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Vyalev foslevodopa and foscarbidopa
Is there a Neurologist or another Doctor that is working with this product in the USA near California.
I have issues with C/L and food as I cannot take my meds within 4hrs of a meal!!
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7 Replies
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My MDS discussed the subcutaneous pump as the next step after DBS surgery to control PD symptoms. A nurse who I think represents the maker of the pump spoke to me and my care partner. The pump is too large, in my opinion to be able to sleep with, as I toss and turn a lot. Once it’s been reduced in size, I will consider it.
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Dietary protein blocks the absorption of carbidopa and levodopa in the small inutestine, which is why many patients with advanced Parkinson’s disease get terrible “off” symptoms after meals. Vialev should help reduce this problem because it is absorbed in the skin, not in the intestine. I am trying to get treatment with Vialev, and I would greatly appreciate being contacted by anyone who can help me get it. I have Medicare Part D Enhanced and Original Medicare with Supplemental Plan F.
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I am thinking that once the wrinkles are ironed out that this will an option for those of us who are more than ready to give it a try. I also think that the pack is large, but if we can trade it for a smaller model down the road, I for one might give it a try.
As to the problem with protein and the “off” issue, I feel like I have a noose around my neck and the noose keeps me from getting too far from home. I eat total vegan – and that definitely helps, but I CAN’T WAIT to give this a try!!
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The pump can be disconnected while sleeping, but this requires starting a new sub-dermal infusion site in the morning. There may be some ups and downs in medication blood levels due to switching back to oral medications.
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I have been on the Vyalev program for about 2 months now. This drug has been an absolute miracle for me. I was diagnosed with Early onset Idiopathic Parkinson’s Disease at the age of 43. I am now 57 years old. I was at the point where the meds just weren’t working as well anymore. Since I’ve started Vyalev I can hang out anywhere and nobody can tell I have Parkinson’s. It makes you feel normal. There were a few drawbacks. The ramp up period was a challenge and you can have off periods but I at most have only one per day now. Before this I was looking at DBS but now this should carry me for a while. It achieved FDA approval last October. If used properly this drug will change your life. Take a look at their website http://www.Vyalev.com
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More and more doctors are getting on board with vyalev. Medicare is also starting to cover it.
I started vyalev March 13 and had to stop on March 18 th. I was having site injection issues. Red, itchy, swollen, pain and knots under my skin. I still have one spot that bruised bur the knots under my skin have finally gone away.
I felt like indie medicine was working. However, I apparently had a to the medication. My doctor is now pushing dbs.
Sonja
My
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feel you, the whole timing meds around meals thing is a real pain. I had a friend dealing with the same issue, and they found that tweaking meal times and types helped a bit. Like, taking meds 30-60 mins before eating, and saving high-protein stuff for later in the day . Also, some folks have had experiences with certain companies, and it’s worth checking out their customer service reviews https://www.pissedconsumer.com/company/kgh/customer-service.html . Hope you find a doc nearby who can help sort this out.
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