Lupus and adequate pain control

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New Member

Date Joined May 2007
Total Posts : 4
   Posted 5/28/2007 7:14 AM (GMT -6)   
How do people get their doctors to give adequate pain control? I have gone to my present rheumatologist for approximately 12 years, at first he did give me adequate pain control, but as time has pasted he seems to give inadequate pain control, I am going to see a new rheumatologist on May 31st because I want a second opinion. I just can't believe that plaquenil is the only medication for Lupus. At first when I was taking plaquenil I felt it was helping but after taking it for 14 years now I feel it is just not working any longer and the only thing my present rheumatologist will give for pain control in Ultram 3 times a day. It just does not cut the pain any longer. I have Systemic Lupus, Osteoarthritis and Fibromyalgia.

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 5/28/2007 8:20 AM (GMT -6)   
I think that a lot of us struggle with getting adequate pain control. Some of the time my prednisone and tramadol help control the pain so it is manageable, but I need something extra on the bad days. I can't take any NSAIDs because of allergies and past kidney issues, so originally my pcp gave me some low dose hydrocodone for the bad days which has worked very well for me, and she always gave me plenty because she knew I wouldn't abuse them. My pcp quit recently so I asked my rheumy for some hydrocodone and he was very stingy with them - he seems hesitant to prescribe them, like a lot of doctors are.

I'm glad you are seeing another rheumy, who I hope will help you more with your treatment and try to give you some relief from you pain. I haven't had a pain free day since I've been sick, and the pain can vary from mild to severe. I do think that people deserve the right to have their pain controlled as much as possible. Thankfully you don't have long to wait to see the new rheumy. I think it would be very helpful to be very open and honest with the new rheumy about how sick you have been feeling and how much pain you are in and that your current treatment no longer seems to be working.

Hang in there and I'll be interested to see what your new rheumy has to say.

Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 5/29/2007 10:59 PM (GMT -6)   
Hi lupi fib--
Going through the same problem. I have ai disease, fibro, bad osteoarthritis throughout spine with cervical fusion/foramenoty plate and four screws, two other neck surgeries, constant neck pain that is untreatable by surgery, and now a constant bad bladder pain and urgency from trigonitis/poss IC and right now vicodin is helping me. I was on fentanyl in the past and the problem with strong narcotics is the hassle both the doctor and the patient have to go through to get them. The way it's set up, if you are healthy enough to go through what you have to to chase down a script every month exactly at the right time, and physically carry it to the pharmacy, you probably don't need it. Unless, you have someone to do all that. I take ultram 100mg three times a day and I have for over 5 years now and I know that I have to keep it in my system all the time for it to work. they've tried to give me all kinds of stuff but I develop allergies and cant tolerate any of them. I have a bad liver. Some people take methadone and it works well, but I'm very allergic to it, unfortunately, but pain mgmt does push that stuff. I think methadone should be taken off the mkt because methadone addiction can be fatal and is very much harder to get off of than even heroin or morphine. The fentanyl pain patch worked well, but if you are completely out of pain, you can't tell if you have an infection or other serious problem and I got very sick and didn't know it until I went off the fentanyl. I stopped it myself because it was too much of a hassle. Sometimes I wish I didn't, especially now, but I found myself getting depressed on it and not living my life, also had nasty time getting off after only a short time (year). The options aren't good in this country. I take soma at night and a low dose klonopin for restless legs and am addicted to klonopin, but will never likely go off it. These medicines help make the others stronger. Some people like topamax and nambutone, I'm allergie to them, and I've taken tizanidine with limited success, I rarely take it, the soma works better. I get a limited amount of strong vicodin, 20 a month, sometimes under special circumstances I get something better. Because of your osteoarthritis, I would think a pain management doctor might be more willing to help you get relief. I had to talk to my doc about pain and maybe will have to again. The pain patch was good because they knew I wasn't abusing it. It was just a hassle because you have to have a paper prescription and most pharmacies will not fill then next script unless it is three days or less from a month from the last one. and if a patch falls off or doesn't work, you have problems, because there are NO extras to account for this and it is very addicting. Doctors also like to save the strong stuff for emergencies too. I had a colonoscopy and the anesthesia did not work at all, none of the demorol worked at all. so it really hurt. Maybe you need a break from the ultram so it starts working again. Maybe they can give you something better for a while and then put you back on. I have learned ultram does not work at all for certain types of pain like headaches and my bladder pain.

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!

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