September 12, 2019 at 5:06 pm #15495
Since PD is progressive, it may be inevitable we need to change our medication dosage. Have you had to adjust your meds because symptoms were getting worse?
October 2, 2019 at 7:37 pm #15638RobertParticipant
I am detail oriented, so bear with all the details. And I ask for forgiveness up front for my lame attempts at humor. If you can’t have a sense of humor with PD I don’t know how you can cope with this “very interesting disease, this PD”.
I would be interested if anyone else has had similar experiences in getting to either the right doseage or the right meds to get them on a somewhat even keel with the “very interesting disease, this PD”.
I have indeed had to change my medication doses. Here is my Parkinson’s medication travelogue so far. ( dates are approximate).
Nov 2018 started on 1 1/2 sinemet 3 times a day.
Feb 2019 added entacapone with the mid-day sinemet dose. To see if it extends the on time.
June 2019 added sinemet at bedtime
At this point it seemed like the sinemet quit working!
Now we (my Doctor) decides to get serious about the meds!
July 2019 changed to 2 sinemet 5 times a day plus 2 sinemet controlled release at bedtime plus 2 sinemet if I awaken during the night. Which I always do. That adds up to 14 sinemet a day.
July 2019 added 1 florinef to counter low blood pressure.
August 2019 added 2nd florinef to counter continued low blood pressure.
I got two different pills for bladder problems too.
So a year ago I was started on 4 1/2 sinement daily to start and now eight months later I am on 14 sinemet daily and two florinef pills for low blood pressure.
I do feel kind of drugged up.
Oct 2019. So now I am now starting to again get occasional wearing off at the end of each sinemet dose.
Next appointment is in November, my one year anniversary of starting meds.
I think I would like to return this high dose version of PD and get the low dose version. I am new at this. Can I still do that? Did I miss the deadline or something? I do have a good excuse if I missed the deadline. I have PD!
October 3, 2019 at 6:53 am #15639
hi robert,thanks for sharing this and i love your sense of humor! sad to say, i think most of us struggle with the meds. trying to find he right ‘cocktail’ of drugs to alleviate our symptoms can be quite daunting. do you exercise and how is your diet?
November 15, 2019 at 2:55 pm #16477DanParticipant
Robert, thank you sir! Great to read personal accounts and approaches to PD symptom control. I am 71, was diagnosed in 2009, likely had telltale signs a few years prior. As on time permits I will reiterate my convoluted trial and rabbit – chase with meds.
November 19, 2019 at 10:32 am #16526
Hi Robert, congrats on keeping track of your meds regiment, but for myself, after 11 years with PD, that approach becomes overwhelming, and half the times, there never seems to be rhyme or reason to this “on” and “off” effect from my meds. I’m off when i think I should be on, and I find it so hard to eat the right foods at right times, which doesn’t help. I’ve had plenty of adjustments over the years, I’ve tried Apokyn injections, had DBS surgery 3 years ago, now take my meds 4x a day, a neupro patch, and inhaler, and still can’t get it right, lol, still get off periods, still have balance issues, freezing and walking problems. So for me, it’s part of my life, I deal with it, and move on, too many things to complain about with this disease over the years, I’m thankful for my wonderful friends and family, they are my support to keep going.
November 19, 2019 at 2:49 pm #16533
you have a wonderful attitude that will serve you well in battling this disease.. taking my meds and when to coordinate that with meals certainly overwhelms me…
November 19, 2019 at 9:45 pm #16539
Oh, for sure, meds and meal time is hard to get the scheduling right, and I’m definitely fighting a losing battle, I lose track of time, especially when I’m out, and before I know it I’m at lunch eating a burgher, at that point nothing else to do but enjoy the burgher, and deal with my PD after.
November 20, 2019 at 7:23 am #16540
I’m a forum moderator here. My Dad was diagnosed with PD in 2013. I’m curious about how DBS did or didn’t impact the timing of your drugs? My Dad just underwent DBS a few months ago.
November 20, 2019 at 10:25 am #16542
Hi MaryBeth, it didn’t actually effect the the timing or dosage of my meds, but it did somewhat get my balance back, i was able to walk and stand again without always being on the verge of falling down. My major issue has been balance and it did help, it accomplished the major goal and reason I finally went through with the operation, I was able to walk and dance with my son at his wedding three months later.
