Welcome Chrisherry - Warning about Actiq or Fentora

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Stella Marie
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Date Joined May 2005
Total Posts : 601
   Posted 2/17/2009 11:17 PM (GMT -7)   

Welcome Chisherry             

I am sorry to hear about your chronic pain.  As we all know, pain is a horrible thing.  When I read what pain medications you were on, I felt I had to share my experiences with you.  I was diagnosed with a terminal illness and was given a 2 – 8 year life span.  Because of my terminal status, my first pain management MD Rx'ed a variety of oral pain meds and  also had me on Actiq 1000 mcgs 4 x a day for break thru events.  I was shocked to see that your pain management doctor has you on Actiq at all – no less 1200 mcg per day for a noncancerous diagnosis.

As you are well aware, Actiq 1600 mcgs is the strongest schedule II oral pain medication there is.  There is nothing stronger and you are already on 1200 mcgs.  I think the comparison rate is almost 80 times stronger than morphine.  If you are taking 4 a day – the cost has to be $4000 plus a month.  I am shocked your insurance company hasn't pulled the plug.  Mine sure went crazy. Twice in 18 months they refused payment when I went to pick up my Rx's.  One of those times I was totally out of Actiq and was forced to pay $4300 out of my pocket for my meds because it took several days to straighten everything out with my insurance.  Actiq is very short acting – but with a rapid onset- so it is recommended for breakthrough cancer pain. If you require fentanyl for pain relief, the Duragesic patch provides continuous medication. I have found from personal experience, lower doses of continuous fentanyl provided better pain control. I am certainly not a doctor, but experience has taught me the hard way Actiq and Fentora are Red Flags in the insurance industry and with most pain medication specialists.

Here is my Actiq nightmare.  I am considered terminally ill – so the cancer indication was waived.  Fentanyl (Actiq) at these massive ORAL doses create havoc on your entire pain system.  I can guarantee that you are not just dependent on them – you are addicted.  I know – I have been there. PM specialists will tell you that Actiq IS ADDICTING not just physically dependent - and addiction happens within 2 weeks. Actiq and Fentora create tolerance issues rapidly, so you need more and more for pain control – they are not designed for long-term use. They are considered end stage of life pain meds.  They also totally shut down your body’s natural pain fighting abilities and  put patients in an opioid induced hyper-analgesic state.  They sure did for me - I did not believe it at first.

All of a sudden, my pain management specialist had to take a medical leave, so I was reassigned to another specialist at the same major teaching institution.  Guess what – no one would prescribe it for me. NO ONE.  Cancer only they said.  Everything else was OK, duragesic patch and Dilaudid – no problem.  NO ACTIQ - NO FENTORA per the consensus at this top 10 major institution – I had a choice of how I wanted to get off it.  Fast – three days or slow 12 days.  It is a horrible drug to detox.  Nevertheless, I have to be honest, after 6 weeks of feeling like I had the flu and every inch of my body hurting – I actually felt better.  Those high doses of Fentanyl made my pain much worse.  I was already having bouts of level 10 daily, but the massive Fentanyl doses had destroyed any of my natural ability to fight of pain. 

You are totally maxed out.  You have nowhere to go if your pain gets worse. There are many other options like the pump that are much better choices.   I would highly recommend a second opinion about your pain meds.  I thought I would die without my Actiq or Fentora.  I thought the pain would kill me.  I can almost guarantee that you are going to run into a problem, as I did.  Either your insurance will refuse to pay $50,000 a year for Actiq, because you are not a cancer patient, or a doctor will refuse to write it.  As horrible as that experience was, I learned a hard lesson about pain medication.  More is not always better.  Sometimes a level 4 or 5 is the best you can hope for, because adding more narcotics can make your pain worse not better.  I have learn many biofeedback and meditation techniques that really do help.  

I  do not want to sound like I am preaching, but it was a horrible experience when you realize that no one is going to Rx a medication.  It is best not to ever have to face that – and I have heard several people now that have had identical experiences.

Best of luck in your pain relief quest.


Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.

Post Edited (Stella Marie) : 2/17/2009 11:46:30 PM (GMT-7)


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 2/17/2009 11:19 PM (GMT -7)   
Sorry everyone - I accidentally posted this twice. I did not mean to start a new thread - just edit a spelling mistake.

Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 2/18/2009 8:21 AM (GMT -7)   
Stella,
When I read what meds she was on I was astounded...That kind of medication for something like back pain....Don't get me wrong, I understand pain, but that was a bit much. Thanks for saying what I didn't have the guts to say myself....

Thank you Stella, and I hope you are doing okay today.

Me.
 
We are all in the same boat...unfortunatley it seems like it's sinking...
 
Rhonda
Post Lamenectomy Syndrome
Hemi Lamenectomy
Spinal Fusion
 
120 mg. Methadone daily
60 mg. Oxycodone daily
Lyrica as needed 

 


chrisherry
Regular Member


Date Joined Feb 2009
Total Posts : 21
   Posted 2/18/2009 9:50 AM (GMT -7)   
Hi Stella,
Thank you for your post. The main reason my doc put me on actiq was due to my malabsorption due to my gastric bypass. I am also on Ms Contin 60mg 2x a day but for me it as about as worthless as a tic tac. Even though I have started getting cavities and spending as much time at the dentist as
the drs office, it really is the only source of relief for me. I have been reading alot about Fentora and am going to talk about it with my dr. For those who dont know Actiq is absorb in the mucous membrous of the mouth, and with my intestines being all screwed up I dont absorb things correctly. Luckily I have really good insurance and neer had any complaints (knock on wood).
Thank you again,
Sherry AKA Pepperchick
 
38 y.o. w/ Chronic Pain, Fibromyalgia, Migraines, Stroke, Gastric Bypass, Hysterectomy,
Cholecystectomy, Hypothyroidism, Depression, Anxiety, Memory Loss, Insomnia, and counting.
 
Meds: Ms contin 60 mg 2x day, Actiq 1200 mcg 4x day, Xanax 2mg 3x day, Prozac 20 mg day, Ambien 10mg day, Soma 350 mg 2x day.


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 2/18/2009 10:46 AM (GMT -7)   
Hi Chrisherry!
I too wanted to welcome you to HW. I am also on Actiq for non-cancer pain, though I'm on 200mg 3-4x/day. I can see what the others are saying, b/c you do have to think about what you will do when you max out at 1600 4x/day. How will you handle the pain then? My PM brings this up to me a lot. I am allergic to all the other pain meds so I really don't have any options for controlling my pain, but I wanted to share with you some of the other things we've tried to keep my dose low (I've been on it for 6 years now with no increases).

Have you tried Lyrica? It is approved for fibro & I found it really helps, esp. at night. Also, my doc puts me on a 10-15 day "drug holiday" once a year where I go without my Actiq for that time. It is pretty miserable (okay, really miserable), but it resets my tolerance & I am able to get an increased benefit from the same dose when I start back on it after the holiday. Sometimes I can even cut back on how many times a day I take it for a while. Also, have you tried non-drug treatments? A co-worker of mine with fibro got me started with an osteopath with OMT (osteopathic manipulation therapy/treatment). It has been fantastic with helping me. And she was able to get back to work after a 2 year LOA & only needed Lyrica & Motrin to get through the day. My gym has special classes for people with fibro. You need to go much slower & gentler when working out, but strength & stretch work does help with pain. I don't have fibro myself, but I know it's helped me and I've met a lot of fibro people who swear by those classes. Maybe you've already tried all those ideas, just thought I'd pass them along in case they could be of any help to you.

For your teeth, have you talked to your dentist about sealants? I got them & they have been a godsend. They are quite cheap (esp. compared with fillings) & I just need to have my dentist change them out every couple years. Normally sealants last 7-10 years, but the Actiq eats through them quicker. Still, at least they prevent cavities. :)

take care,
frances

chrisherry
Regular Member


Date Joined Feb 2009
Total Posts : 21
   Posted 2/18/2009 11:27 AM (GMT -7)   
HI Frances,
Is the sealant you refer to like what they put on kids to prevent cavities? I have to go back to the dentist next week and will check into that! I did take Lyrica before but did not have any relief. I have tried pretty much everything it seems. I have talked to my Pain spec about the pump but have decided that the only way anyone will ever cut on me again is if I come up with some type of operable cancer. I know the pumps arent that big but, still. Also, I did use the duragesic for a while however they did not work well for me.
Sherry AKA Pepperchick
 
38 y.o. w/ Chronic Pain, Fibromyalgia, Migraines, Stroke, Gastric Bypass, Hysterectomy,
Cholecystectomy, Hypothyroidism, Depression, Anxiety, Memory Loss, Insomnia, and counting.
 
