Starting C/L immediate release

[MomoP]

I found an 5 month old post and replied to park bear. He suggested I start a new post. I initially searched for starting C/L which led me to the old post. Here is my reply. Any advice, tips, etc welcome. Thank you in advance!

Hi Park, I know this post is 5 months old. But I welcome advice from anyone. It seems from what I’ve read that our symptoms and responses to medication are very similar. I finally bit the bullet and requested to be put on C/L extended release, after trying Rasagiline and Selegiline with no change in motor symptoms. She started me on C/L 25/100 ( not extended), she said she doesn’t start patients on extended release.1/2 pill 3x a day for a week, then up it to a whole pill. I realize I just started and will be patient. I didn’t expect immediate results but see on this thread some people have. I take the morning 1/2 and don’t notice any difference or side effects. I take the 2nd 1/2 tablet 5 hours later. It makes me a little tired but I am hoping that will wear off the longer I take it. The problem comes after the 3rd 1/2 tablet, 5 hours after the 2nd. The best way to describe it, about an hour later I feel like I am in slow motion. I talk slower ( my speech has normally not been affected by PD). I can barely walk, when I do, I need help and walk like Frankenstein. I feel dopey, unsteady and slow. I assume my body needs to adjust to the medication, but it scared the crap out of me, with worsening symptoms, much worse than when only on Selegiline, which she kept me on. I really couldn’t function without help until about 2 hours later, but no improvement over my normal motor symptoms, just didn’t feel as much like a zombie. Does anyone know if this is a normal beginning reaction? I want to feel normal and be able to enjoy my life, which was the main reason for asking to be put on C/L. Even though selegiline didn’t help my motor symptoms, I could still function, drive,etc without side effects. Sorry for the long post. I certainly don’t want to bail on C/ L after a short period of time but my reaction to the 3rd 1/2 tablet, I am afraid to go on the full tablet dose. Thank you in advance! Btw, I stopped all supplements for the time being since I was taking too many and couldn’t tell which were helping

Reply

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[MomoP]

Park replied....Firstly, no apology necessary for length or timing of your comment.

If I have too much levodopa, my affected leg gets stiff and walking is difficult. However, in this case, as the medication wears off there comes a point when my walking is improved. It is concerning that there is no point when you register improvement. You are right to be reluctant take a whole pill given your reaction to a half pill.

I suggest turning your comment into a separate post which will get more attention. Perhaps someone with similar experience will comment.

Meanwhile, based on my experience with medication, adverse reactions should be respected - it is not my experience that the body gets "used to" a medication after significant adverse effects arise. Perhaps your case will be different but caution is definitely in order.

Do you have classical Parkinson's symptoms – specifically, one-sided resting tremor?

[MomoP]

My reply to Park BearNo tremors, so far just affecting the left side of my body. Neurologist picked up slight difference on right side but the left is so much more affected, I don’t notice any on the right at all. My gait is slow and awkward. I tend to drag my left foot. One of the first things I initially noticed was I started taking steps like a toddler, left foot, left foot left foot, not consciously trying to do that. Sometimes I get surprised and my legs will do every other step by itself. I haven’t figured out a reason why. Many times I try to make myself do every other holding a railing to keep strength in both legs. A prior neurologist checked for postural instability with my eyes closed and I failed miserably. I would have fallen on the floor if she hadn’t caught me. My new neurologist didn’t have me close my eyes and I passed with flying colors. My score was 27 total ( it was a good day, so truthfully it’s probably slightly worse, not by much). No left arm swing. Still mentally sharp. Still smell perfectly. I ended up buying a cane for added stability when walking by myself. I don’t use it much at home. I tend to hold furniture, walls, railings, etc. I have trouble turning around/ over in bed

[WinnieThePoo in reply to MomoP]

Have you asked your neurologist? What did they say?

[MomoP in reply to WinnieThePoo]

I placed a call this am and haven’t heard back yet

[MomoP]

I called back. The Dr is out of the office today. I spoke with her nurse and she was sending a message to the Dr. But said in the meantime, she was advising not to increase the dose until we hear back from the Dr next week. I’m glad she suggested it, because it’s what I wanted to do anyway

[Hikoi]

One thing stood out for me. You write she kept me on selegiline. That can have a marked effect on the actions of C/l. In effect it makes the c/l much stronger in its action. I didnt add it until having used C/l a number of years.

