Lupus and Pain

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Regular Member

Date Joined Nov 2007
Total Posts : 497
   Posted 7/18/2014 2:16 PM (GMT -6)   
For those of you who suffer from pain with your Lupus, have you found that sometimes pain meds and prednisone just don't knock it out completely? I am currently in a flare up and my hands/wrists hurt really bad. I am taking prednisone (5-10 mg, I don't think I can take more because I am also on a high dose of Azathioprine and I take Plaquenil), narcotics, and I will alternate with NSAIDS as my stomach can tolerate them. I'm sick of the narcotics and I'm sick of the prednisone (although I can't see getting away from this drug anytime soon). Is this the nature of Lupus that sometimes you just hurt and not much seems to really touch the pain at times?

Thanks all!

Regular Member

Date Joined May 2014
Total Posts : 184
   Posted 7/18/2014 3:41 PM (GMT -6)   
I'm in that boat as well. I'm currently using heavy narcotics (100 mg morph, 90 mg oxy) and the pain seems only to be amused by it and so I'm only getting marginal relief. I have not been getting any treatment to help resolve things on that end, but that's a different story ...

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 7/18/2014 4:30 PM (GMT -6)   
It seems that's the way of lupus. I've also developed fibromyalgia along with my lupus. Fibro is a rough pain too. It is always there and you can never fully be pain free. Do you have fibro too?
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! :))

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 7/19/2014 10:59 PM (GMT -6)   
I suffer with chronic severe pain 24/7 no matter what I do for it. I'm also always in a flare up it seems, I've tried the all of the various medications out there to treat lupus and NONE of them have worked for me.

Like Joy said Fibro produces huge amounts of severe pain. I also have RA, Osteoarthritis, pleurisy and percarditis all the time. So, I'm sure you can imagine the amount of pain I deal with on a daily basis. I totally understand how you feel with your pain.

I totally get you're frustrated with taking the steroids and plaquenil. I've been on steroids daily for over 14 years now. I've been told over and over again by my Doctor's that this is as good as I'm going to get. That I need to learn to live with it.

I cried for days after being told that, but they are right about it. Unless, I'm on 50mgs or more of steroids my pain is constant and NEVER leave me. Now, if I'm on those steroids at 50+mgs of steroids, my pain is almost totally gone. I can't live on large doses of prednisone, so I try other things to help manage my pain.

Have you thought about trying massages, acupuncture, Biofeedback, meditation, heat/ice, PT, and a Pain Therapist. If you've not tried any of those listed maybe you could at least try one or two and see if they help at all.

The pain we deal with I believe is just part of having lupus. I really hope that you find something that helps with your pain. So that you're happy with the level your at pain is at. Please keep positing and updating us so we know how you're doing.

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.

New Member

Date Joined Jul 2013
Total Posts : 15
   Posted 8/3/2014 5:13 AM (GMT -6)   
I was on 60 mg predisone, and narcotics and Plaquenil, during a bad flare. I was taken off the Plaquenil due to my vision and he brought me down to 15gm pred. a day.

During my flare, nothing took the pain away, I couldn't get out of bed. I took 6omg of oxycodone a day and 60mg of morphine. I know just take 5gm oxycodone 5 times a day. Yes the pain can be debilitating!

Post Edited (Sugaree67) : 8/3/2014 5:46:40 AM (GMT-6)

New Member

Date Joined Aug 2014
Total Posts : 2
   Posted 8/15/2014 11:16 AM (GMT -6)   
Unfortunately,the pain of Lupus seems inescapable. I also take Plaquinill, Prednisone ,Cymbalta,Norco,Duregisic patches,Adderall,Voltaren Gel and Acyclovir.😕
My 13 year old granddaughter just had blood work and it showed a very high level of inflammation. She has lived with my husband and myself since she was a baby,and every time I look at her I see so many similarities between her and me. She has pain and fatigue,as well as problems with sun exposure. As soon as I can pull myself out of my bed,I'm taking her for more extensive blood work. Please pray for us. The idea that she will suffer with the unpredictable , unrelenting monster that Lupus is, is devastating.

New Member

Date Joined Jul 2013
Total Posts : 15
   Posted 8/15/2014 12:00 PM (GMT -6)   
WOw she is just way to young to be going through this,my thoughts are with
you both!...offer suspost that's all you can do. this forum may help..:O)

New Member

Date Joined Aug 2014
Total Posts : 2
   Posted 8/15/2014 12:02 PM (GMT -6)   
Thank you Sugaree67!

Regular Member

Date Joined Jul 2012
Total Posts : 73
   Posted 8/24/2014 6:14 PM (GMT -6)   
Has any one of you tried Cellcept for the pain? I have been on it for a week and knock on wood it is working!! turn

Forum Moderator

Date Joined May 2005
Total Posts : 7720
   Posted 8/24/2014 6:53 PM (GMT -6)   
Ok, just for clarification. Cellcept is NOT a pain medication per se.

It does, however, affect Lupus. After 18 months on Cellcept, my flares quieted down almost to the point of disappearance. I hope it works as well for you.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Regular Member

Date Joined Jul 2012
Total Posts : 73
   Posted 8/26/2014 7:25 PM (GMT -6)   
Yep you are right cellcept is Not for pain I was wrong...I meant gabapentin

New Member

Date Joined Aug 2014
Total Posts : 4
   Posted 8/27/2014 10:20 PM (GMT -6)   
I take that for hot flashes
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