My pharmacy recently switched manufacturers for cd / ld. Suddenly, I'm frail, exhausted and barely able to get through the day. Prior to the switch I was still useful, relatively productive, and comfortable. I feel like I won't make it another month.
Has anyone else had this experience?
My pharmacy made a change years ago. At the time, I questioned the effectiveness. I don't recall why. I am still taking.
They quoted FDA: Generic medicines and brand-name medicines share the same active ingredient, but other characteristics, such as colors and flavorings, that do not affect the performance, safety, or effectiveness of the generic medicine, may be different.
I believe what is happening is the new formulation is being poorly absorbed and so you are getting less levodopa. If you are unable to obtain the old formulation, consider increasing your dosage to get back to where you were.
has the generic one got a brand name? My hubby didn’t do well on Kinson.
The manufacturer is Trupharma.
what is the ratio of carbidopa to levodopa? I just looked up that website and it seems there is. 10/100 tablet? The ones people usually take are 25/100.
If there is less carbidopa not as much levodopa might get through to brain?
also I see they have blue colours to them. I am always suspicious of these coloured meds. The madopar capsule is bright blue with dye. When you are taking multiple a day who knows the effect. There is a yellow one that is in the same ratio as sinemet though. Which are you taking?
It is not that common. In Europe, the 10/100 IR formulation is often used, while the 25/100 formulation is only available in the controlled-release (CR) form. By the way, the color of Sinemet 10/100 IR is also blue…
The tablets are 25/100 and are off white.My extended release 50/200 are bright blue, made by a different manufacturer and seem to work.
Mm there goes that theory then😞
but you say the old ones are extended release. Are these ones too? They are half the strength.
what was your schedule for taking them under the old and new regime?
My schedule was the same as before - two 25/100 immediate release at 8am, noon and 4pm, At 8:30pm, one 50/200 extended release.
So you changed brand for both extended and instant release?
Only changed the 25/100. The ER made by Sciegen seems to work well enough.
Do you feel after taking the 25/100 you are going through any kind of cycle, eg gradually improving over the first 90 minutes- 2 hours then fading out?
Or is your weakness pretty constant?
My doses of 25/100 have basically failed to the extent I maybe get a little relief for an hour, but my toes and feet freeze in pain and I'm weak all day. Walking the dogs takes everything out of me and I have to sleep for an hour or two after.
On the other brand I was up all day doing gardening, yard work, and engaged with my grandchildren etc. Oh how I hope to recover.
I'm so sorry this has happened. I hope you can get hold of some of the original brand.Does the relief happen say 90 minutes to 2 hours in from taking dose? Or would you say that is the worst time?
I exchanged a generic (Trupharma) 25/100 instant release for the generic I previously used that worked well.I left the ER 50/200 alone as it seems to get me through the night well enough.
I haven't personally. But I know someone with the lymphoma that it's happened too, where the manufacturer switched the processing slightly. Same dose, but slightly different pill arrangement. Totally changed their ability to tolerate the medication.
Is there another pharmacy you can get this from? Or figure out with the pharmacy what the original source was and then track down who else carries it? Can your doctor request non-generic and see if that's better? I don't even know if CLDL has non generic since it's so old.
Now that you're low energy, of course that's harder to do. But it could be causing it. Especially when you consider that it has to release, so that involves more than just the core chemical itself.
The meds they sent dissolve before I can even get them swallowed. What else is so different l wonder?
I wonder if you break them in half and put into gel cap they would go down further before dissolving. It sounds like they aren’t getting down far enough.
If you took 1/2 every 2 hours would that be any better, or would it not be enough any of the time then?
The only other things I can suggest is trying the er ones during the day too. Maybe one first thing in the morning as a start with the other doses as usual. It might put an underlying dose under the others so the troughs aren’t so bad.
Or try taking a dopa mucuna capsule at the 2 hour mark or ask if you can try something like entacapone with the levodopa which helps the dose last longer.
yes pharmacy changed my 12.5/50mg cd/ld from sinemet to some generic brand whenever I switch from my 50/100 to these I instantly notice I feel sick and get stomach issues I told my pharmacist but unfortunately it is due to costs as I am in Uk and use NHS you get what your given. I am grateful for the NHS don’t get me wrong it’s just things like this are out of my control
yes. Insurance co changed mall order pharmacies. Dr said it couldn’t be different but I felt worse ever since
Neurologists often prescribe the drug, ie, Co-careldopa or Co-beneldopa and so the pharmacist can give you what they have in stock. After some variation, I got my doctor to change the prescription to the brand I wanted, in my case, Madopar, and it’s been constant ever this. ( This was the advice given to me by the pharmacist).
not all generics are created equally…. The absorption rate and filler content can be different than the brand name.
michaeljfox.org/news/ask-md...
