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Lucia_Delacroix
Regular Member


Date Joined Aug 2007
Total Posts : 59
   Posted 7/20/2008 4:35 AM (GMT -7)   
I take Kadian 50 mg and Norco 10 mg. The Kadian help somewhat, but the Norco doesn't really help for breakthrough pain. I feel I need something stronger for breakthrough pain. I am wondering if Actiq would work for breakthrough pain as it is a fast acting medication (or so I thought). I want to approach my PM doc (I see him Tuesday) and ask him if Actiq would help me with the breakthrough pain, but I don't want him to think I'm drug-seeking. I just want relief from the pain. From what I understand, Actiq are fentanyl lollipops, right? Therefore they would kick in much faster and bring more pain relief than Norco would. Any advice would be much appreciated!

Thanks in advance!
Born with hip dysplasia in left hip, 2 surgeries to fix it when I was a very small toddler.

Also, 2 injured discs in lower back at L3-L4 and at L4-L5.

I also have Fibromyaglia as well.

Meds:
Zyprexa 7.5 mg
Wellbutrin XL 150 mg
Klonopin .50 to 1 mg as needed throughout the day for panic attacks
Norco 10/325 mg as needed for breakthrough pain
Baclofen 10 mg 3x a day
Ibuprofen 800 mg as needed
Kadian 50 mg
Halcion .25 mg for sleep


pieceOfCRPS
Regular Member


Date Joined Jan 2008
Total Posts : 66
   Posted 7/20/2008 4:57 AM (GMT -7)   
I am sorry I have no knowledge of that med, but I had to respond with a question. 

Why do we all fear telling our pain doc's that we need something better?  because we think they are going to think us just wanting drugs.  I do it too.  It keeps me from telling him what I think I need, and I end up leaving his office no better than I was before.  There has to be another way to get our point across without sounding like a drug addict wannabe.
 
Sorry I am no help.
 
Su
 
CRPS what a piece.
 
Permanent severe nerve damage from crushing injury.
CRPS, unwillingness to take meds.  Doomed to a life of misery but with a positive outlook.
 


Lucia_Delacroix
Regular Member


Date Joined Aug 2007
Total Posts : 59
   Posted 7/20/2008 6:07 AM (GMT -7)   
pieceOfCRPS said...
I am sorry I have no knowledge of that med, but I had to respond with a question.

Why do we all fear telling our pain doc's that we need something better? because we think they are going to think us just wanting drugs. I do it too. It keeps me from telling him what I think I need, and I end up leaving his office no better than I was before. There has to be another way to get our point across without sounding like a drug addict wannabe.



Sorry I am no help.



Su


It's ok, Su. Someone who knows more about Actiq will come along and shine some light on the subject.
Born with hip dysplasia in left hip, 2 surgeries to fix it when I was a very small toddler.

Also, 2 injured discs in lower back at L3-L4 and at L4-L5.

I also have Fibromyaglia as well.

Meds:
Zyprexa 7.5 mg
Wellbutrin XL 150 mg
Klonopin .50 to 1 mg as needed throughout the day for panic attacks
Norco 10/325 mg as needed for breakthrough pain
Baclofen 10 mg 3x a day
Ibuprofen 800 mg as needed
Kadian 50 mg
Halcion .25 mg for sleep


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/20/2008 10:00 AM (GMT -7)   
Hi,
I don't know anything about Actiq either, but will be curious to learn more. But I think there is another option when we go to see our doctors and that's some type of pain journal, or listing of our symptoms, particularly those that aren't being helped by current medications. Chutzie has posted a link in another thread (sorry, can't recall which one right now) to a pain journal, but if you keep a list of your symptoms throughout the day - how they vary with medication, activity, etc. - and then bring it to your doctor and emphasize how your life is being negatively impacted, that's a better strategy than asking for a specific medication. I don't think there's anything wrong with asking your doc if there aren't other options to help with your symptoms, but it's sad but often true (unless you really know the relationship with your doc) if we ask for a specific medication it starts to look like we're drug seeking. If you've got a great relationship with your doc you could bring in maybe a one page information sheet on a particular medicaiton and ask what they think - if that might help. But it really depends on how you and your doc relate. Sad, we should be able to have a collaborative relationship with our doctors. But reality is reality.

