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PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 1/15/2014 1:24 AM (GMT -6)   
I've been pretty stable off & on for a couple of years and have been exercising & getting my life back on track. When I flare it's not like it was when my lupus was active. I still get a lot of rest & believe it helps

Late last year I thought I had a stress fracture on one of my feet but the X-Ray was normal and my orthopedic doc thought it might have been tendonitis. A few weeks later my shoulder started hurting so I went to my rheumy who thought it was tendonitis. A few days later I had a personal crisis which has caused much stress so I hadn't followed up with lab work. Now, my other shoulder feels the same & so does the other foot. Even my toe joints hurt. The backs if my knees are very painful this week. I'm used to knee pain but in the joint, not in the soft tissue at he back. I have fibro but this is different. The pain is sharp and appears to be spreading. I got my labs done today and am anxious to get the results.

I'm having trouble getting much sleep because of the pain and my husband tells me that I moan a lot at night.

Does this sound familiar to anyone? My best guess is that I'm beginning to have a bad flare but don't remember a flare ever starting in one set of joints and slowly overtaking my body. I usually affects my entire body at the same time.

I'm afraid that having gotten off plaquenil has brought this on.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/15/2014 9:19 AM (GMT -6)   
How long have you been off plaquenil? Did you ramp down? I know some people have had issues reappear when coming off it suddenly. I had taken 2 pills daily for several years, then was doing much better and down to 1 pill daily. Did the 1 pill thing for about 1.5 years before coming off, and I had no issues.

I get what they call tendonitis but its really Fibro. By that I mean that 'tendonitis' basically just means inflamed tendon, and it could still be generated by either Lupus or Fibro. But that doesn't sound quite like what you are describing. (Mine is always in the right side of the body, and can start in any joint.)

I hope your labs will help explain and help your rheumy get to the bottom of this. Best wishes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 1/15/2014 11:15 PM (GMT -6)   
I hope you'll let us know what you find out. I, too, am tapering my plaquenil to one per day. Rheumy say I could also do a 2/1 combination. It's been about a month. So far, so good. Just like it takes time to build up in your system when you start, it also takes time to leave your system completely - about 5-8 weeks, according to my doc. I tried this in 2010 and it launched me into a nasty flare after about 6 weeks. I think it can settle in wherever it wants - muscles, joints, tendons, etc. The pain you describe in the backs of your knees makes me think of Baker's Cysts. Hope it's not a bad flare!

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 1/17/2014 1:26 PM (GMT -6)   
Boy does that sound familiar. I went through more flares when I reduced down from 400 mgs of Plaquenil to 200 mg. It took boosting the Prednisone for a time being, then tapering from that. Finally, I was able to stay at 200 mgs and feel okay. My husband also says I moan at night. Lately more than ever. I have noticed a slight increase in joint and muscle pain as I have been tapering once again with the Prednisone. I get frustrated with this push-pull dance of medications!! Hang in there!!

Laura

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/19/2014 4:22 AM (GMT -6)   
Hi Patty:

Long time no see you around. I'm sorry to hear that you're having issues with your shoulder. It sure is depressing when we have a lot of pain in our bodies for a long time. I've never been off Plauqenil, so I can't offer to much assistant.

When do you see your Rheumy next? I sure hope they can figure out what's going on inside to get you back up on your feet really soon.

I think that making sure you drink plenty of water, hopefully, you'll be well before you know it.

As always Patty wishing you the best. You'll be in great shape soon, take care and stay in-touch.

Hugs,

Barbara
301-498-1481 home,
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.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 1/25/2014 2:15 AM (GMT -6)   
Still no results of lab work so I'm still putting up with arm pain but I'm trying to give my right arm a rest by staying off the computer, not writing, and I stopped knitting for a couple of weeks.

My stepson died unexpectedly in his sleep Dec 5th and the stress since then has been overwhelming. The cause and effect of stress on the body is very clear to me. So of course I'm flaring.

Back to the plaquenil issue, Lynnwood, I doubt that I'll ever stop taking it again.

Barb it's good to hear from you too. I drink a couple of quarts of water a day and finally gave up diet coke.

Post Edited (PattyLatty) : 1/25/2014 1:18:04 AM (GMT-7)


acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 1/25/2014 5:46 AM (GMT -6)   
Hi Patty, I'm new here and my lupus flares are like that. They can start slowly and take over and sometimes they are faster. I'm finding that with events that are quite stressful for me I get a warning which is hard to explain but my head gets weird. I guess its like a blurred effect or like my head is floating on my body. I don't know, it's weird.. anyway, that is my warning and I try and breathe deeply and talk myself through it. This happened again on Thursday, my hubby was in a car accident (he's ok thank goodness) but just after he called me my head got "weird" so I did my relaxing routine and I think it may have prevented a huge flare on top of my current flare.

