Hello, my wife was diagnosed with Parkinson's 12 years ago. She is suddenly having terrible stiffness and tremor all over. She takes 4 Rytary every 4 hours. Can anyone suggest anything that can give some relief, if even a little! Thank you
Tremor out of control and stiffness - Cure Parkinson's
Tremor out of control and stiffness
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kz59
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26 Replies
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Hi Kz59It sounds like she may need to see her neurologist. He/she may tweak her meds or add something for the “off times.” My husband is also 12 years out and we are in the midst of experimenting to find the right “cocktail” for symptoms as they progress. Best to you and your wife.
Does she see an MDS or a general neurologist? How long has she been taking this dosage? Tremor is a side effect and not knowing what dose she is taking, it may be too high. I would record when and how much Rytary she takes and any side effects she experiences. Report your findings to her MDS and discuss if a med change is indicated.
Yes she see's an MDS. Thank you!
What dose of Rytary is she taking?
How long has she been on that dose?
Have you tried reducing the interval between doses or raising the dose?
She has been on this dose for over a year now. This happened so suddenly. Is it possible that it could suddenly be too high of a dose for her?
Is there any event that coincided with the onset of this aggravation?
In any case, compare her symptoms first thing upon arising with later in the day. If symptoms are less upon arising that indicates overmedication. She is taking a high dose.
Do take a look at healthunlocked.com/cure-par...
I was diagnosed 13+ years ago and have been on Rytary for the last 6 years of it. I take quite a few supplements and exercise, so those may be other factors that affect my dose. I take no other prescription meds. My Rytary dose started out at 5x 245mg per day and has slowly and steadily increased to 7x 245mg per day. (I have to get up once at night to take a dose.)
The easiest way for me to compare my dose to your wife's dose is to calculate mg/day. Assuming that she also takes one at night (you don't say), that looks like this:
Me: 245mg x 7= 1715mg/day
Your wife's: 95mg x 4 x 6 = 2280mg/day
But, if she doesn't take a middle-of-the-night dose, her daily total is 1900mg.
I know that if I instantly to 1900mg/day dose, I would experience a reaction similar to what you describe but much less severe. If I went to 2280mg/day I would probably have very strong reactions similar to what you describe.
Recently, I accidentally took one too many of my 245mg Rytary and it was not pleasant! Going from 1715mg/day to 2280mg/day would be like me taking over 2 extra doses of my 245mg Rytary a day, and I can't even imagine what my reaction would be to that! That's why I resist increases until it's obviously needed. I only increase my dose if my symptoms demand it.
There are many, many, many differences between your wife and me, so this is just something to consider. Based on my neurologist's recent comments, my dose is considered moderately high, but not currently a problem. But, again, that's her opinion based on my own situation.
Is her doctor unfamiliar with Rytary? Regardless, you might want a second opinion. And, of course, try to think of anything that might have changed for your wife (supplements, diet, exercise, other prescribed meds for other conditions, etc.)
Amantadine helped me in this situation.
Did you have any side effects from amantadine?
You dont say if your wife takes any supplements. There are several that some have had moderate success with. Ive tried quite a few but settled on two. I take melatonin for RBD (it doesnt help me) but it is also a very good antioxidant. You can find discussion threads about it here. I also take glyNAC (glycine + NAC I take separate pills but I think you can find the combination) which is supposed to replace glutathione. In the 5 years since my symptoms started my symptoms progressed before getting better. I still have my tremor constipation (which miralax helps alot) and RBD, but my stiffness is way better bradykinesia is improved as is my balance. I wish you and your wife good health and good luck. If you have any questions I will try to answer.
Yes, I agree with above. Likely to be over medicated if stiffness is 90 minutes after dose and shaking at about 3 -4 hours after dose. Can she go onto the rapid released madopar tablet that you can cut, then adjust the quantity, if necessary cutting tablet and taking more frequently. This is a fairly common side effect of slow release products.