When Merck stopped making Sinimet (brand name carbidopa/levodopa) I felt like crap for months until I found a generic c /l that somewhat helped me, I had to tell drugstore to refill my r/x with that generic. I also read that in the case of generics, there can be a difference (absorption rate, filler contents) within the same generic manufacturer.
yes, we experienced the same thing. The new brand was smaller and didn’t work nearly as well. Luckily our Pharmacy still gets the other brand so as of now we are able to choose the brand we want. I can’t believe there is such a difference in effectiveness of supposedly the same main ingredients. Who monitors these things?
We the patients monitor these things - often to deaf ears of pharma and busy doctors!
YES!! The last month has been overwhelming. I’ve twice almost gone to the emergency room, have been to my primary care twice, called my neurologist. My cd/ld pill changed from a different supplier and I wondered if that was the cause. I asked my pharmacy to give me a week’s supply of my prior pills and I improved, so just last night I I changed out the “new” pills for my original supplier. Now I’m wondering about my extended release pill I take at night as it was switched as well. Your post brought tears to my eyes, because I thought I was having some type of crisis. Pray this is the answer.
I've been dealing with generic brand changes with my c/l for over a year. It took me awhile to realize why my on times were suddenly shortened, my dyskinesia in my legs worsened, legs would shake intensely to where my feet were cemented to the ground. These all surfaced at different times but started after a refill. I never had any of these side effects with Sinemet. imo th8s is all intentional. But that's for a discussion somewhere it won't be taken down.
Yes, I needed to resupply once on a trip and the variety of l/c was different. I did not feel well. I couldn’t wait to get home and get my old stuff back.
I don't leave my CVS without checking to see if the manufacturers remain the same as it has been. Some of the manufacturers are awful. Search when you have a problem and I bet there are issues with other drugs made there. My CVS accomodates me, probably because I've been there a while and I tell them I must have it.
I contacted my mail order pharmacy and they noted adverse results regarding TruPharma's product. They told me they would send an early refill of my previous (yellow) tablets. Here's hoping 🤞
Stay on them because nobody else will. Alpacas are fun animals, do you own some?
Yes, we must advocate for ourselves! We are the only experts that know exactly what our bodies respond to or react from when it comes to medications.
I do not keep alpacas, but my dear friends have a farm with 100+ head. It is great fun to visit them - particularly this time of year with all the cute little ones!
Yes, it makes a difference. I was a marathon runner and the cd/ld that worked the best for me was by SUN manufacture. After doing extensive research the SUN manufacture cd/ld is more water soluble and would get into my system quicker. Don’t let anyone tell you that it doesn’t make a difference, I’ve went rounds with some pharmacist and finally found one that special ordered that manufacture for me. See if you can go back to the manufacture that worked better for you. Take care. Karen
This is a great thread. It would be hopeful to follow up with comments about which brands we've discovered work for us in which don't. See if there are patterns. Can make it much easier as a group to be able to get more of the manufacturers that work better.
I'm not actually taking CLDL. I'm taking neupro and rasagiline. I think the rasagj is a generic, so I'm going to be checking that!
I have problems with different types of rasagiline with some brands eg Teva working better than others. Realised the mesilate version works for me and any brands that are rasagiline hemitartrate version don’t work well.
Interesting. Thanks!!
Hi Curls............Sorry to read about your double dx, just what you didn’t need or deserve, but glad the spleen has responded well.
I like your idea of a site for all the generics PD'ers use, listing which ones work best and worst. It could save some of us unnecessary suffering or worse.
Can someone set up a central place where you enter your generic info for a drug and read what others are saying about their experiences...
Thanks!
Would a database do? We can set up an Excel style spreadsheet on Google docs.
One sheet per type of medication.
On each sheet, the various generics identified by name, manufacturer, and date because they change processes from time to time. Each person enters what they're using or looks for their item to have already been entered.
Then columns for effective, not effective where you enter what symptoms or check mark off what symptoms you're having. Course another column for notes because there's always something to add.
I wonder if people would use that if the link is in unlock health. Or if it'll feel too removed. Is there a way to do a database on here?
The database would need cleaning up once in awhile where a med was double entered. But that shouldn't be too hard.
An alternative that would be more time-consuming and not that hard but I'm not familiar with how to do it... Is a WordPress website with an entry form. That then puts the results up as a table.
Any thoughts? Anyone have ideas?
UPDATE
Received refill of CD/LD.
My mail order pharmacist promised the generic brand that I had been using before TruPharma (the generic that completely failed me).
Although it is not the brand he promised, it is a night and day difference!
The manufacturer is 👍 MAYNE PHARMA.
I was able to get up and go on the first dose and my pain levels have dropped significantly. Maybe I'll get a decent night's sleep tonight!
Feeling optimistic.
Still good pain-wise?
Yes! It has made a significant impact. I'm not sleeping all day. Stood to wash up for bedtime and no intense tremors.
I'm much more back to my previous norms. Yesterday was able to mow the lawn, weed the flowerbeds and walk the dogs.
I love the idea of a central reporting data base for the generic experience!
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