PaLady

Lucia_Delacroix
Regular Member


Date Joined Aug 2007
Total Posts : 59
   Posted 7/20/2008 3:30 PM (GMT -7)   
PAlady said...
Hi,
I don't know anything about Actiq either, but will be curious to learn more. But I think there is another option when we go to see our doctors and that's some type of pain journal, or listing of our symptoms, particularly those that aren't being helped by current medications. Chutzie has posted a link in another thread (sorry, can't recall which one right now) to a pain journal, but if you keep a list of your symptoms throughout the day - how they vary with medication, activity, etc. - and then bring it to your doctor and emphasize how your life is being negatively impacted, that's a better strategy than asking for a specific medication. I don't think there's anything wrong with asking your doc if there aren't other options to help with your symptoms, but it's sad but often true (unless you really know the relationship with your doc) if we ask for a specific medication it starts to look like we're drug seeking. If you've got a great relationship with your doc you could bring in maybe a one page information sheet on a particular medicaiton and ask what they think - if that might help. But it really depends on how you and your doc relate. Sad, we should be able to have a collaborative relationship with our doctors. But reality is reality.

PaLady


Thank you for your suggestion.
Born with hip dysplasia in left hip, 2 surgeries to fix it when I was a very small toddler.

Also, 2 injured discs in lower back at L3-L4 and at L4-L5.

I also have Fibromyaglia as well.

Meds:
Zyprexa 7.5 mg
Wellbutrin XL 150 mg
Klonopin .50 to 1 mg as needed throughout the day for panic attacks
Norco 10/325 mg as needed for breakthrough pain
Baclofen 10 mg 3x a day
Ibuprofen 800 mg as needed
Kadian 50 mg
Halcion .25 mg for sleep


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 7/20/2008 6:22 PM (GMT -7)   
Hi Lucia. I haven't used the Actiq before, but I think you are right - they are Fentanyl lollipops. PaLady has given you some good advice. If you do a google search or just search on this site, I think you'll find lots of downloadable pain journals you could use. I'm thinking it would be a pretty huge jump to go from Norco to Fentanyl, but I'm not a doctor. I have been on Kadian before. It didn't work for me, but I mention it because I was on a much higher dose than what you have listed (80mg 2x/day). You said it helps somewhat, so I'm wondering if maybe increasing that would be a better route than changing your breakthrough med? It's something you know helps, plus it is extended release, so it would give you more consistent relief than even the Actiq could. Just musing... Again, I'm not a doctor. I hope you are able to get some relief. I know how frustrating it is to have the pain be undertreated - that's my situation right now too.

Ry

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/20/2008 8:39 PM (GMT -7)   
Hi Lucia: Ry is right they are lollipops did nothing for me but cause problems when i asked for them after someone suggested i ask ! ! even had problems at the pharmacy getting them ( to me ) they were not worth the effort. Again it was my experience they may help You. I do not see or hear of anyone else taking or using them if they were any good Iam positive everyone in the group would have a lollipop in their mouth right now. best regards,
Tom Lasko


Lucia_Delacroix
Regular Member


Date Joined Aug 2007
Total Posts : 59
   Posted 7/21/2008 4:18 PM (GMT -7)   
If Actiq isn't really that good for BT pain, what would you suggest for BT pain that is better than Norco, Percocet, or Vicodin?
Born with hip dysplasia in left hip, 2 surgeries to fix it when I was a very small toddler.

Also, 2 injured discs in lower back at L3-L4 and at L4-L5.

I also have Fibromyaglia as well.

Meds:
Zyprexa 7.5 mg
Wellbutrin XL 150 mg
Klonopin .50 to 1 mg as needed throughout the day for panic attacks
Norco 10/325 mg as needed for breakthrough pain
Baclofen 10 mg 3x a day
Ibuprofen 800 mg as needed
Kadian 50 mg
Halcion .25 mg for sleep


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/21/2008 7:30 PM (GMT -7)   
Hi Lucia: the lollipops did not work for me but could be a Godsend to you. I noticed no-one else chimed in so i imagine they are not popular. What works ??
really really good question. to me none of the pain meds work the the duration they are supposed to. I do not know Your height and weight but if You read up on the breakthru meds You were prescribed chances are the Doctor under prescribed Your dosage. When You bring this up to Your Doctor be prepared. My personality is ex law enforcement so I am a ------------------ anyway i tell it like it is and let the chips fall where they fall plus- there are a lot of specialists in my area to choose from. So sorry i can't be more help. Please keep us posted. Best regards, tom in pain
Tom Lasko


