Discontinuing Opioid Pain Medication - My experience

[Laramarie]

Hi Ezer
Thank you for responding back to me. Just so you know ... I am an RN (well in my previous life, before PNE), now I am on disability. I really have suffered so greatly, like so many of us, and I am finally seeing some improvement. The pain has been constant for 3 years and even worse since my surgery with Hibner in December..... But then all of a sudden things changed and now I have awesome days of no pain! I am finally seeing the light! Thank God!

Anyways..... I don't think I am one of the lucky ones that doesn't have withdrawal symptoms bc I did have to decrease my Fentanyl dose about a year ago. I went through horrific withdrawal symptoms on my own. I had terrible creepy crawly leg pains, nausea, sweats, head aches, etc. and these lasted about 2-3 weeks. I went from 50 to 25meq fentanyl patch.
Then the patch all of a sudden did not work anymore so my pain doc decided to take me off of it. That's when I stopped it! I did not have withdrawals...... But I was also started on dilaudid. My pain was so severe that after a few weeks of excruciating pain, I was also started on the Tramadol as well. This was in May 2014. So now here we are August and I am ready to decrease off bc my pain is lowered.
And as I said in my earlier post, I am having lidocaine infusions in early October in hopes of stopping all my narcotics. My doc said he would give me a withdrawal schedule to follow on my last day of lidocaine infusion. Now you have me worried since dilaudid is quite difficult to come off of.
Maybe I should look at a drug treatment withdrawal center? Have you ever heard of anyone needing a center to help with withdrawals? I have been on opioids consistently for 3 years. How long were you on your meds? And how long after surgery were you able to come off the narcotics?

Hope to speak to you soon

Take care
Lara

[ezer]

I understand. So Dilaudid prevented withdrawal symptoms when you discontinued Fentanyl. I just can't imagine discontinuing 25 microgram/hour of Fentanyl (it is something like 80mg/day of morphine). It would be pure torture.

Have you tried to reduce the amount of Tramadol and Dilaudid on your own? If yes, do you feel okay at a lower dosage? Nothing prevents you from starting to taper off slowly on your own especially if you don't need the medication to control pain.

So, I am at a loss regarding your doctor. You should not taper off following HIS schedule. You need to taper off at your pace as to minimize discomfort. It is not a race.

He obviously has never experienced discontinuing opioids himself. I would really advise you to consult an addiction specialist. There is no need to suffer more than necessary. It is all done as outpatient, so no need to enroll in some expensive clinic.
Check the following site to find a doctor near you that is approved to treat patients for detox:
http://www.suboxone.com/treatment-plan

Suboxone (Buprenorphine) is the most logical medication to taper off. It is the opoid with the longest half-life available and has many intrinsic properties that makes it very suitable for detox.

I was on Tramadol (100mg/day) before surgery for 5 years. I was then on Percocet (30mg/day) for 3 years after surgery. But I tapered off using Buprenorphine.

[Stephanie P]

Ezer, thank you so much for sharing your experience of and information about opioids.
After nearly a decade of under treated pain, and indeed worsening pain, I now take IR oxycodone twice a day.
Have you managed to get on top of your PN pain?
Stephanie

[Laramarie]

Thank you Ezer! Very much appreciated. I looked at the link you sent to me but I live in Canada and we definitely don't have the resources that are available to you in the States. We have only one PN/PNE aware specialist here in all of Canada and he is my pain doc as well. It is very frustrating when I can't get appoints for 3 and 4 months just for a follow up and he has no idea what the heck is going on? Doesn't even remember who I am or what TG surgery is or a Marcaine pump is.
I regards to decreasing my Fentanyl..... It was brutal. I read how to do it on the internet! I bought gravol and benedryl. I bought a heating pad for my legs and went in a warm bath 10 times a day. I even had to go to a hotel for a few days just to use the pool and hot tub because my leg creepy crawly's were so intense! (Did you even have those?) They felt like extreme restless leg syndrome for days and days, but brutal in the middle of the night of course!!!!!

I was just talking to my husband and I am going to decrease my dilaudid starting today. I have some old meds (well from May) 3 mg tabs.... So I will take 6 mg dilaudid. I honestly do not need the higher dose. You are right, why not try to decrease now that my pain is lowered. My pain doc has not clue what is going on. Should I just decrease the dilaudid once a day or try to decrease both doses? I am on it twice a day.... Every 12 hours.....?
And when should I come down from my Tramadol?
If it is possible I would prefer to not go on sub's!
Remember I have only been on the didaudid and Tramadol since May. But the other opioids (Fentanyl and a narcotic we have here in Canada called Tramacet. (Tramadol and acetaminophen).
Today is another good day. No pain. Thank you God. This surgery has worked!

Thank you Ezer! How long ago was your surgery? Thank you for sharing your knowledge. I don't know what I would have done without Hope. It has provided me with so many valuable tools and has lead me to surgery which has brought me to having my live back!

Lara

[Laramarie]

One more thing Ezer (sorry),
I want to explain about the suboxone..... I just want off this stuff so bad! I don't want to start something else. I feel terrible on these opioids. My family physician just did blood work on me and is worried I may have some mild liver failure. Just waiting for the results. I am tired, and itchy, and nauseous.
I am pretty strong willed and I can overcome this! With the proper tools and knowledge, and a little help from benedryl, I think I can do it. Lol
I don't get a buzz from the meds, I never did, I hate the drugs. But I needed them, to get out of bed, to take care of my 4 kids! I needed them post op, I couldn't have lived without them, I honestly would have killed myself. The pain was suicidal.... The pain post op was worse than before surgery! I thought my pre op pain was 10/10. No way! It was maybe 7-8. Cause MAN post op I lived in a 10/10 for 7 months!!!!! We really suffer with this terrible disease.
But there is Hope. I prayed every day...... I walked everyday and did everything that I was supposed to do. I realized that physio flared me. I stopped everything that flared me. Then finally I turned my corner. Thank you Dr H. You saved my life. Thank you to everyone on Hope that kept encouraging me that surgery takes time...... Not to rush things, take it slow, take it easy, don't worry. Thank you all!