Meds: Ms contin 60 mg 2x day, Actiq 1200 mcg 4x day, Xanax 2mg 3x day, Prozac 20 mg day, Ambien 10mg day, Soma 350 mg 2x day.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13478
   Posted 2/18/2009 11:37 AM (GMT -7)   
Sherry, I have a Medtronic pump and its been a life saver for me especially now that I have a new pain mgt dr that is highly trained in pumps. I have absorption problems from crohns disease surgery, wacky system that does not tolerate medicatons of any kind well at all. We ran the gambit with me and oral meds and this is how I ended up with the pump. Now, I have a wider variety of medications that can be used in the pump. I do wish you would do some research on the pumps, sounds like you may be a good candidate for one. The surgery was not that bad....Susie


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 2/18/2009 11:41 AM (GMT -7)   
Sherry,
Yep, that's it exactly! Same exact procedure. I don't know why they don't recommend them for more people. I think it cost me $80 for 4 of them the last time I went; I'm not sure about that. They are NOT covered by dental insurance for adults so plan to pay cash. It takes about 10 min. to apply each sealant so usually you have to schedule it ahead of time. Also, just so you don't panic like I did (lol) the sealants often get discolored. They become brown or black in the center. That doesn't mean anything. I've never had cavities so I thought that's what they were, but I was okay and the sealants were still good. Wait til you get the x-rays to panic b/c the visual inspection doesn't mean much of anything.

I have a question for you, though. Do your teeth get all sensitive from the Actiq? I never used to have that problem and when I occasionally have to switch to Dilaudid (plus Benadryl for the hives) it goes away. I brush with Sensodyne toothpaste and that helps a little bit, but I've just never heard anyone talk about tooth sensitivity with the Actiq. My dentist is pretty sure that's the cause of it & I tend to agree.

chrisherry
Regular Member


Date Joined Feb 2009
Total Posts : 21
   Posted 2/18/2009 12:18 PM (GMT -7)   
Frances,
No I dont really have any sensitivity problems. I did have a tooth that I had capped and did have some exposed nerve. I could see if the tooth had a cavity if it got to the nerves they would be very sensitive but I try to catch them as soon as possible.

Susie,
I have been on my current med regiment for about 1 1/2 years and am well controlled so hopefully I wont require any increases any time soon. I have put a good bit of thought into the pump but like I said I am scared and when you are on things that work for you, you get reluctant to change. Thats how I am right now. I guess the pump would be my last resort.
Sherry AKA Pepperchick
 
38 y.o. w/ Chronic Pain, Fibromyalgia, Migraines, Stroke, Gastric Bypass, Hysterectomy,
Cholecystectomy, Hypothyroidism, Depression, Anxiety, Memory Loss, Insomnia, and counting.
 
Meds: Ms contin 60 mg 2x day, Actiq 1200 mcg 4x day, Xanax 2mg 3x day, Prozac 20 mg day, Ambien 10mg day, Soma 350 mg 2x day.


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 2/18/2009 12:59 PM (GMT -7)   

I also have a pump and gastric absorption issues.  The pump was a miracle pain reliever.  Because the medication goes directly into the spinal area, there are no gastric issues.  I am curious why the patch offered no relief, it is absorbed thru the skin and also bypass' the gastric system.

The pump also is great for custom blending of medications, low doses (about 1/100 the amount you require orally) and also offers bolus dosing at specific times of the day.  There are many IV meds that can only go pump and offer unique pain relief.

I was only on Actiq and Fentora for 20 months.  I can tell you that getting 1200 mcgs into your system within 20 minutes creates major tolerance issues. It will happen.  I know that you did not start of 1200 mcgs - since the starting dose is something like 200 mcgs.  Four is the maximum you can take in 24 hours without worrying about respiratory distress and OD'ing .  So somewhere in the 1 1/2 years that you have been using this med, the dose and frequency must have been increased.  No one starts at 4 a day 1200 mcgs - you had to build up to that dose.  Actiq is one of the few pain meds that is truly addicting to pain patients and not just creates dependency issues.  If you are using all 4 a day - every day for break thru short term relief - your brain is getting a huge bolus of fentanyl 4 times a day.  4800 mcgs a day is a wopping amount. 

