It seems like my symptoms are progressing at what I feel is an alarming rate. i have had a knee repacement 8/29/24. currently, i take Crexont.(seems to be a rytary look alike, a timed release capsule that reduced the amount of times I had to take meds ) from 5x/day with rytary to 3x/day with crexmont.
i feel like each day i am getting worse. when i got up in middle of nite to use bathroom, i can barely stand and need to use the walls to get me into the bathroom.. the rate i am going, i feel as it is only a matter of time before i am in a wheelchair . during the day, i struggle to get out of a chair and I really feel spacy when I talk and have such a difficult time speaking. balance has also deteriorated.
Has anyone experienced what they feel is fast disease progression?
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Jmellano
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I agree that operations make things worse; my usual schedule of carbodopa was not followed in the hospital where I recently had a hip replacement and I c ame home with a uti infection which has been a nightmare due to more meds to take. I am trying to get the med schedule going but they are not working.I have gone from being independent, to having to hold onto the wall to get around and relying on my brother to take me everywhere and the meds are making me nauseous now; I talked to my dr. and she is going to change my meds to extended release carbolevo. I hope to the this helps; I am 70 years old and my neurologist has wanted me to do deepstimulation and I am desparate and am looking into it too.
It would seem knee replacement related and my thought around that is once you are fully recovered from that PD symptoms may return to more normal levels. Meds, surgery, illness all seem to adversely impact...and then, voila, things seem to return to a more manageable place, I hope this is the case fur you.
I feel it is one or all of your drugs - talk to your neuro and reassess your meds. My PWP went thru that with Sifrol and Entacapone - he has been off both now for almost a year and has reduced his Madopar IR and is better than ever! Balance, speech, posture, gait, comprehension all much better.
Hi Jmellano, I am sorry to hear about your progressively worsening symptoms. As you probably know, age is comorbid with PD, i.e. our muscles become weaker as we get older anyway and since you recently had knee replacement a few days of a sedentary lifestyle doesn't help. I remember my 83 yr old mother having to climb 4 flights of steps to get to her apartment. I thought the exercise would help build some muscle, but it just wore her out. I suggest a bit of testosterone (T) and creatine could help build muscle. I am NOT a medical doctor so BE SURE to ask your neurologist about using T. One side effects of T in females (and males) is that you are "hornier" than usual. T is also rough on the liver, so liver enzymes need to be checked periodically. I take T and am more motivated to "work out".
hello Jmellano, like you, am defiintely experiencing some sort of aaccelerated form of parkinson's. Diognosed in 2023, my first symptoms were occationally moving feet, and tremors on my dominant left side. I've gone from 2 LD every 4-5 hrs. to 2 LD every 2:15 mins, (including a couple times during the night) plus 4 mg rotigotine/24hrs, plus .5 mg rosagiline/day. When I'm "ON" LD, I'm almost symptom free, but if my LD gets blocked by protein, it comes on quite sudden and I'm in pain, stiff, cannot move or walk for 1 -3 hrs. I never thought I would progress like this. I also have extreme anxiety which I suspect may be contributing to the accelerated rate.
These are high doses for a short period, especially for a woman who is generally more sensitive to C/L medication and can often manage with half the dosage compared to a man…
I experienced a similar progression over two years with increasingly higher C/L medication. By simultaneously developing peripheral neuropathy, I was able to connect it to a severe vitamin B6 deficiency. Within a month, I began to notice a delayed honeymoon period, and after a year, I could manage quite well without C/L. If you haven't done so already, it might be beneficial to have your B vitamin levels checked, including B6, which is often overlooked!
Thank you Esperanto for very observant comments. I've also heard about vitamin B 12 deficiency caused by LD and the damage it can cause, but I wasn't aware of Vit B6 deficiency. I already have an appointment with by GP to get my vit B12 levels tested, and I am now going to ask to have my vit B6 tested as well. If either are low, it could explain a lot!
