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Drummergirl

Duopa Pump Users-

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I am scheduled for the Peg-J procedure June 14,  with the titration programing starting a few days later, in case of stomach discomfort.

Can you share your experiences and which carrier do you use most,  what limitations, if any do you have when it comes to hiking, biking and swimming? 

Feeling overwhelmed after receiving the box of info from Abbvie,

Thanks

 

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Abbvie nurses and representatives helped me every step of the way. The nurse came to my home to train me and my caregivers in use of the pump and how to care for the tube, both before and after the PEG-j tube procedure. Have you talked to a nurse at DuoConnect about your concerns regarding exercising? There is an option to talk to a Duopa user several times both before and after starting Duopa. You can ask to speak to someone who is as active as you are.

I chose Pharmacy Solutions because I had no information on either of the two pharmacies offered. Pharmacy Solutions is an Abbvie company and the connection between the folks at DuoConnect and the pharmacists was seamless.

Duopa has made a huge difference in my quality of life with PD. No more sudden off times. I have the ability to make plans and not have to drop out at the last minute because my meds don't work and no alarm going off every 2.5 hours to remind me to take meds. I hope your experience will be as wonderful as mine has been.

Dianne

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Hi Beau's mom,

Thank you for responding. I don't think many forum members are using the pump. Not sure why...

I have talked with one current user. She is a frequent traveler, but not active physically. The other person I chose was active, but not available to participate as a mentor for awhile.

The Abbvie case manager nurse is very helpful. I had not heard of the two pharmacies either. I ended up with Acreedo, I've had 2 good experiences (communicating )and 1 not so good with them so far.  

Which pump carrier do you use?

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Initially, they only had a cross-body holder that irritated my neck. Now I have a fanny pack that goes around the waist. It's holding up better. I tend to get hot easily so the vests weren't an option for me.

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What qualifies a person for the pump?

I had DBS 2 years ago and it has been very helpful with my my motor symptoms(I could barely walk) but each time i increase it if effects my speech. In all honestly I didnt

realize it would have such an effect on my speech. I have a terrilble time with nausea from the sinemet. Does one still get nausea with the pump?

I am also so sick of taking all these pills. I take 28 pills per day!! 

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I don't know if having already had DBS would disqualify you for the pump. I don't believe nausea would be an issue because the Duopa gel is delivered straight to the jejunum (part of the small intestine), bypassing the stomach.

I will be seeing an MDS tomorrow who was involved in the study that got the pump approved. I will ask her if DBS is a disqualifier.

Dianne

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that would be great! If you wouldnt mind asking her about the nausea I would really appreciste it 

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I just thought of one more thing..if you dont mind. I am also very sensitive to protein containing foods and the absorption of the sinemet.

I wondered if this is still an issue with the pump.

 

Thanks again 

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This is also not an issue. Since the Duopa does not go through the stomach or the liver, where proteins are processed before carb/levo, my meals do not affect absorption.

Dianne

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Hi all...

I went through the clinical trial for the pump (it was a year long trial).  Three years later I still have it and I love it!!!  It is so much more effective than the oral medications and, in many ways, has given me my life back.  It does require some care with the peg-J and all, but in my opinion is well worth the extra effort.  I had alot of trouble with the tube kinking and knotting internally, but I finally figured that out...after 5 endoscopies to replace the tube, I started taping the tube to my stomach during the night so it cannot twist.  That solved the problem!  I get my medication and supplies from Accredo--a specialty pharmacy (during the trial, it all came from Pharmacy Solutions, but changed when insurance took over).   It is covered by my insurance and I have another provider that pays my insurance deductible and co-pays, so I basically pay nothing for the pump or the medication!  I am not sure why more people are not looking into this option...it is more invasive than the oral meds, but it is so much better.  I became involved as a step prior to considering DBS more seriously.  It was a great option.  Good luck to each of you...I hope it works well for you!

Peace,

Mihai (Michael)

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Hi Mihai,

Accredo and my insurance company do not have a contract in place, the pump was approved, but not the medication. Doesnt make sense, and it's been a roller coaster trying to get all the players to agree. Disappointing...so at this point it's on hold. Im glad it's going well for you now. 

