Undertreated Pain?

*Also, what do you use to treat severe lupus headache?

Carol,

Thanks so much for replying. I think being in a "group" will do me good.

I did tell my rhuemy that it wasn't helping, and he said he'd have to put me on super addictive meds since the hydrocodone 5/500 wasn't working. He then said I should just battle through it with the 5/500's. I agreed in part because I don't want to become physically dependant on anything.

When I talked with my psych and told him everything, he said there is a stronger version of hydro, called norco, which is 10/325, which allows you to use 2 at a time for severe pain. My rhuemy said that the 5/500's were the strongest hydrocodone meds availaibale. My psych said this was not so. I wonder why my rhuemy would not know that?

Since seeing the psych, I now have norco, and sometimes it isn't effective either. I do have to take 2 for it to work. I also start prednisone immediately when this happens. I have done a lot of research, and apparently the lupus headache can occur even when disease activity is low....odd, eh? I would think otherwise. I was on plaquenil for months and stopped because of side effects. I prefer prednisone.

I do notice an increase in headache when my Raynaud's is worse...

I have: SLE, Raynaud's, Livido Reticularis, joint pain and headache, rashes, pleurisy, heart palp.

Meds: Fish Oil, DHEA, prednsione 10 mg. Norco, aspirin, vicodin 5/500, ssri

Welcome to the forum Ishy. Most Lupans take plaquenil in addition to other anti-inflams which may include prednisone and/or OTC or RX anti-inflams. The plaq is important if you can take it. Some members here have found that even though they can't take the generic plaquenil, they do fine with the name brand. Something in the fillers. I wonder if your doc could suggest an additional anti-inflam as this would help relief any inflamation/swelling that may be a good part of your headache. Some of us also get extra relief by adding an antihistamine to the mix (make sure its ok with your doctor). For some reason that can increase the effectiveness of even the OTC meds like Ibuprofen. Some anti-depression meds also help combat pain. Cymbalta is a good example. You won't feel an immediate affect. The benefit is cumulative (as with Plaquenil) and it take a while to build up in your system. *sigh* So sorry you are having so much trouble. Keep working on the right combination. As long as the rheumy is working with you, I wouldn't make a switch. But if he is ignoring your pain, its time for a new doctor. Welcome to the forum. YES, it is a great help being part of this group!! Blessings!

Thanks for all your responses--

To Audrey,

What kind of meds do you get from your doctor? Is it along the same lines as Norco? Are pain clinics effective? Do you find that (some) Docs are scared to treat the pain? I think you cannot quantify SLE pain as easily as you can cancer pain.....thus the undertreatment?

Ishy

Ishy, yes, I do believe some doctors fear treating pain. It is so hard for them to really know what you are feeling. And, yes, cancer seems to be a more accepted cause of pain. My family doctor has me on methadone for my pain management. This older drug was used mostly for heroin addicts - I think, or something like that - but it is an excellent pain medication for chronic pain sufferers. The methadone does not make me "loopy" and I can function in my career and in life while benefitting from the pain relief. My family doc says he has no problem keeping me on the methadone even until I am in my nineties. I certainly hope I don't need to take it that long, but, who knows? Maybe something better will be invented by then!

I had much success from the U of M Pain clinic when I first had my major kidney stone episodes. This was way before lupus was even considered for me. They had me on elevil (sp?) for about a year and this helped me immensely.

Thanks. I should see a neurologist. I will ask for a referral. I think mentioning Lupus at all scares most Docs to death. My (old) GP told me he' d rather have R.A or AIDS than Lupus. How rude!

I think it just highlights how insensitive some physicians can be about SLE...or maybe their lack of knowledge about the disease.

I know EXACTLY what you are going thru. For about two month straight, I had dibilitating headaches - so much so I called the rheumy and said - if you don't make them stop - I'm going to put a bullet in my head. He sent me to my PCP. The PCP upped my prednisone to 30 mg / day - which took the edge off - but didn't make it go away completely. Went back to the rheumy and he sent me to a neurologist because he was afraid I had brain involvement with the lupus. Turns out the neurologist is the best thing that happened to me! The neurologist took one look at my list of medications and said: What if I told you one of the medications you are taking are causing your headaches? Since I didn't have any other explanation - I had to believe him. Turns out, it was the darvocet the rheumy had put me on to try to help get rid of joint pain. The neuro told me if you have migraines - you should never take a narcotic - they cause rebound headaches - which is what I was having. The neurologist said no more darvocet and no more fiorinal (which is what I had taken previously for migraines). He put me on 1500 mg / day of Keppra for 5 days (which is an anti-seizure med) and also started me on Topamax. I've not had a headache since. The topamax works to make you get less headaches. It won't stop one if one starts however. There are other medications for that.