any input much appreciated
 

hi, I haven't been on here much lately, but truthfully, I definitely should have been. For the past 2 months I have been having the strangest symptoms. I have had tremors after taking my morning dose of stalevo and it was as if I had not taken any. Other times, during the day, all of a sudden, I would get severe neck pain/spasms, then dyskinesia and swelling and pain in my left ankle. I tried taking another pill, tried not eating to help the 1st pill absorb better, tried eating certain foods, well, you get the idea. in between this happening, I would have days when I was pretty normal. I could not figure it out. the dose i was taking was the same dose i had taken for a year, nothing had changed in that regard. I was also taking azilect 1mg and requip xl 4mg every am. All of these symptoms were helping to increase my anxiety and I was given Lamictal for it because the MD felt it might be the safest with the other drugs. after a few weeks on that, my neck became so painful that I couldn't turn my head to the left. at this point, I have had to quit working. I saw my neurologist in december and he started to adjust the meds. I started on 125mg of stalevo in the am, and then 100 mg every three hours during the day. today I am on 75mg of stalevo every 4 hours 4 x day. I am taking requipxl 6 mg. I am still having neck pain, and spasms, still having dyskinesia, still having tremors, mostly when the pain is most severe. my physician's nurse wants to know whether I am on or off, and frankly, I don't know. The worse symptoms seem to happen within a short time after I take a pill, and never the first dose. after all this time I have become very discouraged, and I am beginning to understand what it feels like to be severely disabled and hating every minute. I always tell people I am hanging in there, but how long can I do this without wanting to give up. I am not a wimp but this disease is trying to do me in. thanks fg

You said that nothing had changed. Are you saying that all medications had stayed the same? As well as the stalevo?

Something HAS changed and if itisn't a med then it is something else. Any illness or infections? A flu shot? Any unexpected stress? Change in diet?

Isolate
 

Hi,

Sorry to hear about the discomfort. A couple things I wondered as I read your post...what pill are you taking before the worsening of symptoms? I take it that you mean Stalevo? When do you take the Azilect and how long have you been taking it? I sometimes question the newer drugs like rasagaline and agonists when it comes to weird side effects. I experienced deep joint pain from taking it and had to stop- this is an effect in younger patients...problem is that it did not entirely go away. :|

I have also experienced having too much dopamine in my system at once when on Mirapex, Azilect, and Sinemet- this brought on really painful leg cramps; I've read of this in other forums as well- I think it's an "over peak" dose dystonia. So, I'm wondering if your med combo is too much at once or taken too close together, or if it's one drug thrown in the mix that is the culprit. I try isolating, or taking my drugs apart a little separately to pinpoint if one thing seems to trigger it.

One last thing. Comtan inhibits an enzyme that breaks down levodopa, on its own, it does absolutely nothing to help alleviate our symptoms. So, with that in mind, it's not surprising to read that a side effect is onset of new movement disorders!! This make sense given that the drugs mainly work on helping with dopamine transport and there are several other neurotransmitters at play which are then thrown even further off balance and maybe result in new 'symptoms' that are really only related to drug treatment. Try talking to your neuro about it.
Laura

I am on sinemet and comtan which is similar to taking stalevo.
I have had more tremor since starting comtan, I have virtually none without it, but it is so good with mostly everything else that I accept that as a lesser evii.

I get neck pains as a wearing off problem. They are similar to what you describe, and I did not have them before. Wearing off and wearing on have given more problems than before.

I would agree that on entacapone it is harder to tell what is on and what is off, because the wearing off and on is a bit more acute and it's harder to tell which is which. I have found out by trial and error, and missed doses what to expect, and that I can wear off hard and fast, and thats when things are more painful.

I try to anticipate when the best time is to take my next dose, and not to wait until I have actually worn off. This varies according to whether I have spent hours at my computer, or been out and about. My best predictor that i am about to wear off is that I notice I am feeling 'normal' or asymptomatic, and am at my most functional! This is usually followed very shortly by wearing off symptoms. If I remember this is when I take my meds, right after I notice, but I don't always catch the moment. (Somebody once wrote about this being the best time, and it works for me - whoever you are, thankyou!) When I get it right the transition is smooth....

The first part of your description sounds as though you could have been slightly undermedicated and needed to bring your doses closer together rather than increase them. You have changed things since then without it helping. I'd go back to what it was when it was helping, and make any changes very slowly, so you have time to see what is really happening.
say, just increase the morning dose when the tremors were not being improved, and watch and see, the little extra could help later on too. If this doesn't help then bring the second dose half an hour closer..... and so on. With your neuros help, of course......

If you make it a gradual process you can see what is happening...........

