Is it the meds or the PD?

Or something else entirely? I started on C/L about 10 days ago and have felt worse each day since. I'd say I have the flu but I had a flu shot. The tremor is worse, I'm extremely nauseated and hurt all over. Is this a typical reaction and if so does it pass fairly quickly? Usually I get out with my dog in the morning but couldn't manage it today, had a friend pinch hit for me.

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  • Hi Becky;

    That sounds awful. Makes one really wonder about these meds!!!

  • I would call your doc right away, no this is not the typical reaction.

  • Thanks. I put a call in to her.

  • I agree that you should call the doctor.  That doesn't sound quite right.  Everything turned out ok, but several years ago,  I had a reaction to an antibiotic that effected my liver.  I had flu like symptoms & shook all over & the then the whites of my eyes turned yellow. Don't panic though because the liver regenerates itself & it could be nothing,  but I think it would be best if you called your doctor just to be sure.  Let us know how you're doing.

  • Thank you! I sure will.

  • Keep a open mind about what you are going through it may be the meds or something else completely. I have not had this happen to me i have been on c/l for 18 months But every one is different. 

    Take care  

  • Boy, that's one thing that's guaranteed, isn't it? We're all different. (Sigh)

  • I don't know where you live but I am in Canada and was really in bad shape when I started sinemet C/L. When I spoke to my neurologist's nurse (it took me several weeks to call her) she prescribed me a med. called domperidone (the name here). It instantly got rid of the side effects and I rarely need it now. I take it if I am going to have a big meal out or if I want a glass of wine.  What a huge difference. Hope you have luck getting something to offset the side effects. CL changed my life and spirit so hang in there. Let us know how you are doing.

  • Thanks, mm. I'm going to ask her about domperidone. 

  • I know that C/L can make some people really nauseous. Ginger tea is great for that. But your reaction sounds much worse! Hope you're feeling better. Let us know!

  • Ginger tea it is. I still feel queasy but much less so than earlier today.

  • btw--just because one gets a flu shot doesn't necessarily mean one can't catch the flu--although I'm sure you know that. 

  • Actually, I didn't know that! Thank you for filling me in.

  • I've only been using Sinemet for a couple of weeks too and while my reaction hasn't been anywhere near as bad as yours I found taking the advice to cut back the amount to 1/4 tab at meals for a week, then 1/2 (actually had to do 1/3) tab meals for a week has helped. Slow and gradual seems to help me avoid light headedness and full body sweats/feeling ill. I'll increase them a bit more this week but still not keen on jumping to a whole one per meal. No sign of positive effects yet but no doubt have to get up a bit. I felt more like you describe last time I tried to start it and went too fast with the increase.  let us know how you get on. 

  • Ah. I do tend to have to titrate up slowly with most meds. I think I'll slow down on the C/L. Thanks.

  • Thanks for the kind words and the helpful advice, all. I must say I thought my doctor's response was kind of offhand, but maybe not ... She said "There are no reported cases of this. Sinemet does not cause shaking to speed up. Hope you're feeling better." I do feel a bit better tonight. I'll just play it by ear and see how it goes in the next few days -- at a lower dose for now.

  • I take c/d too and it made me sick, my Dr said to drink a cup of milk or eat a small something with protein in it to stop the neausea.  It works for me.... no neausea.

  • Becky, the flu shots contain some pretty frightening stuff.  I would rather take my chances with the flu than be injected with poisons.  Your body may be reacting to the vaccine.  I haven't taken a flu shot for over 30 years, and I don't intend to.

  • I got the flu last winter.  First time.   It was horrid, had to take more medication - strong antibiotics.  I'm sure it accelerated my progression too.  So I'm definitely going to have flu shots from now on then if I do get the flu at least it won't be so severe

  • Ever since I started getting flu shots I never get sick with anything. Well, except for PD.

  • Beckey

    Hang in there with your meds, you are in this for the long haul and it can take quite a while for our body to adjust, this condition is a biggie and so are the meds so little and slow and just take as long as your body needs.  

    Good luck, you will get there!  

  • Bless your heart! Comforting words -- and confidence-building, too.  :-)

  • Sinemet not only made me feel like I had a severe case of the flu, but it also gave me panic attacks. I couldn't function in any capacity. My neurologist weaned me off of it (all symptoms disappeared after a few days). It was hard to determine any benefits as I was so ill. I am on Azilect only with no side effects. Luckily I am still in the very early stages. I also recently tried a trial of Mirapex and started on a very small dose which left me stumbling around, dizzy and nauseous, falling asleep during the day and wide awake all night. We really are all different. My biggest concern is around what I will do when I really need the Sinemet. Good luck to you

  • If you're not already,  please start exercising, it is the best medicine of all.  You can do non-contact boxing, crossfit,  walking, biking, etc. , but make it vigorous & at least 3-4 times a week.  Boxing has helped me tremendously.   Rock Steady Boxing is the program I am in & it's strictly for PwP's (people with PD).  I've been with RSB for 9 yrs.  Research has shown that it works.   You can go to rocksteadyboxing.org  to check it out and/or ask me any questions.   Or....you can ask Bailey about crossfit or John Pepper about walking.  It all helps no matter what stage you're at with your PD.

