Self managing PD - Are we serious or not?

[Leyther]

I’m back.

With good reason though, inspired by a message I received, I decided to post.

The following issues, in my opinion, are not being addressed properly within the whole pd community. (I am in the UK but this could equally apply anywhere).

Ok here we go. (Another lengthy one)

The drugs we take are the ammo we need to fight the war with pd.

You cannot expect any soldier to go into battle with bullets (ie drugs) that don’t fit their gun (ie your body’s personal drug requirement)

Neither can you expect soldiers to fire guns when they haven’t been shown where the trigger is (ie how to take our drugs)

They also need to know of potential flaws in the bullets (ie behavioural problems and dyskinesia)and have a system in place that identifies and stops them exploding in our faces

Also I feel we get sometimes get distracted from the day to day dealing with pd by news of new developments in long range artillery (ie Prosavin etc) and nuclear warheads (ie a cure).

It’s good to have hope for a future victory but in the trenches we need help now.

Back to love and peace and what does this all mean for us.

When I was diagnosed back in 2003 I was firstly assessed as to how far my pd had progressed.

My right arm was pretty useless, I couldn’t write or use a computer mouse and my right leg dragged. Fairly advanced I would say.

I was put on a Dopamine Agonist, Mirapexin which was titrated up (introduced gradually in small increments) until I felt the benefit. I was also given a drug to combat feeling sick called Domperidone. This worked great and I was able to drop the Domperidone.

I was then on 3 x 0.7mg tablets, any need for increase was done slowly. Mirapexin worked for me although it created a problem in behaviour.

Dopamine Agonists (DA’s) were generally used to give us more time before the introduction of sinemet / madopar etc.

My neuro is a PD specialist. I believe he adopted the correct approach generally. Mirapexin was augmented with Selegeline and eventually Sinemet Plus was introduced, which worked very well.

The approach was DA plus Selegeline / Azilect then Sinemet/Madopar

I respect that each Neuro has to make his own assessment and that certain drugs don’t suit all people.

However, judging from personal experience and people I know and looking at the postings on a number of forums the following concerns me:

DA’s are being introduced immediately as a slow release. It’s not as easy (if possible at all) to titrate up and patients may have adverse reactions. People are being told to go up to the maintenance dose of a DA even though they are fine on less and the increase is causing a problem for them. These problems then lead to the early introduction of sinemet.

Drugs are prescribed that interact with our pd drugs, I was personally prescribed a drug in common use that interacted with selegiline. Chemist, GP, PD Nurse, Neuro were unaware until I read the leaflet and pointed it out.

Sinemet currently seems to be, the first drug prescribed either alongside a DA or instead of. Potentially this shortens the patient’s effective life on the drug as dyskinesia could be more likely the longer the patient is on sinemet.

I also know of two people that have been put on Stalevo (Sinemet with Entacapone) as a first drug. Bear in mind that too much of a drug can cause similar effects to not having enough.

There seems to be inconsistencies across the board with our drug administration.

There appears to me to be several areas that influence this problem

I do know that not every neuro is a PD specialist (is yours?)

I suspect that behavioural problems associated with DA’s are causing neuros to reconsider prescribing them, especially with the threat of litigation now prevalent.

I know that some neuros are deemed “unapproachable” by patients

I know that there are inconsistencies in the drugs we are put on at diagnosis, I had advanced pd and was started on a DA others with mild symptoms are already on Stalevo.

The other thing that is not properly addressed is how to take our drugs.

People take them with tea/coffee/milk/alcohol instead of water (sinemet does work well with fizzy drinks)

In particular sinemet needs to be adjusted to suit the individual. Timings need to fit in with wearing off periods

We need to be aware that generic drugs, other meds, constipation lack of sleep stress etc all have an effect.

I am lucky my neuro is a pd specialist but he is also aware of individual needs and listens to what I have to say and accepts what works for me.

So what do we need to happen?

