Aa
Cost of meds making me switch but to what???
Chronic pain patient for 7 years, diagnosed with spondylolisthesis when I was 18. Have had 3 back surgeries, including 2 laminectomies and a fusion at L5-S1. Had 20 good years post fusion but now the pain is back with a vengance. 80% chance that I will be worse off with more surgery. Followed protocol at PM clinic, graduated to Duragesic patches 100 and 25 mcg for TWO years/they are no longer working ( took them every 72 hrs until 1 month ago when dr. switched me to every 48 hrs.) Director of pain clinic (NOT my PM dr.) claims "state regs" prohibit the 90 day supply I've been getting for 2 years and now wants to give 30 days which would cost $130 a month (CANNOT afford it so I will going off Duragesic to ???????) Can anyone advise/suggest/has anyone been in my shoes? The dr's @ the clinic have NEVER been given any reason to distrust me and I suspect they are steering me toward an intrathecal morphine pump (I passed the "interview" with the psychologist but I just don't know if I'm ready to have any more surgery as I am TERRIFIED of it, live alone and MUST work full time/have no help/friends. IN addition to "aching" pain, I have terrible neuropathy and cannot sit more than 5 minutes. WHAT CAN I SWITCH TO FROM DURAGESIC???
Good to hear from you again Chronicpain2,
Wow what wonderful news that you were able to obtain the three month RX. We have learned from you. None of us imagined that that was possible. We do learn everyday and thank you for teaching us.
Now I have to figure out if it is possible for me to obtain a three months supply of my opiates to save money as you have done. A little hope any where is always welcome. :)
I am sorry that you are estranged from your sister and have distanced yourself from certain friends. I feel you made the correct choices. It took me a while to learn who in my family I count truly count on, no mater what and those among my friends were my real friends and would stand beside me. Unfortunately I hurt much and fought long and hard to save once close relationships until I realized they were indeed as you named them, toxic. We have more than enough pain and challenge in our lives without adding to it by allowing toxic relationships. Ppl that bring us retching emotional upset and make us feel as if we need to apologize for our pain and disabilities and any inconvenience it may impose upon them are simply not healthy for us.....Or even healthy for them. We all have a few or more of those in our lives. However it is extremely difficult to exclude or ban them from our lives when they are a close loved relative or long time close friend. But as you stated and I agree that in the long run it actually makes us stronger.
We're here for you.
Peace,
Tuck
Wow what wonderful news that you were able to obtain the three month RX. We have learned from you. None of us imagined that that was possible. We do learn everyday and thank you for teaching us.
Now I have to figure out if it is possible for me to obtain a three months supply of my opiates to save money as you have done. A little hope any where is always welcome. :)
I am sorry that you are estranged from your sister and have distanced yourself from certain friends. I feel you made the correct choices. It took me a while to learn who in my family I count truly count on, no mater what and those among my friends were my real friends and would stand beside me. Unfortunately I hurt much and fought long and hard to save once close relationships until I realized they were indeed as you named them, toxic. We have more than enough pain and challenge in our lives without adding to it by allowing toxic relationships. Ppl that bring us retching emotional upset and make us feel as if we need to apologize for our pain and disabilities and any inconvenience it may impose upon them are simply not healthy for us.....Or even healthy for them. We all have a few or more of those in our lives. However it is extremely difficult to exclude or ban them from our lives when they are a close loved relative or long time close friend. But as you stated and I agree that in the long run it actually makes us stronger.
We're here for you.
Peace,
Tuck
Hi Sherry,
Thanks so much for your VERY kind words.
Not to embellish myself in any way but my doctor said he has seen very few patients who are as driven as I am in seeking a) alternative therapies and new therapies and b) and also in persisting in being my own spokesperson/saying what's on my mind.
I truly feel this is because I was diagnosed with spondylolisthesis when I was 18 (this precipitated all my pain problems) and MAINLY because I live alone, have no kids and no friends (I eliminated those people in my life who, for example, would take me to a doctor's appointment only if I took them to lunch or reimbursed them.......I can get a stranger to do that). My only sibling and I are estranged because of the same reason. She can't do anything for me unless I pay her (not to mention she stole $30,000 from me when our mother passed away; she knows that I know and accepts this non-existent relationship rather than give back the money. She was constantly telling people lies about me not coming to the hospital, etc. when I was there every other day).
