds he's given me (lodine and zanaflex). Seems to make me have more pain and urination problems. I'm worried about kidney involvement but my rhemo is not and hasn't even tested me. Anyway, I was thinking if I could convince him to let me try plaquenil, maybe I'd get to feeling better sooner. This bout of "whatever it is" has been going on since end of May and has made it very difficult for me to care for my children.

Blessings upon us all,

[Starrgazerlilly]

Hi Penny

I'm not aware of Plaquenil being an effective treatment for fibro but I may be wrong. I've been on Plaquenil for a year and a half and haven't noticed it helping my fibro symptoms though it has been helpful in other ways which I presume to be in connection to my autoimmune problems... but who knows?!

What has helped with fibro a bit is Gabapentin (Neurontin) but it took a long time to build up and take effect. It has helped reduce some of the burning in my thighs, buttocks and spine areas and reduced some of my nervy scalp and eye pain but all of this only if I stay pretty inactive and I am still in constant pain. I have been ill for a very long time though, so things may carry on improving slowly. I think my sleep quality is a little better on the Gabapentin too, which is helping my body to heal. I wish I'd known about it years ago cos it definitely has improved my quality of life even if it hasn't worked miracles.

If your doc won't let you try Plaquenil perhaps suggest Gabapentin (if you haven't tried it already?). I hope you find some relief very soon, it must be so hard trying to look after a family whilst feeling so unwell.

Best wishes

[helloos]

Hi Penny.

I think you need to see a new rhemo. With a "positive" Ana and symptoms and the (protein in your urine, he should be at least checking why there is protein). What is he waiting for?

I think a second opinion here is in order.

[PennyPru]

Thanks for the input. Indeed, I am getting another rheumo. I'm trying to get into University of North Carolina at Chapel Hill, as I understand a medical college may prove my best bet for a Dx and proper treatment. They are reviewing my history to see if I qualify. (fingers crossed) I am hoping to see a lupologist, but it will be difficult proving my case b/c all the doctors I'm seeing say it's not SLE, so my files may not be interpreted by the Uni for SLE. It's going to be a few months before I see the new doc though.

In the meantime, I'm trying to make the most of my current rheumo. He has given me Cymbalta, but I've been too scared to take it. He gave me other meds (lodine and zanaflex) that seemed to make my spine burn worse, and definitely increased my urinary problems. (He says it's impossible.) I also had a very strange unpredictable personality changes, that have concerned me about CNS involvement. He hasn't tested my kidneys, but did collect a urine sample from me last week. I assume all looked fine, as I haven't heard from him. I have been having only "trace" protein, but several years ago--perhaps when this all began--I had blood, epis, and cast cells in my urine. My former doctor NEVER acknowledged this or did antying to investigate. It was only when I gathered all my medical records a couple months ago, that I discovered this.

I have an endo who has run a few other tests including a metabollic panel yesterday. We'll see.

I feel like a hot potato. Each specialist I have (neurologist, rhemo, endo, OBGYN) defers to another and no one will step up and take charge ... so I am!!!!

Right now I've been doing MUCH better, except I have hives on my feet and have muscle spasms on my back. I can deal with this w/o meds for now. I'm sleeping better. I'm just so scared about kidney involvement, especially b/c it can be so illusive.

StargazerLily, Thanks for your input, especailly about the burning you experience. I am so sorry you are suffering, but I feel your strength and that gives me such deep hope. How long have you been on gabapentin???? The pain you describe iis EXACTLY what I have noticed. In the AM, before I get out of bed (if I can get out of bed) I have a burning surges that shift from my knee, to my back, to my wrist, my brain, neck, and all over. It's very strange. It helps me to know that fibromyalgia cause burning b/c when it hits me, it's surreal ... but verrrrrrrrry real at the same time. When it lands in my spine, I often rock and rock and breathe deeply, alike child labor. This goes on for hours, and then all of a sudden, it stops ... without rhyme or reason!!! (Until the next time.)

Thanks for reading and for caring.

[raggedyann1]

Penny,

While Fibromyalgia is a real diagnosis and is recognized as a pain disorder it is not a auto-immune disease. Plaquenil is used in the treatment of most connective tissue diseases.

Cymbalta is a new medication that is now being used instead of the older trycyclic anti-depressants that are used more often for helping patients achieve the deep levels of sleep. It is said that fibro patients do not get deep sleep even though they sleep alot. I personally take nortryptaline an older trycyclic and it makes a huge difference on my quality of sleep. Depression is also standard with any chronic illness and my understanding is that with cymbalta both the depression and the sleep issues are taken care of with one pill. I take an additional pill for my depression.

I also take Gabapentin with my nortryptaline and my fibromyalgia is mostly under control. If you press on the trigger points I will notice the pain but otherwise I rarely know it is there. That could be because I have other extreme pain issues with my lupus and scleroderma. I do know that Gabapentin is a wonder drug for me. I am only able to tolerate 600mg and can only take it at night. I do tell all my doctors that they are not to make any changes in my Gabapentin dose. This is because I have had doctors go both ways increase and decrease. Increase just makes me too spaced out and I never adjust to the higher levels that most people are able to do. 600mg of Gabapentin is considered a low dose. When my dose was lowered my fibro flared almost instantly.

Do you have copies of all your blood work? Is your ana your only positive blood test? what is your ana result. Often people can have a 1:40 or 1:80 and not have a connective tissue disease. Many doctors will dismiss an ana that low without other clinical presentations that are specific to CTD's. I think that seeking a second opinion is a good idea. Do get copies of all your records with any doctor that you have seen. Having your own set of records can be very helpful and then you know exactly what your results are. It is against the law not to give a patient copies of their charts.

Take care,
Karen