The following is my opinion.

We the Patients need to:

Educate ourselves as to the drugs we take by checking drug interactions side effects. Read the leaflets that come with our drugs. (Drugs.com has an interaction checker).

Take responsibility for our PD. PD is virtually a self-medicating illness. To a large degree the neuro can do no more than hand us our pills and ask us for feedback. We need to recognise this and cut them some slack. We need to ask questions when necessary and not make the medical profession into unquestionable gods. We should not operate a blame culture; instead we should look to what the root of problem is and fix it. I accept there are certain issues where we need to address culpability but these should be recognised as mistakes made whilst trying to do the right thing. We all want the same thing don’t we? We all want to be as well and as happy as we can so let’s support each other.

The Health Professionals need to:

Look into inconsistencies in the drug administration of PD. Ensure all neuros and their support teams know about the issues and that they are approachable and able to answer our questions. We need to be able to ask advice directly to a professional. It would be good to have a resident neuro on the forum that could field questions.

This Website needs to:

Carry on with the good work. Expedite the changes needed to make the subject matter more easily accessible. Encourage the health profession to read, absorb and where appropriate implement the needs of the patient as expressed through this forum.

This site says it connects me with other patients and also professionals so I should be in the right place. I know the site is looking into creating permanent pages for subjects so hopefully that will happen soon and make posting easier.

I feel passionately about this (I must be if I’m potentially putting fishing on the back burner).

We are wholly dependent on our drugs, so we need to get it right.

If we are serious about self-management of PD and making things better then we need to act.

I don’t have the contacts to make the changes possible. It’s the same with the DA/OCD issues.

If we are serious about a patient’s voice then we need to do something. Hopefully this post will strike a chord with the right people before it drops off the page and into obscurity.

Leyther

[NanCyclist]

Interesting post with many good points. I disagree that we are wholly dependent on our drugs. Since I began the Cleveland Clinic cycling program pedalingforparkinsons.org I have cut my DA in half (from 8 mg to 4) and eliminated Azilect. I've ridden across Iowa twice (3rd ride coming up), summited Mt. Kilimanjaro, and am headed to trek to Annapurna base camp soon. I have far fewer symptoms than when I was diagnosed and am a much better athlete than I ever was. I'm 66, female and had never climbed a mountain or ridden a bike for any distance prior to PD.

I believe we are all in this alone, meaning that each iteration of the disease is somewhat different and we have to draw on our own inner resources to take on something as rigorous as the cycling program. And we are all in this together, meaning that our collective voice can influence research, focus and a better understanding of this disease. Our ability to help each other through sites such as this is wonderful.

[PatV in reply to NanCyclist]

This is encouraging and my experience somewhat reflects this. I walk miles with a trainer. Hard to find a friend who will walk with me with a walker and left to my own devices, I give in to pain and fatigue and go home.

[Hikoi]

Leyther

Thankyou for this interesting blog. In general i agree with your approach. A few thoughts that spring to mind.

Age is important in any discussion about drug treatments. As i understand it agonists are generally not well tolerated by older people. Raising expectations can lead to unecessary concerns or disatisfaction with treatment.

Inconsistencies in drug treatment in general, well to be consistent would mean that there was agreement on best treatment and isnt there some debate about this. For instance is sinemet / carbidopa, levadopa neuroprotective as some studies suggest. Depending what you think will influence treatment choice.

Then there is the challenge for neuros that not all meds are available in all countries so this influences drug choice.

Also things such as whether you are trying to hold down a job will influence choice of meds.

I like what you write about PD being a self medicating illness. We do all react differently to the meds and i think it is a partnership where we have to be actively involved in working out the best regime for ourselves.

[Leyther]

hikoi

my particular observations were made on people similar to myself at time of diagnosis in both age (40) and motor function. They were working as I was at the time. Yet there drug regime was more related to mine ten years on. If there's good reason lets hear it from a neuro. I can give examples of all sorts of odd statements from neuros, ranging from assuming that because a patient wasnt responding to 3 sinamet a day he must have msa to its ok to drink milk it doesnt affect your sinamet.