Lucia_Delacroix
Regular Member


Date Joined Aug 2007
Total Posts : 59
   Posted 7/21/2008 10:51 PM (GMT -7)   
tom inpain said...
Hi Lucia: the lollipops did not work for me but could be a Godsend to you. I noticed no-one else chimed in so i imagine they are not popular. What works ??
really really good question. to me none of the pain meds work the the duration they are supposed to. I do not know Your height and weight but if You read up on the breakthru meds You were prescribed chances are the Doctor under prescribed Your dosage. When You bring this up to Your Doctor be prepared. My personality is ex law enforcement so I am a ------------------ anyway i tell it like it is and let the chips fall where they fall plus- there are a lot of specialists in my area to choose from. So sorry i can't be more help. Please keep us posted. Best regards, tom in pain


I am small, 5'2 and 183 lbs. Maybe it's because I'm overweight? I don't know. I am just frustrated with the Kadian helping me somewhat (they DO help to a degree) but the Norco isn't really doing its job. I am just searching for other options for BT meds. I am just tired of being in pain constantly. No one will do surgery on my back or on my hip, so I am stuck. They said my back and hips doesn't look bad enough to warrant surgery. I do not think there is a higher dosage of Norco, they only go up to 10 mg. Thank for trying to help, and I will keep you posted.
Born with hip dysplasia in left hip, 2 surgeries to fix it when I was a very small toddler.

Also, 2 injured discs in lower back at L3-L4 and at L4-L5.

I also have Fibromyaglia as well.

Meds:
Zyprexa 7.5 mg
Wellbutrin XL 150 mg
Klonopin .50 to 1 mg as needed throughout the day for panic attacks
Norco 10/325 mg as needed for breakthrough pain
Baclofen 10 mg 3x a day
Ibuprofen 800 mg as needed
Kadian 50 mg
Halcion .25 mg for sleep


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/22/2008 11:46 AM (GMT -7)   
Hi again Lucia: There are higher dosages or simply take more than one pill. But PLEASE speak to You Doctor before doing so. There are other break-thru meds that may work better.
I have so many questions so I'll start with Doctors-- I have been to lets say a neurosurgeon with my MRI's and he reviews them with me together with the Radiologists report. This neurosurgeon totally disagrees with the Radiologists and states i need surgery ! ! so i go to another neurosurgeon who agrees with the Radiologist and tells me surgery will only make me worse ! !
Then there is the quality of the films that have been done for i have had one set of Mri's at one place and nothing showed then went for another MRI and all kinds of crap showed up ! !
What type of Doctor are You seeing ? orthopedist, neuro, pain specialist ?? Hopefully We can shed some light on getting the right meds for You to help Your life more bearable. I for one went off of the anti depressents and feel much better but once again what works for me may not work for You.
Your body weight has a lot to do with medicine and how it affects You. Also have You had any blood work done lately to make sure Your liver and kidneys are functioning properly ?? Sorry for all the questions but knowing more may lead to some help. Have You gotten more than one doctors advice ?
I look forward to hearing from You, Take care and make sure not to over medicate. Best regards, Tom
Tom Lasko


Lucia_Delacroix
Regular Member


Date Joined Aug 2007
Total Posts : 59
   Posted 7/22/2008 4:09 PM (GMT -7)   
Well, my PM doc agreed to up the Kadian to 60 mg and put me on Actiq 200 mcg and he also changed my muscle relaxant to Skelaxin 800 mg. So, hopefully it will help.
Born with hip dysplasia in left hip, 2 surgeries to fix it when I was a very small toddler.

Also, 2 injured discs in lower back at L3-L4 and at L4-L5.

I also have Fibromyaglia as well.

