“Wearing off” symptoms??

[Dash7412]

I hope others have experienced this and I am not the only one. I was diagnosed with PD in 2015. The past 6 months have been hell. I now experience irregular, rapid breathing about 30 to 45 minutes before I take my next dose of Rytary. I also basically “bottom out”, meaning I feel like I have no energy and feel like crap, like I can’t even lift my head. My MDS feels like I probably need to add an additional dose a day- I currently take 390 mg of Rytary ER 5 times per day. Anyone else ever or currently experiencing this? Thanks for your help.

[park_bear]

I'm not sure if this is applicable but there is some discussion of Rytary and breathing difficulties in the second half of this post, starting just after the video: healthunlocked.com/cure-par...

I'm concerned about the possibility of stacking* taking that much Rytary that frequently. Do these symptoms get worse towards the end of the day?

*Accumulation of levodopa due to overlapping doses

[Dash7412 in reply to park_bear]

Thanks so much for your reply and information. I am now convinced, for so many reasons, that my local neurologist (whom I have “fired”) has really messed me up by not taking the time to see that I was overmedicated; his advice was for me to add another dose. That he was overwhelmed with many patients. I have transferredw my records to an excellent MDS but she doesn’t have a magic wand, and she can’t fix me in a day or week. I did try to cut back on my Rytary dosage, but the withdrawal symptoms, which included feeling like I was suffocating (more intense than the breathing issues that I experience now). I’ve also been dealing with intense lower back pain and hopefully have gotten it resolved with steroid injections. I’m no spring chicken but at 69, I truly feel like I have some more good years ahead of me if I can figure out how to remedy this. It’s basically my only health issue, no other conditions or diseases; PD is more than enough.

To answer your question, this gets worse normally with my last two doses of the day(early evening and then at bedtime). My MDS suggested I take an additional dose of Rytary; I’m hesitant because I just don’t agree with taking more medication. It seems to be their answer to everything.

I don’t see me going through this withdrawal process; doesn’t sound like anything that I could handle. I’m just very frustrated with doctors and even specialists…I wonder what they would say/think if they were the patient and dealing with this.

Thanks again for your thoughts and information.

[shaken-not-stirred in reply to Dash7412]

I am inclined to agree with PB and believe you are getting too much - can you try reducing your last 2 doses for the day or pushing out say 1/2 hour more between doses? To see if this overcomes your issues.

[Dash7412 in reply to shaken-not-stirred]

Thanks.. seriously considering trying this

[Zella23 in reply to Dash7412]

My husband was diagnosed 9 years ago the same year as you. He changed Neurologist after 4 years as he was just increasing the dose, not listening to my husband and the side effects got worse. Rytary is not available in the UK so I can’t comment on that.

He did listen to my husband, he added in a drug to lengthen the effect of Madopar. He’s worked carefully with my husbands symptoms, and the drugs increase has been minimal.

I hope your new Neurologist helps you navigate this very complex process.

[Dash7412 in reply to Zella23]

Thanks so much for your response…I am going to consider adjusting my dose and frequency.

[FreightTrainSinger]

I'm in a very similar position. I have the rapid breathing episodes during my wearing off period. I only take CL and GOCOVRI. I overcame some of the peaks and valleys in my case by taking less CL but more frequently. I'm currently @ 1 CL tablet every 1 1/2 - 2 hours.

[Dash7412 in reply to FreightTrainSinger]

Wow…do you take IR CL or Rytary ER?

[FreightTrainSinger in reply to Dash7412]

IR CL 25/100

[Nitro53]

I’m having the same problem but with c/l. I don’t have the breathing problem but all the rest. TOTAL fatigue, weakness, especially my legs, brain fog. I just turn off. Sometimes it will take a hour to recoup after the medication and other times I get better but just enough to cope. I take 200mg of IR c/l 4x a day with Entacapone and 1 CR 200mg c/l with Entacapone before bed. I also have these breakdowns without any warning and nothing to do with med time.

[Dash7412 in reply to Nitro53]

I’m sorry that you have been experiencing similar issues, but I now know that I am not alone. Thanks for sharing.

[Nitro53]

Funny thing is that my MDS thinks I should switch to Rytary as it might last longer. They also said it’s very expensive even with good insurance which I have,

[Dash7412 in reply to Nitro53]

I have taken only Rytary since I was diagnosed in 2015. I can honestly say that it has worked very well up until the last few months, and if I had been seeing a neurologist who cared about his patients, the dosage could have been adjusted correctly and it would still be working well.

[Sydney75]

Inbrija is what my HWP used for wearing off BTW rytary. His symptoms are different but it helps.

[Despe]

Did you ever consider taking MP with Sinemet? Yes, I do believe that you are overmedicated.