Long story short, toxic relationships are too harmful for me to allow. But I'm a stronger person for it. I am not intolerant, I just have drawn the line on emotional/psychological abuse.
I truly hope I can help someone here as you all have helped me.
HAPPY 4th!
chronicpain2
Thanks so much for your VERY kind words.
Not to embellish myself in any way but my doctor said he has seen very few patients who are as driven as I am in seeking a) alternative therapies and new therapies and b) and also in persisting in being my own spokesperson/saying what's on my mind.
I truly feel this is because I was diagnosed with spondylolisthesis when I was 18 (this precipitated all my pain problems) and MAINLY because I live alone, have no kids and no friends (I eliminated those people in my life who, for example, would take me to a doctor's appointment only if I took them to lunch or reimbursed them.......I can get a stranger to do that). My only sibling and I are estranged because of the same reason. She can't do anything for me unless I pay her (not to mention she stole $30,000 from me when our mother passed away; she knows that I know and accepts this non-existent relationship rather than give back the money. She was constantly telling people lies about me not coming to the hospital, etc. when I was there every other day).
Long story short, toxic relationships are too harmful for me to allow. But I'm a stronger person for it. I am not intolerant, I just have drawn the line on emotional/psychological abuse.
I truly hope I can help someone here as you all have helped me.
HAPPY 4th!
chronicpain2
Hello again Chronic,
I'm so HAPPY that you were able to go back to your regular That is WONDERFUL news.
I hope that you will be able to hold as you wish so that you can make a decision in "your own good time" as to which approach you choose to take when you finally need to change your medication.
You are doing a remarkable job of being able to continue to work and get around as you do. You probably have already tried this when driving, BUT I wonder if a firm pillow under just a portion of your seat would help an you wouldn't need to sit on your hand if this pillow elevated your bottom just enough so that the top part of your thigh, below the buttocks, wouldn't touch the seat that way. (I hope that you understood what I was trying to say. :)
I wish ONLY the very best to you and I TRULY hope that you will PLEASE stay in touch with us and keep posting and contributing to this Forum!! We genuinely want you to keep us updated on your progress as we are VERY concerned for you and your health.
I wish you the VERY best and look forward to hearing from you again....Sherry
PS Have a safe and Happy 4th of July!!!
I'm so HAPPY that you were able to go back to your regular That is WONDERFUL news.
I hope that you will be able to hold as you wish so that you can make a decision in "your own good time" as to which approach you choose to take when you finally need to change your medication.
You are doing a remarkable job of being able to continue to work and get around as you do. You probably have already tried this when driving, BUT I wonder if a firm pillow under just a portion of your seat would help an you wouldn't need to sit on your hand if this pillow elevated your bottom just enough so that the top part of your thigh, below the buttocks, wouldn't touch the seat that way. (I hope that you understood what I was trying to say. :)
I wish ONLY the very best to you and I TRULY hope that you will PLEASE stay in touch with us and keep posting and contributing to this Forum!! We genuinely want you to keep us updated on your progress as we are VERY concerned for you and your health.
I wish you the VERY best and look forward to hearing from you again....Sherry
PS Have a safe and Happy 4th of July!!!
Many, many thanks to all the caring individuals who took the time to respond to my post/crisis (as I thought at the time).
The Monday following this post, I visited MY PM dr. (NOT the director of the clinic who started this entire problem!). He explained that he was on vacation and the director had to sign my script and that they have "philosophical differences". I picked up my 90 day supply (every 48 hours), filled it for $12.00, and am back on track.....for now. And yes, I do regularly get 90 day supplies of my patches and other meds except my breakthrough (MSIR or morphine sulfate) which is a 30 day supply (I could get a 90 day supply of that too but that is an "insurance thing", not doctor related).
I have been a chronic pain patient at that clinic for 7 years and have NEVER violated any policy so they trust me, justifiably so.
