posted
I just started teh Fentanyl patch last week, which I got from my new pain doctor. I like the idea of continuous relief. You can wear it for 3 days at a time.
I was on Norco for pain before, which is just like Vicodin (hydrocodone) but contains less Tyenol. I was up to 10-12 a day, which is no good for the liver. I was becoming too tolerant it seemed, too fast. I had to stop.
I was really excited about the patch-- I know they're supposed to be powerful. I was in terrible, godawful pain and I felt it was my godsend.
I have mostly nerve pain. My insurance denied Lyrica so the patch is one of my only options.
I am on the 50 dosage right now. But I can hardly feel it! How can this be? I thought they contained some powerful opioids, more powerful than hydrocodone.
Does anyone know the conversion for hydrocodone to fentanyl? I can only find Morphine conversion charts online.
Morphine didn't work for me. I felt awful mentally while on it.
Is anyone else on the patch? Do you think the 50 dose is too low? Am I too tolerant and need to move up?
And I know it's not just my nerve pain getting worse due to abx I managed to break my foot (neuropathy-caused fall) and it still throbs-- the patch hasn't come through for that either.
I don't really care about the foot-- it's actually a nice distracting kind of pain. It helps me gauge how well the patch is working.
I don't get high from this stuff at all. So I don't see why I'm on this baby dose! I'm kind of mad at my pain doctor. She's 3 hours away, and my next appointment is a month away.
I'm sick of doctors undertreating due to irrational fears of the Feds. It gets old. I think I should have been given a breakthrough drug too.
Should I double up? Demand a breakthrough med to help?
Help! Posts: 390 | From Oakland, CA | Registered: May 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: I'm sick of doctors undertreating due to irrational fears of the Feds. It gets old.
I have heard from a few doctors that the feds do harass them for dispensing too many pain killers.
No doctor wants to deal with that.
I agree, it is really stupid. It's a remnant from the war against drugs & is proven to be completely inaccurate for people with chronic pain issues.
Very few people who suffer from chronic pain would take this stuff if they didn't have to.
I don't use any patches so I can't help you there.
Can't you just call your doctor during business hours for advice?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I was hospitalized in June for a disc bulge and I was on the patch...it did NOTHING!!!! I think it made my Dr. feel better, but it didn't help me at all!
I was also on morhine, Vicodin, Dilaudid and one other thing...can't remember. It was not helpful, but I also don't know how much I was given since I'm only 17.
I also took Lyrica and that did help quite a bit...I eventually went off of it because it's not approved for Peds.
Posts: 215 | From Student | Registered: Oct 2007
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Ellie,
I'm sorry you're having so much pain.
My teenage daughter has severe chronic neuropathic pain. She's tried manyl kinds of pain relief products.
She started with Flexeril (muscle relaxer)Ultram, Ultram ER, hydrocodone, fentanyl patches of various strengths, oxycodone, and Lyrica and Lamictal. Nothing works well.
The highest patch she used was 50 mcg...the same dose given to dying cancer patients. It had no effect on her pain. The pain doc was afraid to go any higher than 75 mcg...because he didn't want to push her over to overdose.
The last narcotic Rx he wrote was for morphine tablets, but he didn't think it would help her at all.
I tried to fill that Rx recently, but it was expired.
The pain specialist said he would have gone to higher doses of the narcotics if she had some response to them, but she barely has any response to them.
She was referred to a new pain doctor. He prescribed Mobic, which hasn't worked either.
I hope he has something else up his sleeve at the next visit.
It's terrible to witness your child in such pain. I don't know how she deals with this pain. She doesn't have a choice.
Many here with neuropathic pain have to try a comnbination of medication for pain relief. Some get pain relief with Neurontin.
My daughter hasn't tried Neurontin...I think her pain doctor said he didn't think it would help her, since she didn't respond to a similar drug in the same class. I'm sorry I don't know which one it was.
Some get pain relief from massage therapy or from physical therapy. Others get relief with acupuncture...even one hour of pain relief would be welcome.
I realize this doesn't answer your question. A hospital pharmacy would be a great place to ask your question.
Don't double your dose without consulting your LLMD or pain doctor...you might overdose yourself. Talk to your pharmacist or call the pharmacy of the nearest hospital and question them about high end dosages.
If you've exhausted your pain doctor's abilities, ask him to refer you to someone else. If he cares about you, he'll do so willingly.
You may have to go to several pain doctor's before you find one willing to titrate your pain medication to effect.
My daughter is on pain doc #2.
Many pain docs don't treat neuropathy or "fibromyalgia".
Keep a list of all the medications and doses you have tried.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
I'm sorry you're in such pain. My husband and I both have Lyme, and he has a lot of neuro-pain. He also used the Fentanyl patch (50 mcg/hr) with NO relief. I use one very very rarely and get relief for fibromyalgia pain.
