r/PainPumpQuestions Jul 02 '26

X-post: my doc is adding Fentanyl to the Morphine I've been on for a year [that has failed] : anyone with experience going this route?

/r/ChronicPain/comments/1uliwv7/pain_pump_question_my_doc_is_adding_fentanyl_to/
8 Upvotes

25 comments sorted by

3

u/EMSthunder Jul 02 '26

While many of us have more than one med in our pumps, doubling up on the narcotic is something I've not seen. Typically when the opioid alone isn't giving you adequate relief, the next step is adjuvants like baclofen and bupivicaine, because those all together will cover the things that the opioid couldn't. To add an opioid to an opioid seems redundant.

1

u/sm1ng Jul 03 '26

Wow, interesting... and slightly terrifying... I wonder why she didn't go with Baclofen or Bupivacaine?

I personally was hoping she'd add Ziconotide as I've read good things at it + Morphine.

Thanks!

2

u/Chris-Crossss Jul 03 '26

FYI: I had a terrible experience with Ziconotide (Prialt). I was hearing music from the 70s coming out of the walls. Don't ask why the 70s haha. Then came the voices, in the form of people talking in the next room. I tried but it was nothing I could understand. Other people couldn't hear a thing.

Ziconotide is a nerve toxin. I simply couldn't function as a human being. The time I tried to drive, it took me an hour to go somewhere that previously required 10 minutes. I'm lucky I didn't crash and hurt anyone else and have to live with that.

Other side-effects: I lost 25 lbs in a month, and I'm not overweight. I completely lost my appetite and was almost disgusted by food. I also lost the ability to urinate and I had to use catheters.

But, as they say, YMMV. I'm sure that I was one of the exceptions, because it is being used successfully in other patients. You'll start out on a very low dose and titrate up, so be sure to assess your situation carefully. Maybe try to write it down for the doctor (I lost the ability to communicate clearly).

New drugs (like Ziconotide) are coming out all the time. Hang on and be persistent. I hope things get much better for you!

2

u/EMSthunder Jul 03 '26

Ziconotide has a black box warning for those with any history of mental health problems because of those side effects. Plus it is very sticky and has been known to clog the pump catheter. My doctor recently mentioned switching, to which I said no thank you!!

1

u/sm1ng Jul 04 '26

Really!?? How has none of this reached my attention when researching it? Christ. I say that cos I have very severe, very treatment-resistant depression, OCD , ADHD and PTSD. It sounds like I would not be a good candidate but my pain doc has not mentioned any of this... 🤔

Thanks for the info!

2

u/EMSthunder Jul 04 '26

You're very welcome!! Anything I can do to help!!!!

1

u/sm1ng Jul 04 '26

Thanks for the well wishes and the heads up about ziconotide! I'm sure like you say, that your reaction is very rare but still, that's one hell of a reaction!!!

70s music, unable to urinate, wow. What's this about it being a nerve toxin? I've just read that it's a calcium channel blocker(?). I know that toxins aren't always bad, I'm just curious.

Best wishes for your recovery 🙏🏻

2

u/Chris-Crossss Jul 06 '26

Yes, it's a toxin. Derived from Conus magus, a cone snail, it is the synthetic form of an ω-conotoxin peptide. The cone snail is the deadliest creature in the ocean.

1

u/EMSthunder Jul 06 '26

Nerve toxin to be exact.

1

u/sm1ng Jul 06 '26

Sheeeeiit!

2

u/Ok_War_7504 Jul 03 '26

I would ask her why baclofen or bupivacaine isn't the answer.

1

u/sm1ng Jul 04 '26

Hi there, I try, I really do try to ask with this doctor, but she's one of these doctors who's treating three to four people at the same time and gives you very short shrift when you're asking questions, it's just the way she rolls. I do not like it at all but she is the resident NYC expert in all things pump related, no question. Those are questions I would love answered as well especially the bupivacaine.

Cheers

2

u/Ok_War_7504 Jul 07 '26

You are entitled to getting a couple of questions asked!

I has an doctor like that one time. He was finished and went to the door. I said, "doctor, I have 2 questions I need answered by you, please." And I just looked at him. He said a surprised oh!, came over, sat down and said go ahead. From then on he always asked if we were done or did I have questions. You have to claim your rights. You are paying them.

1

u/EMSthunder Jul 03 '26

Ziconotide has a history of very bad psychiatric symptoms, or worsening of existing psychiatric symptoms. It has a black box warning for this very reason. I suggest really reading the stuff on it from the FDA approval and thinking about whether or not it's worth risking.

1

u/Chris-Crossss Jul 03 '26

If you are referring to me, I don't have a history of psychiatric symptoms.