HOWEVER, the time is quickly approaching when I MUST switch from these patches as their effect is diminishing. Yes, I've tried methadone (it was awful for me/never again) and all other long acting opiates except Oxycontin (whatever the stuff Rush got into trouble with) and maybe MSContin (I don't remember taking that). All others I tried.
My problem is that I have both neuropathic pain and somatic (aching type) pain and it is localized, intense, and constant. I do well as long as I am not sitting or laying down (eliminates/restricts the time I can engage in many activities like sitting at work, sleeping, I NEVER dine out or go to movies, etc. The simple 5 minute drive from my office to home has me sitting on my hand to prevent the top of thigh, below the buttocks, from being in contact with the seat which creates EXCRUCIATING pain).
I MUST work (no income otherwise) and I like the diversion it gives me. Doctors have said my diagnostics alone (without meeting/speaking to me) indicate I'm on permanent disability and are amazed at my drive to stay functioning and have some quality of life. I REFUSE to give in and believe there are many options if one is open minded and puts the effort to find answers.
Ideally, I'd like to switch to EXALGO, an extended release Dilaudid which just came out. However, my fentanyl dose is so high that I could not take that medication (they only come in 8, 12, and 16 mg. and I'd need at least 50 mg. I am told). My doctor's PA discussed this with me and said eventually a high enough dose may be rolled out but for now, these low test doses are typical for a newly released drug like that.
If I can't last until then, I may consider the MSContin (suggested by several), Oxycontin (just because I haven't tried it), or succumb to the intrathecal morphine pump. The only concern I have about the pump is the surgery and secondly, will it restrict my activities (the more active I am, the better I feel). We've discussed it VERY frankly and they are aware I am trying to hold out until I'm SURE about a change.
Again, thanks SO MUCH for the answers and the link to prescription assistance.
I'm so very proud and happy to be part of such a caring group of people.
I hope I can reciprocate sometime!
chronicpain2
The Monday following this post, I visited MY PM dr. (NOT the director of the clinic who started this entire problem!). He explained that he was on vacation and the director had to sign my script and that they have "philosophical differences". I picked up my 90 day supply (every 48 hours), filled it for $12.00, and am back on track.....for now. And yes, I do regularly get 90 day supplies of my patches and other meds except my breakthrough (MSIR or morphine sulfate) which is a 30 day supply (I could get a 90 day supply of that too but that is an "insurance thing", not doctor related).
I have been a chronic pain patient at that clinic for 7 years and have NEVER violated any policy so they trust me, justifiably so.
HOWEVER, the time is quickly approaching when I MUST switch from these patches as their effect is diminishing. Yes, I've tried methadone (it was awful for me/never again) and all other long acting opiates except Oxycontin (whatever the stuff Rush got into trouble with) and maybe MSContin (I don't remember taking that). All others I tried.
My problem is that I have both neuropathic pain and somatic (aching type) pain and it is localized, intense, and constant. I do well as long as I am not sitting or laying down (eliminates/restricts the time I can engage in many activities like sitting at work, sleeping, I NEVER dine out or go to movies, etc. The simple 5 minute drive from my office to home has me sitting on my hand to prevent the top of thigh, below the buttocks, from being in contact with the seat which creates EXCRUCIATING pain).
I MUST work (no income otherwise) and I like the diversion it gives me. Doctors have said my diagnostics alone (without meeting/speaking to me) indicate I'm on permanent disability and are amazed at my drive to stay functioning and have some quality of life. I REFUSE to give in and believe there are many options if one is open minded and puts the effort to find answers.
Ideally, I'd like to switch to EXALGO, an extended release Dilaudid which just came out. However, my fentanyl dose is so high that I could not take that medication (they only come in 8, 12, and 16 mg. and I'd need at least 50 mg. I am told). My doctor's PA discussed this with me and said eventually a high enough dose may be rolled out but for now, these low test doses are typical for a newly released drug like that.
If I can't last until then, I may consider the MSContin (suggested by several), Oxycontin (just because I haven't tried it), or succumb to the intrathecal morphine pump. The only concern I have about the pump is the surgery and secondly, will it restrict my activities (the more active I am, the better I feel). We've discussed it VERY frankly and they are aware I am trying to hold out until I'm SURE about a change.
