Any advice would be welcome. I take 3 100/25 sinemet a day an have been since January. Before that I was taking 2 a day for 6 months. I also take rasagiline 1mg. The sinemet was making a real difference for me for 4 hours at a time 8am. 12 and 4pm until the last 3 weeks where now it only lasts 1 to 2 hours before i start to get a tension in my left shoulder and my left hip. The hip tension makes walking difficult. This is a new symptom. About 30 mins later my tremor starts. The tremor seems more exaggerated than usual. It's like I'm suddenly not processing the sinemet. I don't eat 2 hours before or 1 hour after each tablet.
Has anyone else had this sudden shift happen to them.
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gingerj
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Are you taking Sinemet or generic substitute? If you are taking generic, then consider that the pharmacist may have switched to another generic supplier. The name of the supplier should be indicated on the pill bottle. I had an experience similar to what you describe, and I returned to (my) normal after I was able to return to my previous supplier. I reported this experience in a post 5 months ago: Generic Drugs: Inactive Ingredients healthunlocked.com/parkinso....
If the label does not say Sinemet, the it is probably generic. If so, there should be an indication of the manufacturer, probably an abbreviation, something like Carvodopa / Levodopa 25/100 xxxxx. Generics are not necessarily inferior. I have discussed a problem that might occur if you switch between different manufacturers of generics for the same medication. I have been satisfied with a generic for Carvodopa / Levodopa 25/100 that I have been using since 2010.
I don’t know if this makes sense but I had a similar experience after I had bronchitis and had been on antibiotics and prednisone. It is 2 weeks later and finally meds seem to be working as before. Not sure how to explain it or if it applies to you in any way. I hope things improve for you.
This is probably a different matter. Antibiotics are losing their effectiveness and sometimes require steroids to make them work. We are presently in a precarious position with this problem and the fact that no new antibiotics have been developed for over ten years...very vulnerable to epidemics. The issue with generics is that the manufacturer has to include equal amounts of certain ingredients (the ones which are supposed to be efficacious) in the brand but not all of them. They are not identical to brands and vary from manufacturer to manufacturer.
Here was our experience: the pharmacy company has a list of meds they keep on hand as stocked. They do not stock everything. If a local store has an order for something not in their stock, it must be special ordered. I suspect that’s your ‘backorder’...they don’t stock it in the first place. The solution to this is to tell your local pharmacist 2-3 weeks ahead of time that you will be needing it and that he should prepare for that by ordering it in. Be sure to speak to the head of the pharmacy and make a note of the person’s name and date right in front of them. Check again a week before you need it to make sure it’s on schedule.
basically what my pharmacist is telling me is that they are not making it right now it is on basically what my pharmacist is telling me is that they are not making it right now it is on backorder do to the demand of the medication I guess I think it has something to do with my insurance and it not being a preferred manufacturer I don't trust the pharmacies here in the US they lie
I've been waiting on Mylan brand for C/L Odt for 7 months. I talked to a few people there & they kept telling me it would be off backorder in May, then June,then July 8th. One pharmacy said they have it but can't send it because my refill isn't due until August. So I called my Dr to see if she could send another script to override the old one. She said yes but haven't heard anything. It's frustrating because I tried 4 other manufacturers & none of them worked as well. I did read an article a few months ago that the FDA shut part of Mylan down because of cross contamination.
it's just really sad to me that we can't get what works the best for us and yes I have tried several others as well and they did not work for me nearly as well I guess we will just see what happens I called Mylan and they said that it should be available July 28th we will see
I too have this problem with my generics.The pharmacies try to say the one manufacturer i want is on back order and then i get the substitute brand and feel horrible! I believe it is really due to insurances and what is on our PREFERRED LIST and what isnt! i dont believe them but feel like there isnt anything i can do because i cant call the manufacturers myself and ask if it is on back order. this saddens me
Why can’t you ring the manufactures? I did when I was told by the chemist one if my husbands drugs was no longer made . Turns out it had only been on the market 4 years and was not in short supply. The manufacturer said they would ring the chemist if necessary but it wasn’t the correct drugs ‘ appeared ‘😀
Might try taking a 50/12.5 every two hours? If needs be you may need to break in half. Idea is to keep levodopa level up at 50 mg every two hours? Good luck
It’s probably not your sinemet but your disease which goes haywire. PDers seem to be more susceptible to colds, flu, etc. and need to be careful. They also seem to be hit harder.
