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Posted 2/21/2008 1:44 AM (GMT 0)
I was recently put on Oxy Cr (debilitating lupus headdache) and I am a bit worried about taking this drug, but I know I need it. I am wondering if any of you have used it and was it effective? Also, could you easily stop taking it?

Thanks--

I am a 29 year old with SLE, Raynaud's, and I am non prenisone, aspirin, DHEA, oxycodone cr, and hydrocodone.

Posted 2/21/2008 1:54 AM (GMT 0)

Sorry...haven't had experience with that drug.

They treated my rebound headaches first with a high dose of prednisone.  When I went to the neuro, he put me on Topamax and Keppra (both anti-seizure meds).  Even tho the topamax got rid of the headaches, I went off of it because I had a LOT of bad side effects from it.  There are some people who swear by it, tho.

I can't take any of the migraine meds because I'm allergic to sulpha.  So - when I feel one of "those" headaches coming on, I take a Keppra (500 mg), and it usually takes three of them to kick it.

My advice is to make sure you read your patient handouts about the side effects if you go on it just to make sure you are informed.

~Kim

Posted 2/21/2008 2:36 AM (GMT 0)
I too am allergic to the sulfa group-must be why I was never prescribed any of the migraine drugs.
Posted 2/21/2008 6:48 PM (GMT 0)
Sulfa allergies are quite often found with lupus patients...most of us, in fact!
Posted 2/23/2008 2:36 AM (GMT 0)
Honestly if you want to mess up your life go for it. It ruined three years of my life and I have been off of it since October 2007 and I am still not the same person. Its addictive. Its a terrible awful drug that should be taken off the market. People have robbed so many pharmacies for this medication. BECAUSE Doctors overprescribe it and patients become addicted. The dose is upped.... Your more addicted. Hell yea you will feel good taking it.... But do you really want to be dependent on something like that for the rest of your life??? There are soooooo soooo sooo many other ways to treat headaches. I understand about having headaches.. But just know that there are other alternatives and it completely changed my life and I feel like I was in a coma for years... I am just trying to be normal again and deal with all of the problems that this caused me... Eventually they will stop making it. Its really really bad.. They dont just up and precribe oxycontin to people. You generally 99% of the time are already on a narcotic.. It stops working. Not strong enough. Doesnt touch the pain. Trust me I feel for you. I know how bad those headaches hurt.. But getting on this medication will be the worst decision you could of made.... 75% 80% of people.. that take it and other narcotics are addicted. Its not there fault but its an addictive terrible awfull medication. There are other ways to treat pain. Stay away from it.... talk to your doctor about your concerns... I think with what I went through I actually changed the way my doctor thinks. He stuck with me and I hated him for letting me become so hung up on it and he does feel partially responsible and I HOPE that the next patient he sees that maybe he will look for more sighns of addiction. The last thing a Lupus patient needs is to be addicted to something.. Be carefull.. If you choose to stay on it be aware that it is just as addictive as Heroin would be on someone. Withdrawls the same as Heroin... No I have never done Heroin. But I just know this because of having to get through treatment to get off the crap.. Be careful. Headaches are horrible but there are other ways...
Posted 2/23/2008 3:26 AM (GMT 0)

Ishy...

What doc is prescribing this for you?  Are you seeing a neurologist?

Also - your profile says you are "non-prednisone".  Why is that?  What does that mean?

I did a lot of research about headaches when I was having them.  I would get pain in my temple that felt like someone was pounding a railroad spike in my temple.  It would last for a few days... no relief.  When it would finally subside - it would only be for like a day.  Anyway, in doing my research, I found that a lupus headache mimics a migraine - but the only thing that will treat it is high doses of prednisone.  They put me on 30 mg for about three days, then 25, then 20.  Which did get rid of it.

To me, oxy is very scary.  I have a friend who is a nurse.  She just had a liver transplant.  They put her on it for obvious reasons - but she refuses to stay on it

I have to agree with Lynnwood...I would research some alternatives.

~Kim

Posted 2/23/2008 4:55 AM (GMT 0)
I just feel sick and passionate about this at the same time. Right now I am just strickly dealing with straight up pain every day. WHY? This is because I was completely dependent on OXYCONTIN! Its so scary. Dont go down that road.. Email me... call me... I am not embarressed or feel ashamed about what happend to me. I was in HORRIBLE pain however..... Its just addictive. You CANNOT stop taking it. It is NOT a random drug. I really hope you do not read this and feel like I am angry at you. I feel bad for you. I have Lupus too... I have pain too... I have had blood clots in my brain.. throwing up from headaches and being so sick I thought I was going to dye! I had headaches because of a blood disorder..... I dont know Ishy, I have been in your shoes. Some people truly do need narcotics for pain. Chronic pain. I understand that. I am not an idiot.. I have had Lupus... for four years now... diagnosed atleast.. I am sick all the time.. I have insomnia .. I have horrible headaches.. BUT from the beginning of my diagnoisis because of my pain I was IMMEDIATLY put on NARCOTICS. Worst thing ever,, among all the other meds I have to take to make my body function.. I have Kidney disease from Lupus... I stopped taking care of myself after a year and a half on Ocxycontin... I use to come to this site ALL THE TIME. I allienated myself from everyone and everything. The people on this board are so compassionate and want to help and in the very beginning It was great I had support but I never really told anyone how bad it got. Its bad... wait untill the pharmacist treats u like crap and doesnt want to fill your Rx and the receptionists at your doctors office treat you like a drug addict.. This happened to me before I realized how addicted I was. ...

Have you had a MRI by a Neurologist about your headaches? What were the results Isha? I really want to help you. Honestly. BIG HIG FOR YOU! I am so seriouse..... Please respond...
Posted 2/24/2008 4:23 AM (GMT 0)
I am slowly getting off oxycontin after being on it for 6-7 years. At first it kept me out of being in a wheel chair due to my pherial neuropathy in both ankles & helped my 24/7 chronic pain every where else. It never helped with my migraines, just the nerve damage in my body. I'm grateful I do have dr's and a great pharmasist that has never treated me like a drug addict, they treat me as a chronic pain patient in massive pain. For migraines I take imitrex and phenagren My body has been use to it for the past year and I have asked my pain doctor to change it to something else, something not so strong. He wants me to wait a few months so in the past 2-3 weeks i've gone from 5 doses a day to 3. That part was ok since i went from every six hours to a dose every 8. The remailing 3 will be the hard part. Getting off oxycontin is very, very hard and getting off the last three, well the withdrawls will be painful and I wont do it without supervision from my pain doctor. I'd much rather get off it then put a strong drug in my body that isnt helping. I understand you wanting to take it, it did help me get part of my life back for a few years. My goal is to only have medications in my body that will treat my disorders. I know it will take time, for me I will need help with the chronic pain through the process. My lupus dr also wants the pain treated but we are hoping by the end of the year I can use pain medications but not ones like oxycontin. I personally never felt high off it, it went directly to the pain but as many people here have already said, it's very additive, my mind isnt but my body is. & I've been sober for 19 years...I wish you well which either choice you make.
Posted 3/15/2008 8:54 AM (GMT 0)
I am sorry for people that have had horrible problems with it but I have been taking it and am not addicted at all. Some days I would not have made it to the hospital if it wasnt for that drug. I wouldnt have been able to pick up my son from school.

So if you really need it, and find it helps substantially. go for it.

I would not have been able to sit up and turn on my lab top today if it wasnt for oxy.

However if you know you or you family history has addiction running rampet--maybe its not for you.
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