Again, thanks SO MUCH for the answers and the link to prescription assistance.
I'm so very proud and happy to be part of such a caring group of people.
I hope I can reciprocate sometime!
chronicpain2
If you want to remain on the Duragesic patch, please contact me. I can supply you with information on how to obtain a 1-year free supply if you meet the income guidelines.
That equates to a $732.00 out-of-pocket expense each month.
That equates to a $732.00 out-of-pocket expense each month.
I have been suffering for 20 years with chronic. I was put on every pain medication you can think of (I have tumor on the nerve of my foot and they can't be removed) some of the pain medication they put me on was well over $200.00 for one script. I told my pain specialist I could afford that. he then said let me see what I can do. he was able to get this for me straight from the manufacture at more then 3/4 of the cost if I continued to get it at the pharmacy. if you have done so, try asking for samples or ask you doctor if they can call to see if they can "work:" something out with the manufacture.
best of luck to you and I hope you can get reilief
Michelle
best of luck to you and I hope you can get reilief
Michelle
LOL! Sara, you took the words right out of my mouth. I was thinking the same thing about gun trol but figured I'd vented enough already. :-D
Hi. As for finding low cost prescriptions, I'd like to refer you one of forum leaders Sandee1818 journal post on this subject. As it is rather long and detailed, I'll just provide you the link:
http://www.medhelp.org/user_journals/show/162076/Prescription-assistance-programs-and-phone-numbers?personal_page_id=1060
To Jaybay: I agree. The war on drugs is more a war on doctors and chronic pain patients. It's like gun control. Outlaw personal ownership of guns and who do you think will turn them in? The drug cartels? The gang? Me? NO on all counts!
http://www.medhelp.org/user_journals/show/162076/Prescription-assistance-programs-and-phone-numbers?personal_page_id=1060
To Jaybay: I agree. The war on drugs is more a war on doctors and chronic pain patients. It's like gun control. Outlaw personal ownership of guns and who do you think will turn them in? The drug cartels? The gang? Me? NO on all counts!
Duragesic is the name brand fentanyl patch. There are several generics available that are far cheaper than Duragesic. Since that's a long-acting medication, there are also several others in that class to try. A very cheap, very long-acting pain med is methadone. And it's true that federal regs govern how much of a Schedule II narcotic can be prescribed. You were very lucky to get a 3 month supply for as long as you did. I think it's ridiculous myself. All these requirements of monthly visits and limits on prescriptions boil down to the failed war on drugs. Politicians have to make it look like they're doing something about street drugs, but the only people they can control are providers and legitimate patients. The criminals keep right on doing what they've always done. But that's another topic. LOL!
Sherry is right that you need to have a long talk with your pain doc. There are plenty of options to choose from, so try not to panic. I understand how traumatic this must be right now, but also believe you'll be able find a solution with your doctor.
Sherry is right that you need to have a long talk with your pain doc. There are plenty of options to choose from, so try not to panic. I understand how traumatic this must be right now, but also believe you'll be able find a solution with your doctor.
Hi Chronic,
I want to welcome you to the Pain Management Forum and tell you how happy we are that you have found this Forum! We also want you to understand that there are NO Doctors whatsoever on this Forum. We are ALL CPO (Chronic Pain) Patients that help and advise each other thru the experience and expertise that each of us have because of our individual CP Conditions.
I'm really sorry that you have found yourself in this position. I'm quite sure that what they are telling you is correct as to the regulations as I, too, am on the Fentanyl Patch but mine is 62 mcg. !, 50 Patch and 1, 12 patch. I've NEVER heard of someone being able to get more than a months supply at one time because it is a Schedule II Narcotic. Evedryone that I've ever heard of that is on it has to go monthly to their PM ( Pain Management) Dr. to get a "hard copy" of their prescription to "hand carry" to their Pharmacy.
Is your insurance coverieng the change to "every 48 hrs." ? Are you having to pay for ALL of your costs of your Fentanyl Patches or is your insurance paying also?
