Previous Thread
Next Thread
Print Thread
Page 3 of 5 1 2 3 4 5
Re: Tell me about oxycodone
tntlamb #250269 03/29/13 07:15 PM
Joined: May 2008
Posts: 13,279
J
Registered Visitor
Offline
Registered Visitor
J
Joined: May 2008
Posts: 13,279
Originally Posted By: tntlamb
Now we are dealing with Undifferentiated SpA. Some actually do go on to develop a known disease, but many do not. Yet many want to be treated as if they do.

Axial SpA IS a "known disease." So yes, I want treatment.

Quote:
The ineffectiveness of treatment for these folks makes treatment for those of us who have clearly defined and actual disease process difficult at time.

How does a drug's failure to help me affect YOUR treatment - especially since you seem to think I don't have a real disease anyway? Do those of us who don't meet the Modified New York criteria not deserve treatment?

Quote:
I'm not sure what "success rate" is necessary to consider a treatment, but I'm thinking one in a thousand when I'm in the "chair" is pretty good odds.

That is why we need evidence, and comparative effectiveness. If everybody tried everything with a 0.1% chance of working we'd spend our entire GDP on medical treatment, most of it for naught.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Tell me about oxycodone
#250270 03/29/13 07:17 PM
Joined: Feb 2004
Posts: 1,269
R
Registered Visitor
Offline
Registered Visitor
R
Joined: Feb 2004
Posts: 1,269
TNT,

Just so you know, I have a positive dx of Ankylosing Spondylitis, and have had it since my late teens (I am 46 now). My rheumy says I have the worst case she has ever seen in someone my age, and suggested I take the tnf-a's (which I absolutely refuse to even try, as I know 3 people who have tried 2 different ones, enbrel and Remicade - all 3 now have AS AND Lymphomas. Those drugs are damn dangerous in my opinion, and have NOT been clinically tried enough for use in human beings. Please let's not start a huge debate about this, It's just MY OPINION, ok? I understand that many people say these drugs have saved their lives, and that is great. I just hope they live long enough to justify the potential dangers involved in shutting off their immune systems.) Anyway, I just figure that this disease cannot be cured (yet!) and for now, I am just going to take the palliative care route (treat the symptoms, so I can live a more productive and happy life) which has worked wonders for me. Before I started on the opiates, my life was pure misery. I could do NOTHING but lie in bed, crying out in pain when I awoke every morning, and literally crying myself to sleep every night from the pain. That is NOT living. I would beg God every night to take my life, so I would not suffer anymore, or cause those who love me to suffer, seeing ME suffer the way I was. The opiates SAVED MY LIFE. Think what you will about them, I am a huge proponent of opoid medications, and will continue to be one until something safer comes along. Just so you know, I worked with my rheumy for 5 years, trying EVERY DMARD out there, and finally she just suggested that if I was not going to go the anti-tnf/a route, then pain management was the only thing that was going to make my life liveable again.

Ok, 'nuff said!

Peace, and Freedom from Pain!
Robster



Always remember, E=mc2 is a Localized phenomenon. Oh, and never forget where your towel is.
Re: Tell me about oxycodone
#250272 03/29/13 07:30 PM
Joined: May 2008
Posts: 13,279
J
Registered Visitor
Offline
Registered Visitor
J
Joined: May 2008
Posts: 13,279
Originally Posted By: tntlamb
Targin CR is basically generic oxycontin. BUT it has naloxone added to prevent constipation.

FYI to others who read this with interest - it is approved in Australia, so Fitzroy can look into it, and in a few European countries. Unfortunately it's not FDA approved and may not be anytime soon - http://www.ncbi.nlm.nih.gov/pubmed/23534906 - but docs can prescribe naloxone with an opiate if necessary.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Tell me about oxycodone
#250273 03/29/13 07:37 PM
Joined: Jul 2011
Posts: 1,504
T
Registered Visitor
Offline
Registered Visitor
T
Joined: Jul 2011
Posts: 1,504
Hold on there buckaroo. I wouldn't disagree with you Rob (and in fact didn't) that's why the pump makes sense. Given the level of oral drugs you need to take for relief the adjustment may be difficult at first. As I said one guy I know taper first and it went well, the other didn't and it didn't go so well. BOTH would have prefered a long trial prior to implant so as to know what to expect. Both still have to top it off from time to time.

