Hi everyone,I have a list of medications I acquired from an issue of an APDA newsletter that I receive in the mail. The list is of

medications that PWP should never take, medications that a doctor ought never give to a PWP. Whenever I see a new physician or medical professional of any kind, I give her/him a copy of this list, explain what the list is and ask that person to put it in my medical records. My question is: why do doctors ignore this list when prescribing medications for me? Example: I saw a new doctor this morning, gave her a copy of this list of medications "never to be taken by PWP," along with the list of my regular medications that I take everyday and a list of my past surgeries. Later in the morning, at the pharmacy I use, I decided to be certain that the doctor didn't give me a script for a medication I, a PWP, should never take. Sure enough one of the scripts was for a medication on the "never take" list. I did not get the prescription filled and will call the doctor in the morning about what happened.

Why don't people understand that PD is a serious disase? Just because I happen to "look" healthy, doesn't mean I shouldn't be taken seriously!!!!

Thanks for letting me vent! I feel better, but will still speak with the doctor in the morning.

~fallon

16 Replies

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  • Is it possible for you to post this list? I was recently given a medication for pain and when I read up about it was not suitable for people with Parkinsons. I stopped it immediately. It would be very useful to have these details to hand.

  • I would like to see this list too. My experience is that the effects of drugs on PWPs varies dramatically and that only a few drugs might be universally to be avoided.

  • The link shown below will take you to the online version of the APDA newsletter that contains the list of "do not take" meds for PWP. The title of the article is 'Potential Serious PD Medication Side Effects and Interactions' and it can be found on page 5. On page 6, you can find a list of medications "to be used with caution" in PWP.

    stlapda.org/wp-content/uplo...

    To follow up on my visit at the doctor's office on Monday...... I spoke with a P.A. at the office on Tuesday.  I learned that to make it clear to the doctor that I cannot take certain medications, I need to say that I am "allergic" to those medications. 

    So, as I have heard said, "When I know better, I do better." 

    I will make it clear to all the medical professionals I see that I am "allergic" to all the medications on the list.

    I hope this information is helpful.

    fallon

  • Wow, this article could cause some confusion. Writing about many of the PD medications used today and their major side effects is fine, but mixing it in with medicines that should be avoided or used with caution creates a potential mess of misinformation, in my opinion. "Use with caution."

  • Thank you for this great link. As others have said; this may cause some confusion, but knowledge is always better then a lack of good information.

  • I agree with you.

  • Thanks for the info.

  • Wow! This is certainly confusing to me! I am on a number of these so called never take for PD medications! I will be discussing this with my Neurologist, who is one of THE BEST in the USA, in the Chicago, IL area, in PD! I think a list like this should never be published to the public with out a warning to never stop any medication with out checking with your doctor first! Very upsetting and confusing to me! Only my opinion! But beware of things like this!! Even if it it the, so called, ADPA! I believe it depends on the other medications you are on! Not sure this this should be published! Again, just my opinion!

  • Thanks for the great info!

  • Just to be on the safe side I always go to the computer and look up any new prescription that I get. NEVER trust your doctor on this, several years ago I was diagnosed with breast cancer. I had the lump removed I was given a prescrption for a nausea medication by the surgeon which I did not need and later I was given the same prescription by my oncologist. After chemo I started to take it but decided to look it up and guess what? It was not to be taken with PD drugs. I had given both of these doctors a list of all the meds I was taking!

    PRETTY SCARY!!

  • Very scary! Wow! I have learned as well the importance of staying on top of any medications that are prescribed for me and any medications given to me during a hospital stay.

  • Those side effects are written on inserts with Rx. Most meds have serious side effects. They are weighed against benefits of the meds.

    I see many PD meds listed. High blood pressure Rxs are usually scary, too. Just have to choose the side effects you can live with.

    My legs are mottled purple and red, ankles swollen and I see moving shadows that I know aren't really there out of the corner of my eye. But, I've tried all the meds with no dice. Without Amantadine, my balance is so terrible that I cannot walk, even with a walker.

    I am very carefully watching my eyesight. Someone on another group has swollen corneas from Amantadine.

  • If you received your Aware in Care Hospital Kit, there is a list of SAFE MEDS in the booklet-Hospital Action Plan. It is on the last page.

  • Yes, I was trying to say this yesterday when my computer froze. Hey, maybe it has PD :D Available from National Parkinson FOundation awareincare.org or call 1(800)473-4636. If not in U.S. you can go to awareincare.org/whats-in-th... and download and print the page Parkinson's Disease Fact Sheet . In fact you can make your own kit this way!

    Thanks, NPF!

  • Thanks for this info!

  • I have an Aware in Care Kit on order right now. Thatnks for your response.

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