Your PM Dr. may be steering you towards the Pump because of the extremely high dose of Patches that you are on. Have they mentioned this or talked to you about this at all?
Whenever someone is switched from the Fentanyl on here I usually see that they are being switched to something like MS Contin which is another Lon-Lasting Opiate. However, from what you are saying they seem to favor the Pump for you. I think that you need to sit down and have a "Heart to Heart" with your PM Dr.
I'm so sorry for all of the problems that you are having right now and I hope that you are able to work something out that will still give you the relief that you need.
BEst of luck and I hope that y ou will keep us updated on your situation....Sherry
I want to welcome you to the Pain Management Forum and tell you how happy we are that you have found this Forum! We also want you to understand that there are NO Doctors whatsoever on this Forum. We are ALL CPO (Chronic Pain) Patients that help and advise each other thru the experience and expertise that each of us have because of our individual CP Conditions.
I'm really sorry that you have found yourself in this position. I'm quite sure that what they are telling you is correct as to the regulations as I, too, am on the Fentanyl Patch but mine is 62 mcg. !, 50 Patch and 1, 12 patch. I've NEVER heard of someone being able to get more than a months supply at one time because it is a Schedule II Narcotic. Evedryone that I've ever heard of that is on it has to go monthly to their PM ( Pain Management) Dr. to get a "hard copy" of their prescription to "hand carry" to their Pharmacy.
Is your insurance coverieng the change to "every 48 hrs." ? Are you having to pay for ALL of your costs of your Fentanyl Patches or is your insurance paying also?
Your PM Dr. may be steering you towards the Pump because of the extremely high dose of Patches that you are on. Have they mentioned this or talked to you about this at all?
Whenever someone is switched from the Fentanyl on here I usually see that they are being switched to something like MS Contin which is another Lon-Lasting Opiate. However, from what you are saying they seem to favor the Pump for you. I think that you need to sit down and have a "Heart to Heart" with your PM Dr.
I'm so sorry for all of the problems that you are having right now and I hope that you are able to work something out that will still give you the relief that you need.
BEst of luck and I hope that y ou will keep us updated on your situation....Sherry
I'm not a hundred percent sure, but I think Duragesic is the name brand patch. I believe Fentanyl is the generic. Maybe they'll pay for the generic? Or maybe the generic will be significantly less than the name brand.
I'm sure someone will be along later that may have more knowledge on this type of situation or maybe your condition.
I'm sure someone will be along later that may have more knowledge on this type of situation or maybe your condition.
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Welcome to MedHelp's Pain Mangement Forum. I am glad that you found us and took the time to post and share your medication issues with us,
Everyone is correct, Fentanyl is the generic for Duragesic. It may be less costly to switch to the generic but they are not cheap either. I assume you have some drug coverage?? Depending amount your insurance will cover for your prescriptions your monthly cost could be $25-50.
If not you could try one of the companies on the link that Sara provided for Sandee's journal. According to what I understand there are income limits and it is not a quick process. However it would certainly be worth looking into.
I agree that it is probably the restrictions on the scheduled opiate that has made your clinic physicians change from 30 to 90 days. I, like Sherry have never heard of a perscription scheduled opiate for more than 30 days. I cannot figure out how they were able to do that for two years....but in your case I am certainly glad that they did.
If you are reluctant to make a change to an intrathecal morphine pump please stop the process now and discuss this with your physician. He may be able to ease your concerns or he may understand where you are coming from and work with you on something different.
You ask a good question. Where to from Duragesic? It is 80-100 times more potent that morphine, depending on which article or company you are reading. Once you are on fairly high doses of fentanyl there are fewer options. However every one's system responds differently to medications. You may find a less potent opiate as effective in pain management as you do the fentanyl. It just depends on how your body metabolizes and reacts to any given opiate.
Again I encourage you to have a long discussion with your physician. He will be able to answer your questions better than any of us are able.
Best of luck to you. Please keep us posted and let us know your decisions and what works for you. We all learn from one another. I'll look forward to hearing from you again soon.
Take Care,
~Tuck