I get pain in the back of my knees too which I thought was really odd as well - very sharp. Thankfully it has so far only lasted for a few days then disappears again. I don't have fibro.

I'm so sorry to hear about your loss, my sincere sympathy. I wish there was something I could say or do to help :(

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 1/25/2014 4:11 PM (GMT -6)   
It's good to hear from you Patty and I am so sorry hear about your stepson. My daughter is 28 years old and means the world to me so I can't even imagine how you must feel.

During my coma in 2011 I was off plaquenil and didn't start again until 2012, but I was so ill I can't say stopping suddenly had any effect at all.

As for your arm, speaking from a medical perspective, everyone's should rest the "injured" part, but this should only be done for a couple of weeks unless your doc says otherwise. If you rest it too long it will "freeze" making rehab even rougher.

I sure hope you feel at least somewhat better soon. Condolences. Love, Donna
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/25/2014 4:53 PM (GMT -6)   
Sorry about your loss.
I get those pains you describe in my elbow and shoulder regular. Try to move it regularly. I like to brace the joint if possible and keep using it. The compression seems to help it feel better. Be sure to alternate ice and heat on the sore places.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 1/29/2014 9:47 AM (GMT -6)   
By now I'm convinced that my shoulder pain is tendonitis. When I saw my rheumy to ask about it, he ordered blood work and even though I have called his nurse, I haven't heard back from him. It's been three weeks. Disappointing. I'm going to call another rheumy who's a little farther away but who's beloved by his patients and see if he will see me.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 1/31/2014 9:49 AM (GMT -6)   
Bursitis and brain fog.

Oops, I was supposed to have made an appt in Dec. to see my rheumy and review labs & talk about my shoulder. And his nurse had called me back but I didn't check my phone or messages.

Went in yesterday and was pleased that my labs look good! Shoulder pain is just good old bursitis, which I suspect is the result of my obsession with knitting. It's still painful after the steroid shot the doc gave me, but I seem to remember that the steroid shots I got in a finger joint 20-30 years ago took about 3 days to give me relief. Have any of you had that experience?
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/31/2014 10:49 AM (GMT -6)   
Glad it isn't something more serious -- steroid shot to my hip was pretty instant, but I know it's not unusual to take 3-4 days to feel a change.

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

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2607
   Posted 2/1/2014 10:38 AM (GMT -6)   
So am I Lynwood. Two friends have had surgery for a torn rotator cuff and having watched them during their recoveries, I know that's something I want to avoid at all costs.

By the way, Rosie and I have connected on Ravelry, the knitters' website, but it's been a while. I need to look her up.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/1/2014 7:38 PM (GMT -6)   
Tell Rosie "Hi" from me if you do - miss you both!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/4/2014 10:06 PM (GMT -6)   
Patty:

I'm so sorry about your loss, having a family member pass away is hard, but just before the holidays certainly makes it harder (((((hugs)))))).

I hope that you're feeling better today and that your shoulder is feeling better. I wouldn't want to have surgery on mine either. I just wanted to say that I've missed you and even though you posted because something was wrong, it was good to see your post.

Please take care of yourself and if you still have my number give me a call sometime. If not an email would be great. Make sure you get plenty of rest and keep updating us once in a awhile.

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.

Beating Lupus
New Member


Date Joined Feb 2014
Total Posts : 12
   Posted 2/7/2014 8:37 PM (GMT -6)   
Hi Patty,
Oh so sorry you are having a rough time. So you are weaning down your Plaquenil but still on some Prednisone? My rheum always told me it is safer to stay on the Plaquenil than stay on Prednisone. Prednisone has so many bad side effects!
I think all things are possible!
I have been very fortunate after battling lupus for 10 years, that I was able to wean off of my Plaquenil, Cellcept and Prednisone about 18 months ago. I have done a Mediterranean diet/no red meat, rest, exercise, especially yoga, and I have a special regimen of supplements that I found works great. The key supplement that was integral in helping me stop these meds is Vector 450. It has IgY in it, an immunoglobulin, that supports your immune system. My rheumatologist approved it and now wants to do research on it because it worked so well!! My blood work no longer shows many signs of lupus, it shows I still have it, but I don't have many symptoms other than occasional muscle and joint pain and fatigue. But nothing compared to what it used to be. If I get extra rest and do some yoga, maybe a massage, I will be good as new.
If you want more info on my regimen, let me know!
I really want to share my success with fellow lupus sufferers, since I have come from a very difficult place to a very good place. And everyone deserves to feel great again :)

Hugs :)
Natalie,
<profession removed> lupus survivor

Post Edited By Moderator (Lynnwood) : 2/7/2014 9:39:44 PM (GMT-7)

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