People are not getting the best from their medication because they arent aware of the need to alter timings or the effect of diet etc.

simple things that ought to be addressed easily with a leaflet.

Patients need to be more informed but so do the neuros.especially if pd is not their speciality.

[Leyther]

In addition to my last post.

Neuros dont have that vast a choice of drug type. Bear in mind that the basic principle was to keep young onset patients off levadopa as long as possible. Mine tried very hard to do that. My motor symptoms were too advanced for selegeline alone (this was introduced after 9 months) so Mirapexin was used with reasonable success but within 12 months I was over the maximum dose. I didnt keel over so he kept going until I got to 12 x 0,7mg of mirapexin (8,4mg equivalent to over 60mg of requip if you pro-rata the max dose) at which point sinemet was added..

My neuro is a recognised specialist in pd

Mirapexin was also supposed to have neuroprotective properties, it gave me 3 years before levadopa.

People similar to me had sinemet introduced earlier because they reached the max dose.

I take stalevo to reduce the need for additional levadopa since i drastically reduced mirapexin.

most people, unless they cannot tolerate a drug followed similar patterns. It was all about using levadopa sparingly.

That seems to have changed as more people are on sinemet and stalevo earlier some less advanced than I was.

Are some neuros in fear of agonists, is it a new strategy, or are they not pd specialsits and just having a stab at it.

Bearing in mind the potential consequences for individuals shouldnt someone be looking at this from a higher authority.

[Hikoi in reply to Leyther]

I wrote that some 'inconsistencies ' in treatment may be due to different ideas about best approach. There seems to be a move to start Levadopa earlier and the article about this is called

The Treatment of Early Parkinsons Disease: Levadopa Rehabilitated. pn.bmj.com/content/11/3/145...

The study comes from Holland and one author is Bas Bloom.

[Court]

Thank you for your post. I take Stalevo and Requip XL for a tremor on my right side. My consultant retired a couple of years ago and a new one has just been appointed. I believe she specialises in Parkinsons although her department comes under the title of Medicine for the Elderly. I arrived at Stalevo after trying a couple of other drugs which did not suit me. Although I always read the leaflets closely I have never thought to question if the drug is right for me. Perhaps I should have done. My meds are never consistent - sometimes working well, others not.

I have an appointment next month when I have asked to see the consultant, but this is by no means certain. I now have a number of questions I feel I need to ask.

[honeycombe3]

Welcome back. I understand why you feel the need. I believe self-management is the key on an individual level as you know. My concern is the limitations that places upon me as I can only manage within the bounds of my knowledge & experience. To those of us being treated by gerontologists - my experience has been that: a) I am treated with respect b) my opinions are considered, discussed & acted on c) I am given time & d) my consultant is well-versed in PD & treatments inc new trends. I put this because many believe that non-neuros or movement specs are not up-to-date or are somehow inferior. I have not found this & the other qualities are worth their weight in gold!

[shasha]

a very interesting topic leyther - i for one was put on requip and azilecl straight away - dx in 2010 - and have not experienced any remission in my symptoms - no tremor just walking AND STIFFNESS -

but now have been put on stalevo via sinemet and madopar plus neupro patches --

so that now i am left with hardly any ability to walk but am drugged to the eyeballs - i am due tio spaek to my french neuro today as instructed after a 2 week trial of stalevo 100 mgs 5 x a day -- I AM REALLY STRUGGLEING TO UNDERSTAND WHAT IS GOING ON -

I must say that i have taken advice from a fellow sufferer and have adjusted my meds but it i stoo soon to tell if they will make a difference

[PatV in reply to shasha]

why so much so soon? if you are not responding to a given med, diagnosis must be reconsidered. I hope you get answers soon!

