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Old 10-03-2007, 11:19 PM   #1
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Very "Opioid Tolerant" person needs help

I've been taking some form of narcotics for over 13 yrs now.

*I've had 3 lamanectomies, a fusion as well as Microvascular Decompression surgery for Trigeminal Neurailgia. I now need another fusion.

I've been very lucky when it comes to pain management Dr's,having 2 Dr's. during the past 10 yrs. (5 yrs. in Fla, and the last 5 in San Diego)
They've never been judgemental, always understood my pain and always provided me with whatever pain medications I needed.

So, I've been taking some form of pain meds. for the past 10 yrs. During that time,I've seen my pain Dr. every month and always used the same pharmacy in each city. ( 2 pharm. in 10 yrs.)

I tried the pump many yrs ago but it broke twice requiring 2 surgeries to fix it and finally had it taken out.

To say the least,I've grown extremely "Opioid Tolerant".

My current current meds are 80 mg. Oxycontin 2 x day,20 mg. of methadone 3 X day,8 mg. dilaudid every 4-6 hrs. as needed for btp.

I've been on this regimen for at least the past 2 yrs. I really need to switch my breakthrough pain meds as the dilaudid doesn't help as needed anymore.

I know that switching pain meds. helps from developing tolerance, and I plan to talk to my Dr. about switching my pain meds.on my next visit.
My pain Dr. has always been very open to any suggestions re; my pain mgmt. and medications.

I not only need to change my BTP meds but I'd also like to decrease my overall meds. so that when I have my surgery, my pain mgmt in the hosp. will be more effective.

I went through hell during my Trigeminal Neuralgia surgery 4 yrs ago due to the high doses of pain meds that I was on at the time, and continue to be on now.

Any suggestions would be greatly appreciated.
Thank You.
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Old 10-03-2007, 11:28 PM   #2
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Re: Very "Opioid Tolerant" person needs help

Cold you make a lateral move to something like the patch or methadone? You may not even have to raise your dosage, sometimes a new medicine will work where another has stopped being as effective.

I know some people in pain management switch meds around every 6 months or so, it keeps their tolerence down, but it doesnt work for everyone is what I have heard.

I think switching to another med is worth a try, even if it doesnt work out, maybe a short break from what youre on now will be enough to make them be more effective for you.

Good luck, I'm sure others will have more advice for you.
Your Friend, Fabby

 
Old 10-04-2007, 04:20 AM   #3
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Re: Very "Opioid Tolerant" person needs help

I would suggest that you ask your doc about the Duragesic Patch--I have been on the 100Mcg patch for several years and find that it provides relief without the hassle of taking a lot of pills--One note, the Mylan brand does not work for me or many others--If you decide to try it, use the name brand (Janssen) or the generic Sandoz (which is identical to name brand)--They are expensive and some people have problems with them sticking etc.--I do not--provides excellent relief and only need breakthrough meds on the third day--Some docs prescribe it to be changed every 48 hours rather than 72--My doc does not--prefers what manufacturer suggests--every 72 hours--Just a thought--Good luck--whit

 
Old 10-04-2007, 05:20 AM   #4
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Re: Very "Opioid Tolerant" person needs help

Whitfield,

Well said on the patches. I loath the Mylan brand and think they are junk. I wish i knew about that when I recieved my first script... Since then I have bought the Sandoz and they have worked like a charm.

 
Old 10-04-2007, 06:46 AM   #5
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Re: Very "Opioid Tolerant" person needs help

Hi Brent! I am suprised that your doc has you on two long acting meds: the oxycontin AND methadone. I haven't heard of that before. I was on methadone for about 3 years before deciding that the pain relief I was getting wasn't worth the many hours I that I was spending staring off into space. I'm currently on the Duragesic patch 100 with oxycodone 30mg for breakthrough. I'm not getting the pain control from the patch that I was when I first started using it and I'm waiting to talk to my new PM doc on October 25th to see what can be done. I have found that the oxyccodone works the best for my pain and am hoping that the doc will take me off the patch and put me on long acting oxycontin with the oxycodone for break through. All the best - Memere

 
Old 10-04-2007, 11:57 AM   #6
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whosit HB User
Re: Very "Opioid Tolerant" person needs help

I know how you feel. I also have trigeminal nueralgia(type 2) and have a tolerance to the medications I have. You are on a much, much higher dose than me so I dont know what to suggest as far as another med goes. I am on Oxycontin but only at 30mg BID(one 20mg and one 10mg) and 10mg percocet for BT pain. as far as for BT pain relief you are already taking a pretty strong drug for it and at a kinda high dose at that. if the pain is really that bad then mabey a Aqtiq lollipop for BT pain? I am not sure.....as far as a long acting med for relief you can ask about the patch...a 100mic patch might help you. When you switch to another medication for pain it usualy works better than the other one for some reason because you dont have a tolerance built to the new med. Another long acting med that you could consider is methadone......i have not tried it but I have heard that once you get on it for a week or so it gives really good pain relief to ppl that dont get it with other meds and doesnt have the up and down effect of Oxycontin. Alot of ppl here take it and seem to really like it alot, but it doesnt work for everyone like pretty much every other med in this world....works for some and nothing for others. i would ask your doctor about switching your medication and see what he suggests. i seen where you already take methadone though so mabey a higher dose of it with the oxycontin gone would help. I am strongly considering the patch myself though....no pills to take all the time and I hear it works well and is balanced in pain relief. i am at a loss as far as BT meds go because you take 8mg of hydromorphone already and that is a pretty strong med.....alot stronger than hydrocodone and oxycodone and pretty much everything i have seen as far as BT pain goes. Only thing I know of stronger is Fentnyl....which comes in a lollipop for BT pain. You might get results from mabey Oxy IR though at 30mg for BT pain.....i cant be sure......talk with your doctor and discuss all your options and go from there....he will know what to do. be sure to keep us updated as you go along though because there are many other ppl who go through this and your results will undoubtedly help others reading this thread.

good luck and i hope you feel better soon!

whosit (used to be Wvrecon432)

 
Old 10-04-2007, 01:08 PM   #7
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Re: Very "Opioid Tolerant" person needs help

Thank you to everyone for all the suggestions.I really do appreciate all the advice being offered.

