“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.

[Oneworld23 in reply to Nitro53]

Yes my brother is now starting to feel bouts of cripling fatigue. He also has debiltating pain in his back and down his legs. Suddenly his life has become "not worth living" his words not mine. He takes100mg of Sastravi (cl/ld + entacaponecombined) 5 x a day plus Ipinnia xl 4mg @ 8:00am. He takes Slow release 25mg/100mg at 11:00pm. He adds dispersible madopar now and again 50mg/12.5g He's been doing OK until about a month ago. He's seen a PD nurse and is on the list to see his PD consultant but as we lve in the UK that could be eons away. He lives alone and is now starting to show alarming cognitive decline. I am at my wits end for him.

[Dash7412 in reply to Oneworld23]

I’m sorry to hear about your brother; my heart goes out to him and you; I can relate to his attitude; quality of life is more important than quantity. I get very frustrated when I read about all the great things that can help those with PD, but when I talk to my MDS, it seems like my options are limited.

[Oneworld23 in reply to Dash7412]

Thank you for your reply

Yes we feel like the MDs are a bit out of their depths but can't acually admit it so they tend to up the doses.

[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.

[Psalmody]

interesting reading this thread. I relate to alot of it and I also get breathless

[PDGal4]

I take 190 mg Rytary 4 x day. I've been on this dosage since June 2017. My MDS and the one I had before him both told me to try and make it 4.5 hours, but 4 hours was the minimum between dosages. I never last 4.5 hours and sometimes barely 4. I've also been told to be as consistent as possible with timing of meds as the body becomes accustomed to and the meds work better when taken at the same time each day. This works and doesn't work for me. I mean, physical exercise, emotional stress and worry, even I find mental tasks requiring planning and thinking, all burn through dopamine faster.

What has worked for me is supplementing with about 1/2 IR C/L when I feel a dip coming on between Rytary doses. I suggested this years ago to my former MDS who wanted to prescribe Gocovri and rescue meds which were not conducive to my lifestyle (did not see myself using an inhaler or injecting with meds during social situations, or at the store doing errands (as examples) when discreetly biting off then chewing and swallowing a pill has the same effect . I've been told that 1/2 of a 25/100 C/L is equivalent to 95 mg of Rytary. I average 3 C/L's per day (including nighttime and early morning). I calculate this to be equivalent to 1045 mg RYTARY per day.

As to the breathing issues. I get them too. Per my MDS, anxiety is a wearing off symptom. For me, this gets exacerbated by my anxiety over the anxiety, which seems to have a life all its own. I have been working with a variety of breathing and other meditation practices to get through the anxiety.

[Dash7412 in reply to PDGal4]

So much of what you said resonates with me and my experiences with PD. It’s a unique and at times frustrating journey for sure. I appreciate your sharing your thoughts and experiences; I will definitely consider trying your strategies.

[Nitro53 in reply to PDGal4]

95mg rytary =1/2 C/L x 6 would be 570.🤔

[PDGal4 in reply to Nitro53]

Thank you, Nitro53. You are right and I wasn't clear. I intended to include 760 mg daily dose of Rytary with the 570 C/L for the equivalent of 1045 mg RYTARY per day, but I see I've done the math wrong. Math is not my strong suit. I think it should be 1330 mg.