me and my CP....

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uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 10/18/2009 3:05 PM (GMT -7)   
 
Okay, I have been here at HW for a while now...and I have posted about so many things, good and bad...and I appreciate all of my family here giving me advice and sending well wishes... So, here I go again.
 
This CP is just getting worse and worse... The pain meds I take seem to be having very little effect anymore and I really don't know what to do.  I go back on the 28th and will discuss switching pain meds.....again.  I have read that a lot of CP patients say that their Dr. switch their meds around faithfully....just so they don't get too tolerant... Mine has never done that.  The only time they change anything is if I ask....a lot.  So, I take Methadone 120 mg. a day..and Oxy IR 30 mg. 4/day for BT pain..I know, you already know that....but what in the world could I even change to?
 
As you all remember I tried, very unsuccessfully, to change to Morphine from the Methadone.... the last visit I mentioned changing the Oxy IR and she said to take Tylenol or Advil with it to "BOOST" the effects...(never heard of that) and if it didn't help we could change it next time....ok...what's next?
 
I know that everybody here is taking something different then the next.  So I know that you have to have some ideas for me...
 
I am so sick of these meds working for a few months then (&^*^**&).....they stop.  It makes for a very unhappy ME., So?  What should I consider?  I always have suggestions for the Doc, never ask for something specific though...so give me an idea my faithful CP family.... I need help.
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/18/2009 3:57 PM (GMT -7)   
Rhonda,
I wish I had ideas for you, but it really is something you have to discuss with your doctor. Each of us is so individual, plus your total medical history is part of it.

Did you try taking the OTC meds like tylenol or advil? Remember, many of our other meds. (percocet, for example) are oxycodone with tylenol. So what you take doesn't have the tylenol, and it might help. I know sometimes for me taking a couple of advil helps, although because of stomach issues I don't do it often.

If you haven't tried these suggestions from your doctor, why not see if it helps before your next appointment?

But it is frustrating for all of us because it seems we either can't find answers or they may need to be changed over time. I wish I had a magic answer for you!

Hugs,

PaLady

Boxerlover
Regular Member


Date Joined Dec 2006
Total Posts : 274
   Posted 10/18/2009 4:10 PM (GMT -7)   

I do the same as PAlady, I'll take ibuprofin although not often as I can't really take anti-inflams because of the stomach.  With what you are on, I wonder if the fentanyl would help. For me it's all I've ever been on, but for me it works great.  Do you notice if it's more the LA or the BT med, or both?

Melissa


OnTheRocks
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 10/18/2009 8:28 PM (GMT -7)   
120mg of methadone is a VERY high dose and a pretty good indication that you need to switch to a new daily opioid. As for the oxycodoneIR 30mg, that's a pretty powerful dose and I'd recommend changing your daily med before you mess with BT pain meds. For the meantime, there are a few things you can do to "potentiate" or make your current meds more effective. Drinking tonic water is an easy way to increase the duration of opioids. It contains quinine, which inhibits a few enzymes for a period of time that are responsible for breaking down and eliminating opioids from the body; the result of which causes the effects of the medicine to be longer lasting. Plain white grapefruit juice (not juice cocktails) works very much in the same way as quinine. To amplify the pain-killing qualities of opioids, Alieve (naproxen) and other NSAIDs enhance analgesia.
Dx: Supratrochlear nerve obstruction/compression & severe migraine.

Rx: Opana ER, Transdermal Scopolamine

PRN: Zofran, Opana IR, Actiq


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 10/19/2009 11:02 AM (GMT 0)   
Hi Me, So sorry to hear about your pain> CP sucks!!! All I can say is that the others have given you good advice. I take the same meds as you only in lower doses and add one tylonol to my oxy dose when the pain gets real bad. Like the others, I have a history of stomac problems and even ulsers so I can't take those wonder drugs > the anti inflamitories, I wish I could as they work better for me than the opiads I take. Every once in a while when it gets unbearable, I will take an ibuprofen and WOW! I can't believe how well it works! I would be careful w/ the tonic water & grapefruit juice though, it sounds like a good idea but w/ your high doses I'd talk to your doc before messing around w/ it, could be dangerus! Good luck w/ your doc and changing meds.
Big hugz to you my dear friend!
Pete
When I was young, I broke almost evry bone in my body and I'm paying a heavy price now but I'm still here and so glad to see my two sons grow up to be fine young men. They are both serving in the US Navy, My oldest is serving on a aircraft carrier but is currently in advance radar school. The other is a Asault Ship "The Jaws of the Fleet" somewhere in the Persian Gulf w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops! 


Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 10/19/2009 11:55 AM (GMT -7)   
Hey Uniquelyme,

Like others have said, every med works diffrently for all of us. Like for me, I've been through them ALL, methadone, oxycontin and oxycodone, fentanyl patches and actiq, Mscontin and Kadian, and the only med I've found releif with was Suboxone, a med that isnt even FDA approved for pain and this was after 8 years of searching and trying diffrent combinations and doses.

