January 26, 2020 at 9:44 pm #17633Garrett McAuliffeParticipant
I am trying to use continuous release (CR) carbidopa levodopa at times when I experience stress or an upcoming social situation, as vaguely suggested by my neurologist. So before teaching I have tried adding a 125/100 CR to my usual dose of IR (immediate release). It hasn’t worked the first time I tried it when I had to teach at about 4 PM and I took my CR dose along with my regular IR dose about an hour before class. Has anyone had an experience with using CR combined with their regular dose for upcoming social situations or performances they have to give?What do you know of any guidelines and experiences with use of CR? I do take one and a half tabs of CR when I’m going to bed and another tab with my usual dose of IR in the morning when I wake up. I assume that’s helping me get started in the morning. Perhaps I should give up trying to go to social situations or trying to teach, as I am off during much of those times I’m trying to function under some pressure. It seems that stress trumps the medication!
January 26, 2020 at 10:35 pm #17634Toni ShapiroParticipant
I just started 2 CR tabs along with 2 100/25 tabs just before bed. Its the first time in a long time I have been able to sleep past 5 am and wake up energized without bad tremors and being very unbalanced to the point of having to break falls. The idea of using CR in stressful situations is interesting to me. I suffer from anxiety in social situations and my tremor and balance goes off the wall. I will talk to my nuro about if he thinks the CR could also help with my anxiety since it is working so well at night.
January 27, 2020 at 1:34 am #17635
I have been diagnosed for less than five years and have only recently started taking an increased dose, and CR tablets, from what I took from the start. So, I’m very sorry, I don’t have anything to contribute, and am using this only as a learning opportunity. I’ve been suffering increased “rigidity” (really stiff muscles, in my lower body — very painful, overwhelmingly so — in the morning). Just before Christmas I woke up one morning and couldn’t roll over till much later. To date, the changes in my medications hasn’t been working for me.
Mind if I ask from where did you get the idea about about how much, and of what, to take when in this situation? However, if one was trying to do this for “ordinary” anxiety, one would be aiming for a higher dose overall, and making sure one’s non-pharmaceutical coping strategies were well developed in addition to the pills (I used to work as a psychologist). To think that someone once said neurologists would take over the work of psychiatrists completely (part of the anti-Psychiatry movement)!?
January 29, 2020 at 11:19 am #17681Paul D LefebvreParticipant
Garrett, it was good to see your question here as I have been considering something similar. I was diagnosed 7.5 years ago in Aug 2012; it has taken met all this time to get to this question (and I’m really not there yet). I take two tabs (100/25 Sinemet) at 6am, 2 tabs at 9am, 1&1/2 at 12:30pm, 1&1/2 at 4:30 pm; none after that til morning at 6am. I go to bed at 9pm, sleep well til midnight, then sleep very poorly -if at all- til getting up at 4:45am to prep for my 6am meds. I recently think I have begun to notice some tremor in the night time and that brought me to think about C/L-CR. I also have plenty of anxiety in the night to keep me awake. But my concern is that I have read -and I think my neuro said- that carbadopa/levadopa promotes dyskinesia and eventually becomes inefficacious. I’d hate to lose whatever benefit I still get from the Sinemet. But if it is tremors disrupting my sleep, and if C/L-CR would alleviate that, I’d sure like to get better sleep. So I’m in a quandary about adding on more medication. I suppose I should have a visit with the neuro and try to get a more definite suggestion.
January 30, 2020 at 3:30 pm #17705RobertParticipant
Garrett and others.
