Dilaudid in pain pump, Doc says cant go higher?

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WakeUpDead
New Member


Date Joined Apr 2007
Total Posts : 12
   Posted 8/31/2009 9:49 PM (GMT -6)   
HEllo, its been some time since I have been here, I kinda forgot about it and just dealing with daily pain like everyone here.
 
Anyhow, I have the medtronic pain pump and last year I got my meds switched from morpine like 9mg a day. to Dilaudid now at 4.2mg a day.
 
Now I have told my Doc its not working as well, because well its been a year plus adn I know my body is use to it. So my pain levels are up high, 8-9 most days Im back to being in bed at least 18hrs of the day, my family again is suffering becaus of it, cant take care of home kids dogs, just cant do anything.
 
So I claled last week and said I need to come in iom in pain and I want him tio turn it up. They call back and said the Doc wont see me until my appointment, in 42 days, refill time. Last time I was there he also wouldnt turn it up and just gave me a Bolis dose, real quickl like .41mg in 30 sec. Had a good night sleep that night. But told he told me then I was again at high levels of meds adn he really couldnt turn it up much more.
 
So to all you out there does 4.2mg of Dilaudid in a 24 hour time period seem like alot in a pain pump?
 
Im so tired of this, I went through this on my morphine prior to changiong to Dilaudid and thought the Dilaudid wouldnt be like that. So am I at a high dose or is he full of it?
 
Im at the point where my pump is due to be changed out for a new one sometime in the next year, Im wondering if i should jut do away with it all and go back to patches and pills, not my first choice but seems like i had more freedom with them and sure was able to get what I needed for pain.
 
I just dont know? Is anyone using anything stronger or is there anything stronger? Any other drug that could be used in pump also with my Dilaudid that would help?
 
Im getting very frustrated and very down again about my life long struggle in pain again! 27 years of hell tends to wear you down!
 
Well its nice to be back with you all, the support here is great, we are the only ones that truly understand Pain and the hell it can unleash on ones life!
 
Thank you guys and gals!

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 8/31/2009 10:23 PM (GMT -6)   
Hi Wakeupdead:

I don't know what your concentration is, but I my concentration is 20 mg per ML, and I get 18 mg of dilaudid per day, and 13.5 of bupbivicaine (a local anesthetic). I am currently facing the same exact problem as I have not had any kind of increase in 3 years in my pump or oral meds. My doc keeps telling me that I am maxed out. I have been looking into the possibility of changing pain management doc's, which kills me because at one time this doc was fantastic. Something changed in him a couple of years ago, and he just wants to leave everything "status quo" regardless of the fact that my pain is at a 9/10 every day, and I often get hospitalized because it gets so bad.

It is not easy to change doc's because a lot of them will not take on patients who already have pumps from other doc's, I'm not sure why, but I have been told this several times.

The nurses that come to my home to fill my pump have told me that they have patients on as much as 40 mg per day, and there are a lot of different meds that they can put in the pump along with or instead of the dilaudid.

Hopefully Straydog (Susie) will see your post, she is extremely knowledgeable about pumps and will probably have some good advice for you.

Keep us updated, and I will do the same.

Lorie

WakeUpDead
New Member


Date Joined Apr 2007
Total Posts : 12
   Posted 9/1/2009 12:26 AM (GMT -6)   
25MG/ML .175mg/hr 4.2mg/Day

no Oral meds at all, he wont let me have anything like that. he also wont add other meds in the pump and I too have been looking at other docs to see, but only two more near me, and when I say near me I mean with-in 2hr drive.

I have talked with medtronic and they could care less they just say its up to the doctors and they wont say what limits there are. 40mg wow, if i only could have 5-6mg I would be fine! so At least I know you can get higher if your on 18mg. dam i dont even want half that.

I truly believe these docs are scared of the DEA, they are afraid to draw attention and the DEA can be real hard on them if they do come down on them. The DEA should go to medical school first before they tell doctors what they can and cant do. And doctors should be standing up for our rights but they dont.

Anyhow thanks for the relpy, I feel like I have some ammo next visit, just knowing Im at such a low level and he is acting like Im at 40mg is stupid.

I truly want this out of me if this is it, I cant live this way, I got it thinking I would feel better but 5 years ago I felt better than this. I may just tell him turn it up or take it out! I have a family doctor willing to take care of my needs if he truns on me so I dont care! Already talked with him and he has no problems getting me scrips.