But one I have heard great reviews about but never tried myself was Opana which comes in both immitiate and slow releasing forms. I hear the pain releif with this med is awesome, but I wouldn't know. But if you have insurance then I would look into what they will and wont pay for, sometimes you have to try out cheaper meds before they will approve the more expesive meds. And if you dont have insurance, then I would look into what you can afford as most pain meds are very expensive. Since I'm on disability and get medicaid, they tried to push morphine and methadone on me, and finally after trying those and letting them know it didnt work would they pay for the more expensive meds like the fentanyl patch or Kadian. But I hate nothing more then getting an RX for something you think will help and getting to the pharmacy and finding out it's not covered and they want a million dollars for the meds.

-Carmen

Carmen~*~*~Chronic Pain Moderator

DX-Chronic Pain due to two freak car accidents, Pancreatic Divisum,Fibromyalgia, Asthma, Depression w/anxiety, Migraines

Meds- Suboxone 16mg for pain, Cymbalta 60mg, Lyrica 50mg, Imitrex 100mg PRN,Ibprofen 800mg PRN, Ventolin Inhaler PRN, Visteril PRN

 


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 10/19/2009 12:48 PM (GMT -7)   
Not sure which meds are affected by grapefruit but I know my father-in-law has to stay away from it because it will affect the way his meds work. I think there are quite a few drugs that are affected by grapefruit. These are not meds for pain but for other ailments. I'm sure you can find a list on the world wide web regarding this.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 10/19/2009 6:20 PM (GMT -7)   
 
Wow!! As usual I am not disappointed by the responses...I knew I'd get some great advice.  So, where to begin?  I know that when I was researching Methadone I read NOT to take grapefruit juice with it...that it would send you into WD's fast!! I haven't heard of the tonic water thing... That scares me a bit.
As far as just changing the Methadone...that scares me..I tried to change to Morphine and that was a mess...I was given a script for Opana once when it was hard to find Oxy IR...they wanted $700 for them...of course I didn't have insurance then.but OMG!!!  I can only imagine what the ER kind costs
 
The Oxy IR's may actually be helping, it's just hard to tell because the Methadone isn't cutting it anymore.
 
I did ask about Dilaudid and she told me that it was for Cancer patients only...same with Fentora.  I have tried MS Contin one time...can't really remember if it worked or not...can't even remember why?
 
I am just so tired of the Hit and Miss of it all...ya know?  I would love to find something that really works and keeps working for a long long time...
 
I do take Advil with my pills, I just can't do it very often because of my stomach problems... I also have to worry about acid reflux..that's fun!! confused
 
I guess i"ll just have to talk to the Doc on the 28th and see what she recommends...if she does at all.  I'm afraid that she'll say that she can't help me anymore if I complain... we are always looked at funny anyway, so who knows what she'll do..
 
Thanks everyone.
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/19/2009 8:21 PM (GMT -7)   
Jag,
Good call on the grapefruit juice. I wouldn't drink it anymore even though I love it because it seems to interact with so many things.

Rhonda - remember you and your doc have to make these decisions. I know you know that, and I know it's not easy. Something always leaves me suspicious when a doctor says a certain pain med is "only used for cancer". Prejudice against CP patients I guess is the simple way to put it.

Anyway, I hope you can find something that helps you more. I would guess on TennCare things like a pain pump wouldn't be approved for payment, but then I'm not sure.

Hugs,

PaLady

Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 10/19/2009 11:18 PM (GMT -7)   
Have you thought about the pain pump?? I would think after being on such high doses of pain meds and them not working, then it maybe time to go the next step which maybe the pump, atleast thats what I was told by some doctors.

And I would be weary of trying the fentayl patches, I had such bad experiences with them cause of them not sticking or being recalled so many times. Even the makers of the Duragesic brand har remade the patch so the meds is mixed in the sticky stuff like the Mylan brand so that might make it a bit better, but that's only if your insurance would be willing to pay for the brand.

What about Oxycontin, is that one you've tried yet? I would think that would be a good choice since your already tkaing oxycodone for breakthrough pain so you have experience with that med.

Methaodne is an odd narcotic that cant be mixed with alot of stuff or it can cause withdrawals. Like when I was on methadone, I would take Fiorcet for my migraines, and I found out that the barbituate in the fioricet causes withdrawals for people on methadone, and I found that out the hard way. And their's not much information on all the stuff that shouldnt be mixed with methadone. It took alot of searching to find information on barbituates causing withdrawals for people on Methadone.

But I have heard of people drinking grapefruit juice and taking tagamet to make the narcotics more stronger, but I've only heard this from people misusing their pain meds. I know for Suboxone their's certain meds I cant take, like antifungals and some other weird stuff that can make me go into withdrawals.