I did try the patch, but that was 7-8 yrs ago and I don't recall how effective it was.
I'll bring that up w/ my pain doc. during my next visit.

There's 1 BIG thing I HAVE to consider in choosing my pain meds along with my Dr.
Because I'm on disability, and with the new Medicare Part D program,I need whatever pain meds I take to be available in generic form.

An example; my 'generic' Oxycontin R/X costs the pharmacy nearly $800 per month,but with the medicare program,I only have to pay $4.
So, whatever I take, has to be available in generic form.

Do I understand correctly that the Sandoz brand is a generic duragesic,fentenyl patch and is preferrred by those taking it?

Again, thank you for all your comments and help.
Brentski
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Last edited by brentskib; 10-04-2007 at 11:43 PM.

 
Old 10-04-2007, 03:04 PM   #8
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Re: Very "Opioid Tolerant" person needs help

Yes, the Sandoz IS a generic, but I also have the medicare Prescription plan--It will only pay the amount is would pay for the Mylan--In my case--which is 100Mcg size--I get 30 for 3 months and insurance will only pay $775--I still have to pay a $15 co-pay--But since the Sandoz is more expensive, I have to pay like $200 extra every 3 months--Not fair, but they say Mylan is approved so that is all they will pay for--I called!--But the difference is worth it to me--Hope you have better luck!--Roger

 
Old 10-04-2007, 03:09 PM   #9
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Re: Very "Opioid Tolerant" person needs help

Oh--by the way--I had to go to a "mom and pop" pharmacy--CVS is who I use for everything else, but they were not helpful, so I called a non-chain type local pharmacy whom I used to use and they just ask that I call a week ahead so they can get order the Sandoz for me.

 
Old 10-04-2007, 03:28 PM   #10
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Re: Very "Opioid Tolerant" person needs help

Quote:
Originally Posted by whitfield;32***69
Oh--by the way--I had to go to a "mom and pop" pharmacy--CVS is who I use for everything else, but they were not helpful, so I called a non-chain type local pharmacy whom I used to use and they just ask that I call a week ahead so they can get order the Sandoz for me.
I just wanted to chime in with the fact that I go to CVS to get my patch and it is the Sandoz brand. I guess each CVS is different in what they stock.

 
Old 10-04-2007, 03:47 PM   #11
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whosit HB User
Re: Very "Opioid Tolerant" person needs help

I feel for you guys who have to use the medicare program for your meds. they will get out of paying for just about everything they can. You might want to try some kind of supplement insurance or RX help program that is offered by the drug companies. best of luck to you guys and hope everyone feels better soon.


whosit...(formerly Wvrecon432)

 
Old 10-04-2007, 03:56 PM   #12
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IZZY'SMOM HB User
Re: Very "Opioid Tolerant" person needs help

Hey Kathy Mac!
Im on two LA meds. the sandoz 25's and compounded hydro 15 mg. LA, and Im in a good spot. So some docs do that. I could change to the SA, and I may at some point.
I love the sandoz brand. They are generic, and I have my pharmacy order them for me. Actually they always get me some so Ill have them.
I hope you find something that works for you, none of us choose to be in our positions~
xoxoxox,
IZZY'SMOM

 
Old 10-04-2007, 05:38 PM   #13
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Re: Very "Opioid Tolerant" person needs help

Quote:
Originally Posted by brianpain33;32***97
I just wanted to chime in with the fact that I go to CVS to get my patch and it is the Sandoz brand. I guess each CVS is different in what they stock.
I am pretty sure they would get them for me too now, but I have started to like the "mom and pop" place, now even take other scrips just to give them the business--Take Care--Roger

 
Old 10-08-2007, 07:44 AM   #14
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Re: Very "Opioid Tolerant" person needs help

Quote:
Originally Posted by Memere View Post
Hi Brent! I am suprised that your doc has you on two long acting meds: the oxycontin AND methadone. I haven't heard of that before. I was on methadone for about 3 years before deciding that the pain relief I was getting wasn't worth the many hours I that I was spending staring off into space. I'm currently on the Duragesic patch 100 with oxycodone 30mg for breakthrough. I'm not getting the pain control from the patch that I was when I first started using it and I'm waiting to talk to my new PM doc on October 25th to see what can be done. I have found that the oxyccodone works the best for my pain and am hoping that the doc will take me off the patch and put me on long acting oxycontin with the oxycodone for break through. All the best - Memere
The fentynal patch is just like any other opioid med and does have to be increased over time as your tolerance builds. Usually a PM doc will start with another patch (so you would be wearing two) Be careful with the oxycodone however it is very addictive and your tolerance builds quickly with this drug. Good Luck and I hope all goes well with your new doc.

 
Old 10-08-2007, 10:10 AM   #15
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Re: Very "Opioid Tolerant" person needs help

Hi Izzy'sMom!!! Wow!! I have learned something new....you can be on 2 LA meds at the same time!! I'm hurting so much these days...it seems that my whole body is one big raw nerve. Can't wait to see the new PM this month. Take care sweetie!!! Memere - (K'Mac)

 
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