When that happened to me, my neurologist put me on a higher dose, of Sinemet! That solved my problem! I’m doing fairly well, 8 months later!
My husband has been on 2 Sinemet pills every 4 hours. He has really been struggling with weakness and pain in his upper leg muscles. Today we thought we would increase the dose to 2 1/2 pills every four hours. We are trying to get in touch with his neurologist but he hasn’t returned our calls. So far the extra half helped at least the first dose did.
Hopefully, you’ll be able to get hold of the specialist in the next few days! My Doc did not want me to go above 2 Sinemet, every 4 hrs, because of possible dyskinesia’s ( abnormal involuntary movements ).
In June I was very stiff with Dystonia for hours a day while I was still taking my Carbidopa/Levodopa. When my doctor added the drug Amantadine it stopped the stiffness, but I had severe tremors until I started taking Propranolol. I can walk now, my balance is still not good, but I can walk! Also, I don't have tremors as often and they are not as severe since taking the Propranolol, but this drug is also used for high blood pressure, so it may be very harmful to someone with normal blood pressure, or low blood pressure. You could speak with her Neurologist about it.
Hello, I've just seen your post and I think I am experiencing something similar to what you described. One of my medications (Neupro) makes my muscles, from head to toe, so tense that I can't move for at least an hour after a fresh patch application. I take about 500 mg per day more C/L than before starting Neupro only to cope with the effects of the patch, and my Neurologist was not concerned about this at all. I also developed whole-body shaking which is so bad that I need someone to hold my arms and legs while the shaking lasts. This repeats itself every time I'm low on C/L but high on Neupro. Things get slightly better when the patch starts to wear off.Could you please tell me more about the type of stiffness you have had? I just am trying to understand why I'm having such abnormal reactions to anti-Parkinson's medication.
Thank you in advance!
Reading some of the replies here and the link given to the article about overmedication. Maybe you should speak with your wife's Neurologist about her being overly medicated before adding more drugs. I think I was overly medicated at some points.
My husband has been on Rytary for about a year and a half. Four doses of 245mg and 95mg - 8, 12, 4 and 9:00. He also has dyskinesia and we asked if we could alter his dosing. His neurologist agreed so now he only takes the two pill combo at 8 and 4:00 and at 12 and 9 he takes only the 245 mg. I'm hoping we can drop the 95 altogether and that he improves.
Rytary is so expensive and we can't get any help from any foundation. (apparently retired teachers make too much money!!!). AND we had to move to San Diego to be closer to our daughter! ugh... Does anyone have any suggestions on getting it cheaper? We've tried MyRytary, Prescription assistance, and a host of others.
I've had good luck with PAN Foundation. I'm in northern CA, so I can belong to Kaiser Permanente and they have an assistance program which is currently paying for all of mine.
The Pan Foundation denied us too. All of the denials were because we make too much money. Wish they could see our monthly financial output! You are so lucky to get the assistance. We've been given samples on occasion which definitely is a blessing. We are part of the Scripps network here in San Diego. Even our health insurance is more because we live in California! They keep raising the rates. Last premium hike was $60 for each of us each month. We are with Physicians Mutual which is an A+ company.
I live in central California and belong to Kaiser P.
Might be worth looking into if you can get it, because their medical assistance program might do a better job of recognizing that income isn't everything.
For awhile, they were sending me twice as much as I needed. I told them that they'd made a mistake, but they kept sending it for another 6 months! Oh, and their mail pharmacy service is fantastic - they mail your pills right to you, up to 3 months at a time!
Maybe swap some c/l for Mucuna Pruriens bean 20% capsules from Amazon in between lower dosage of c/l? Or maybe even better use the powder form you buy from India through Amazon called ZANDOPA. You mix it in a glass of water, possibly 1 tsp to try, and drink that. The flavor isn't too bad! It is Nature's Dopamine. For many years, ZANDOPA and capsules of this bean helped Dad's overall symptoms better than c/l did. Definitely talk with her MDS Neurologist. I see this post was a year ago now. How is your wife?
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