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    • #18896
      Mary Beth Skylis
      Moderator

      One of the scary parts about starting a medication is that you might have to experience negative side effects. In order to temper certain symptoms, we might cause issues elsewhere in the body. Which side effects have you experience from your medications? Do you still struggle with them today?

    • #18975
      William R
      Participant

      It seems when I take sinemet for a while after the dose, I get a jaw and throat tightness that is uncomfortable and makes it harder to talk. Has anyone else experienced this? If I wait until the Parkinson’s symptoms come back full force, I experience less of the tightness. My dose 250/25 5 times a day and I have found if I take 1/2 of a pill every 2-3 hours, I do better. I have had Parkinson’s for about 7 years, Entacapone gave me intractable diarrhea. Azilect is very expensive on Medicare, Selegiline interferes with sleep. Mirapex works, but sedation can be a problem. I am beginning to sound like finicky old man, so I an going to quit – hopefully this will be of help to you.

    • #18976
      Robert Harris
      Participant

      It can sometimes be a challenge to separate what is a side effect of medication and what is a symptom of Parkinson’s. For example, fatigue, insomnia, constipation and a few other presentations can be related to either the disease or the medication (or maybe both). If  you read the monograph accompanying these medicines, you’ll note that they will say, “This drug can cause sleepiness, insomnia, constipation, diarrhea, etc. because people respond in surprisingly different ways the the same medication. It’s a situation where you can’t say, “This worked for Joe, so I’ll get some for me, too.”

      You and our neurologist need to work  together to develop the right drug cocktail that suits you best with the most tolerable set of side effects.

      Here are the meds I’m taking or have taken and what seem to be the associated side effects:

      Mirapex / pramapexole dihydrocloride. Dosage ranged from 2.5 mg to 1 mg per day. It’s a dopamine agonist. It made me sleepy. In fact, as is clearly spelled out in the warnings,. I almost fell asleep while driving a couple of times. So I did an experiment and stopped taking it. I didn’t notice any difference, so it’s off my list.

      Azilect /  rasagiline 1 mg once a day. This is an MAOI-B designed to slow down the oxidation (and therefore the neutralization) of dopamine. I stopped  it as an experiment and noticed a definite  reduction in effect. Since I didn’t notice a reduction in side effects, I went back on it, and am still on it. However, next time I see my neurologist, we might be doing another test, since rumor has it that its true effects are minimal and depending on insurance it can be expensive.

      I recently changed from CD/LD 25-100 and 50-200ER  five times a day to 25-100 and Rytary 61.25-245 (substituting it for the CD/LD 50-200 ER) and it seems to be less effective for me. Yes, the fancy new and expensive med seems not to work as well as the old, cheap, generic that my previous neuro scoffed at. SO, next meeting, we are going to discuss changing back.

       

    • #22674
      Rajan
      Participant

      I have had Parkinson’s symptoms since 2013 and diagnosed as Parkinson’s since 2017.

      I am on medication with Syndopa 275, 1/4 tablet, 3 times a day and Artane 2mg 01 tablet morning and evening. A side effect I experience as follows. With above dosage I just manage dexterity in my arms. But I feel it is not sufficient. For the first two hours since taking medicine, my arms, fingers move faster when typing etc, then 2nd hour till 1.5 hours I feel muscle tightness and lack of dexterity in upper arm and shoulder, most prominently in left arm. The painful feeling in muscles is somewhat as when you do exercise after a long gap. After about 3.5 hours, this feeling diminish slowly.

      When I change the dosage of Syndopa 275 to 1/2 tablet, 3 times a day and Artane 2mg with same dose of 01 tablet morning and evening, I feel much better in dexterity in arms (fingers move rapidly across typing keyboard and can move the tooth brush across teeth with control and rapidly). With this dose the muscle tightness starts from about 3rd hour and lasts for about 1.5 hrs.

      I have tried various combinations of above dosages, but with maximum dosage  of Syndopa 275 to 1/2 tablet, 3 times a day and Artane 2mg 01 tablet morning and evening. However I am unable to find a dosage that would avoid the muscle tightness in arms.

      I have tried even only with Syndopa 275 or only with Artane 2mg to determine which medicine cause the muscle tightness and found with both medicines it causes the muscle tightness and lack of dexterity.

      I would like to know if anybody feels as above and managed to avoid the muscle tightness and lack of dexterity that comes after taking medicine.

    • #23425
      LLouB
      Participant

      Hello, I am new to this forum. I was diagnosed with PD four years ago and have mild symptoms. I have a problem that I wonder if anyone else has experienced. I take the carbidopa/levodopa combination, but when I take it I feel bad. If I take very much my blood pressure drops a lot, to the point where I cannot function. My doctor would like me to take carbidopa prior to taking that combo, but after a week or so I had a bad reaction. It seems that my doctor hasn’t seen this before.