The only thing that worked for him for neuro pain was Elavil. 5 or 6 years ago he had illio inguinal neuralgia. We didn't know then that he had Lyme. The doc prescribed Elavil (amitryptaline) in increasing doses at night, beginning with 10 mg and working up to 50 mg.
It worked for a while, but Elavil can cause you not to ever pee again! Not a good thing, and that is one of the listed side effects. But it may work for you.
We know what you mean about the pain doc 3 hrs away. We went thru the same thing. And, if your's is like our's, No, you cannot call him between appointments. Well, you can, but you may wait until your next appt for an answer.
We finally found a pain doc in our city, but he's just a pill pusher. That's all right with us, because we've played the Lyme game for awhile and have taken most pain Rx's. We're on methadone with klonopin (I have been on it a few years now). It works pretty good for most pain (even the neuro if it's not too bad). But we go to other docs when we need medical care.
Keep trying and don't give up. One thing that helps me more than anything with pain is relaxation. I highly recommend it to everyone.
We'll keep you in our prayers.
Posts: 108 | From Florida | Registered: Sep 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Are those Duragesic patches?? IF so watch out,,they CAN make you sicker than a dog.
I tried those once,,,had too heavy of coat on too nice of day outside doing something. I broke a sweat and whamo,,it dumps ALL its contents by tempeture!!
Another time I was doing something in HOT summer sun with a thin see thru shirt on,,,whammo,same thing!!!
Then doc said I could put 2 patches on at once,,,the third day of one I put another on and went someplace and sat in the sun again!!!,,,yikes,,,was THAT a disaster,,got worse than deathly sick.
Course I have SAME reaction to codine so maybe they are related.
One thought,,,IF your body tempature is REAL low,like alot of us,,,maybe they arent dispensing the product out of them!!!
I would NEVER have one of those on ever again!!!
After THIS episode I switched to Neurotin and Tramadol and been happy ever since!!!
I even went off all the neutrotin and most of the tramadol.
I would TRY that combo if you can,,,works pretty well specially if you get up close to MAX doses and it is NON addicting so docs dont get hounded over it!!!
JUST taper off slowly and dont go cold turkey for ANY reason!! Keep plenty of spares on hand in the event of running out on a weekend or holiday or have rx problems!!
Its what I would do,,, being -just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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I know if you call our pain speacialist she might even mail you a new script for a higher dosage.
Yes, she will prescribe you break through pain meds, you won't have to do much demanding as she is very generous and understanding about pain manegement.
Please PM me with any questions. I know it stinks she is so far away...
I know the pain patch worked for me a little bit for sure but I had to give it a few days.
Another suggestion.. I am not a doc and I don't know if it is ok to do this but I had a friend reccommend putting on 2 patches to get the relief.
That could work at least until you see her again to get a higher dosage.
I am sure she will do that...like I said she is very understanding about it.
Posts: 111 | From San Francisco | Registered: Feb 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
See if either of these publications can help
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My mother has been in chronic pain for years. She has overdosed several times because she is also blind and can't see what she's taking. Then the medication messes with her memory and she takes too much.
We have to really watch her, she has the mind of an addict.
Anyhoo. I noticed a big difference when my dad took over and she did well with Duragesic (don't know the mg), she also adds methadone and has special suckers for breakthrough.
Doctor is trying to switch her from from Dura to Fent...she OD'd again over the holidays because she starts one patch before the other is completely depleted. Fent doesn't work as well for her. Dura has had some problems with some people, I guess. That's sad, she got the most benefit from it.
My niece died of an overdose of 100mg Morphine patch on her chest. We don't know if it was on purpose, or just stupid. She was a heroine addict and had just gotten out of jail...they didn't send her home with prescriptions for her bi-polar meds. So, she called one of her "angels".
But, to watch your child in pain is horrific, and I'm sooo sorry she isn't getting relief. Sometimes they need a combo. Because of my family history, I have been against pain meds. But, watching my daughter in pain, I'm the first one to the bottle to get her relief.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
fentanyl worked great for me. they do NOT last three days however.
i tried to get it to work so that i was getting the same amount of meds all the time.
i started out at 25's, then 50's, then alternated the 25's and 50's. but i would leave yesterday's on, and put a new one on each day,
so I always had two on. so as one was ramping up, the other was ramping down. this worked well for a while
my problem was I was trying to be pain free with one med, and I now realize thats not the way to do it.
better to be on the least amount of base med as possible, and then add med for breakthrough pain.
i am now on morphine ER, and vicodin for breakthrough,but I liked the fentanyl better.
Posts: 615 | From maryland | Registered: Oct 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
What Roro said about using more than one drug is important. A lot of times pain specialists will have patients on a non-narcotic constantly with the narcotic for breakthrough pain.
Unfortunately, Lyrica does not sound like and option for you. But perhaps Neurontin would be covered by your insurance? You want drugs that are particularly helpful with nerve pain.
You should also contact the insurance company and find out if there is a way the Lyrica will be covered. Sometimes they require you to try other medications but will then cover the med you want, or they will consider an appeal.
