Frustrated and Confused

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New Member

Date Joined Sep 2011
Total Posts : 2
   Posted 9/26/2011 8:29 AM (GMT -6)   
Hi everyone, Im new here.  Been reading for some time, all of your posts are encouraging and strengthening to me.
I was dx with Lupus about 6 years ago, mine is (was) relatively mild (if there is such a thing) and I have been able to continue to work full time.  I have five children ages 22, 20 ,18, 15 and 5, and an amazingly supportive husband.  My employer is wonderful and I am blessed to be able to work from home on the bad days. 
Steroids are not an option for me.  My mother has SEVERE osteoporosis at age 58, and Im already osteopenia at age 40.  I just had a bone graft and lost a bottom molar to bone loss in my lower jaw.  My family is a genetic mess with my father dying from colon cancer last year, my brother has stage 3 colon cancer now, and my other brother has aggressive PKD.  My children are fine so far, thank you Lord.
SO... how do I fight this??  All my old tricks (resting, eating well) arent working anymore. :(  What has changed?  I considered going to see the doctor this morning, but really... what is he going to do?  Prescribe pain meds?  Muscle relaxers?   I usually get back to my semi-normal state in a few days, and its not happening this time.  Im a computer analyst, so I try to look at this as logically as possible, and I read as much as I can to learn about my condition.  But Im at a loss.  Should I try the Plaquenil again, it made me so sick last time.  I had bad reactions to Methotrexate and Imuran as well.  Vitamin D was mentioned since mine is at a 9... but then I read that the latest reserach says it may do more harm than good.   
Today is a very bad day... and Im starting to have bad days more and more.  Right now Im dealing with almost unbearable pain in my arms and legs, feet and hands.  It feels like my bones are breaking.  My fatigue is over the top.  I can get up and move around for about 10 min, then its right back to bed to rest for an hour. 
Im crying as I type this, Im so frustrated and I hurt so badly.  What are some things that have helped all of you?  Are any others as sensitive to medications and supplements as I am?  What do you do for your severe pain that doesnt include pain meds?
Thank you so much!!!

Forum Moderator

Date Joined May 2005
Total Posts : 7673
   Posted 9/26/2011 9:41 AM (GMT -6)   
Many times our pain is coming from inflammation. Inflammation can be controlled by steroids such as Prednisone -- that is what many of us are on in addition to Plaquenil. Usually we also take a prescription for calcium-building to counteract the calcium-depletion. It really sounds like your Dr needs to help you find something that will address the inflammation.

Have you tried name-brand as well as generic (I think there is more than 1 generic made) Plaquenil? Maybe you can get different results from a different formulation.

Sorry the MTX & Imuran have not helped you -- the 3rd drug usually tried by most rhemuies if those don't work is Cellcept. In my case I had no reaction to Imuran (not good, not bad) but Cellcept put me into a kind of 'remission' - I never tried MTX.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Sep 2011
Total Posts : 33
   Posted 9/26/2011 4:51 PM (GMT -6)   
The Vitamin D thing is an issue! My dr flipped out at my 30. You are at a 9!!! Check with dr but mine put me on 5000 IU until blood levels rise up. I was b12 200 now with shots 900. So check that as well. Sorry about all of your family sickness. Stress may have something to do with the flare. I had a really bad flare after I lost my parents 18 months apart. Still working on recovering from this sickinterval.

Veteran Member

Date Joined Nov 2010
Total Posts : 877
   Posted 9/27/2011 2:24 PM (GMT -6)   
I am surprised that your doctor just "mentioned" the vitamin D level. The blood work would have red flagged this and the doctor should have immediately put you on D. The normal dose is one pill a week for 12 weeks and then recheck. It takes months before you will notice the benefits but you will notice them......alot of aches and pains and fatigue will go away once your body is getting enough vitamin D, iron, calcium, potassium, magnesium, B-12 and the list could go on.

I would ask the doctor again about the test results and also have the other ones checked if you havent already, especially the b-12 (most doctors dont automatically ask for this one)
Rheumatoid arthritis with secondary Sjogrens, Fibromyalgia, meniscus tears in left knee, Cancer survivor

New Member

Date Joined Sep 2011
Total Posts : 2
   Posted 9/28/2011 12:20 PM (GMT -6)   
Thank you all for your wisdom. My rheumy did give me 50000IU Vitamin D that made me sicker than sick last year. I couldnt move for days and the glands in my neck swelled up like golfballs. It was scary. We tried agan a couple of weeks later with a lower dose to be sure it wasnt something else causing the reaction, and it happened again on a smaller scale.I have been hesitant to take any since. My appt is 10-20, I will ask him about it again then. Im already taking a sublingual B12 supplement, so I think Im ok there. Im seriosly considering starting the Jill Harrington Lupus Recovery Diet, or maybe the Dr. Fuhrman diet. Since most traditional treatments are rejected by my immune system, Im thinking it wont hurt to try.

Thanks again, so much.
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