Other than that, I could just move to a compassionate state like CA, OR, or CO and get the medicine that 5 doctors have said would help me deal better with my nerve pain and I wouldnt need as much of the heavy drugs like Dilaudid, at least I wouldnt need it turned higher. But my state has no laws for that so Im stuck right now!

Anyhow thank you very much, Ill await more replys, and Straydog too, since you think she would know more!

Thanks
 8 Back surgeries: 1996 to present!
3 Disks removed, Spinal fusion, Screws, and Rods.
Cronic Pain, Numb feet, Muscle spasms, Leg cramps, Nerve dammage and Major Back Pain.
 Medtronic Pain Pump implanted: Feb.05!
 SSI Disability file dates: Nov.2001 and Dec.2004! SSI disability Judgment Date: 4/11/07 Won! 
 
 
 


Roni123
New Member


Date Joined Apr 2017
Total Posts : 8
   Posted 4/11/2017 7:03 AM (GMT -6)   
I too have a Medtronic pain pump, first with Fntynal, now 3 month
With dilaudid pain is 7/10, pain doc ignored very call made weekly
Finally, on my scheduled appt. he raised minimally;i dont understand the levels discussed above I'm on 1.198mg mg day
With zero relief now he wants me to wait yet another 10 days, to ad
A numbing agent, what I dont know? Also have 2 sujuries with rods screws/ fusion arthritis, my Doctor is NOT RESPONDING TO MY NEEDS, LOST AND QUALITY OF LIFE IS ZERO, can someone advise me??? Went to another pain mgt Doctor from the Spinal Institute he was great and wanted to do a number of tests, he is 45 minutes away and I cannot handle the drive, so hence back to my Doctor hoping he WOULD HELP ME.....TO NO AVAIL......I NEED HELP THANKYOU FOR ANY FEED BACK Roni123

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14328
   Posted 4/11/2017 7:34 AM (GMT -6)   
Hello Roni & welcome to Healing Well. My first question is how long have you had your pump? If you are fairly new to the pump it sounds like you are still in the ramping up process to get you to the proper dose in it. Usually the dr will increase the dose anywhere from 10-20% max during this process. Depending on the dr some will not increase it 20% each time.

I know you have Dilaudid in the pump & say you get 1.198mg in 24 hours. You need to ask your dr what is the milligram of Dilaudid. Such as do you have 5mg or what? Just like with orak meds there is a mg listed. You should be given a printout at refills that tells you this information. If you don't get one ask for one.

If you can answer these couple of questions it will help me. I have been a pump patient since 2005.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

ginalollabridgida
New Member


Date Joined Jan 2017
Total Posts : 1
   Posted 4/18/2017 6:42 PM (GMT -6)   
It is unusual that your doc does not want to raise the meds. You need my doc, he wants me to have quality of life so fast. He is in Aventura FL. I think it should be slow raise and use the bolus in between. The hard thing with the pump is that the doctor has to have a wand. And that pain doctors do not take call. Even though they take call they do not call back. Call Medtronics and give them your zip code and they can hook you up with another or you can check Aventura Spine and Wellness who caters to snow birds (people who go north and south winter and summer.) you can find doctors from Canada to florida who take care of pump patients.

resale63
New Member


Date Joined Apr 2017
Total Posts : 2
   Posted 4/25/2017 12:19 AM (GMT -6)   
my name is jeff I got a medtronics painpump in 2012 foundout 2years ago is under fda recall has 5 diffirent problems has killed over 12 are more it underdoses overdoses stalls when thy fill pump thy miss and put all meds into body I went through over 4 years of major suffering check on web site under medtronics pain pump recall and lawsuits this pump almost cost me my life many times please read what is going on medtronics is in trouble now also no hospital will touch me when I go because of legal problems thy put a flowonix in 3 months ago working great but still suffering damage done by medtronics pump so do your research before u get one are if you have one it may be bad pump good luck I'm in middle of law suite now my model is 8637-40 so beware

resale63
New Member


Date Joined Apr 2017
Total Posts : 2
   Posted 4/25/2017 12:32 AM (GMT -6)   
to add to my post thy have been warned by fda years ago I found out the same day month and year thy where sent criminal and civil letters go to fda website under medical devices recalls it will show you all u need to know and now thy have to have a outside firm whatch them build pumps that pretty bad found out thy have known for years that's same day thy put pump in me to the date.if I new that I would have refused pump and finished out my time I was on 480 fentayl suckers a month and other pain meds and that is not living to me .
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