The use of opiates is a commitment that comes with some known risks and difficulties that one needs to be prepared for. That's all that has been said. There is NO DOUBT some need them, you amongst them.

Re: Tell me about oxycodone
Rob H #250274 03/29/13 07:54 PM
Joined: May 2008
Posts: 13,279
J
Registered Visitor
Offline
Registered Visitor
J
Joined: May 2008
Posts: 13,279
Originally Posted By: Rob H
I understand that many people say these drugs have saved their lives, and that is great. I just hope they live long enough to justify the potential dangers involved in shutting off their immune systems.

I know you mean well, Rob, but what you said sounded like:
"Some people erroneously believe the anti-TNFs have helped them. The truth is that if the drugs don't kill them first, their immune system soon won't work anymore, so they'll be dead anyway."

I am very sorry to hear about your friends' illnesses and suffering. I can understand why it would make you feel extremely wary of anti-TNFs. I might feel the same in your shoes! But please consider that others here bring personal experiences to the table, are intelligent, and think very hard about the pros and cons of their treatment options. To hear those thoughtful decisions dismissed by comments like yours can be very hurtful.

You see, my perspective is quite different from yours. My 11.5 year old daughter has Crohn's Disease. She had blood in her diapers in her breastfed infancy and was diagnosed just after her 3rd birthday. After more than 5 years of reading and research, trials of other meds, careful consideration, and discussions with specialists (her GI is one of the nation's experts on pediatric IBD), the potential dangers of Remicade certainly did (and do) seem justified in the face of the treatment-refractory Crohn's disease present for those 5 years throughout my then-8-year-old daughter's entire GI tract.

Three years after that decision and some 20 Remicade infusions later, her Crohn's is in a long remission, and she is enjoying robust good health. Her immune system is as good as ever at fighting off the usual childhood bugs (anti-TNFs don't "shut off" the immune system.) Who knows what surgery and other suffering she'd have had to endure if that treatment had not been available to her. Others make different choices that are right for them, but for us, this was the right one. I would never say it is the thing for everyone or that it is without risks, but we are so fortunate that Remicade is available and that it worked for Lucy.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Tell me about oxycodone
#250275 03/29/13 08:01 PM
Joined: Jul 2011
Posts: 1,504
T
Registered Visitor
Offline
Registered Visitor
T
Joined: Jul 2011
Posts: 1,504
I said Jen, that undifferentiated SpA is where Fibro was a number of years ago ie an unknown etiology. Sometimes it becomes a more defined disease, sometimes not. We made progress with fibro, hpefully we will with uSpA. Its not fair to compare it to actual AS especially with those having actual anklylosis. Already they are breaking it down further.

If its an approved treatment, then numbers matter not. You keep refering to "average" but dis any treatment out of 1 deviation, now its become "significant minority"

Fortunatly in the US we stll are able make our own decisions despite the attempts of mid-managers, practice managers, and insurance companies to do otherwise.

One of the decisions is the use of opiates. The evidence is taking us places we shouldn't be going. Anybody notice a difference in their vicodin? Anyone have to sign a "contract" to get what they used too? You made an unwarrented rant on a member, but yet all she did was refer to the "evidence" that is well known about the use of Narcos and confirmed that yes it did happen to her.

I could give a rats patut about the Modifyed NY criteria, I'm glad you can treatment if you don't meet it (there are parts of the world where you wouldn't) But is a failure of a treatment with for someone who doesn't meet the criteria the same as for someone who does???

What if that treatment were narcos??

But the fact is based on EVIDENCE NO you shouldn't get treatment. There isn't enough evidence to suggest a course of treatment for uSpA. In fact even the sponsor of this site admits many physiancs don't recognize uSpA as a "disease." No extensive studies hardly anything at all regarding treatment. (I don't believe that BTW)

Last edited by tntlamb; 03/29/13 08:15 PM.
Re: Tell me about oxycodone
JenInCincy #250276 03/29/13 08:04 PM
Joined: Feb 2004
Posts: 1,269
R
Registered Visitor
Offline
Registered Visitor
R
Joined: Feb 2004
Posts: 1,269
grin

You crack me up! I love the way you took that guy's (rather condescending) post apart and replied to each part of it, exactly the parts I took issue with, with exactly what I was thinking at the time I read it. Nice one. No offense to the previous poster - I just find things funny sometimes, and like it when people call somebody out for something I find funny, also. That's all.