Lucky you! Keep it up. If you get one, try lots of Vit.C (not juice...not enough and drops the blood sugar), immune boosting stuff like echinacea, goldenseal and zinc. We use Thymuplex. Also a good probiotic...we use Florastor.
Three pills a day really isn't that much. (I take 1.5 pills every 4 hours around the clock along with 2 mg ropinirole 4 xs.a day.) Go ahead and try some of the suggestions above, but you might need to increase your medication. Please talk to your neurologist.
I have also noticed that pd change almost overnight. I have had it about 10 years and noticed that in the last year my
Sinemet does not work nearly as
Well keeping the tremors at bay.
I discussed this with my dr. And she suggested taking my pills closer together. I am taking pills about two and a half to three hours apart. I think this helps but
I often forget to take them sooner. The biggest problem is nausea. I have to make sure I eat
Something about half hour before taking pills. I also take 40mg carbodopa with doss to offset the levodopa. Helps the nausea. Good luck.
For tremors, I've learned that cbd oil helps. My hubby doesn't have tremors but takes cbd oil for pains and I take occasionally for my arthritis. Recommended to us by a nurse. Said it had very good results for people with PD.
I tried CBD oil. In UK can't contain thc. It did nothing for me. It's expensive and not regulated so after 3 months I gave it up. The proper stuff with thc may help to relax the muscles and reduce stiffness and tremor. But it's not legal here.
No. But to my understanding (and I'm no expert not even close) - all cbd oils have some TCH contained. We use Head and Heal 1200mg which is 40mg cbd oil per dropper. $77 per bottle. Go to headandheal.com. There is a lot of information on the web regarding cbd oil, hemp extracts and tch.
I have a medical card and I get CBD with a small amount of THC and it really helps with my Tremors and anxiety the CBD oil you buy over the counter that is legal is a waste of money it is very expensive and does nothing for PD symptoms
I used multiple different CBD oils that were bought online and none of them worked at all for my symptoms but we're very expensive I personally would not recommend buying them without a medical card because I feel it is a waste of my money to each his own this is just my personal opinion as I have like I said tried many of them from online sources before using a medical grade
Dopa can cause nausea. Even macuna will cause it from the dopa therein. It’s a bind between eating and not eating. Try eating a little something (not protein), then taking med, then eating a little more (no protein) at the 1/2 hr time before your meal.
On the Fox Foundation website - they have suggested diets - one point of interest to me was cardopa/levodopa - eating protein at same time as taking the RX may cause issues. Wait 30 minutes before/after eating protein before taking the RX.
I started out with the same dose as you did when first diagnosed 3 years ago, took that dosage for about 8 months then Doc increased it to 200mg of Sinemet 3 times a day, and now to get any substantial relief at all I have to take a 250mg dose 4 times a day along with one 2mg dose of "ER Requip" which is supposed to pick up some of the duties of the Sinemet so that I can taper down that drug which is now causing a lovely Sinemet side effect called Dyskinesia.
My personal research found that 2000mg per day of Sinemet is the maximum recommendation, I'm currently at 1000mg a day plus if needed another flexible 100mg tab during the night for very bad foot cramps that wake me out of a sound sleep. Talk with your Doctor, I'm sure he will have another drug on the merry go round of meds to feed to you, they have no idea how each PD patient will react to each new drug they introduce to us lab rats. I'm currently experimenting with the grapefruit study and in 10 days have cut down my Sinemet daily dosage from 1100mg to 800mg a day. I found that self-monitoring and experimentation within reason, along with a lot of online study has helped greatly as I get ready to see yet another new movement specialist next month, let's see what will make it three neurologists, two who are movement specialists, since being diagnosed and the best satisfaction and hope I have experienced so far from this nightmare has come from my own study and testing...
