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Drummergirl

Duopa Pump Users-

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Drummergirl    95

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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Beau's Mom    1,047

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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Drummergirl    95

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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Beau's Mom    1,047

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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noah    66

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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Beau's Mom    1,047

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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noah    66

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

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noah    66

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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Beau's Mom    1,047

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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Mihai    104

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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Drummergirl    95

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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Mihai    104

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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