Why was the tube kinking at night? Your sleeping position?

Thank you,

 

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Hi Drummergirl,

I have heard that some folks have had a hard time with the insurance covering one part, but not the other (gel and pump device).  It seems crazy, since you kinda need both for the process to work! :-)  I think eventually they will come around.  It's alot of money each month, so I'm sure the insurance companies are not too thrilled with this new treatment option!  Just keep at it...hopefully, they will see the light!

The kinking and knotting with my tube had to have been taking place at nighttime.  Because the bumpers were not up tight against the skin (which is a bit uncomfortable), I think the tube was twisting on the outside, thus causing it to twist on the inside until it would get into a position that would not allow the gel to flow.  The simple fix was medical tape to secure it on the outside.  I have had my current tube for about a year, so something is working right!

Peace,

Mihai

 

Edited by Mihai

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Hey Drummergirl,

Did you get the pump?  How's it going?  I hope it's working well for you.  

Mihai

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I had asked my doctor about it b/c I was having a terrible time with being off from 5 on.  She said I would have to demonstrate more off time during the day.

The only way I can stay on is to not eat anything between 3-7. The food was interfering with the absorption of my pills.  So far it has worked but I cant eat dinner until 8.

So right now it is 500 and I am STARVED but I cant eat until 8. I have been losing wgt I hope this doesnt  make it worse/ 

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On 2/10/2018 at 4:06 PM, Mihai said:

Hey Drummergirl,

Did you get the pump?  How's it going?  I hope it's working well for you

Hi Mihai,

No, Insurance and big Pharma couldn't come to an agreement/contract for the med gel.. I tried the shot, Apokyn, to use as a rescue, but, I had an allergic reaction to it.

I'm looking forward to the inhaler...can't get here soon enough..

Thanks for checking. Are you still pleased with it? will you go to the smaller, under the skin pump once it's available?

Enjoy!

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Sorry to hear about the roadblocks!  I am still on the pump and doing well overall.  It's not perfect, but much better than oral meds!  Get ahold of the inhaler if you can when it comes to the market.  I think you'll find great benefit in it!  I am glad to hear that they are looking at making changes to the pump.  The original one is heavy and somewhat cumbersome.  I hear they are working on an alternative that eliminates the peg-J tube.  That would be a blessing.  Hang in there...good things are happening!

Mihai

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On 2/10/2018 at 5:11 PM, noah said:

I had asked my doctor about it b/c I was having a terrible time with being off from 5 on.  She said I would have to demonstrate more off time during the day.

The only way I can stay on is to not eat anything between 3-7. The food was interfering with the absorption of my pills.  So far it has worked but I cant eat dinner until 8.

So right now it is 500 and I am STARVED but I cant eat until 8. I have been losing wgt I hope this doesnt  make it worse/ 

Hi Noah

Have you ever tried entacapone(comtan)with your sinemet.The next step up would be to try rytary.

Ive had good luck with comtan.Now on only 2 doses a day.

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i have not heard of comtan what is it?I a,m already taking reg sinemet and rytary.

I have found that if I dont eat anything between 3-8 then my medication is absorbed just fine

I just have to get use to eating @8

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com

5 hours ago, noah said:

i have not heard of comtan what is it?I a,m already taking reg sinemet and rytary.

I have found that if I dont eat anything between 3-8 then my medication is absorbed just fine

I just have to get use to eating @8

Comtan makes sinemet last a lot longer by blocking a enzyme that breaks down sinemet.

You go to the clinic.For some reason few who go there ever heard of comtan

I was taking 4 doses a day now 2 .yes food can be a problem

I cant eat after 7 or I mess it up

 

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Noah,

There are 2 enzymes in your blood that break down levodopa before it gets past the blood brain barrier. Carbidopa that is included with sinement and rytary takes care of the more agrresive enzyme. Comtan will neutralizes the second one thus allowing more of your regular dose of levodopa to make it to the brain.

Hope this helps.

My MDS has suggested this to me at my last appointment. We are keeping it as my next med adjustment should I need better coverage of symptoms. So far the last adjustment has been enough.

Blessings

Edited by adams234

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