I can promise you that your insurance, no matter how good it is, will eventually question a $50,000 - $80,000 a year expenditure for a non indicated medication.  You have only been on it 1 1/2 yrs - someone is going to notice.  

I was kidding myself about thinking that this was the only med that controlled my pain.  Once my new pain med doctor pulled the rug out from under me by cutting off my Actiq and then adjusting my pump and oral meds - did I begin to have have true strides forward in my pain management.

Your doctor may not be doing you any favor by using this end stage med for back pain.  Please consider a reevaluation.  You have nothing to fear if this is truly the only med that works for you.  You have much to gain if a good PM specialist creates a pain plan that will last a life time.  The one you are on now is designed for short term (less than one year) use.  It is designed for end stage cancer pain when nothing else works.  Please don't use up all of your options in only two years. 

A non-narcotic that I have noticed pain relief from is Cymbalta.  I noticed a difference within 3 weeks of reaching a therapeutic does of 120 mgs.

The pump can be trialled without surgery to see if it works for you. The surgery is minor - same day - out patient surgery.  Within a month, your fine and you have a pain tool with almost unlimited options and no gastric issues.



Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.

Post Edited (Stella Marie) : 2/18/2009 1:44:01 PM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13478
   Posted 2/18/2009 1:18 PM (GMT -7)   
Thank you Stella a great post. I too believe in the pump especially after having a new pain mgt dr on board that handles nothing but pump patients. Gosh what a difference this lady has made in my in one visit, actually two visits. On my second visit it was time for a refill and she made adjustments with my meds that are just unbelievable. I am not taking any oral meds now for BT pain, don't need them. I even mopped my living room last night and was just sure half way thru I would be screaming in pain-never happened. Before my refill she increased my oral Dilaudud from 2mg to 8 mg every six hours and it really helped. In addition to her knowledge of pumps she is very educated in pain medications and does her compounding. I went for a check up last week after my refill and we left my pump where it was. I really did not feel I needed an increase just yet. Plus I have been sick and really had not been able to try my wings with my new adjustments.

Its a shame that people are so afraid of the pump. I really feel alot of people are missing out on so much life because of their fears. To me the pump is freedom. I guess I am not one that wants to be miserable all the time I don't know. There are some people that are that way, its like it all they know, so sad. I have to have quality life without it I am no good.Hugs, Susie


chrisherry
Regular Member


Date Joined Feb 2009
Total Posts : 21
   Posted 2/18/2009 1:20 PM (GMT -7)   
HI Stella,
You are correct, I did not start at on 1200mcg. I started on 400mcg and moved up and have been on 1200mcg for 1 1/2 yrs. My chronic pain is not just back pain. I was disappointed that the duragesic patches did not work for me because I HATE taking pills and the bigger ones do have a tendency to get stuck in my small stomach. I fully plan to keep my options open though but like I said, As long as something works for me I will stick with it as long as I can.
Sherry AKA Pepperchick
 
38 y.o. w/ Chronic Pain, Fibromyalgia, Migraines, Stroke, Gastric Bypass, Hysterectomy,
Cholecystectomy, Hypothyroidism, Depression, Anxiety, Memory Loss, Insomnia, and counting.
 
Meds: Ms contin 60 mg 2x day, Actiq 1200 mcg 4x day, Xanax 2mg 3x day, Prozac 20 mg day, Ambien 10mg day, Soma 350 mg 2x day.


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 2/18/2009 1:31 PM (GMT -7)   
 
 
Stella,
I have a question about the pump...What is the difference when you take pain meds orally and get them introduced through a pump?  Can you still "feel" it, do you have withdrawls?  Does it actually work better then taking them orally?
 
Silly ??? maybe, but I worry about stuff like this, like maybe it will help but send me into withdrawls...Any answers will be helpful.
 
I am not getting the same relief from my meds anymore and would like to talk to my Dr. about the pain pump...He mentioned it once and said when I was ready we would talk seriously..
 
Me.

 
We are all in the same boat...unfortunatley it seems like it's sinking...
 