      Has anyone else experienced this? Any suggestions? Thanks for any info you can provide.

    • #23437
      Trish K
      Participant

      I get dyskinesia, sweating. I was on too high of a dose and it was terrible 1% addiction side effects. I get unique side effects from every med. my 1% one had to be reported to health canada.  I can’t think of what else probably because 5, years in it all seems normal.

    • #23438
      twok
      Participant

      The above replies are really interesting. I experience similar side effects. The main issue for me is the dyskinesias. I will consider issues especially the muscle tightness which I attributed to the disease and see if they might be a result of medication.
      Sooo happy this issue was raised. l look forward to reading everyone’s replies.

    • #23440
      Beth T Browne
      Participant

      I was diagnosed July 2020.  I was put on Leva/Dopa.  I only weighed 98. I told the doctor I often have problems with new drugs.

      Two weeks later I had been so nauseous I could not eat, and lost 5 pounds.

      A couple of months later she put me on Rytary.  I did not have nausea but a month later I had no appetite, and I had anxiety.  She said Rytary did not cause anxiety, but the folder accompanying the medicine said it could.  I spoke with my pharmacist and she said it could.  I know how I feel, yet my doctor was denying it, so I stopped going to her.

      My new doctor said Rytary could cause anxiety and lost of appetite and a few other things.  So, he took me off of it.

      I am concerned as I am not on anything now.

       

    • #23677
      Sheila
      Participant

      Hi everyone, I’ve been reading the posts on this forum for a while and found them most informative and helpful but this is the first time I have responded.   My husband (age 77) was diagnosed with PD in 2017 and for the first 3 years or so was very well managed.  Then he started rocking and swaying quite a lot to the degree that I wondered if he would actually topple over!   He never has but it does worry me.   His neurologist dismissed this as dyskinesia and I’m reasonably happy to accept that but do wonder if there is something that can be done about it.  However, more recently my husband has been suffering with what he calls “a very hot head”.   It doesn’t look hot or feel hot to me but it clearly worries him a lot – he says it feels like his head is pulsing with heat.   The only thing that helps is for him to sit in front of an air-conditioner on a very cold setting and also have a fan blowing directly on to his head.   The medications he is on are levodopa (Kinson), Azilect and Madapar.  I am wondering if any of you have experienced this type of side effect from PD medication or if anyone knows it as an actual symptom of PD itself.   We have spoken to several doctors, nurses and other medical professionals but nobody seems to have an answer.

    • #23688
      George Sharp
      Participant

      i can tell you that the meds I take have little or no side effects i take Madoper 3 times a day and  one Azilet and Artane 3 times a day it helps me control the tremors in my left hand  but other than that my side effects are minimal , i do have a strange thing that is making my life  a bit awkward  I  have a numbness on one side of my nose and on my top lip it is very bad when  I  to talk my wife says she cant understand me i told my Doc about this and he is sure it is not related to my Parkinson’s and he has tried all the MRI scans you can possible get but all they show up is that two of the nerves on my face are slightly  effected  but when they join up with the rest of the nerves on my face they are working fine m so he is at a loss i am not joking when I tell you I have had about 6 scans a lumber puncture and god knows what   else . so any one who have had the same kind of thing and has a cure please let me know. George

      • #23689
        Sheila
        Participant

        Hello George

        I don’t have PD but I have experienced the sort of numbness you describe – in my lips and also my tongue.  It turned out to be a vitamin B12 deficiency and as soon as I started taking vitamin B12 supplements the numbness disappeared and hasn’t returned.   Worth a try I would think and I hope it helps you.

        Sheila

        • #23700
          George Sharp
          Participant

          hi there Sheila i will give it a go  GEORGE

    • #23699
      LLouB
      Participant

      This is LLouB again. Having difficulty taking the Levidopa/Carbidopa combo. It can make me feel really bad and I think the issue is my blood pressure.

      Has anyone had blood pressure issues with this medication??

      Thank you for any insights.

    • #23701
      George Sharp
      Participant

      I am lucky that   I don’t have any adverse side effects of this medication must be a bugger for you .Try Madhapur it has a different type of drug to ease the strain of the Levodopa  which is the same drug you are taking  but the other drug is different , they also are a capsule which in my opinion is much easier to take  all the best George

    • #23729
      Alan Tobey
      Participant

      My “favorite” all-time reaction was just a month ago, when an inadvertent double dose of Aricept (aka “poisoning by neurologist”) caused me to experience eleven hours of multimedia hallucinations and a  jump in my MDR of dopamine drugs.  No extra [email protected]!

    • #24369
      Laurie
      Participant

      I’m on a low dose of Rytary for a month now combined with Azilect that I’ve taken for 10 months after I was first diagnosed. I have itchy skin, a dry cough, runny nose (could be pollen allergies), more constipation than I originally had. It didn’t help my tremors, but has helped me with improving my energy level which was terrible before.

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