Stalevo

[nancy]

Help! If anbody has had experience with stalevo, good or bad, please let me know. My mother has been on it for a few months and she has been complaining of increase in stomach pains and constipation and some word finding difficulties which I think started after she began stalevo.
She is 79 and deteriorating quickly, this parkinson's disease stinks!
Has anyone tried CoQ10? If so what dose? What about homeopathic remedies. I'm puling out all the stops because I can't just sit back and watch her suffer. Thanks for anyhelp
Nancy

[CarolynS]

Nancy, I was on Stalevo for a few months this year.

The side effects bolded below are the ones I had. My Internist and I finally came to the conclusion that Stalevo was the culprit.

I aw my neuro about a month later and she simply said, "Yes, I could have told you that. Glad you stopped taking it."

I suggest that you call her neuroligist's office and tell them of her problems.


Side Effects
http://www.stalevo.com/hcp/tools/product.jsp
The most common side effects of STALEVO therapy are dopaminergic in nature (eg, dyskinesia, nausea). These side effects may be manageable with alteration in the drug-dosing schedule, ie, extending the dosing interval, reducing the number of doses per day, or changing to a STALEVO strength containing less levodopa. However, rapid withdrawal or abrupt reduction of STALEVO therapy should be avoided.

Other common side effects include diarrhea, hyperkinesia, urine discoloration, hypokinesia, abdominal pain, dizziness, constipation, fatigue, pain, and hallucinations.

Other less frequent side effects can include: other mental disturbances, orthostatic hypotension, rhabdomyolysis, severe diarrhea, dark saliva, and symptoms resembling neuroleptic malignant syndrome.

[october]

I take stalevo 150 mg, 3 times per day. I was taking sinemet and mirapex. I started buying alot of things on ebay. This worried me because I normally don't do that kind of buying. I mentioned it to my neuro and he said I could be getting obsessive behavior which is a rare side effect of mirapex. He switched me to stalevo and discontinued sinemet and mirapex. I haven't had any side effects from stalevo, no stomache ache, no diarrhea. I do have constipation, but have had that since before stalevo. Stalevo is supposed to help with muscle stiffness and tremors and does seem to be helping. By the way, I am 58 and was dxed 1 yr ago. The stomache ache your Mom is having is probably from the medication. Hopefully the doc can switch to something else or adjust the dosage. You're right, parkinsons does stink. Wish I didn't have it.

[ramona]

I am on Stalevo for Dopa responsive dystonia. I had started another thread, but got no replies, so I will reply to this one. ;)

I did have abdominal pain when I first started taking Stalevo, but it eventually went away. I normally have diarhea, so the "constipation" was not a bad thing for me. That, too, has gone away, though.

I take 50mg, 4 x a day and am working up to taking 100 for each dose rather than 50.

My main problem is palpitations and chest pain. My neuro said that the chest pain could not be from the Stalevo, but it is very definitely related. Every time I added a dose or increased a dose, my chest would hurt for a few days. I finally called my cardiologist, since I am at a high risk for heart problems, and he has scheduled a stress test for next week.

I really hope it is not the Stalevo, as it has been a wonder drug for me.

Blessings
Ramona

[DJM]

I don't remember exactly when I took Stalevo, but know it's been within the past three years. From the very first, Stalevo was not a good drug for me. I got very "zippy" on it, something I now know was caused by too much levodopa hitting at the same time. A better description of it was that I was "high" - unable to sit still, talking a lot and rapidly, feeling like my motor was racing inside.

The other problem I had with Stalevo is NOT a documented side effect of the drug. A couple of weeks into taking Stalevo, I developed raging, painful carpal tunnel syndrome (CTS) in both hands. I had EMG's done and was diagnosed as having "severe CTS in both hands" and was recommended for surgery. Since I had never had even the slightest sign of CTS before starting on Stalevo, I decided that must be what was causing my swelling which resulted in the CTS.

So between the feeling zippy and the swelling resulting in CTS, I chose to go off of the Stalevo. Instead, I took the same drugs that Stalevo is made up of - Sinemet and Comtan - but I took them individually in a proportion that worked much better for me.

In earlier discussions of this drug (BC = Before the Crash), others had experiences similar to mine but just hadn't realized that Stalevo might be the cause.

Good luck finding a good drug combination for your Mom. Don't give up! All of us with PD face constantly changing physical and mental symptoms which require "test driving" various drugs to make us the best we can be. Some work well, some don't. Your Mom will just have to keep trying different combinations until the best one possible is found.

[DaleD]

Thanks Donna for your very informative post. It possibly answered a lot of questions that I did not have answers for previously.

Although I don't take Stalevo I do take Sinemet and Comtan. Following my DBS surgeries last year I developed swelling in my left hand with excruciating pain. I talked to my neuro and my DBS programmer and they didn't think it could have anything to do with my surgery. I went to physical therapy for 6 weeks with no relief. Mu neuro retired and I went to another. He referred me to a doctor for possible carpal tunnel. Tests showed I had severe CTS in the left hand and moderate in the right. I had CT surgery in May and lived on pain pills for 6 weeks. I told others I would rather have 100 more DBS surgeries than go through the pain I experienced following the CT surgery.

I am now taking less Sinemet with a combination of CR and regular. The pain has mostly disappeared but now wonder if I would have made the same decision had I known this.

[nancy]

Thanks to all of you who responded to my request for info on stalevo.
It just helps to validate what I thought, that stalevo is probably causing the abdominal pain and worsening constipation. She had a complete CT scan of her abdomen today and everything was negative.
I appreciate your feedback and it's so nice to know this site exists.
Any info or experiences with anxiety? She seems to be having increased anxiety attacks which makes her tremors worse which then makes her more anxious. Her MDS recently ordered 0.5 mg ativan but clearly it's not enough to get her through the day.
Thanks for all your help, my thoughts are with you all.
nancy:o

[DJM]

I'm sorry you've gone through so much pain with your CTS. I have to tell you that I've dealt with the pain of delivering two babies and contend with periodic migraines too, but the CTS pain was truly unbearable. Wheether or not your CTS was caused by Stalevo or by other causes, who knows? You made the best decision you could at the time.

I encourage you, and everyone else too, to keep coming to this site because this sharing of patient-to-patient experiences is what makes it unique and valuable. I liken the information found here to the connection between babies teething and getting diaper rash. Medical science says there is no connection between teething and diaper rash while most parents will tell you that their babies bottoms were red and sore when they were cutting teeth. Similarly, our common experiences with PD make us the experts!

Nancy, I have no info to share on anxiety, but hope you'll get your Mom's problems resolved very soon. Good luck!