Meds:
Zyprexa 7.5 mg
Wellbutrin XL 150 mg
Klonopin .50 to 1 mg as needed throughout the day for panic attacks
Actiq 200 mcg 3x a day
Skelaxin 800 mg 3x a day
Ibuprofen 800 mg as needed
Kadian 60 mg
Halcion .25 mg for sleep


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 7/22/2008 4:15 PM (GMT -7)   
I hope you get some better pain control from this new regimen, Lucia. I'll be interested to hear about the Actiq after you've tried them.

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/22/2008 7:13 PM (GMT -7)   
I am with Ry: Best of luck with Your new meds. Tom
Tom Lasko


painKILLER
Regular Member


Date Joined Aug 2007
Total Posts : 69
   Posted 7/24/2008 3:54 PM (GMT -7)   

Lucia, I have quite a bit of experience with Actiq.  Like any opiate, it really takes a little bit of trial and error before you know if it really will benefit you.  I took them for a year and a half, and they were very, very effective at killing my breakthrough pain.  However, I will warn you, should this medicine be prescribed to you: IT is prohibitively expensive for 99% of people.  Most insurance companies will not pay for the medication because a months supply can cost well over $10,000, depending on dose and quantity.  Most insurance companies also will not pay for the medication unless you are diagnosed with a malignant cancer. It is most likely that your doctor will want to go with the more recent version of breakthrough fentanyl, known as Fentora.  Instead of a lollipop, it is a little pill-like tablet that you let rest on your tongue. It absorbs quickly through the tissue on the inside of your mouth, and from my experience, it only takes minutes for it to work.  So, before you ask for  Actiq by name, check with your insurance policy. Also, both the regular and sugar free formulations of the lollipop have been tied to extreme dental decay of molar teeth, mainly because the lollipop, if used as indicated, rests between the upper gum and the molar itself.  Both can be an excellent breakthrough pain med, especially if you are prescribed an opiate which tends to block mu and kappa opiate receptors, like methadone. Because Fentanyl is the most potent opiate that humans can be prescribed, I would think about this a little before you ask for it.  Besides, I can think of atleast one or two other breakthrough options that you haven't tried, but that is for your doctor to decide with you. 

Good Luck,

PainKILLER

 


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/24/2008 7:54 PM (GMT -7)   
Hey PainKiller : Great advice, believe it or not i totally forgot about the costs and problems getting it covered by my insurance company. Plus when i went to my Dentist He informed me of the potential Dental problems. Thanks for the reminder.
Tom Lasko


painKILLER
Regular Member


Date Joined Aug 2007
Total Posts : 69
   Posted 7/24/2008 10:18 PM (GMT -7)   
Tom: What's so sick about this whole thing is that Cephalon, the maker of Actiq, really screwed people when they gave Barr a liscense to produce a generic. When the original Actiq was available without a generic, a lot of insurance companies were still willing to fit the bill for it despite the cost because there simply was nothing else like it available anywhere. However, when Actiq liscensed the generic to Barr, they jacked up the price of the Brand name and then set the price of the generic at the cost of the original brand. So, Cephalon produces BOTH the generic and the brand, but prices them differently. This was a royal screw job that Cephalon did on people. There is no concievable reason why a months supply of actiq should cost $5,000 dollars; yes, the technology for the release of the fentanyl is novel, but you don't see other pharmaceutical companies with new pain medication formulations charging that much, E.G, Opana. Opana, which is a fairly new time release medication for oxymorphone, costs at the most, highest dosage, 9 dollars per pill. The Actiq, at the highest dosage (1600 mcg) for 120 lozenges costs $10,297.82. (Per an online drugstore resource) That works out to $85 dollars per lozenge. Now, if you multiplied that over twelve months, your looking at spending well over $100,000 per year for this medication. It takes most people a couple of years to make that much in salary, never mind spending the entire amount on medication.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/24/2008 10:22 PM (GMT -7)   
It takes some of us many more than a couple of years to make that much $$!

