Lurking often, but first post

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Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 4/26/2008 10:56 PM (GMT -7)   
Hi everyone,
   
   I must admit that I have been lurking around your forum for the past week or so. I have always wanted to sign up to this site, you all seem so supportive of eachother, but for for some reason just could not get myself to do it...I guess I'm a little shy. Guess I've decided its time to take the first step, so to speak...
Anyhow, I've been taking oxycontin now for a little over a year.  It hasnt always worked great but my pain management Dr. is hesitant to icrease the doage which I guess is okay for now.  My pain is mostly in my abdomen area because of endometriosis. Recently my Doctors have started to think there may be something else going on because of the complaints I'm having, but with all the specialist hopping they've had me doing It's a wonder if I ever get a straight answere as to what that could be.  Not to mention I can never remember the names of the list of the conditions it could be, I've taken to going to my appointments with a notebook and pen just to try and get a few words written down!
Just thinking about it is exhausting and overwhelming. 
But my real question is, I've been reading some of the prior postings and came upon the one about the discontinue of generic Oxy.  Neither my PM or my pharmasist has mentioned this to me. I have always gotten the generic form but am concerned that I am eventually going to be switched and unable to afford it.  Does the discontinue include all dosages?
Or maybe the Dr is just giving me a placebo which is why I havent been able to get out of bed for the past 3 months!
Thanks all
Freya
 

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/26/2008 11:26 PM (GMT -7)   
Hi, Freya,
Welcome to the forum. Glad you decided to join us in discussion. I'm still on percocet, so I only know what I've read here about the oxycontin generic issue. It seems to be true, that the only generics people are still getting are the ones pharmacies have had in stock. But others who are on it can confirm. Since I may be joining you on oxycontin, it's likely to be a $ issue for me, too.

One thing I would say is that if you havne't been able to get out of bed for 3 months due to pain, then your meds. aren't managing the pain adequately. I really doubt it's a placebo; things like that probably happen rarely. But one problem with generics is that they can vary by manufacturer and inert ingredients can differ, so you may get the same med. but with actually either a little more or a little less than what is mandated for the brand name (generics can range from 80-120% of the main therapeutic agents).

Hopefully, others can give you more information, but I'd also ask your pharmacist as they may know about their stock and what's going on with the oxycontin.

Again, welcome!
PaLady

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 4/26/2008 11:52 PM (GMT -7)   
If you think you are being given a placibo. I just found a site a while ago that had a pill identifier . You just enter the code, number, color , or shapes and they will identifie it for you. It's used mainly for (pills you find without a label , or perhaps a pill you find in your kids room). Check it out. I just happened to run across it while checking my last pain meds. for side effects, since I misplaced the info. given by pharmacy. welcome june

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 4/26/2008 11:55 PM (GMT -7)   
Hi, Freya.

Just wanted to welcome you to the site. I'm fairly new to it as well and like you said I've found everyone to be incredibly supportive and informative. I was on oxy briefly just after the generic discontinue, but my pharmacy still had generic in stock, so it wasn't a problem, but I'm no longer on it so I can't help much. Sorry.

I am in your boat as far as under treated pain, though, and I just want to let you know I'll be thinking of you. I hope and pray you find some answers soon and that your doctors will find a way to get you some relief.

Ry

painKILLER
Regular Member


Date Joined Aug 2007
Total Posts : 69
   Posted 4/27/2008 12:10 AM (GMT -7)   
Freya,

