Potential medicine side effect?


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Potential medicine side effect?

Postby HelpingDad » Wed Oct 12, 2016 10:39 am

In mid August at dad's neurologist appt the doc decided to increase dosage of his meds. Since dad gets all his meds through the VA it took a few weeks for the approval and delivery. Starting around the beginning of September the increased doses were being taken. Fast foward a few weeks and dad has a bad night of vomiting / diarrhea, per his primary doc instructions we started the BRAT diet and pushed fluids, in about 24 hrs he was much better. One week later same thing happens only this time his nurse from VA was present and saw it. She called the doctor and via a phone consult it was decided an ER trip was needed. The ER trip resulted in a 2 day hospital stay, nothing other then slight dehydration was found. The release day was on Friday, Sunday same symptoms happen in the middle of night. I didn't know what to do so called 911, he was taken to local ER. Nothing was found so written off as possible mild flu. About 8 days go by and symptoms hit again in the middle of night. I decide I am not going to ER again so call in an aide from caregiver agency we work with. Everything passes and start pushing fluids. I am wracking my brain to figure out what the heck is going on and start going through all the side effects of his Parkinson meds. One jumps out, Neupro 4mg 24 hour patch, it was one of the increased dosage meds back at beginning of September. The potential side effects are nausea, vomiting, sleepiness, runny nose etc. Dad has been experiencing all of these. Once doctor in I call and let him kknow dad is sick again plus what I found out about Neupro. Doc says he needs to check on it, when he calls back I am instructed to stop the Neupro, at least temporarily. Guess now we play the waiting game to see what happens.

Long post but from what I know vomiting/diarrhea are not normal symptoms of PSP/CBD. I have a call in to his neurologist to stop all Parkinson meds. I see no visible benefit from taking them.

Ron
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Re: Potential medicine side effect?

Postby myownwoman » Wed Oct 12, 2016 11:11 am

As I've said before: part of being a caretaker is being a detective. I'd say that you, Ron, should receive the #1 PSP Detective Award for 2016. It's not easy to track down the cause of these types of symptoms, and I hope that this is the correct answer.

(In my most humble opinion: the only 'persons' who benefits by all these drugs, in the case of PSP, are the pharmaceutical companies.) ( But then again, I guess we must try.)
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Re: Potential medicine side effect?

Postby Robin » Wed Oct 12, 2016 11:18 am

Any dopaminergic medication (such as Neupro) can cause GI side effects.
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Re: Potential medicine side effect?

Postby eplowman » Wed Oct 12, 2016 3:13 pm

Excellent, informative post, Ron. Thank you.

And as "myownwoman" indicated, I agree -- you'd qualify for becoming a private or public-watchdog investigator on behalf of patients of loved ones with PSP and other rare neurological conditions.

In fact, I am forwarding your post to a neurologist on the West Coast with an associated team of researchers who have taken up renewed major interest in PSP. As Scientific American and other publications reported in =mid-June=: Neurologists and medical researchers have long known that Alzheimers Disease and PSP share the symptom of disastrous damage to tau protein functions and structures in the brain. They also knew that it may take 30 or 40 years to show up as AD, whereas first-signs-to-death in PSP in most cases is 10 years or less. Therefore, their reasoning went: find out in depth (beginning now!) what is going on in PSP and why, and how to stop it, and we may have a treatment and/or cure for AD and other presently untreatable major and rare neuro-degenerative diseases MUCH EARLIER than otherwise!

This breaking news announcement deserved champagne celebrations and headlines in curePSP circles! I hope you heard about it.

MY reason for forwarding YOUR post topic and its chain: =medical professionals= who have a PSP patient also ought to visit the forum regularly. No need to join as a "member" just to read the forum resource.

I say that because the neurologists most-experienced in PSP diagnostics and do's-and-don'ts do NOT prescribe ANY medications for a patient with PSP -- because every patient is different, and there is no way to tell what the side effects will be. Here in the forum, we have seen drug side effects that worsen the patient's condition! If we post what we've observed, that becomes part of the encyclopedic resource for doctors (some of whom may never had a PSP patient before) and researchers. This resource has been in the making here for the past 13 years! What "Nokes" and her friends posted in 2003 and 2004 is as much a valued part of the resource as you and the others who posted today are.

So, tell your doctors about it, copy the URL to them, hired caregivers, and to relatives and close friends. This is part of OUR support for OUR loved one or close friend with PSP. And for our fellow and sister caregivers who may be struggling to cope. God bless you all!

You can go directly to the forum from here:
http://forum.curepsp.org/
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Potential medicine side effect?

Postby myownwoman » Wed Oct 12, 2016 4:25 pm

I am so very glad to hear this!!!!! I always felt that the information garnered from Phil's experience went nowhere... past this forum anyway. I had recommended this forum to Phil's neurologist but doubt he ever checked it out. But then, maybe he did, being head of neurology and a teacher at Fresno's UCSF program, he had shown interest in the progression of Phil's symptoms.
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Re: Potential medicine side effect?