This type of informtion sharing is what makes a forum like this so valuable. Now that you have alerted me to the Vit B6 deficiency I done some research online and I can see there is a real risk for this type of deficiency, in particular when prescribed a high dose of LD as is in my case. The other contributing factor that puts me at risk is that I've had to stop eating meat because due to the short intervals between doses if I eat meat, (which is slow to digest), it blocks my levadopa! I have been taking a a B50 complex supplement along with other vitamins, but NOT regularily, which I am going to start now, as a precaution. I've also read that Vitamin B levels can appear normal for some reason, when they are in fact, deficient. So, regardless of the results, I will supplent the B vitamins from now on.
What's somewhat surprising for me is that my neurologist has never alerted me to this risk.
The metabolic influence of the various B vitamins differs significantly. A so-called B50 B-complex takes this into account only to a limited extent. Furthermore, most of these products are not bioactive. Regarding B6 supplementation, the P5P form (pyridoxal-5-phosphate) is preferred. Higher doses of B6 pyridoxine can have toxic effects.
I've read the link you've provided which has a lot of valuable information on vitamin B complex. Along with supplementation I am going to focus on getting more dietary sources that don't interfere with my LD . Thanks so much
Hi Jmellano - Consider getting a genetic test through the PDGene project. (It was free when I did it last year.) They will send a test kit that you return by mail. Then they contact you to tell you if your DNA includes a known PD gene. That knowledge could help with treatment options and understanding your condition. Check it out - parkinson.org/advancing-res...
Edit: i realize that you do not take c/l as this is what my rant and theory is about below. My apologies for the length.It's past my bedtime and can.ot sleep because of..(I'll let you guess)
I have a theory on a potential reason why many of us are experiencing rapid increase in worsening and new unforeseen new symptoms. Before I digress I'll provide some bullet point experiences i have had that supports and created this theory.I've been taking carbidopa /levodopa for 18 years and in the first 10 years i experienced zerpo side effects. And yes, I'm aware of how the side effects don't start until many years in. But in my case my dyskinesia, dystonia, and increase of intensity and frequency of tremor episodes began when I was given my first 3 month supply of generic form of sinemet and was informed that sinemet would be no longer available due to the inability to produce a continuous supply: a manufacturing issue articles noted. They sounded a bit too vague and lacked the effort (or intentionally) to explain the reason(s) why manufacturing of sinemet was being canceled causing various manufacturers to to be allowed to manufacture carbidopa/levodopa. And stated:
"Generics and brand medications are both tightly regulated by the FDA and only a small amount of variability is allowed between brand and generics and between different generics. Most patients can switch from brand to a generic version or between generic versions without noticing a difference. A small number of patients may be able to detect a difference in their response. If this is the case, a small change in dosage may be enough to allow a patient to tolerate the change in formulation."
Ok so I'll get to the point...in short, it's easy to suggest and receive an evaluation that the reason behind your rapid worsening and/or new symptomsnis simplythat your PD is getting worse and will increase your dos/ frequency and will try to find a recent stressful event to blame and note it on your chart. While the the true root cause is in the generic brands of c,/l!
Ever since I've been forced to take generic brands of c/l I've experienced very intense side effects. I've been able to notice the fluctuations between brands. And just as of mid december I thought I had each brand/mfr figured out and noted on my pharmacy's account that I cannot take certain brands/mfr I was forced to use a mfr i had put on the "cannot take " list 6 months back for a week until the order of the brand i can somewhat tolerate came in. And lo and behold i predicted the side effects and was couch ridden the weeks of Christmas and nye. Ok maybe a little pity party here.. I love Christmas and to be bed ridden, have limited mobility and unable to be with my loced omes all because of the inconsistencies and fluctuations of generic brands,/mfrs claiming to be that of sinamet!
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thnx much 
Suggestions For Reducing 'Off' Time 
How Much Rytary??
Switching from sinemet to rytary