..oh and maybe one day I'll get motivated enough to tell the story of how my first neurologists initially gave me a happy little drug called Artane which only accomplished landing me in a nursing home at age 52 for 4 months with sever audio and visual hallucinations, Man the stories I can tell you about that mind altering experience.. Again... they have no idea how each PD patient will react to these dangerous mind-altering drugs ...
Blessings... Good Luck and God Speed!
2 Corinthians
And the Lord said to me, “Paul my grace is sufficient for you, for power is perfected in weakness. Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties and trials, for Christ’s sake; for when I am weak, then I am strong!
GJ can significantly improve how long each dose survives in the blood, which increases how much makes it to the brain. Obviously, be very careful with this, as it's almost like increasing your dose. A few of us are using it to reduce how much actual C/L meds we take. It also seems to level out the "Ons and Offs". But still "early days". More info here: healthunlocked.com/parkinso...
Starting drinking 100ml of GJ per day ten days ago and so far I have reduced my Sinemet by 200mg per week. Again I want to state that I am not a doctor and you should tell your doctor about your GJ plan first before adjusting any meds.
Sounds like some of you GJ fans are on to something...it will interfere with the efficacy of some meds which in your case seems to be cutting back on the dopa in the meds. Maybe some of you are overmedicated. If you can afford it, Rytary is a great time release med.
Sheesh. I was hoping that I'd get at least a year between dosage increases. My neurologist appointments have been annual upto now. There goes positive thinking 😟
Hi there, several people have suggested to look at the manufacturer on your bottle , and PLEASE do that . The genetics are NOT all the same and if it’s a sudden change that could be the culprit. It happened to me and it was the AVANTE manufacturer that put me back like I was at day 1 , 6 years ago. I also got the run around from pharmacists but found one that tries to order every month from the manufacturer that I prefer and has stock piled meds for me on his shelf. He also expressed that all pharmacists should do that for people bc some people are sensitive to certain additives. But I am also on 6 cd/ld 25/100 a day as well though . Karen
Yes Mylan works for me as well but the one that works the best for me is by SUN manufacturer. It makes me angry when they try to say they are all the same and then for those that aren’t as vocal, meds keep getting added and changed and there starts a whole other problem. Karen
This recently happened to us. We switched getting RX from Walmart which was only $9 for 90 days to Humana insurance by mail order which is only $0. Well, hubby started falling again. Every other day. After looking and noticing both are generic but from different manufacturers I called Walmart. They said the fillers could change results. Asked me if I wanted to get a month's worth - only $18 without insurance (couldn't get through insurance as we just got our allotment for the quarter). Said yes. Well, he stopped falling but now the freezing is happening and his legs feel like rubber. Not sure what to do. Neurologist appointment is not until October. The Neurologist only works 1 day a week as now he's doing some sort of fellowship. I know … time to find another Neurologist.
Hi there gingerj Have you tried the grape fruit juice that a few on this site recommend. I've just started my husband on 100ml a day. That amount works for some, increasing the effectiveness of their levodopa. Some need 200ml.
I’m afraid it’s probably just that your body is producing less on its own so you need to take more to make up the shortfall. You probably should see your neurologist.( mine was pissed off when I changed my dose without discussion!).
Yes. Rasagiline 1mg. I'm hoping to get an appointment asap. I just wanted to explore the possibilities because I know she'll just say take 4 a day, see you next time.