    Keep fighting! 

    Debbie

  • Rock Steady Boxing is spreading across the country relatively rapidly.  A great forrm of exercise, its specifically for people with Parkinsons and is effective because its paced exercise, works on extensor muscles, helps with balance and most of all psychologically it is the perfect paradigm - fighting back.  And its great for women as well as men.

  • Are you involved with RSB?  If yes, where?  I love it & it  helps so much AND it's fun & supportive.  RSB now has 115 affliates,  just opened one in Toronto.   Just can't say enough about it. 

  • My doc encouraged me to do it. Someone from RSB gave a presentation to the neuros and they were very impressed. But the local affiliate here is too expensive for me. Maybe they have videos on Youtube. I'll check it out.

  • I started c/l 6 months ago, a fast increase up to 8 immediate release tabs a day. Symptoms were much improved but I had nausea and increased anxiety. I always ate a bit of crackers or dry cereal which helped, but I felt so sick all the time. Over time the nausea went away and now I'm on the extended release, 5 tablets a day plus Neupro 6 mg patch. Neupro made me a little dizzy but my balance is good. My Neuro told me the IR is almost like cocaine and makes you feel panicky. I felt so sick all the time. I am almost "normal" now most of the time. I did the Big exercise course and have worked at getting my strength and stamina back also. Just before diagnosis I had 2 stressful events and as a result, got shingles. In two months I felt like I was down for the count!  I had no tremor but many of the other symptoms including stooped posture. When I get tired that is worse I've had trouble with knowing what's symptoms and what's med side effects. Now on the new regimen I wonder if there is not symptom control equivalency--or is it disease progression. Have an appointment soon. Yes, I was told that if you've seen one PD person, you've seen one-- everyone is different. I'm in two different PD exercise groups and we're all different. Mine is mostly posture and gait difficulty now, with easy fatiguability.  I've rebuilt some core and leg strength so I can now turn over in bed, easily stand from sitting, and stand long enough to get things done. 

    Back to the point, yes the meds cause nausea, it usually goes away and yes, you might also have a virus. Knowing which it is might be a waiting game. I have days that I feel awful and maybe the next day I feel good. A lot of coping with this for me has been accepting that.  I was 69 in Dec and was always very active. My onset event was extreme fatigue and severe anxiety. SSRI and low dose Valium helped for two years. When the fatigue got even worse the internist and the psychiatrist both said "it's just your anxiety" and I got so weary of hearing it. Then I  saw a symptom list and diagnosed myself. You can't believe how badly I wanted the neurologist to say those words. But alas, I now walk the path none of us want to be on. Let us love one another through this. 

  • You said it all, Ann.

  • When I started on C/L, I took whole tabs frequently trying to regain normalcy (a dream) and C/L made me tremor worse and I was hyper. Wondering though, are you taking an extended release C/L/? If so don't break it in half.  If you are taking extended release whole I think you should contact the prescriber asap and tell them your symptoms. If you are taking normal C/L like a 25/100 tab try taking it just when you "feel" you need it and maybe only half. You know, when your tremor gets up into your shoulder and vocal chords tighten and your voice gets whiny, that's when I feel it's time to medicate and sit down awhile. Nausea was a symptom of mine when I started on C/L and it decreased when I learned not to take it so often and in smaller amounts. But in the mornings if I take a full dose to help my body "catch up" on what was depleted overnight I still get nausea and then I eat a few ginger snaps. I hope you get better guidance from others. I don't know if any of what I wrote really is going to be helpful to you. Everyone is different. God bless.

  • Thanks, Buzz. I'm amazed by the courage so many people in this group show, taking the lead in meeting PD's challenges.

  • I'm late replying but hope your nausea is better.  In the book I'm reading (The New Parkinson's Disease Treatment Book) Dr. J. Eric Ahlskog says that 'mild nausea from levodopa therapy usually dissipates with continued use.' If it doesn't you can take C/L with non-protein food like dry bread, toast without butter, soda crackers or half a banana.  He has other suggestions too: #2 (taking C/L with food is #1) is extra carbidopa may be administered. Plain carbidopa without levodopa is available by prescription and goes by the brand name Lodosyn but is expensive. #3 C/L may be started in lower dosed and increased very slowly. He says you can start with one-quarter of a 25/100 pill three times daily.  Then increase weekly by raising all three doses by one-quarter tablet increments. He says the brain nause center tend to habituate tot eh levodope when introduced slowly.  The downside of this is he says that it may take 2-3 months to arrive at the optimal levodopa dose.  He has other suggestions too--these are the first three.  He says C/L is generally well-tolerated which was my experience thankfully. If you can find the book at the library or buy it, you may like it.  I do.

  • That is exactly why I refuse to take that crap , had the same reaction and it never got better , took it for over a year aand was the worst year of my life. Have been off for a year now and feel alot better . Movement , marijuana and meditation all are beneficial for the symptoms.

  • Thanks, Pappy. Looks like you're on to something there.

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