[Hidden in reply to shasha]

I also feel that, at first, I was over drugged! Side effects of PD meds can be PD symptoms.

Helping your Dr. adjust your meds is a must. Stay on it till you both get it right.

[Leyther]

stalevo is a great drug it works well.

but too much can be as bad as too little

when i was on sinamet alone i used to take half tablets ie 1 1/2 X 4

you cant really break a stalevo in half

you would have to go to the equivalent of sinemet plus and entacapone.

[maryalice in reply to Leyther]

Leyther I've been on Mirapex and Amandatine for almost 11 years. I'm loosing the use of my right hand and right leg. i'm really afraid to start Sinemet. What do you think?

[Leyther in reply to maryalice]

all i can say is my experience with sinemet has been positive.

i was worried too but i needed it and it works

[maryalice in reply to Leyther]

Thanks for your help.

[shasha in reply to Leyther]

I HAVE LEFT A MESSAGE FOR MY NEURO TO CALL ME BACK --

[shasha]

thanks to the last 3 inputters - i must get it right but did not phone today - will do tomorrow...

[Hidden]

Ooooh heck, now here's a quandary. I'm not a scientist I did not study pharmacy I'm too dumb to be a Neurologist and my knowledge of chemistry is about zilch. I personally am not about to self prescribe, change my medication or pop pills in any fashion by myself. I don't believe I know best. But I do know best the following ::

I communicate effectively

I take control

I drive my life hard

I am fiercely positive

I help myself

I never give in

I'm creative

I am focussed on wellness

I'm happy

I remain remarkable ( not my words )

We each find our way, what suits us. I'm not saying one is right or wrong or better. We must all choose what works.

I bang drums.

Kindest

C

[Leyther in reply to Hidden]

a very good point

dont alter your medication without medical advice from a professional,

[gran5-]

Thank you H-H. You saved me some time and energy. While I appreciate and admire folks like Leyther, and gladly participate when the opportunity presents, I seem to be more in line with your approach. And I, too, pound the skins and also dabble with shakere, bells timbales etc. We could make a joyful noise. When I first was Dxed, about '05 or 06, I tried to read all the literature that came pouring at me. Could not do it. Stored it away and now use it as a resource. A toast to our multitude of approaches, may it be productive.

[Leyther in reply to gran5-]

the only thing you would have to read in this instance is the leaflet that comes with any new drug (pd or otherwise) you are prescribed and check it doesn't interfere with your current medication. you would really only do that if you felt any ill effects

from time to time medics do get it wrong, they dont mean to, but it happens and they are the ones with the qualifications

it happened to me, 5 health professionals missed the interaction between 2 drugs i was prescribed

I got a U in o level chemistry but I did learn to read and i was able to stop it before it became a problem by reading the drug leaflet.

similarly i didnt need a qualification to understand my neuro telling me that levadopa can cause dyskinesia and that agonist therapy was used first with young onset patients to delay the introduction of levadopa

so when the opposite starts to happen and people start feeling worse than before they had the drug i think its a fair question to ask why is this happening

most of us are ok most of the time

but this can change

and some struggle terribly for the sake of a little understanding that i think should be given to them as a matter of course

no one should feel that they cant ask a question as to why they are

being given a drug

[Hidden in reply to Leyther]

Heck I wasn't being facetious just a little cautionary. And of course you know your body best and how it reacts and must take corrective action to maximise quality of life. I'm just worried about people playing Doctor, in all good faith. I used to be a geek and chart everything to give my Neuro in the early days. Cause and effect can be awful tricky sometimes, whats PD or just flu, or old age or side effects. Can be unraveling spaghetti. Anyhow these blogs remain supportive and sensible, unlike many others. So thank you for tolerance and a good opinion mix is important!

HH

[gran5-]

Too tired to say much and I only skimmed the last few entries , Did the issue of multiple Dxes get its exposure? I;ll check back, right now i had to type these few words 3 times to say something coherent. Better manana.