For what it is worth, here is my story re: Sinemet CR. (Sinemet is my shorthand for Carbidopa/Levodopa)
I was recently having wearing off before and after my regular Sinemet times and my doctor added 4 Sinemet CR 50/200 pills on top of my regular 5 times a day 2 Sinemet 25/100 doses. As follows: 1 Sinemet CR 50/200 with my regular 2 Sinemet pill dose at 6am. 1 Sinemet CR 50/200 alone at 6pm. (My regular pill times are 6am, 10am, 3pm and 8pm.) And then 2 Sinemet CR 50/200 pills at bedtime. I also take 2 regular Sinemet pills at around 2 or 3 am when I always wake up each tight to empty my bladder. This has completely solved my wearing off problems. I think what this means for me is that I needed more Sinemet in my system, but just taking more regular Sinemet, ie. 2 1/2 or 3 pills at a time could not be used properly. The delayed reaction of the CR pills smooths out the Sinemet in my system just enough. If my timing is off, this does not work. But if I keep to the schedule, it works really well for me. I think I just need a certain amount of Sinemet in my sytem 24 hours a day. Not just during waking hours.
January 30, 2020 at 3:37 pm #17706RobertParticipant
Garrett and others.
FYI. I was diagnosed 19 months ago and just started meds 14 months ago. So I have jumped up to a higher dose of Sinemet pretty quickly. I was a stiff and slow mess until we did decide to flood my system me with the magic Sinemet pills. It is working for me. No dyskinesias from the Sinemet, only when I am late with the pills.
February 3, 2020 at 9:34 pm #17731
I was diagnosed @6 years ago and have taken CR Sinemet for 3 years now. First started with bedtime to help start in morning. Then 3 times during day at same time as IR. Now I have more off times and gait/balance issues as well as freezing and falling. Dyskinesia started about 6 months ago which can be caused by too much Levadopa Just had another appointment with my neurologist and she wants me to reduce the CR which is not as effective as IR. Every 3 hours I am taking Sinemet and Entacapone Also, would make transition to Rytary easier if that’s what I want to do. Also using inbrijio- not much success. After 4 days not going so well but trying to give it a chance Of course stress makes symptoms worse An endless guessing game ……
February 3, 2020 at 11:18 pm #17732
thanks for your post. I’m in the habit of investigating things pertaining to PD using things like Google Scholar, PubMed, and Google generally (actually, quite a few things, if you include the journal abstracts, list of new topics from recently published issues of journals, research abstracts review services, and drug information sheets, as well as personal communications from researchers, and so on). From my reading of the literature, dyskinesia seems to be due more, not so much to “too much dopamine”, but to the “on/off” nature of the drugs used to treat the PD — if one could have the same dose in the blood stream all the time one would be much less likely to suffer dyskinesia — and in this regard your neurologist seems to be doing much of what he can to help you. I’m in New Zealand, where our available “COMT inhibitors” — which act to “even out over time” the effects of drugs like Sinemet — do not currently include Entacapone, Inbrij or Rytary, at least not to those reliant on government funding. So, our options, compared to yours, are pretty limited. Came across an interesting comment about Rytary during one of my searches “It’s important when going on to Rytary that one is careful not to engage in magical thinking” — in other words, “it certainly ain’t no magical pill”.
Other things I’ve seen caution that the “continuous release” drugs don’t always live up to their promise either.
I know there’s a lot of stigma attached to “mental illness” but I’d encourage people not to neglect all sorts of things to take care of their “stress”, including diets suited to managing stress, and even “formal” “therapy”, or psychological guidance — your brain and nervous system really are under attack! The immediate response of my primary care physician when my diagnosis (which he’d initially given me) was confirmed by the neurologist was “well, I suppose you’ll be becoming an expert in stress management techniques, yoga, whatever!”
February 4, 2020 at 9:06 am #17733Paul D LefebvreParticipant
Caroline, Russell and others, Thanks for continuing this conversation focused on trying to get the meds and dosage right. It does indeed seem like an endless guessing game, but a game the symptoms compel us to undertake. My immediate hope is that discussions such as this will help us better resolve our individual conditions. Maybe for the longer term it will help researchers come up with better, more effective, treatments.
