New pain question? Help please!

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Regular Member

Date Joined Jan 2008
Total Posts : 30
   Posted 1/8/2008 8:58 PM (GMT -6)   
My joint pain has been really bad the last 6 weeks.  My lupus is flaring right now.  I have CNS lupus w/optic neuritis. I'm not able to take any NSAIDS for another 8 weeks due to a stomach full of ulcers. I am on 70mg of prednisone though so I would think the inflammation should go away soon. 
My hands have been the worst and today my right hand is burning, horribly.  It hurts on my knuckeles.  It burns non-stop!!  It's even worse if I touch the top of my hand.  Any idea what this could be, or what I can do to help it?  I started Cellcept this afternoon but I don't think it has anything to do with it. 
HELP! Please.
Lupus and Sjogrens Syndrome since 1995
Plaquenil 400 mg, Prednisone 70 mg, Imuran 200mg, Calan 40mg, Nexium 2x's a day, Ultram 50mg 4x's day

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 1/8/2008 9:05 PM (GMT -6)   
((((((((((mom of 2 girls)))))))))))

I hope someone else here can help you. Please do call your doc in the morning and update him/her. You sound really miserable and at that high amount of meds ????? I am so sorry sis. Some hot tea and a gentle hug for you!


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Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/8/2008 11:30 PM (GMT -6)   
Hi Mom,
Sorry you're in so much pain.  I know what that's like.  I think I know what this is.... Your skin hurts right?  Like when you touch your hands it's like touching burning skin?  Do you have fibromyalgia?  When my fibro is flaring I get that really painful burning skin feeling.  It's all over my body. I ache as well, like joint/muscle pain.  The more prednisone you're on, the worse you'll feel if you have fibro.  Fibro and prednisone don't mix.  You're on 70mg of pred which is a lot.  That will definitely flare up a bunch of fibro symptoms if you have the disorder.
If it is fibro, the only way to get rid of what you're feeling is to lower the prednisone.  But at that dose, it has to be slow and gradual.  Please talk to your rheumy about this as soon as you can.  I feel so badly for you that you are having to live with this.
No, the Cellcept takes about a month or so to "kick in", so it won't be that.
Please let us know how you're doing okay,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Regular Member

Date Joined Jan 2008
Total Posts : 30
   Posted 1/9/2008 2:00 PM (GMT -6)   
Yes Ginny, thats how it feels.  Like my skin is burning on my hands.  If I touch it, it's 10x's worse.  No one has ever said I have fibro before.  My prednisone was raised from 5 to 70 last Fri.  I can't back down on the prednisone yet, I'm in the middle of a CNS lupus flare.  I will give my dr a call and see what he has to say.
Lupus and Sjogrens Syndrome since 1995
Plaquenil 400 mg, Prednisone 70 mg, Imuran 200mg, Calan 40mg, Nexium 2x's a day, Ultram 50mg 4x's day

New Member

Date Joined Jan 2008
Total Posts : 6
   Posted 1/10/2008 12:19 PM (GMT -6)   

Hi Momof2girls,

I'm new here.  Looking for a Lupus forum/chat for myself, and happened to see your post.  If what you have is Fibromyalgia, ask your Doctor about Lyrica.  Lyrica is this new drug for Fibromyalgia.  In fact it is the only drug approved for Fibro.  Any, it works by dampening the nervous system response to pain.  I am taking it and I think it helps.  I have Lupus and Fibro.  My skin still hurts sometimes, but not as bad as you are experiencing.  Lyrica is expensive, so if that is an issue, ask about other similar drugs like Neurontin. 

I used to run a support group for Fibromyalgia before my Lupus diagnosis, so that is part of the reason that I am so full of imformation.  I promise I am not a drug company representative!

Best of luck with finding treatment for this and may you feel much better very soon!

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