But i know no matter what, that switching from Methaodne to any other narocotic will cause withdrawals from the methadone. I went into withdrawals when a doctor switched me from methaodne to the fentanyl patch, so he had me taper with the methadone and slowly raise the patches dose but even then I still was very uncomfortable for a month. So no matter what, you may be uncomfortable for a while til the methadone completly leaves your system, and the thing about methadone is that it gets stored in your fat cells and takes forever to leave the body. Thats why you hear about people tapering off of methadone they get from a methadone clinic have a very hard withdrawals from it and it can take up to a year for them to feel somewhat human again. Methaodne is a harsh med to stop for pair or opioid dependence, but yet it's great in what it does. I was up to 300mg plus daily for chronic pain, so maybe just going up a little higher in the dose maybe all you need.

-carmen

Carmen~*~*~Chronic Pain Moderator

DX-Chronic Pain due to two freak car accidents, Pancreatic Divisum,Fibromyalgia, Asthma, Depression w/anxiety, Migraines

Meds- Suboxone 16mg for pain, Cymbalta 60mg, Lyrica 50mg, Imitrex 100mg PRN,Ibprofen 800mg PRN, Ventolin Inhaler PRN, Visteril PRN

 


OnTheRocks
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 10/20/2009 8:14 AM (GMT -7)   
Well, it doesn't cause withdrawals, per se. It's an old opioid that is physically taxing and can interact negatively with many drugs. Anything that further slows down the CNS, like alcohol or other pain meds, can amplify the effects of methadone to a dangerous and sometimes lethal level. You also have to be careful due to the fact that methadone stays active in your body much longer than virtually any other opioid.

As for the grapefruit juice, there are some heart meds like propranolol that interact with it. Besides prolonging the effects opioids, I've never heard of health hazards stemming from it. Again, that's just been my experience, I'm sure it could be different for others.

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 10/20/2009 1:59 PM (GMT -7)   
 
 
Hello....and yes I have thought about the pump...I have been scared of it though.  Of course I don't know much about it so I guess I should research it first.  My appt. is next week so I'd better come up with something to ask about.  The Fentanyl Patch...I have tried it before...before i was put on Methadone.  It caused me to have a rash and I couldn't keep them on.  So I gave the remaining back to the Doc and he put me on Methadone.  Haven't tried Oxycontin...it's way too expensive and TennCare doesn't cover it.  I think they cover the MS Contin...is that the same thing just generic?  I have no idea.
 
I agree about the Dr.'s saying that certain meds are for Cancer only...that is not really true.  I think that certain Docs just don't want to give it to you...no matter how long, or how bad your pain is.  I know that other CP patients are given Dilaudid and Actiq and Kadian...my Dr. won't give that...says it's for the big C....
 
I know that Morphine is a big "no" for me...it didn't work.  So I'm not left with much.  I think I am on the highest dose of Methadone that my Dr. will give...I did ask about increasing the dose and she said no.  I am terrified of changing from Methadone due to WD's...they are not fun...but I may have to bite the bullet and try it anyway...if they titrate me correctly it may not be that bad...so what's next for me?  I don't know..the pump?, taking me off the Methadone?, trying Oxycontin?
 
I guess I'll find out next week....

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/21/2009 3:38 PM (GMT -7)   
 
   Dear Rhonda,
 
     Good evening *warm huggs* How are you doing today? Any improvments? I hope you have a chance to relax somewhat, the pain must be really wearing you out! Any case, I wont chat long I just wanted to send *warm huggs* And I sure hope you and your doctor can come up with a better way to battle your pain!!
 
*huggs*
   dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


OnTheRocks
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 10/21/2009 4:04 PM (GMT -7)   
uniquelyme said...
...so what's next for me? I don't know..the pump?, taking me off the Methadone?, trying Oxycontin?


There's a relatively new drug on the market called Opana. I was on methadone for awhile, but had to stop after severe side effects (mainly pitting adema and fluid retention in the lungs). My doctor then put me on 20mg of Opana and it's worked like a charm. Besides some nausea (all opiods upset my stomach), it's provided better pain relief with the least amount of side effects than any other pain med I've tried. You should probably tell your doctor that the methadone is no longer satisfactory and that you'd like to talk with her about considering an alternative. Hope you find something that works for you!

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 10/25/2009 6:30 PM (GMT -7)   
 
 
Gcoin,
It's funny that you mention Opana...I have been reading alot of posts about it lately and I have been wanting to talk to my Dr. about it...
 
Do you take Opana ER?  What a dumb question...of course you do if you changed from Methadone....So?  Tell me all about it.....How much Methadone were you on?  How much of the Opana ER were you started on?  Did you have to taper the Methadone first?
 
Sorry about all the questions, but my appt. is in 3 days and I need all the info. I can get..
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 

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