If you had been taking more Sinemet for longer, or if your meds had increased recently, I'd say that you might be experiencing overmedication. It's still worth considering. Is the "exaggerated" tremor still of the "fluttery and annoying" type or is it more forceful? If not forceful, then it's still probably PD symptoms (undermedicated) rather than dyskinesia (overmedicated). The tension in your shoulder and hip could be a mild dystonia, which can be caused by several different things. You can read about dystonia on page 81 and overmedication on page 76 of this free online book: pdrecovery.org/wp-content/u...
Hmmm. You take three 25/100 a day, which isn't a lot compared to many. Since you call it "stiffening" (which is what PD does) and not something more energetic like "spasming" or "rigidity" (as in a constantly rigid muscle) I'm going to agree with others who are telling you that it's likely not overmedication and that you might benefit from increasing your dose. I hate to say that because I'm always in favor of keeping doses as small as possible. That said, I think there is such a thing as burning off the dopamine through exercise. I currently walk 2-3 miles a day, but I have walked up to 5 miles at once and I definitely felt as though I had used up all the dopamine. I felt very fatigued and barely able to put one foot in front of the other, as you describe. Also, you describe your tremor as simply "more" and if it was dyskinesia you would be describing it as "strong" or even "violent". So, again, probably not overmedication.
So I'd say you might not need an increased dose if you can reduce the mileage and that stops the problem, or if you can't then you might want to try a slightly increased dose and see if that helps.
Hi ginger. I don't know if you are aware that no Pd medication does anything to slow down the progression of Pd. At best, it relieves certain symptoms for a short while. The the time..
The symptoms continue to get worse all the time.
The only way you can change the progression of Pd is through exercise!
You may be tempted to believe that you are unable to do any exercise. That may or may not be true. Pd medication can have serious side effects and while you ar e on them you may feel that you are no longer able to exercise.
The sooner you get off them the better.
If you want to overcome your Pd symptoms, as I have, then look at my website - reverseparkinsons.net and contact me. It costs nothing
Thanks John. I still work as a postman. Walking 10 miles most days. I ride my bike to work 50 miles twice a week. I walked Hadrian's wall 94miles in 4 days last month. Until the last few weeks I thought I was doing enough. I agree exercise always makes me feel better but right now im struggling at times. It's disheartening.
Maybe you're doing too much of a good thing? After all the studies that have shown benefits from exercising didn't test for as much exercise as you're doing. Since you're a postman, you might not be able to reduce the 10 miles a day, but if I were you I think I'd try. Just a thought.
All that walking is commendable but none of it helped produce GDNF unless it was performed at your fastest speed. You cannot do a postman's work flat out all day! That is impossible. Riding a bike is good exercise, but it does not produce GDNF. You must try to do fast walking every second day, if possible, while still doing your job. I do it early in the mornings. I started doing the fast walking for 20 minutes every second day. I only increased that by another five minutes every second week. That meant that I walked 20 minutes for two weeks, twenty five minutes for two weeks and thirty minutes for two weeks. If I found that I could not maintain maximum effort at any of the levels I was walking, I did not increase the time until I was able to do so. You are a human being and you have to listen to your body.
If you are unable to walk at your fastest rate for twenty minutes then start at a level you can maintain your fastest rate.
Several well informed posters on here refer to the Northwestern University study that reveals that one of the best if not the best exercise routines is to do 30 mins of high intensity aerobics at 80 percent of max heart rate. HDT protocol is worth exploring as well, imo. john
I found that my meds increased in the early days and then settled down. Everyone has differing rates of progression and some people find they need more medication with exercise while some take less. As you have no infection I think you may need a medication review. Your experience is not surprising or odd. As to generics you would need to know when you changed to generic meds and was it when things changed for you. For me I have found that I never can rely on PD, some days it ‘behaves’ and other days it doesnt and I can rarely work out why. Good luck. And for what its worth I dont think you can do too much exercise.
Thanks. I'm thinking about all the things that have changed that may have contributed to the sudden downturn. I stopped my magnesium spray a month back. I started taking b1 but only 100mg to begin with. It could be a number of things but I agree with you it's probably time I had a medication review.
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TY for your responses Donzim
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