February 4, 2020 at 2:04 pm #17740JOHN BAUERParticipant
one suggestion is to get the mylan 50/200CR, it works better for me than the sun generic. the mylan just became available after being unavailable for 2 years. unlike the IR C/L, where you want it to clear the stomach asap because the lOnger it stays in the stomach the more levodopa breaks down, you want the CR to stay in the stomach where i think it sticks to the stomach wall and slowly releases it’s l-dopa. so i’ll eat 1/4 of a rice cake with the CR, it takes about 90min to kick in. so i take the CR 30min after taking 150mg of IR because i don’t want the rice cake to interfere with the IR. I still have times where the CR takes longer to kick in or it doesn’t kick in at all.
if you aren’t taking more IR during your presentation because your’re embarrassed to be seen taking a pill, use liquid IR
<p class=””>1 mg of levodopa plus 2 mg of ascorbic acid (vitamin C as a preservative and antioxidant) for each milliliter of liquid, mixed daily.<span class=”bibRef”><sup>18</sup></span> For example, five 25/100 immediate-release carbidopa-levodopa tablets and 1000 mg of ascorbic acid are dissolved in 500 mL of tap water, soft drink, or fruit juice. This combination allows easy dosing by milliliter; specifically, 1 mL of this solution equals 1 mg of levodopa. Subsequently, investigators recognized that, if the solution was used the same day it was mixed, the ascorbic acid was unnecessary.<span class=”bibRef”><sup>19</sup></span> To use as rescue therapy, patients may take the same amount of levodopa as they would take in tablet form, although anticipating that the effect will be brief (ie, about an hour). Premixed liquid Sinemet should not be stored in a hot environment.</p>
<p class=””>There is an alternative, easier strategy for using liquid Sinemet as rescue therapy. Patients who need a quick “on” response can dissolve their usual dose of carbidopa-levodopa in a glass of water, soft drink, or juice (well-stirred). This requires no measurement, provided they drink the entire contents of the mixture. As with the premixed formulation, this should take effect in about 20 minutes. Once the levodopa on-response has been recaptured, patients can take their usual dose of carbidopa-levodopa tablet(s) in anticipation of the liquid Sinemet effect wearing off after 60 to 90 minutes.”</p>
February 4, 2020 at 6:55 pm #17747
Thanks Russell for your post. Yes , I have already discovered no magic in these “rescue meds” or newer versions of Levadopa. Inbrigio has not really done much for me. My<span class=”a-size-base a-text-bold”> neurologist did give me an honest assessment of Rytary and inhaled version – Inbrigio. No silver bullet.
I have a significant copay for both drugs under my Medicare insurance </span>
Rytary/$190 for 90 day supply
inbrigio /33%of cost @$325
Discouraging but at least they are coming up with options.
It is interesting to hear other people’s experiences in different regions of the world.
February 5, 2020 at 8:52 am #17748
Also thanks for your research reviews. That drives me crazy so love it when others can read & interpret for me
sorry for incorrect spelling “Inbrija”-is correct
February 5, 2020 at 9:12 am #17751Mary Beth SkylisKeymaster
My Dad hasn’t seen much of a difference after using Inbrija either. His neurologist suggested taking it to make his sinemet dosages more effective. But he doesn’t think it has done much for him. It seems like many of you feel the same way?
I do hope they find more effective rescue meds in the future.
February 5, 2020 at 12:05 pm #17755
So far as I know, Inbrij hasn’t yet been introduced into New Zealand, yet we need something to help us deal better with “off” periods (which I understand it to be useful for??).
Sometimes you need to know the right jargon to better navigate the research literature. I’ve only recently gotten to know the terms “pulsatile stimulation” and “continuous stimulation”, relating to the effects of immediate and slow / sustained release forms of levodopa, but the terms go back in the research literature more than twenty years. From what I’ve seen of its promotion in the USA Inbrij would serve as a more continuous stimulation of dopaminergic effects on brain function, rather than the “on” / “off” effects of the usual drugs. So, one wouldn’t imagine Inbrij to have a pronounced or marked effect. I wonder if more could be done to educate patients about what sorts of effects the different medications should have? Perhaps it would also reduce the tendency to develop dyskinesias.
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