I’m not sure I helped much, but I wish you father the best and that he has positive results from the operation.
November 21, 2019 at 12:40 am #16555DanParticipant
Laura, wow. Your dragon is much bigger than mine. I have to say, It appears that there is certainly more to be tried, than what I have done up to now. I haven’t scratched the surface compared to what you have been through. Trying to schedule ld/cd capsules and keeping a log, watching food intake is where I live now.
585 / 2340 mg/d ld/cd = 12 cap / d
January 13, 2020 at 3:57 pm #17467Mike PParticipant
I am 47 years old and my MDS has suggested I switch from (1) pill of 25/100 generic Sinemet twice daily to (1) pill of Rytary 36.25/145 twice daily. So far it’s been much less effective but it’s only been 5 days.
January 14, 2020 at 9:19 am #17470
Hey Laura & Dan,
Yeah after Dad had the DBS surgery, he started to notice changes too. Like his dyskinesia has significantly reduced. But he thinks that his freezing episodes have gotten worse. Did you feel that anything changed for the worse for you?
January 14, 2020 at 9:20 am #17471
Did you have positive results with Sinemet? I’m curious about why you switched over.
January 14, 2020 at 2:10 pm #17484Mike PParticipant
Given my age (47), my MDS wants to be very careful increasing C/L dosage. Dyskinesia commonly occurs within 5 years for younger populations after they begin taking C/L. Several recent studies have suggested that C/L is not disease-modifying and the dyskinesia is just a result of disease progression. If that’s true, many believe young-onset patients are wasting potential golden years by delaying C/L treatment. My MDS wants to err on the side of caution and be very cautious with C/L dosage to minimize the possible risk of developing dyskinesia sooner rather than later. The immediate-release hasn’t been very effective for me at the low dose I take (total daily dose of 50/200) so she wants to see if a more levelized controlled-release version would work better for me without having to significantly increase the dosage. I never feel much better after C/L but I definitely feel worse if I don’t take it. I was hoping C/L would be a miracle of difference and it has been disappointing so far. Finding the right dose seems like it will be a long journey based on what I’ve read of others’ experiences.
January 14, 2020 at 5:25 pm #17488
Hi Mike, I’ve had PD for 12 years now, about 5 years ago after dealing with dyskinesia, to the point of not being able to keep my balance and basically always on the verge of falling,,he suggested one more med I had not tried yet, Rytary, and it made a world of difference for, the time release aspect of this med had a much better effect on me. Give it a little more time, and watch the food intake, it messes up how the meds work.
January 21, 2020 at 10:03 pm #17574RobertParticipant
It just dawned on me that I have had three of four days or so that I have felt sorta normal. Sorta of how I expected to feel about this far out from diagnosis and being on Sinemet. You know, the honeymoon period like all the books say you should expect. After all , this is supposed to be a slowly advancing thing, this Parkinson’s. This is the first time I have felt this way since diagnosis.
Let me tell you how I think this finally happened for me.
I was first diagnosed in May 2018 with stiff and slow Parkinsonism. (All doctors I have consulted are Movement Disorders Neurologists) Dr. said really early and no meds needed and see you in a year if you want. 2nd opinion in August 2018, just three months later. HY Stage III and possible MSA! Should start some meds but not sinemet. (I did not disagree with the HY Stage III because it correlated with how I was then. I really fell off the Parkinson’s cliff in those three months). But I knew that the MSA just did not make sense to me.) 3rd diagnosis in October 2018. Slow and Stiff Parkinsonism and HY State II 1/2. (This diagnosis made sense to me) Started on Sinemet. Obviously, I signed up with the 3rd opinion folks.
I also have low blood pressure problems and bladder problems.
From November 2018 through October 2019 we upped the Sinemet and lowered the Sinemet and upped the Sinemet and added low blood pressure medications and bladder/prostate meds.
Blood pressure. First Florinef and now Midodrine. Florinef works by messing with your water storage and such and blood volume. Midodrine works by making your vessels squeeze when you stand up. I felt like I was drowning with Florinef. The switch to Midodrine worked just as well for me in raising my standing blood pressure just as much as the Florinef without the drowning feelings. So that is what I am taking now.
