Fibro AND Lupus treatment

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micropoduskas
New Member


Date Joined Jun 2014
Total Posts : 5
   Posted 6/25/2014 11:00 AM (GMT -6)   
Hi all! So, the Lupus dx finally came (my ANA was a high positive). I was dx with fibro 5 years ago and now with the Lupus, I don't know what is causing what! And it's wreaking some serious havoc on my life! The muscle pain and fatigue are crippling. My dr put me on both Lyrica and Plaquenil. But I know the plaquenil takes months to work. Do either of these meds do anything for you guys? How do you handle both of these monsters?!
Diagnosed with: JRA (since childhood), Ulcerative Colitis (2004), fibromyalgia (2007), Lupus (2013), migraines (2014)

Lupus symptoms: severe muscle/joint pain and weakness, costochondritis chest pain, hydronephrosis of kidneys, relentless fatigue, photo-sensitivity, migraines, nausea

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 6/25/2014 1:29 PM (GMT -6)   
So I'm guessing the Lyrica is for the fibro and the Plaquenil for the Lupus? I never got any results that I thought were from the Lyrica, but I didn't take it that long. Plaquenil takes a while to build up in your system, but it will help keep your Lupus from getting worse...and I noticed a difference in 2-4 weeks.

One thing is for sure -- my fibro is quieter if I keep moving. If I skip too many days of gential exercise my whole body wants to freeze up on me.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 6/25/2014 1:30 PM (GMT -6)   
So I'm guessing the Lyrica is for the fibro and the Plaquenil for the Lupus? I never got any results that I thought were from the Lyrica, but I didn't take it that long. Plaquenil takes a while to build up in your system, but it will help keep your Lupus from getting worse...and I noticed a difference in 2-4 weeks.

One thing is for sure -- my fibro is quieter if I keep moving. If I skip too many days of gentle exercise my whole body wants to freeze up on me.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

micropoduskas
New Member


Date Joined Jun 2014
Total Posts : 5
   Posted 6/25/2014 1:33 PM (GMT -6)   
Good advice for the fibro. I'm assuming the fibro is worse because the Lupus has had me bed ridden for a few months. I think my dr is hoping the Lyrica will be helpful for the pain, regardless of whether it's the Lupus or fibro causing it. I

t's heartening to hear that you responded to the plaquenil so quickly! I've been told it takes 6 months. Ugh, that's a long time to wait for results, but I'm willing to try anything out of desperation!
Diagnosed with: JRA (since childhood), Ulcerative Colitis (2004), fibromyalgia (2007), Lupus (2013), migraines (2014)

Lupus symptoms: severe muscle/joint pain and weakness, costochondritis chest pain, hydronephrosis of kidneys, relentless fatigue, photo-sensitivity, migraines, nausea

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/25/2014 3:15 PM (GMT -6)   
Yep, it sounds like if your lupus has you laid up in bed, your fibro will act up. It's such a fine line between the two diseases. Its really hard to tell which is causing what that's for sure.

I have the lupus, fibro, and RA, sometimes I can't begin to tell my Rheumy which is bothering. I tried Lyrica and couldn't tolerate it. Both my Rheumy and PCM pushed to try Cymbalta for my fibro pain. I finally relented and started it. I've been on it almost 2 years now I think and it actually does help me somewhat with my muscle burning.

I know it's hard to exercise but with fibro you really need to move or you'll get worse with your fibro. Even if you could manage to just take a gentle walk daily it would be helpful. I used to go to the pool and gently stretch and tread water for exercise. You're weightless in the water so no pain for the joints with your lupus. My lungs however, have become so bad, I require oxygen 24/7 and can no longer go to the public pool. I'm not allowed to have my oxygen by the water. cry

I know when I was able to go to pulmonary rehab twice a week, it was really helping my fibro. I would walk on a treadmill, ride a stationary bike, lift 4 lb weights and did mild stretching. I hope to return to rehab as soon as my foot has healed from my surgery. So, maybe you could try one of those to see if it helps.

When I started Plaquenil it didn't take the full 6 months for it to work. It can take up to 6 months, but most people respond quicker than that. I hope you start to feel better really soon and remember try to keep moving, eat well, and get plenty of rest.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

micropoduskas
New Member


Date Joined Jun 2014
Total Posts : 5
   Posted 6/25/2014 3:20 PM (GMT -6)   
Such good advice Barbara, thank you! Prayers for your good health!
Diagnosed with: JRA (since childhood), Ulcerative Colitis (2004), fibromyalgia (2007), Lupus (2013), migraines (2014)

Lupus symptoms: severe muscle/joint pain and weakness, costochondritis chest pain, hydronephrosis of kidneys, relentless fatigue, photo-sensitivity, migraines, nausea

pbjsammich
Regular Member


Date Joined Jun 2012
Total Posts : 66
   Posted 8/3/2014 1:44 PM (GMT -6)   
I came across this and decided to add my 2 cents. I take Plaquinel and was told it would take up to 6 months as well. I noticed a difference in a month after a few dose adjustments. After 3 years, I bet I would be in very bad shape if I weren't on it. Like Barbara, I have SLE, RA and undiagnosed CFS and Fibro. I say the last two are undiagnosed because the doctors cannot figure out if I am in a flare related to the RA or Lupus or both. It is a safe bet to say I have the Fibro, I was put on Lyrica and only lasted several days. I swelled up so bad I could not walk. The bad reaction to the drug was not worth it to continue. I have noticed that if I do not do some type of movement daily, the fibro really does aggravate everything else that is wrong with me. So, some type of gentle stretching should be done daily. I would love to try swimming since that was one of the many activities I did in my former life before lupus. I am scared to since I am not exactly able to get up or down without any assistance.
I have become a fan of laying on my bed and doing stretches and crunches. Besides, if I get tired all I have to do and curl up and take a nap.
Slow and easy does it.
Good Luck!!
pbjsammich

RA SLE Acid Reflux/GERD Costochondritis PTSD
Methotrexate shots, Plaquinel, Sulfalazine, Omeprazole, Folic Acid, Calcium Carbonate, Cholecaliferol, Celebrex, Allegra, Lactose,

Ain't Life fun? :)
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