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New Member

Date Joined Nov 2013
Total Posts : 1
   Posted 11/23/2013 2:50 AM (GMT -6)   
Hi I am 39 and was diagnosed with SLE Lupus in 2006 I have problems with trying to get pain relief. Recently I was given nucynta 75mg and I was wondering if this will help me with my chronic pain or not. I have been having back injections since August 2013 to my last one November 14. I was on dilaudid 4mg but it made me have horrible smelling burps and belches. It irritated my stomach which I have several GI problems due to having to take high doses of prednisone after I was diagnosed because I had no insurance and it was affordable where plaquenil was not affordable. I am just so scared I will not have any relief and I will again be miserable. I have not even been able to sleep in my bed since August I have been having to sleep in a chair due to my back. I have been on davorcet, hydrocodone, percocet, and dilaudid for pain relief but because I have to take them so long I have gotten immune to them and they don't work for my pain. So, has anyone else had this medication and does it work? I also take Effexor 150mg in the am and 75 in the pm and I also take xanax 2mg, plaquenil 400mg, synthroid 150mcg, elavil 10mg, ambien 10mg, and I am sure I am forgetting something but can anyone help me with knowing if this is going to help me?

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 11/23/2013 10:07 AM (GMT -6)   
Welcome to our forum lauralou39! I've been taking Nucynta 75 mg for a couple of years. Mine is prescribed every six hours, but luckily I usually only need it once a day. Of course there are times I need every pill I can take. I allergic to dilaudid and fentynal. I often have an interesting side effect from Nucynta which is more energy so I try not to take it at night. I take Tylenol Arthritis and prescription Tramadol (non-narcotic) together every day. There is a prescription med called Ultracet that is Tramadol, Tylenol combined. I get better relief taking them together but not Ultracet. I also have Voltaren gel (prescription pain med) that my hubby rubs into my back and it does a great job, especially at night. I also often rub it into my neck.
I'm so sorry that you are so limited on the meds you can take. I thought that plaquenil (hydroxychloroquin) was cheap. Since it's the drug of choice for lupies to start with I think it's important you take it.  I hope you will get good insurance with the Healthcare bill.
For depression I took Prozac for years, but I finally I to stop it because it quit working. My psychiatrist said it's commonly called "the Prozac poop out." He now has me on Cymbalta not only for depression, but also to help my pain. I haven't noticed any difference in my pain level.
I completely understand your fear. Our pain is an awful part of lupus and when you can no longer take many pain meds it's a scary thing, but please try not to worry. For most lupies our meds are trial and error so please don't worry. You may have difficulty stopping your narcotics, but there are many meds for pain meds that are both narcotic and non-narcotic. It's just a matter of finding the correct combination for you. Once again welcome and please let us know how you're doing okay? Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Sjogren's Moderator

Veteran Member

Date Joined May 2012
Total Posts : 828
   Posted 11/23/2013 12:35 PM (GMT -6)   
All of the meds you listed seem to be the short acting ones. Have you tried any of the longer acting extended release pain meds?

Did the hydrocodone and oxycodone work well for you when you initially started using them?

A lot of times, moving to the long-acting form of a medication (even if you've become tolerate to the short acting formulation) can help, and when combined with a short acting med for break through pain, it can offer good steady relief.

Nucynta ER (Nucynta), MS Contin (Morphine), Exalgo (Dilaudid), Oxycontin (Oxycodone), Fentanyl Patch, Zohydro (Hydrocodone), Butrans Patch, and Tramadol ER (tramadol) are just some of the long acting medications I can think of off the top of my head, that can be combined with a short acting pain medication to help. It might be worth mentioning to your doc next time you go :)

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 11/23/2013 4:20 PM (GMT -6)   
Hi lauralou39;

Welcome to the lupus forum, I'm sorry that you have to suffer with this disease and the chronic pain that comes with it. It's so hard to deal with chronic pain, I know as I suffer with the stuff 24/7. I have to say I haven't tried this drug for pain relief.

I do use dilaudid 2mg tabs for break thru pain. I'm on a pretty strong long acting pain medication that I take 3 times a day. I've been on chronic pain medications for a very long time. Unfortunately with long term use comes a high tolerance level. It's just a part of how pain medications work.

Some people try to cut back on their pain medication or go off to try to reset their pain receptors. If they can do that they find once starting a medication back they might not need as much of it. LexiRae mentioned a good suggestion, that you may need a long acting medication.

I know between my RA/Lupus/Fibro/Leukemia I couldn't tolerate the amount of pain that I have w/o a long acting pain medication. I have to take more of the break thru medications than I like. However, the long acting medication I'm taking causes issues with my heart and i can't go above 30mg daily of it. It was working great when I was at 60mg, but then my heart started having issues and it had to be cut.

The one thing you need to remember too, is that with chronic pain we will NEVER be 100% pain free. It's all about managing the level of pain. If you can tolerate things at a 3 then that's what you shoot for. I don't believe there's a chronic pain patient out there that would say their medications makes them totally pain free.

Good luck with your medication and if it doesn't work for you, consider asking your Doctor for something that will last longer. Looking forward to getting to know you better and please come back and let us know how you're doing.

DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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