If you appeal, I suggest arguing that it should be considered an urgent care claim. If this is an employer health insurance, then it is probably covered by ERISA law. Under ERISA, they need to process claims faster if they are urgent care claims.
The definition of urgent care claim includes medical treatment with respect to which normal time frame for processing claims cannot apply without subjecting beneficiary to severe pain or suffering.
It sounds to me like your daughter has severe pain.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I had another idea, find out why they are denying Lyrica. Is it because they don't cover the drug at all, or that she does not have a diagnosis that Lyrica is FDA approved for. If it is the second, then all you might need is for a doctor to diagnosis Fibromyalgia and they will cover it.
According to my LLMD, Lyme gave me fibromyalgia. You can easily argue that your daughter has both.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I as well had/have the same problem with pain. The patch is not effective I think for most people.
I am currently on Avinza (slow release morphine)
Norco (but my doc would never prescribe more than 2 a day and I would need 4 to be okay)
Flexeril (muscle relaxer)
Cymbalta UltramER Celebrex
I took Mobic, elavil, lyrica, and so on. My doc seems to be very much against giving me what I really need to help - probably for the issues mentioned Feds and all.
So I have to find my own pain control doctor and not sure who to see. I think the patch is just a waste it either makes you sick or does not work. But you should try to have your doctor add Norco with it and some other break through pain.
I always thought I would go withdrawals or something if I took all my Norco early. Then I realized I am not an addict I just have chronic pain. I can do days without it but will be in debilitating pain.
I find it unfair that the well known docs do not want to help the patients but ,and probably rightfully so, are more concerned about watching their butts.
Yet, a very good lyme doc nearby will give someone Norco like 6 a day who has mild symptoms. Do you go to see more than one LLMD and a pain doctor?
gosh, 5 years into this and it is still a brain twister.
-------------------- I'm not crazy just a little unwell Posts: 152 | From On Horseback | Registered: Mar 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Ellie, Patches are so-so. My husband does the 75's and notices very little relief. He has to take Vicoprofen for breakthrough pain on a regular basis. He also has Oxy IR (instant release) for immediate pain relief when a flare hits hard.
The goal in traditional pain management is to first gain control of "most" of the pain by using a time released drug such as Oxy or Duragesic patches. (By the way, if you are using generics, ask for Sandoz generic, it is the closest to the original Duragesic there is. Walgreens can order it, just push them, they order it for my husband.
Anyway, we do not have "normal" pain. Disease pain is very different than say a herniated disk or pain after surgery. There is very little to be done to get this pain under control.
I have found for myself, a low dose of 10-20mg of Oxycontin, w/ Vicoprofen for break through pain (never Vicodin or Norco, it is garbage in comparison and contains Tylenol) and Xanax for fast nerve pain relief. Lyrica did nothing for me, in fact all it did was help me sleep so I took it at bedtime. I was totally non-functional on it and excessively emotional. Neurontin is up next.
The best reliever of all is getting this damn bacteria to die and then then the toxins out of our body.
Until then - you might find adding ibuprofen helpful and heat (never ice) can help in certain circumstances.
I am the queen of pain and I have tried it all too, I hope you find something that can make most days at least tolerable.
Google conversion tables - they are out there. Just realize a timed release formula will not have the impact that an IR (instant release Oxy)or even Vicoprofen will.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I found an article about pain & fibromyalgia. This may be a reason why some pain remedies don't help... I think there may be some cross-over between fibromyalgia & Lyme symptoms.
"ScienceDaily (Oct. 3, 2007) -- People who have the common chronic pain condition fibromyalgia often report that they don't respond to the types of medication that relieve other people's pain.
New research from the University of Michigan Health System helps to explain why that might be: Patients with fibromyalgia were found to have reduced binding ability of a type of receptor in the brain that is the target of opioid painkiller drugs such as morphine.
The study included positron emission tomography (PET) scans of the brains of patients with fibromyalgia, and of an equal number of sex- and age-matched people without the often-debilitating condition. Results showed that the fibromyalgia patients had reduced mu-opioid receptor (MOR) availability within regions of the brain that normally process and dampen pain signals -- specifically, the nucleus accumbens, the anterior cingulate and the amygdala."
(There's more if you click the link.)
Oxycodone & Vicodin help me. That's interesting about the Vicoprophen. I'll ask my doctor about it. I've tried Neurotonin, Soma, & a bunch of others but the Oxycodone & Vicodin seemed to help me the most when the pain is bad (like everyday...LOL).
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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quote:Originally posted by Aniek: I had another idea, find out why they are denying Lyrica. Is it because they don't cover the drug at all, or that she does not have a diagnosis that Lyrica is FDA approved for. If it is the second, then all you might need is for a doctor to diagnosis Fibromyalgia and they will cover it.
According to my LLMD, Lyme gave me fibromyalgia. You can easily argue that your daughter has both.
I think this is a good idea. Our insurance wouldn't cover Lyrica until we had tried 2 other drugs first.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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