[ezer]

Lara,
The fact that you are in Canada makes things easier regarding Suboxone I believe. Any doctor can prescribe it in Canada. In the US, only trained doctors are allowed to prescribe it for detoxification.

So, I will try to answer your questions the best I can. I am not a doctor but an engineer so please confirm with a physician.

After 12 weeks on opioids, you are addicted. You have been 3 years on opioids so I am afraid you are what is called an opioid-experienced patient. The fact that you have switched opioids in May is not relevant unfortunately. I wish I could say otherwise but the fact is that your brain has been flooded non-stop for 3 years and is not producing endorphins.
You will go through withdrawal and lingering post-acute withdrawal symptoms for months unfortunately.

I understand not wanting to go on suboxone but still consider the following:
Cons: Another transition. Induction during an office visit.
Pros: Long half life so a slow and steady taper is possible without drama. Buprenorphine does not give you "highs". You feel absolutely normal on it.

Regarding what to discontinue first. Solely based on half-life, it is probably easier to reduce the dilaudid first while tramadol with a much longer half-life (7 hours versus 2 hours for dilaudid) fills the gaps so to speak. But against, that is my take based on having been on tramadol. Your doctor should have the final word of course.
For your taper, it all depends how comfortable you are.

Here is mine. I went too fast at the end:
2 weeks 10microgram/hour
2 weeks 5microgram/hour
1 week 3.5 microgram/hour
1 week 2.5 microgram/hour
1 week 1.2 microgram hour
1 week 0.6 microgram/hour

I had 2 PNE surgeries. One in 2010 and the other one in 2011. Both failures.

[Laramarie]

Thanks Ezer for your input. I value your personal experience. I am not sure that I am following your tapering scheduling? Could you explain? Anyways.... I decreased my dilaudid today and had an increase in pain for about 4 hours, not severe, just bothersome. No other symptoms. I was also a little moody. I am going to keep on decreasing, just slowly and steady. I can do this!!!!

Take care
Lara

[Laramarie]

Ezer
I am so sorry that your surgeries failed. That is heart breaking. It is amazing that you don't need anything for pain..... You are so very strong. I read your post that you had to discontinue the opioids due to a blood disorder. Did you ever figure out what caused your PNE? I woke up from a gynaecological procedure in severe pain and that's what Dr Hibner figured caused my entrapment. This is a life changing condition, that's all I can say.

Lara

[ezer]

Thanks Lara. Regarding the taper schedule, I was not on Suboxone but on Butrans (Buprenorphine) patches (the patch lasts 7 days). So for the first 2 weeks I was on a 10 microgram/hour patch. The next 2 weeks on 5 microgram/hour patch etc...

Week 1 & 2 10microgram/hour (equivalent to 20mg/day of morphine)
Week 3 & 4 5microgram/hour (equivalent to 10mg/day of morphine)
Week 5 3.5microgram/hour (equivalent to 7.5mg/day of morphine)
Week 6 2.5microgram/hour (equivalent to 5mg/day of morphine)
Week 7 1.2microgram/hour (equivalent to 2.5mg/day of morphine)
Week 8 0.6microgram/hour (equivalent to 1.2mg/day of morphine)

Ideally, you want to reduce by no more than 20-30% each week. I went much faster than that. Clonidine, a blood pressure medication can help with withdrawal. Maybe you should go see your doctor and discuss that option before starting the taper. Valium also helps but you have to be careful to not get addicted to those so it has to be used very sparingly. You do not want to trade one addiction for another.

Due to the 90% relapse rate from opioids, many addiction specialists suggest staying on Buprenorphine for life. It was definitely suggested to me as a very good option. I would not consider it. So far I have been off opioids for more than a year. I was told however that from now on I have to take opioids for 3 days at the absolute maximum following a painful medical/dental procedure.

I still have some very short bouts of restlesness and opiates cravings. They last only a few seconds but they are there. It doesn't matter that we take it for pain only, that we are not addicts, that we are "only" dependent etc... At the end of the day, you just have to remain vigilant.

A 90% relapse rate is no laughing matter.

Dr.Junig a famous addiction specialist that has a past addiction history (that was only 8 months long) and that was sober for 7 years relapsed while vacationing in the Caribbeans. He simply stumbled on a pharmacy that was selling Norco OTC (prominently displayed) while walking the streets of the local town. It reignited something in his brain. He is on lifetime Buprenorphine now.

[river133]

Ezer, I read your post with great interest. I have been opiate free since June 11,2014. Seems I still have a way to go .. I did experience no or very little sleep for 10 days. Felt absolutely exhausted for the first 8 weeks, I just started walking 20 min.daily.i am so happy to be off . I take 3000 of gabapentin for pain.
Interesting fact. A test was done with someone with and without taking oxycontin.
Each person was asked to put their hand in freezing cold water. The person on the oxycontin had to remove her hand much before the person that was not taking the drug. The drug tells your mind that it is helping the pain when, in fact it is not.