Rhonda
Post Lamenectomy Syndrome
Hemi Lamenectomy
Spinal Fusion
 
120 mg. Methadone daily
60 mg. Oxycodone daily
Lyrica as needed 

 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13478
   Posted 2/18/2009 1:55 PM (GMT -7)   
Me, there is a huge difference between the meds in the pump and what you take orally. No, you do not go into withdrawals either. With the pump it is a steady flow of medication there are no highs or lows. With orals its the clock watching game, pills losing their full effect before its time for another pill. With a pump you have none of that. Our meds in the pumps is pretty much pure, with pills its not that way. For instance my pump has 4 medications in it, this is dripped in the dura sac where the pain receptors are located. This medication covers the receptors therefore not allowing the pain signal to go to the brain. For me the pump was necessary because of either intolerances or allergic reactions to meds, I ran out of choices. This pump was the best thing to happen to me. One thing any person needs to know about a pump is you must be given oral meds for BT pain. That is a must. Some dr will not give BT meds if you have a pump. If you run into one like that, run don't walk away from the quack. Now that my new dr has adjusted my meds in the pump I do need BT meds but she always wants her patients to have them on hand just in case. Not all drs are equal on managing pump patients either....Susie


Boxerlover
Regular Member


Date Joined Dec 2006
Total Posts : 274
   Posted 2/18/2009 3:34 PM (GMT -7)   

Chrisherry, hey girl, I tried to get a private message to you but I don't think you have listed any options.  My aim and msn messenger is listed so if you have a sec, try and contact me, thanks!! :-)

Melissa


chrisherry
Regular Member


Date Joined Feb 2009
Total Posts : 21
   Posted 2/18/2009 4:14 PM (GMT -7)   
Hi Melissa,
I sent you a message on msn!

Stella,
After quite a bit of thought and then re-reading your message I have to say that I am offended by the fact that you said I was ADDICTED to Actiq. Although I am dependant on them for pain management, I am quite sure I am not addicted to them. I can go for days without them if needed and have before. As much as I appreciate what some may consider concern, That was just a little overboard and as far as I am concerned this topic is closed.
Sherry AKA Pepperchick
 
38 y.o. w/ Chronic Pain, Fibromyalgia, Migraines, Stroke, Gastric Bypass, Hysterectomy,
Cholecystectomy, Hypothyroidism, Depression, Anxiety, Memory Loss, Insomnia, and counting.
 
Meds: Ms contin 60 mg 2x day, Actiq 1200 mcg 4x day, Xanax 2mg 3x day, Prozac 20 mg day, Ambien 10mg day, Soma 350 mg 2x day.


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 2/18/2009 5:22 PM (GMT -7)   
I am sorry that I offended you.     I DID NOT HAVE THE RIGHT TO MAKE THAT STATEMENT CONCERNING ADDICTION.  I apologize for that word.
 
 As I stated in my 1st post, I was just sharing my experiences with you. My comments were what I was forced to learn that hard way from two Addictionologists, as well as several top pain management specialists about the use of Actiq for non-indicated uses. The addictionologists and PM specialists said that because it was so strong and so addicting to the people who take several a day - that is why it's use was so limited by the FDA. I agree, I had no right to say you were addicted-but the statistics for this med are horrible when I comes to crossing the dependency line. I never thought I was addicted to them only dependent. But they were unlike my other pain meds. I just did not want you to fall into an inappropriate tx plan like I did by a PM specialist I trusted with all my heart. When I was given a 3 day detox warning because PM dr was not available - I just wanted to warn or spare anyone that nightmare. My intentions were never to offend you, just present information I have gain in my travels thru pain management, chronic pain rehabilitation and with addictionologists. 

I respect your request. The topic of your posting use is closed.


Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.

Post Edited (Stella Marie) : 2/18/2009 5:45:48 PM (GMT-7)


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 2/20/2009 9:39 AM (GMT -7)   
turn  
chrisherry
Wow!  Some heated words there....we have all been through the "addiction" "dependence" issue before so don't take it personally girl...
 
I started a thread a while ago about it and BOY what responses I got!!!  For a long time I considered myself an addict, only because everybody said I was.  Now, that I have been seeing a great PM Dr. I can see the difference.  And now I feel much better about it.
 
I no longer feel guilty about taking my meds.  I no longer let what others say offend me.  I truly think that I am okay...Even though I have to take pain meds around the clock.
 
So, please don't take offense...we are all here to help each other...
 
Have a great day everyone...... tongue
 
Me.

 
We are all in the same boat...unfortunatley it seems like it's sinking...
 
Rhonda
Post Lamenectomy Syndrome
Hemi Lamenectomy
Spinal Fusion
 
120 mg. Methadone daily
60 mg. Oxycodone daily
Lyrica as needed 

 

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