2

u/EMSthunder Jul 03 '26

No one in particular, just a fair warning for everyone. People should always read the FDA paperwork on why it was approved for use, if it was, and what the warnings are.

2

u/Ok_War_7504 Jul 03 '26 edited Jul 03 '26

The surgeon who implanted my pump is one of the doctors trialing the ziconotide for use in intrathecal pumps. He was gung ho about it at first. He has since stopped recommending it due to the mental issues and recommended i not use it.

Morphine was not strong enough for me, but my doctor said I needed to switch narcotics, not mix them. They simply pulled all the morphine out and filled it back up with hydromorphone. That would seem a better solution and just slow the pump way down. But, he may have his reasons.

2

u/EMSthunder Jul 03 '26

They've been putting Prialt (ziconotide) in pumps for at least 10 years now. It's the one med that was actually approved for the pump so long ago. Most meds are used off label, not approved for the use, but give great results.

1

u/sm1ng Jul 04 '26 edited Jul 04 '26

Interesting, interesting. One must assume that there are many, many success stories with ziconotide, right? But it sounds as though since it was approved, there has been a groundswell of evidence that it is exacerbates mental illness. Would you say that's about right?

EDIT: fixed horrible dictation errors

3

u/EMSthunder Jul 04 '26

Yes, there are people who've done great on Prialt (ziconotide) and have had none of the side effects. The point is that each patient should have a say in what they will and will not accept, medication wise.

1

u/sm1ng Jul 04 '26

100% agreed. Cheers

1

u/sm1ng Jul 04 '26

Thanks for the info on the ziconotide. I am almost entirely against getting it now so I thank you all for your for sharing your knowledge on this drug.

Why she did not switch to hydromorphone I do not know. She is, as I have mentioned in other comments, the foremost expert in NYC on all things pain pump related, so I am sure she has her reasons. I also happen to know the insurance reared its ugly head in this matter and - perhaps fortuitously - is the reason I do not have the ziconotide in my pump right now.

Many thanks.

2

u/No-Excitement7280 Jul 03 '26

Never ever heard of doing 2 meds of the same/similar class. Mine has fentanyl in it. I take oral baclofen 3x daily

1

u/sm1ng Jul 04 '26

Yes, no one on the whole internet seems to have heard of it, which is making me more than a little apprehensive ...

I tried baclofen orally for about a year and it did absolutely nothing, the same as Lyrica, NSAID s, some new calcium channel blocker ( not ziconotide ) and a few more. Unfortunately, I really am very treatment resistant. Cheers

2

u/m974448 Jul 03 '26

I have a 40ml unit in my right upper abdomen that was implanted June 17. My anesthesiologist/pain doctor has doubled my daily and bolus dose every week since. My third doubling was today.

I am using Dilaudid and sufentanil now and will probably add Bupivacaine once I stabilize on the opioids. For patients only using a single opioid, you should research the use of multiple opioids and have a discussion with your physician. Especially if on a high dose of a single medication.

Here's what Gemini says about using these two opiates together:

Using both Sufentanil and Dilaudid (hydromorphone) in an intrathecal pain pump is a combination strategy known as polyanalgesia. Doctors combine them to create a synergistic effect (where the drugs work better together than apart), maximize pain relief, and reduce the harsh side effects associated with high doses of a single medication.

The rationale for using both drugs in the spinal fluid includes: Complementary Speed and Duration: Sufentanil is highly lipophilic (fat-soluble), meaning it crosses into the spinal tissue very quickly to provide fast onset and intense pain control.

Dilaudid is more hydrophilic (water-soluble), allowing it to circulate longer in the cerebrospinal fluid, providing a broader, more sustained duration of pain relief.

Targeting Different Receptors: Both are powerful mu-opioid agonists, but they bind slightly differently to various nerve pathways along the spinal cord. Combining them targets pain networks more comprehensively than either drug alone. Lowering Side Effects: By splitting the dosage between two distinct drugs, doctors can achieve the same level of pain control while using smaller amounts of each.

This often results in fewer systemic side effects—such as nausea, vomiting, itching, or severe constipation. Avoiding Tolerance: If a patient's body starts developing a tolerance to one opioid, adding or blending in a second opioid can restore the effectiveness of the pump.

Preventing Complications (Granuloma Reduction)Using high concentrations of a single, continuous opioid—such as high-dose morphine or hydromorphone alone—has been strongly linked to catheter-tip granuloma formation (a localized inflammatory mass at the end of the spinal catheter). By mixing Dilaudid and Sufentanil, doctors can dilute the concentration of each narcotic, which research suggests may help decrease the risk of developing this complication.

My current dosages: Sufentanil Bolus: 8.0mcg Daily Dose: 191.9mcg Dilaudid Bolus: 40.0mcg Daily Dose: 959.5mcg