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cberninger

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cberninger last won the day on October 18 2012

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About cberninger

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    Wolcott, CT
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  1. Rytary Experience

    Dr. Okun, I posted this for Mark on the pharmacist board but would also like your feedback on my experience and what you would recommend to do. I know that you have detailed experience with trying Rytary and then returned to Sinemet CR that has been better for you. I'll give you some background in the hopes that you can shed some light on what you would do if in my shoes. I was diagnosed at 34 with YOPD 7 years ago. I have responded well to levodopa meds when I decided to start using them about 4 years ago. I started 7 years ago on just amantadine and took many natural supplements like CoQ10 and a multivitamin which worked for me for about 3 years. We then added Neupro at 2mg which helped to improve things but it wasn't optimal until I reached 6 mg over 2 months. The next year, we were now at 8mg on the Neupro and I began using levodopa therapy with Stalevo with great success while removing the Amantadine from the medication plan. Things went smoothly and I began to increase my Stalevo therapy until I was taking it at a strength of 125mg x 5 times a day due to its effects wearing off before my next dose. So, I began having off times more frequently. This was about 2 years ago and I had been following the development and approval of IPX066 which we know now as Rytary. I am all about trying the latest therapy and was enthusiastic about getting my Neuro to prescribe it for me. He did and I began using it with great success for about a month when it became apparent that Rytary is affected more for me in my body by food that Stalevo. I would ensure not to take the Rytary either 1 hour before or after meals at first, eating non protein snacks to sustain myself. The Rytary still seemed to stop working about 1 hour eating anything. So, I would have considerable off times after eating anything in somewhat larger quantities. I have been operating on Rytary for almost 2 years now withstanding dyskinesia at times becoming more and more frequent over the past year. I had not deviated from my initial conversion dose of 3 pills @ 145mg 3 times a day for about 1 1/2 years then increased the therapy to 4 times a day for the last 6 months bridging the gap between doses with generic Sinemet IR 25/100 usually 1/2 pill until I was on. Over the last 2 months, Rytary has become less reliable in preventing my dyskinesia at the 3x145mg 4 times a day dose and triggering dyskinesia for me about 2 hrs in. Each dose seems to last about 4 1/2 hrs after taking it. Add to this that about 1 month ago, I agreed to wean off my Neupro 8mg titraing down to zero to participate in a clinical trial in Stage III for a new agonist that has provided greater on times. Well, that has caused the Rytary dose to be very unstable, crashing at times 2 hrs into dyskenesia. After 1 month of this nonsense, I decided to abandon the trial for quality of life and have finally titrated Neupro back up to 8mg just today. As I titrated back with Neupro, I started adjusting down the Rytary dose by mixing different strengths over the last week with 95mg pills trying to find the optimal dose. Over the past week , I tried Rytary at the following doses keeping my Neupro stable at 4mg until today. Now, the Neupro is back to 8mg as before the attempted clinical trial. 4x145mg = dyskenesia 3x145mg = dyskenesia 2x145mg + 2x95 mg = dyskensia 2x145mg + 1x95 mg = dyskinesia but after 3 hrs in I am now taking this dose Rytary 2x145mg and 1 Sinemet 25/100 4 times a day Neupro 8mg Azilect 1mg once daily Is this something that you would do? Do you think that I am under dosing/overdosing? Am I being too impatient and need to stay on one of these doses for a specific period and what could that be? I am now trying to start low and go slow, supplementing IR as needed. I am very leery about overdosing and dyskenesing since I also watch my 2 sons after school and actually coach them in their sports. How long does it take for the body to readjust when you alter your medicine "cocktail"? Am I going to have dyskenesias until I am more stable over a period of maintaining the dose? After eating, should I not jump the gun and supplement with Sinemet and wait it out to see if the Rytary kicks back in? Could supplementing and jumping the gun kick the dyskenesias? Thanks for your response here. You always give good advice.
  2. My Battle With Rytary