I have not found relief from Oxycontin, but I was in the same boat as you. Really, many of us are in the same boat. For one reason or another, its difficult to pay for the med's we need. This includes some med's which don't offer a generic. For instance, I have great medical coverage through the University that I am at; I can go to any doctor at any time and have it paid for. However, I have absolutely no prescription coverage. So, I've had to "work within the system." I don't qualify for medicare or medicaid because I choose to keep working part time now, and because I want to work in the future. (Fortunately, my pain is under control pretty well :)) Now, I am on at pain meds, which is pretty much the norm in the pain management arena; a breakthrough med and a long acting medicine. My long acting med is Methadone, and that only costs me 38 dollars a month for 240 tablets. So, that doesn't really require any assistance. However, most people find that along with Methadone's extroardinary ability to relieve pain for a very long time, and its comprehensive pain relieving abilities, that it also blocks out most other opiates. Because of this, I can't take the normal short acting opiates for breakthrough pain because they just don't have any effect. So, I have to take a fentanyl preparation called Fentora. This is a brand name drug which can cost anywhere from 3000 to 8000 dollars per month out of pocket, and has no generic, and won't have a generic for another 13 years or so. Because I have absolutely no hope of paying for this out of pocket, and because I have no prescription coverage, I had to find an alternative. As it turns out, the majority of pharmaceutical companies offer patient assistance for their medicines. Now, the criteria for acceptance into the program varies. Some programs will require a copay, so just send you your medication for free. Anyways, in your case, I know for sure that Purdue Frederick, the maker of the brand name OxyContin, has a patient assistance program available. Because I am not a part of it, I don't know the details, but I do know that it is available on the Purdue's Website:
OxyContin Patient Assistance Program:
Info: Phone Number: 1-800-599-6070
The patient must have no insurance and have an income at or below 200% of the Federal Poverty Level. The patient must also be a US resident. There is also a co-pay of $25 for each prescription that must be sent in as a money order. Any patient who is denied assistance can appeal the decision by resending the application with a letter of explanation. This includes patients with insurance, patients in a gap, people who are eligible for Medicare Part D but did not enroll and patients who are in the Medicare Part D Donut Hole.
The doctor/doctor's office should call for an application. The application is faxed to the doctor's office. The completed application must be mailed bacThe doctor must fill out a section, sign the application and attach a prescription. The patient must fill out a section, sign the application and attach proof of income and proof of residency.
Up to a 30-day supply is sent to the patient's home. A new prescription is needed for each refill. Once a year a new application with financial documentation is needed
Purdue Frederick Patient Assistance Program
PO Box 66547
St Louis, MO 63166-6547

Hope This Helps!

Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 4/27/2008 1:28 AM (GMT -7)   
Thank you all for such a warm welcome! You have made my first post painless...no pun intended!
I'm very grateful for all the wonderful suggestions and will have to check them all out. I'm not surprised that getting assistance and help for persciptions seems like a huge hassel.
Sometimes I feel like the governments trained dog jumping through all there hoops of fire. Not to mention at the end you seem to rarely get a nice pat on the head or a treat. I would have to plan on an appeal but it could be worth it in the end. Give the suffering more to do...that seems to make sense.
Where are the people who can afford 8,000 a month for medicine, thats what I want to know.
I guess I will have to let it go for tonight as my pain has started rising again...I'll get angry at the politics of perscription pills tommorrow...
I hope everyone is having a good night and I look forward to getting to know everyone
Freya

Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 4/27/2008 4:46 PM (GMT -7)   
Welcome Freya! this is a good place to get info and freat support from caring ppl yeah
I am not my pain, it does not own me.


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 4/27/2008 4:57 PM (GMT -7)   
WOW, Ur taking oxycontin for endo? I have moderate to severe endo . I have had it removed 3x along w/ partial ovary due to endo attaching to organs, including my ovaries,and my bowels. If you have not considered surgery, you should probally look into it. Once endo is removed, it's "cured" until u continue to cycle and build up more (unless u used depo prevara as BC and did not cycle), i used depo for yrs to help preserve my "baby making organs", and it was the best thing i could have ever done. After having the laperscopic surgery to remove the endo, u have almost immediate relief (until it grows back).

good luck, i hope ur pain can be controlled soon!

Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 4/27/2008 5:49 PM (GMT -7)   
Welcome Freya this is a great site and I also am fairly new but the people here don't let you feel that way for long. You will find yourself right at home quickly. I suffered from endometriosis myself when I was 29 and the pain was unbearable so you have my best wishes to get help or better soon. In my case like you I was bedridden for nearly 6 months due to pain and bleeding and after several laporoscopies where they removed the endo I did feel ok... for awhile. Mine was bad and like  Shannon the darn stuff was spreading each time it came back.
 
In my case a total hysterectomy was the only sure cure and at that point in my life I had already had my daughter so more children wasn't an issue. Of course dr.s don't like doing hysterectomies on young women but eventually they decided to do it. Of course once they got in there apparently they finally got a good look at how aggresive it had become and had to remove everything. Well anywho it went fine and I recovered. I'm not suggesting in any way this is what your endo is doing just telling you my story.
 
The laporoscopy is an easy and minimaly evasive procedure and it should help you. Have any of your dr.s suggested doing one on you?I know that pain and it's awful and debilatating but best of all fixable in most cases. Let us know how you're doing and good luck with what ever road you choose Freya.
 
I was a lurker too but once I posted I soon found myself feeling right at home and I've learned a lot and I've vented a lot (which is ok by the way) and now I can't imagine not being able to come here. So welcome again.
 