Robster



Always remember, E=mc2 is a Localized phenomenon. Oh, and never forget where your towel is.
Re: Tell me about oxycodone
#250277 03/29/13 08:18 PM
Joined: Feb 2004
Posts: 1,269
R
Registered Visitor
Offline
Registered Visitor
R
Joined: Feb 2004
Posts: 1,269
Jen,
I apologize if I offended you with my statement about tnf/a's, I certainly think that some people use them with great effects, I am just scared to death of them, and was not trying to say that the people who use them are ignorant, I can see where the way I phrased that may have made you think that was what I meant. It was not my intention, so I apologize if you took it that way. Those things are not safe, IN MY OPINION, that's all I was saying. And somebody called me Buckaroo! I love that movie! (Buckaroo Banzai...) Made me laugh! I am going to have to watch that again. John Lithgow as the insane alien Jon Bigbooty is absolutely classic!

Peace, freedom from pain, and infighting. I'm bowing out now so nobody else misunderstands me. I love you all, and I want us all to get along, and find the best solution to our pain. Good luck to the OP, and I hope I have been able to help him somewhat, to the rest of you, I will see ya round the boards!

Robster



Always remember, E=mc2 is a Localized phenomenon. Oh, and never forget where your towel is.
Re: Tell me about oxycodone
#250278 03/29/13 08:23 PM
Joined: May 2008
Posts: 13,279
J
Registered Visitor
Offline
Registered Visitor
J
Joined: May 2008
Posts: 13,279
Sorry if I misinterpreted, TNT. It was confusing.

Sure, we in the U.S. can make our own treatment decisions - so long as our managing & prescribing doc is on board .... but insurance companies can and do interfere, some more than others, as we've seen with folks here on the forums.

I know you intend to empower & advocate for others. But talking about "actual AS" and how nonradiographic SpA "doesn't compare" is hurtful, demeaning, and unnecessary. It's not a hierarchy nor a contest. We ALL have spondylitis. Axial SpA is a legitimate condition requiring treatment, with or without the presence of syndesmophytes and/or fusion. Spinal fusion is terrible but is not the only disease outcome nor the disease endpoint. ALL of us have pain and functional issues; controlling those symptoms by whatever means we can is all we can do, since there is no other known direct means by which to avoid, slow, or stop fusion.

I have a request: if you are talking about opiates/opioids, please use the proper term. The term "Narcos" is derisive (it is used in reference to drug addicts and illegal drug traffickers/organized crime) as well as inaccurate since "narcotic" is a general term, not a specific description of a single class of drugs. Anything that makes you sleepy can be called a "narcotic." Many of us don't even get drowsy when taking opiates - they just alleviate our pain.

Fitz, sorry this got so far off topic. I hope the experiences people have shared has helped you figure out what to do. I hope that whatever you choose is helpful for you!!


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Tell me about oxycodone
Rob H #250279 03/29/13 08:30 PM
Joined: May 2008
Posts: 13,279
J
Registered Visitor
Offline
Registered Visitor
J
Joined: May 2008
Posts: 13,279
Thanks Rob. Apology accepted. You seem like a good guy, buckaroo, so I didn't think you intended to hurt anyone's feelings. Another member here is very clear about her refusal to ever take the anti-TNFs but her feelings are personal as mine are; she is a dear friend and neither of us would ever challenge the other's choices. Even though I know she is wrong wink

But seriously - you are entitled to your feelings, and having different perspectives adds value and richness to the discussion. I don't want to squelch that in you or anyone.

Take 'er easy, dude. smile


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Page 3 of 5 1 2 3 4 5

Moderated by  ElinAslanyan 

Link Copied to Clipboard
Powered by UBB.threads™ PHP Forum Software 7.7.4