    Hi there again Mark, I know that you have detailed experience with trying Rytary and then returned to Sinemet CR that has been better for you. I'll give you some background in the hopes that you can shed some light on what you would do if in my shoes. I was diagnosed at 34 with YOPD 7 years ago. I have responded well to levodopa meds when I decided to start using them about 4 years ago. I started 7 years ago on just amantadine and took many natural supplements like CoQ10 and a multivitamin which worked for me for about 3 years. We then added Neupro at 2mg which helped to improve things but it wasn't optimal until I reached 6 mg over 2 months. The next year, we were now at 8mg on the Neupro and I began using levodopa therapy with Stalevo with great success while removing the Amantadine from the medication plan. Things went smoothly and I began to increase my Stalevo therapy until I was taking it at a strength of 125mg x 5 times a day due to its effects wearing off before my next dose. So, I began having off times more frequently. This was about 2 years ago and I had been following the development and approval of IPX066 which we know now as Rytary. I am all about trying the latest therapy and was enthusiastic about getting my Neuro to prescribe it for me. He did and I began using it with great success for about a month when it became apparent that Rytary is affected more for me in my body by food that Stalevo. I would ensure not to take the Rytary either 1 hour before or after meals at first, eating non protein snacks to sustain myself. The Rytary still seemed to stop working about 1 hour eating anything. So, I would have considerable off times after eating anything in somewhat larger quantities. I have been operating on Rytary for almost 2 years now withstanding dyskinesia at times becoming more and more frequent over the past year. I had not deviated from my initial conversion dose of 3 pills @ 145mg 3 times a day for about 1 1/2 years then increased the therapy to 4 times a day for the last 6 months bridging the gap between doses with generic Sinemet IR 25/100 usually 1/2 pill until I was on. Over the last 2 months, Rytary has become less reliable in preventing my dyskinesia at the 3x145mg 4 times a day dose and triggering dyskinesia for me about 2 hrs in. Each dose seems to last about 4 1/2 hrs after taking it. Add to this that about 1 month ago, I agreed to wean off my Neupro 8mg titraing down to zero to participate in a clinical trial in Stage III for a new agonist that has provided greater on times. Well, that has caused the Rytary dose to be very unstable, crashing at times 2 hrs into dyskenesia. After 1 month of this nonsense, I decided to abandon the trial for quality of life and have finally titrated Neupro back up to 8mg just today. As I titrated back with Neupro, I started adjusting down the Rytary dose by mixing different strengths over the last week with 95mg pills trying to find the optimal dose. Over the past week , I tried Rytary at the following doses keeping my Neupro stable at 4mg until today. Now, the Neupro is back to 8mg as before the attempted clinical trial. 4x145mg = dyskenesia 3x145mg = dyskenesia 2x145mg + 2x95 mg = dyskensia 2x145mg + 1x95 mg = dyskinesia but after 3 hrs in I am now taking this dose Rytary 2x145mg and 1 Sinemet 25/100 4 times a day Neupro 8mg Azilect 1mg once daily Is this something that you would do? Do you think that I am under dosing/overdosing? Am I being too impatient and need to stay on one of these doses for a specific period and what could that be? I am now trying to start low and go slow, supplementing IR as needed. I am very leery about overdosing and dyskenesing since I also watch my 2 sons after school and actually coach them in their sports. How long does it take for the body to readjust when you alter your medicine "cocktail"? Am I going to have dyskenesias until I am more stable over a period of maintaining the dose? After eating, should I not jump the gun and supplement with Sinemet and wait it out to see if the Rytary kicks back in? Could supplementing and jumping the gun kick the dyskenesias? Thanks for your response here. You always give good advice.
  3. More informabout Xadago (safinamide)

    Hi Mark, I have a question for you on Xadago. Has this medicine been made available in the US market yet? It's been 2 months since FDA approval.
  4. Rytary, Neupro, and Azilect

    Mark, Are you finding that most PDers on Rytary are having not only protein side effects shorteniong the length of the dose but also shortening effectiveness due to the amount of food that is not digested in the body at time of dose? I seem to have that issue since I have had the Rytary dose really wane even though I have kept the 2 hour window around my doses on the fron and baxck side time wise.
  5. Rytary

    ok, so Rytary is coming around for me but this morning about 5 hrs into dose I am pretty stiff but no aches or pains. I realy want to wait to dose again until my next due time which is precisely 2 hrs away. Any suggestions? Presently taking 3 doses of 3 capsules per day then usinga 125mg Stalevo in the middle of the 2nd dose to bridge the gap until the 3rd dose is due when that dose weans of early at times. All of this has been run through and approved by my neuro. Thanks again. I do feel sleepy on it and does feel like food interferes with the absorption at times even if consumed after 2 hrs or before 2 hrs of dose. Luthersfaith, what strength are you taking?
  6. Rytary, Neupro, and Azilect