It's one of the worst things about Pd, trying to get the meds to work for you.....

Lindy

Wordy, but good info
 

Isn't this place just the best? You can go see your neurologist, discuss side effects with your pharmacist, or read up on what you're taking,, but there's no place better for finding the practical answers than here.

None of us give medical advice (I hope). We just tell what has happened through our experiences with PD and then we share it.

Dyskinesia : First of all, it's a well documented side effect, and I have definitely had the same experience of Stalevo causing increased dyskinesia (or increasing what you may already exhibit). So the neuro and I played around with dosing. (and this does NOT happen overnight! It takes a good 2-3 weeks, if not longer, to smooth out the transition problems).

I have a time with pain (which one doctor calls medication-induced dystonia), and I have had two surgeries for cervical fusion (3 levels in my neck). -

I have heard people say they were able to reduce their Sinemet® (carbidopa/levodopa) when they added Stalevo® (entacapone) to their regime. That could possibly be true, because the entacapone added to their Sinemet® is supposed to make it work longer, BUT you should know that Stalevo® is just carbidopa/levodopa and entacapone combined into one pill.

This might not be information that you want or can use, but here are the various dosages of Stalevo:

Stalevo® (carbidopa, levodopa and entacapone) is supplied as tablets in six strengths:
Stalevo® 50, containing 12.5 mg of carbidopa, 50 mg of levodopa and 200 mg of entacapone
Stalevo® 75, containing 18.75 mg of carbidopa, 75 mg of levodopa and 200 mg of entacapone
Stalevo® 100, containing 25 mg of carbidopa, 100 mg of levodopa and 200 mg of entacapone
Stalevo® 125, containing 31.25 mg of carbidopa, 125 mg of levodopa and 200 mg of entacapone
Stalevo® 150, containing 37.5 mg of carbidopa, 150 mg of levodopa and 200 mg of entacapone
Stalevo® 200, containing 50 mg of carbidopa, 200 mg of levodopa, and and 200 mg of entacapone

source: http://www.pharma.us.novartis.com/pr...df/stalevo.pdf

I take the 150 pill 3X daily. The 200 caused horrible dyskinesia, causing me to lose about 50 lbs! (but I was a porker, so that worked out for me).
But my last appointment to a movement disorder specialist, he said it was easier to adjust changes in your meds if you took the Sinemet and Comtan® separately.
So as soon as I use the Stalevo that I have onhand, I'm going to go that way.

Also, you mentioned that you are taking Azilect® .
I tried it, but we didn't mesh. I think it is tolerated (my opinion) when used as monotherapy and not mixed with other drugs. (see below*)

If we knew all of these dangers before we pop those pills, we'd probably never take these chemical-alterin agents for our brain. But we have already started them and unless under close watch by a doctor (like in the hospital) you should never just stop taking any of these medications. Anyhow, if we did we'd all be as rigid as a totem pole and very debilitated.

So here's more info on side effects of which you should be aware:.

*AZILECT® is generally well tolerated. Side effects seen with AZILECT® alone are headache, joint pain, and indigestion. Side effects seen with AZILECT® taken with levodopa are uncontrolled movements (dyskinesias), accidental injury, nausea, weight loss, constipation, low blood pressure when standing, joint pain, vomiting, dry mouth, rash, and sleepiness. Be sure to tell your doctor about these and any other side effects you experience when taking AZILECT®.
http://www.azilect.com

Although recent research has shown enough evidence to allow Teva (makers of Azilect) to remove the warning, foods high in tyramine should be avoided. Here's a link to a "printable card" provided by Teva that you might want to keep on hand:
http://www.azilect.com/tyramine.ashx

Best to you Floridagal! Where in FL are you? If you don't want to say here, leave me a private message.
Peggy

HI
 

I apologize for taking so long to write again. Thankyou so much for your advice to me earlier this month. Since I wrote about my horrible experience with severe neck pain and dyskinesia, right ankle swelling and tremors, I am still trying to figure out the best Stalevo dose for me. I think the ideal is somewhere between 100 and 125mg every 4 hours. Along with RequipXL 6mg and AZilect 1mg. It continues to be a struggle to figure out what dose is causing what symptom. Today I have had tremors, stiffness, transient neck pain,dykinesia of my feet. My muscles feel very tightly wound, even after getting a really good massage treatment yesterday. After all your input I realized that in November and December I started taking Actonel fror osteoporosis 150mg monthly for two doses. I found out that it can cause very debilitating neck spasms and muscle pain. So I am no longer on that and thank you Reverett for saying something HAD to have changed. All my neck pain is not gone but at least I can turn my head most days. And so I just want to say thanks again for reading my message and for all your helpful comments. This really is a great site, you are the best! FG