PaLady

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 7/25/2008 12:03 AM (GMT -7)   
I don't think Norco has much in the way of Opiod medication in it. It works like
an anti-anxiety med. My doctor told me this because it didn't do a thing for me.
Atiq ... Wow! That sounds like a Hollywood med.
PN

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/25/2008 3:37 PM (GMT -7)   
Hi PainKiller: Wow You do Your homework. Thanks for the information. Any way You work in the pharmacy field ? None of my business but Your input's are really needed. Please keep up the great work. My highest regards, Tom
Tom Lasko


Morgoth
Regular Member


Date Joined May 2008
Total Posts : 177
   Posted 7/25/2008 5:18 PM (GMT -7)   
I take Opium Tincture (Actiq is not used very often in Belgium) and I pay about $ 17 for a bottle of 100 ml. I know the product exists in the States as well (Controlled Substance Type II or something I believe) but haven't got a clue about pricing. The advantage is that you can dose it very precise (per drop) and that it is relatively cheap here in Belgium (it used to be $ 0.05 for 100 ml). Getting a clearance to use is is something else though.

Hope the Actiq works fine. Might I suggest, after consulting your doctor of course, to try and start with lower Ibuprofen dosages. In my case, Ibuprofen became rather ineffective after becoming a regular opium user. And since Ibuprofen can lead to kidney problems, you might want to reconsider the dose, especially in the long run.

So, you just suggested Actiq to your doctor and he (or she) agreed? Neat. If only more doctors would listen to their patients.
To stand and be still at the Birkenhead Drill is a mighty bullet to shew.


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/25/2008 9:23 PM (GMT -7)   
Morgoth: I have been going crazy and thanks for keeping me busy. What does:
To Stand and be still at the Birkenhead Drill is a mighty bullet to shew. mean ??? Please let me know i am losing sleep for i can't find the answer.
Your USA friend in pain, tom
Tom Lasko


shortcake_727
Regular Member


Date Joined Jul 2006
Total Posts : 41
   Posted 7/26/2008 8:15 AM (GMT -7)   
Hi Lucia!

How are you doing on your new meds? I've been following this thread closely, as I have used Actiq for a short time, but had problems with my insurance covering it :( There is also a lozenges (Fentora) available which contains fentanyl. My doctor gave me a coupon for 28 qty a year ago, but again my insurance would NOT cover it!

My experience with both meds is that they do kick in SUPER fast, however they didn't last long at all (maybe an hour at best). I know it a "Breakthrough Pain Med), but I think it should still last more then an hour.

Since my insurance would not pay for either of those meds, I was on Dilaudid for about 2 years and it stopped working for me. Three months ago my PCP switched me to Roxicodone as my new breakthrough med and it works GREAT!! Just trying to give you other options in case the Actiq doesn't work for you. Roxicodone is pure instant release oxycodone with NO Tylenol. For my maintenance (Long acting) med, I am on Oxycontin and I seem to really well with "oxy" products for my pain.

Please let us know how you do on your new meds!

Take Care,
Shortcake
Wishing Everyone LESS pain!!!


Lucia_Delacroix
Regular Member


Date Joined Aug 2007
Total Posts : 59
   Posted 7/26/2008 9:52 AM (GMT -7)   
I am still waiting on prior authorization from my insurance for the Actiq, but I doubt they will pay for it. I am exploring other med options. I am on Kadian, and they upped my dosage to 60 mg which seems to help a little bit. Skelaxin seems to help a little bit, too, but I have to break the pill in half because it makes me sleepy! I also am still on Norco 10 mg for now until I can get Actiq or a different breakthrough pain med. Better than nothing, I guess.
Born with hip dysplasia in left hip, 2 surgeries to fix it when I was a very small toddler.

Also, 2 injured discs in lower back at L3-L4 and at L4-L5.

I also have Fibromyaglia as well.

Meds:
Zyprexa 7.5 mg
Wellbutrin XL 150 mg
Klonopin .50 to 1 mg as needed throughout the day for panic attacks
Actiq 200 mcg 3x a day
Skelaxin 800 mg 3x a day
Ibuprofen 800 mg as needed
Kadian 60 mg
Halcion .25 mg for sleep

Post Edited (Lucia_Delacroix) : 7/26/2008 10:55:05 (GMT-6)


painKILLER
Regular Member


Date Joined Aug 2007
Total Posts : 69
   Posted 7/26/2008 10:27 PM (GMT -7)   
Hi Tom, Thank you for the compliment. I'm not in pharmaceuticals, but my background is in human biology and chemistry. I find that knowledge truly is power, and the more I know about my condition and the treatments for it, the more respect I get from my physician. I "do my homework" because I refuse to let the insurance companies, and doctors, and drug companies screw me over anymore.
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