Sounds like you are the stiffness postural instability type of pd. i have noticed that often they dont get as good a result from c/l but it is still the best drug available.

[MomoP in reply to Hikoi]

I am looking it up now. I had heard tremor dominant and non tremor dominant. Thank you

[MomoP]

Hi Hikoi, Thank you for your reply! I hears back from the Dr this afternoon. She said my reaction is not typical and unusual. She wants me to go slower. Backing off one half 3x a day, to 1 half only once a day for a week, if no side effects and I tolerate it well. Then 2 halfs twice a day for a week, and so on as long as I tolerate it well. Yes, she kept me on selegiline twice a day. When I was on only selegiline, I felt good ( mostly meaning no side effects at all, but it didn’t touch my motor symptoms. Butbsince it is my left side that is affected, I could still drive safely and be independent. I wasn’t aware there is a stiffness postural instability PD. You still think C/L is the best? Maybe if she had tried the extended release , it would have gotten in my system much slower and evenly? Thanks again for your input 😊

[Hikoi]

Hi MomoThere is such a lot to learn about PD isn't there, but it is very interesting. I hesitate to say (contradicting your doctor) but I think you showed symptoms of overdose. It is difficult getting it right, I haven't worked it out properly yet in 13 years. I wonder when you take selegiline. Was it at the same time as the third 1/2 tab? I only take one selegiline as two is too strong for me. It won't do anything for your motor symptoms, its effect is in making levodopa more effective. It is also an anti depressant at higher doses, which was its original use, so you will feel good on it. Rasagiline is the newer version that was developed specifically for PD.

I am at variance with Park Bear, I think short acting C/L is fine especially at the beginning and it definitely is the most popular. You still have capacity to store levodopa so the effect lasts longer. Having said that I have a PIG (postural instability gate problems) friend who has always uses long acting. Good luck.

[MomoP in reply to Hikoi]

Thank you! No, I have at least an hour or more between the 2 medications . My first medication was Rasagiline. I was tired and dizzy every day, taking long naps which is uncommon for me. There definitely is a lot to learn! I have learned much from the people on this forum. I sure am glad I found it! Take care.

[grower]

Hikoi has wise words. I just thought it might help to let you know it was similar for me, I got completely wiped out when first starting on C/L but had been started on it too quickly ( full pill each dose). Second time I tried starting it it was still too high at 1/2 and I finally succeeded getting used to it with 1/3 , gradually ramping up from there. I also have non-tremor and started with just no left arm swing. Good luck sorting your issues

[MomoP in reply to grower]

Hi Grower! Thank you for letting me know you had a similar experience. And also that your PD started the same. I had thought maybe she’d cut it back to 1/4 3x a day, but I am happy to try 1/2 once a day since I didn’t seem to have any side effects with the morning dose. I was so happy not to be taking the 3rd dose yesterday. Did it eventually help you? At some point did you get relief from your symptoms? I had read on here about people being C/L phobic. That was me. I was hesitant to go on it. But also reading that others had such good results they wondered why they waited so long. This is definitely not a journey I thought I’d be on! Take care

[Stevenmast in reply to MomoP]

You Are Not Alone!

[MomoP in reply to Stevenmast]

Hi Steven, Thank you so much for your words of encouragement! Most days I try to stay positive and have hope. The other night I broke down and sobbed. I appreciate your short and sweet message. And the encouragement and advice offered by others on this forum means more than they know!

[Stevenmast in reply to MomoP]

You're not alone with crying either! Let It Be short-lived! Eventually you will find the bright spots! Hang in there! People on this site are fantastic individuals!

[jombi in reply to Stevenmast]

Hi Steven. I remember your mucuna journey that was so helpful to many. Is your new regimen working out?

[Stevenmast in reply to jombi]

So far yes! I only take two doses now 1.2 grams each. In Black Coffee. There are some occasions when I take three if I'm doing something like work. I also do vitamin B1. 1000 mg twice a day for a total of 2000. The only additional thing that I added to my protocol is a lot of meditation specifically Joe dispenza rewire your brain. How are you doing?