Postby eplowman » Thu Oct 13, 2016 1:06 pm

Apologies, but I edited this reply to clarify some of the history and key people involved.

Why not go ahead and ask Phil's Fresno-area neurologist about it, if you have a contact point. As I understand it, Dr. Adam Boxer at the UCSF med center (in San Francisco) and his research team are among others in the U.S. and abroad who belong to an international multi-center entity known as the Tau Consortium. It was the work and goals of the consortium that the news in June was about. It appears UCSF will have a major role in its work.

Who knows, since Phil's doc is with the UC Fresno center, and since he has had experience with PSP and probably other patients with Parkinsonisms, maybe UCSF will ask for his help, too!

I had suggested you and other forum members could create a profile of the loved one's history with PSP, based on a chronology of symptoms, changes in the symptoms, etc., something that could be useful for researchers. But let's first find out if such documentation would be useful to them. I will ask Dr. Boxer and report back. If the answer is yes, I will ask him if he or one of his team members could draw up a list of sample questions that could help folks here to know some of the facts about a PSP patient that would aid their research quest.

Whatever is the case, I will report back to you here.

Meanwhile, here is the background on the Tau Consortium:

---------------------------
In 2009, [businessman] Richard Rainwater was diagnosed with Progressive Supranuclear Palsy (PSP), a neurodegenerative brain disease that has no known cause, treatment or cure. It affects nerve cells that control walking, balance, mobility, vision, speech and swallowing.

As a result of this diagnosis, the Rainwater Charitable Foundation expanded its focus to include this emerging field of PSP medical research. Mr. Rainwater assembled a team of the leading physicians and researchers from around the world and charged them with working together innovatively to find a cure for PSP. This group of over thirty principal investigators, dubbed the Tau Consortium, researches the causes, progression and potential treatments of this disease.

http://www.rainwatercharitablefoundation.org/support-for-medical-research
----------------------------
And the principal investigators are shown and listed here:

http://tauconsortium.org/investigators

Plus, information about curePSP's Genetics Consortium is here:

http://www.psp.org/about-curepsp/genetics-consortium/

ed p.
Last edited by eplowman on Fri Oct 14, 2016 2:33 am, edited 1 time in total.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Potential medicine side effect?

Postby myownwoman » Thu Oct 13, 2016 1:23 pm

" Sticky Topic" ????
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Re: Potential medicine side effect?

Postby HelpingDad » Thu Oct 13, 2016 6:20 pm

I've been keeping notes on Dad's progression for about 1.5 yrs now. I recorded the date, time, what was happening and how long it lasted. My initial intent was just as a reminder of what to tell his neurologist since appts are months apart. The notes have kind of evolved into a history of dad's progression. I don't know if the notes will ever be of value to anyone.

Ron
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Re: Potential medicine side effect?

Postby eplowman » Fri Oct 14, 2016 3:28 am

A "sticky" topic is one that stays in place near the top of the first page of the list of topics. The moderator arranges for that to happen.

Ron -- How thoughtful and helpful you have done that! I wish I had done a better job of noting and keeping such details in writing in my late Rose's case. I could probably dig through past posts here noting changes, etc., and build a fairly accurate profile. But I won't start unless researchers find potential value in having such documentation. Right now some of the scientists are focused on genomics, mutations, and related science. Others are concentrating on damage and debris, possible fixes or repairs, and prevention. I don't know if case histories could provide the kind of information they are looking for....

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: Potential medicine side effect?

Postby zymurgy » Fri Oct 14, 2016 8:41 am

Ed, I began this journey with a list of my husband's symptoms, medications, medical history that might help with the diagnosis which I shared with the doctor's. Since the, I have also been keeping daily notes of my husband's progression, falls, changes in nutrition, diet, supplements, what we tried to deal with symptoms, any tips,tc. Each visit to the neurologist she would get a copy of changes since our last visit. I know it is anecdotal, but it may help someone someday when a patient is given the "no treatment, not cure" diagnosis. I also summarized where he was when we hit the three year mark. I also helped me psychologically, think I am doing something to partner with my husband to stop the progression. I couldn't just sit back and do nothing. We are now just shy of year four since diagnosis.
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Re: Potential medicine side effect?

Postby HelpingDad » Sat Nov 19, 2016 7:52 pm

Well knock on wood, it's been over one month since dad was taken off the Neupro patch and there have been no GI issues since. In fact after consulting with his neurologist he has only 2 doses of Sinemet left to take. He now only takes vitamin B12 and D, GERD capsule and a nebulizer breathing treatment.

I've been watching for any signs while tapering off the Sinemet and have not really noticed anything different.

Ron
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