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Posted By : Melissa D. - 2/23/2017 4:40 PM
I have had immense joint pain for a couple of months now and can find no relief! I am on 5000mg Cellcept, 10 mg Arava daily and 400 mg Plaquenil and 10 mg prednisone to help control my lupus. For pain I am prescribed 15mg Oxycodone every 6 hrs as needed. Pain meds do nothing, my joints just burn, throb and shot with pain. I called my rheumy a couple of weeks ago because I was in so much pain and my joints were so swollen, he called in a medrol dose pack in hopes that would help calm things; it didn't do much.

I have an appointment on March 1st so I'm looking for new treatment ideas I can discuss with him because I would really like to regain some quality of my life again and be able to help around the house, do some of my hobbies, etc. Problem is my doctor has already told me I am just about out of options as far as lupus treatment is concerned. I have already tried Methrotrexate, Imuran, Cellcept, Arava, Benlysta, IVgG. Are there other medications out there that y'all are on or have tried? I really need some options and I have not heard of anything new coming out in the near future as we had hoped.

Thanks in advance.

Posted By : Lynnwood - 2/23/2017 9:10 PM
I'm not aware of any medications beyond those you have listed that you are either on or have tried.

I have had a higher dose of Prednisone than you - 20 mg daily - to address joint pain. The most bothersome joint pain I had felt like someone had poured battery acid into all the small joints of my feet and toes. The 20 mg was enough to control it.

Several of our members have doses of Prednisone much higher than 10 mg to help with the joint pain - I think some have had doses as high as 60 mg daily. Certainly not the optimum solution, but if you can use a higher dose temporarily to decrease joint inflammation it might be helpful.

I have recently begin to have joint pain again - aching and itching in the large joints and the burning pain in the small joints of my hands & fingers. I see the Dr in a couple of weeks - I'll try to remember to let you know if they offer me any medication-based remedies.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Melissa D. - 2/24/2017 7:47 AM
Thanks Lynnwood. I did up my prednisone for a week to 20 mg when this first started, then my doctor called in the dose pack. I didn't get any relief from either unfortunately. I guess I'll see what my doctor says next week. Good luck to you as well, hope you feel better.
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

Posted By : Butterflake - 2/25/2017 2:24 AM
Hi Melissa. I'm one of those folks who was on 60mg of prednisone, but that was strictly regulated by my rheumy. My parotid glands were inflamed and yep the prednisone worked.

Routinely I use presciptipn Voltaren topical gel for pain, but like all meds it doesn't help everyone. I also use prescription lidocaine patches at night that can be very effective walking around the house during the day. Epsom salts baths are nice, but I find the relief very temporary. I once told my internist that the best thing about physical therapy was the massage they gave. His reply was, "What's wrong with that?" So massage or PT might help. I'm having lots of pain now while I'm waiting for insurance to approve the narcotic Nucynta that I've taken for two years. I'm sure that I don't hurt as much as you do, but I can relate. I hope your doc gives you answers and helps your pain Dear. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : Melissa D. - 2/25/2017 8:24 AM
Hi Butterflake,

I may have to go up permanantely on my prednisone, that will be something I discuss with my rheumy. Like all of us I really don't want to, but I can't handle this pain day in and day out.

I have been prescribed Voltaren gel before, I may give that a try I have some here. I also have an appointment with my pain management doctor on Wednesday, I will ask him about other options such as the lidocaine patches, thank you for that suggestion.

I can handle pain, I just want to be able to function, right now I am down completely. My daughter in law is due to deliver my granddaughter May 9th and I have so many things I want to make. I ordered fabric for a quilt and right now there's no way I can sew. It just gets depressing as you all know when life is passing by and I'm on the sidelines watching.
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

Posted By : Bsime - 2/25/2017 1:53 PM
Your rheumy might try to dramatically increase your prednisone dose and then slowly taper it. Low doses are more maintenance doses when symptoms are under control but you need to really kick your immune system in the rear with higher doses first.

In my opinion pain meds are not the answer and can present other serious problems. The best way is to find the right suppression meds and pred is usually the best because it both suppresses the immune system and treats inflammation.

Hope you can get relief for your arthritic pain.

MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : Melissa D. - 2/25/2017 2:48 PM
I think you're right Bill, I have a feeling that is the road I am headed down. I also agree with you in terms of the pain medicine, it does nothing for arthritic pain. It actually prescribed for another issue I am having with my shoulder and neck, I am waiting to be approved for a nerve stimulator because I told my pain management doctor I did not want to continue to get injections and take this medication. While the pain medicine may help a bit with my shoulder and neck pain, it is not the answer and it does nothing for the pain I endure with my lupus.
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

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