    Ok,Mark, here's another one for you. So Rytary is coming around for me but this morning about 5 hrs into dose I am pretty stiff but no aches or pains. I realy want to wait to dose again until my next due time which is precisely 2 hrs away. Any suggestions? Presently taking 3 doses of 3 capsules per day then usinga 125mg Stalevo in the middle of the 2nd dose to bridge the gap until the 3rd dose is due when that dose weans of early at times. All of this has been run through and approved by my neuro. Thanks again.
  7. Rytary, Neupro, and Azilect

    ok, so Rytary is coming around for me but this morning about 5 hrs into dose I am pretty stiff but no aches or pains. I realy want to wait to dose again until my next due time which is precisely 2 hrs away. Any suggestions? Presently taking 3 doses of 3 capsules per day then usinga 125mg Stalevo in the middle of the 2nd dose to bridge the gap until the 3rd dose is due when that dose weans of early at times. All of this has been run through and approved by my neuro. Thanks again.
  8. Rytary

    ok, so Rytary is coming around for me but this morning about 5 hrs into dose I am pretty stiff but no aches or pains. I realy want to wait to dose again until my next due time which is precisely 2 hrs away. Any suggestions? Presently taking 3 doses of 3 capsules per day then usinga 125mg Stalevo in the middle of the 2nd dose to bridge the gap until the 3rd dose is due when that dose weans of early at times.
  9. IM STARTING RYTARY 1ST PATIENT ROUND HERE

    anybody gets high blod pressure and chest pain from Rytary. I am having some of that off and on and it is scaring me. I just dont know if it is heartburn but would like to know if someone else is having the same side effect.
  10. Rytary

    miracleseeker - that refers to Azlicet but it is a selective MAOI. so, the hypotension does not apply. The MAOI has to be non selective. Anyone one you have chest pains and high blood, presssure on Rytary?
  11. Rytary

    So, you are taking it every 5 hrs?
  12. Rytary, Neupro, and Azilect

    Thank you. In addition to the above mentioned side effects, I am also feeling jittery, sometimes congested or I'll feeling like I have the Flu, have a gagging reflex along with.increased anxiety at times. Are these side effects that will abate overtime or are they instances that are worrisome enough to switch back to Stalevo at a higher dose such as 150mg or greater? I am really tryi g to give Rytary a chance but I also do not want to put my body through these issues unless it is da,lay warranted
  13. Rytary

    Hi everyone, I just started Rytary over the lest 3 weeks and would like to know if anyone is seeing great benefits from switching to it. I was previously taking Stalevo 125mg 5-6 times a day and getting ready to increase to 150mg instead. My MDS felt this was a better path since I would be dosing a reduced number of times a day compared with what I was doing with Stalevo. I have mostly seen revelations of positive but inconsistent results so far. I also have been experiencing some early side effects such as heartburn, a slightly elevated blood pressure, and that numb prickly feeling when your foot fall asleep in 1-2 fingers early in the dose. It kicks in quicker than Stalevo for me but is very unpredictable in its length of effectiveness and very sensitive to any protein intake fhat I have. Bur, I've got to eat. Thanks everyone for any feedback. Trying to either stay the course for a little while longer like Mark Comes states in the Ask the Pharmacist blog here or just go back to Stalevo and just continue to the 150mg level.
  14. Rytary, Neupro, and Azilect

    HI Dr. Okun, I have a question for you. I just began taking Rytary 36.25/145mg 3 capsules 4x per day at the direction of neuro. He said to remain on Neupro 8mg/day and Azilect 1mg/day. I switched from Stalevo 125mg 6x day to Rytary to extend my on times/ While it is working well, I have been getting addtional side effects from what I can gatehr, such as higher readings on blood pressure and small pains througjout my body, including the area right below my left pectorial muscle. It has been 3 weeks since the swithch from Stalevo to Rytary. * should I still be taking Azilect and or the Neupro with Rytary? * what combination could cauee higher blood pressure and/or pains in teh lower chest I do not have a history of blood pressure problems or heart issues in my family and my bllod pressure readings have always been around 115/75. Today's reading shows 137/94. I have a call into my neuro for a call back today. Thanks
  15. Rytary, Neupro, and Azilect

    HI Mark, I just began taking Rytary 36.25/145mg 3 capsules 4x per day at the direction of neuro. He said to remain on Neupro 8mg/day and Azilect 1mg/day. I switched from Stalevo 125mg 6x day to Rytary to extend my on times/ While it is working well, I have been getting addtional side effects from what I can gatehr, such as higher readings on blood pressure and small pains througjout my body, including the area right below my left pectorial muscle. It has been 3 weeks since the swithch from Stalevo to Rytary. * should I still be taking Azilect and or the Neupro with Rytary? * what combination could cauee higher blood pressure and/or pains in teh lower chest I do not have a history of blood pressure problems or heart issues in my family and my bllod pressure readings have always been around 115/75. Today's reading shows 137/94. I have a call into my neuro for a call back today. Thanks
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