Bladder problems. I was having male bladder problems which is apparently very common in Parkinsonism. It was presumed that I was having prostate problems since I am a 66 years old guy. So I was given two prostate/bladder pills. Both of which lower blood pressure!! And I was referred to a Neuro -Urologist who did some very interesting bladder tests that I am sure the rest of the world don’t even know exist! Result was that there was a significant obstruction causing retention etc etc. Most often such results to those tests are caused by prostate problems. Prostate surgery was scheduled! On the day of surgery, the Neuro-Urologist, at the pre surgery conference, said he wanted us to be prepared to not having the surgery because he now was feeling that this could be a neurological issue and not a prostate issue. He said this was just a professional judgment he was considering after carefully reviewing my file, other PD exam files, and the earlier tests. He instincts were correct. At pre-op testing, I had a very interesting ultrasound procedure and very interesting cystoscope procedure which showed the prostate and bladder parts of my plumbing was not only normal but actually better than normal for my age. So no surgery and, by the way, you didn’t and don’t need any prostate or bladder pills. The problem was sorta like the general Parkinsonism thing as regards to walking and moving etc. (I never really had much of any tremor, by the way). The exit valve of my bladder emptying system is not communicating well with my brain. So all those bladder and prostate pills that lower blood pressure were stopped.
By the way. In case you haven’t figured it out by now. When I say I had a very interesting test, I am giving you a hint that it the type of test that when they tell you what they are going to do and after they have done it, all you can say is “Oh my goodness!”
That brings me to where I am now on my medications.
My Doctor’s consistent theme is to treat the problems.
For the stiff and slow Parkinsonism. Up the carbidopa/levodopa until it works. I now take enough Sinemet and Sinemet Cr to get 24 hour coverage. 10 to 12 25/100 Sinemet pills plus 4 50/200 Sinemet CR pills per day.
For the low blood pressure. Midrodine three times a day through mid afternoon.
To fight apathy and lethargy. I now take Cymbalta twice a day.
For the bladder a very interesting solution. I now am familiar with self-catheterization!
If I am late with a Sinemet dose, I really really know it. As others have said, I cannot have food in my stomach for the Sinemet to work for me. That means no food 2 hours before and 1 hour after taking the pills.
So that is the story. Flood the guy with Sinemet and just get on with things. It apparently is working now.
Let’s see how long this works.
Thanks and best wished to you all.
April 14, 2021 at 3:18 pm #20534DeborahParticipant
After watching my mother’s sad decline from PD over the years, despite her multiple drugs and strict adherence to MD orders, I was determined to avoid all medication for as long as possible for my own journey. After 5 years I was getting pretty desperate for help so I tried Azilect with no relief, requip brought me nausea, headaches, and apathy, so I started C/L 25/100 twice, then 3 times daily with good results. I was satisfied with this regimen for about a year until the dose didn’t last. An added Neupro patch didn’t really change my discomfort. Still I avoided the recommended 4th tab, terrified of dyskinesia. This March, 2021, I saw a new physician who told me my information was faulty, that my remaining dopamine neurons would be better protected by taking Rytary 4 times daily for around the clock supply of C/L in a slow release form. The transition was difficult, to put it mildly. My complaints of severe twitches, spasms, headaches, insomnia convinced my doctor to order a lower dose, which is still not perfect, but is an improvement from the immediate release C/L. I still have frequent breakthrough tremors and sensations of being “off” prior to my next dose, but feel better.
My questions are:
1. Is long term use of Rytary likely to increase my dyskinesias, which have subsided greatly with my lower dose (61/245 1capsule @ 7am, 12 pm, 5pm, and 10 pm)?
2. Does anyone use a 1/2 or full tab of immediate release C/L prn along with the Rytary?
3. Is anyone taking Gocovri also as an aide against the Rytary induced dyskinesia? My doctor ordered it for me, but as a minimalist, I’m still reluctant to take anything I can avoid ( plus I hear it’s super expensive; I never started the free one month samples).
4. is there any literature besides the 200 person trial with Gocovri that documents long term effectiveness or side effects? How about long term use of Rytary? As a retired RN, I need more evidence, both written and personal accounts from fellow PD patients.
Thanks for any and all input.
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