                                              Toritoo cool

Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 4/27/2008 9:38 PM (GMT -7)   
Shannon and Toritoo
thank you both for your replies and suggestions. A year or so ago they did a laperscopy to check out if I had endo because I was experiencing extream pain and the worst menstral cycles that my body just seemed to be unable to handle without pain control. They discovered that the spots I had at the time were in places they couldnt remove it from. It doesnt make any sense although she has explained it numerous times to me and my husband, who I drag along with me thinking her answeres may change magically with someone else in the room. But she is also a DR based in alot of natural beliefs so it must be true if she is willing to put me on such a strong medicine(I was actually floored by her suggestion of it) She did set up a depovera shot for me which turned into a nightmare when my body couldnt handle the hormones. I guess I had always had something called SVT(which is a condition in the heart which is pretty harmless but it causes palpatations that can be frighning), but the depo seemed to bring these palpatations about more often othan I cared to experoence them so they took me off the depo which slowed the amount pf palpatations down. I guess I'm one of those people who cant handle hormones well. Anyhow thats why they choose to put me on such a strong pain drug. But as I understand it endometriosis can be very different for each person. Some experience no pain and have problems conceiving, while others experience chronic pain yet have easily concieved. They suspect I have had endometriosis even before the pain started because of many failed attempts at starting a family. I have thought about bringing up a possible hystorectomy to my dr, but I have always dreamed of having a child of my own. I guess I'm trying to hold out for as long as I can so that my husband and I can possibly try again if my gyno can eventually remove it and decrease my pain. But with all these new andominal symptoms now is not the time to focus on another attempt at removing the endometriosis, at least I dont think I could handle another surgery if there may be something more going on we dont know about yet. At this point I'm just going to wait it out until they find what is cause all the other strange symptoms, which I probably should post to see if anyone else may have ever had the same. I hate the medication but I hate the pain and what it does to my body more. But I know I wont throw in the towel until they tell me I cannot concieve on my own. And since my Dr knows about my desire to start a family I know she'll do whatever she can to make that happen.
I'm already glad that I have joined this special group and am surprised with the ease I was just able to write this post...I am never good at talking about myself but I may just have some built up vents in me I didnt know about!
Toritoo and shannon thank you again for sharing a bit of your story with me. Toritoo, I am so glad you were able to have the little angel you wanted before a hystorectomy had to be done. It helps me to feel a little less alone for having such a hard time with it.
I hope its okay for taking up so much space with this post, I guess I got carried away...I apologize if I make little sense and ramble on, my pain is pretty bad tonight and I have had to take some of my break through medication and have not slept well these past nights.
I hope everyone has had a beautiful weekend and feeling good through the night.
Many hugs to all of my new friends

shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 4/28/2008 5:24 AM (GMT -7)   
Freya, im glad u were able to get some things off your chest! Living w/ CP is something that takes alot of patience! lol

Try not to worry about children!!!! It CAN happen!!! I ttc my first child for 4yrs. I have history of chronic endo, chronic hemmoragic ovarian cysts, severe period pain, (w/ horrible pain, clots, passing tissue, ect) sorry TMI.... i have had the endo removed 3x via laperscopic surgery (not bad at all), i have had 2 seperate laperscopic surgeries for cyst removal causing ovarian tortion (OUCH), and one laperotomy (c-section cut) to remove large cysts that burst (they were hemmorgaic cysts, blood filled so it needed to be cleaned up in there..lol)

I concieved my first child after many early losses, tests, meds, ect....He is now 4 and is amazing!!! I then wanted another child, so we went back tot he fertility doc. I had taken to much clomid ttc my son, so we had to move to injectables/iui. We concieved on the 3rd round. During this time, i KNEW i had endo because of my painful cycles....i was also having pain when i ate/went to the bathroom (which i could not figure out)...during my csection, doc removed endo then...that is when he removed a ton that was attached to my bowels and had one part of my bowels pulled down and attached to another part of my bowels. He said it was a mess in there! My daughter is 11mo. old now, and i KNOW i have endo again based on my periods/pain....i will consider hysterectomy for sure in a few yrs, as the endo and cysts would stop!!!! I just want towait till the baby is older before im out of comission.

anyways, hang in there i hope that you will have answers soon....my ob/gyn told me that endo can NOT be dx or find severity unless you have surgery. maybe it is possible to remove some, rather than all????

ok, good luck! i hope u are atleast getting relief from ur pain! shannon

Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 4/28/2008 8:41 PM (GMT -7)   
Thank you Shannon I will defenitly take all the great suggestions to my next app.
I'm so glad you were able to have the family you wanted. I keep the faith that one day I will too be blessed with the child i want so badly. Nothing is ever impossible.
I did want to metion, which I always forget about for some reason that I to began having ovarien cysts rupturing sometimes 2 times a month. It happend to fall around the same time when my Dr began to suspect that I had endo. Its not the first time that I've heard someone else with endo say they started developing cysts. They have stopped since I took the depo for a few months, I think, its hard to tell sometimes whats happening with all the pain. But I just find that so interesting that they seem to be connected some way. I wonder if there is any research on that. Worth a look.
Be well and enjoy the night
Freya
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