[Leyther]

hh

thanks for that

You raised a very valid point

DO NOT change your drug regime without the knowledge of an appropriate health care professional

If you are having problems keep a diary of when you take your drgs when the problems occur, what and when you eat and anything else that may highlight the problem. Present this at your next consultation.

What concerns me is this..

Working with my neuro I tweaked the timings of my sinemet dosage until it worked. As i understand it thats what you need to do.

My neuro is a pd specialist. I tell him everything I do relating to how I take my drugs. I read taking levadopa with a fizzy drink was beneficial I tried it and it worked. On my next visit I told him, he already knew but appreciated the feedback. Similarly, I read caffeine helps prevent wearing off, I found that a couple of mouthfuls of strong coffee can bring me back on if I wear off Note I dont advocate drinking gallons of fizz or coffee. Half a glass with sinemet and literally a mouthful of coffee and dont forget CHECK OUT IF CAFFEINE IS OK FOR YOU FIRST.

What upsets me is when I find someone is literally crawling on the floor thinking sinemet doesnt work. Their neuro doesnt know what to do and its 6 months until they see them again. They have not tried adjusting the times they take their pills. They take this info to their neuro and then try it and find it works.

Not all neuros are pd specialists maybe they need some guidance too from those who are.

Patients come to the internet to ask questions because they aren't getting answers from the professionals. Out of desperation some alter their dosing regime or even stop taking their pills.

At the moment we really only have DA's and Levadopa with their inherent problems.

But when used sensibly and with adjustments to suit the individual these drugs do work well for the vast majority of us.

If we can all work together we could find the best way to overcome the problems, improve their performance and increase the effective life of these drugs.

Most of the information is already available its just collating it and better communication that's required

[Helshubby]

Hi Leyther , thought you were taking a break ?

In the UK it's all just a bit of a lottery as to whether , or not you get to see a pd specialist - i'm sure my neuro isn't !! The "real" specialist in my area is a Geriatric Medicine doc (but as i'm only 46 i can't work out how i get to see him)

As for adjusting my meds - if i saw the same neuro every time i might just have a chance - seen 6 different ones in 3yrs !! The current one told me to stop taking Madopar because i felt it was having no effect (I stopped for one day and really felt unwell - i am only on the smallest dose possible 1x a day along with Requip XL so at least that cann still work)

I see her again in 6months time - in the meantime i think i'll have a word with the Parkinson's nurse about seeing this Geriatrics doc........................

[Leyther in reply to Helshubby]

I am going to take a break but the weathers crap.

firstly DONT STOP TAKING ANY DRUG SUDDENLY you need to reduce them over time. Thats the message on the leaflet of most drugs we take

You need consistency in your treatment. hope the geriatrics man is the answer

[drew410]

Time to through the cat amongst the pigeons!

I was prescribed maripexin 0.088mg for RLS. It worked just fine. Reported to my neuro 4 weeks later as requested. He upped the dosage to 0.25mg CR. Not a lot different but within3 days dyskinesia went whappy plus painful dystonia in right ankle/foot then neck and cranium.

Could not get hold of neuro (ward closed that day) so phoned GP. After conversation which I empowered got her to agree to give me script for 0,088mg. Quote from GP "You know your body better than me". It took a week to adjust but I got it right eventually.

My point? As long as you don't go daft and a, stop the meds altogether and b, take huge changes in the meds but adjust gradually in very small steps you can get it right for you. Just be sensible. If all else fails then back to neuro but if so try and make them listen. Not all of them do.

[Leyther]

Very good point drew

You tried to do the right thing via your neuro but it wasnt possible

You contacted your gp and after discussion she wrote the script.

I had a similar experience when I first needed sinemet. My neuro was on a 9 week sabbatical! After much badgering I got a script from the registrar on the neuro ward.

Sometimes you have to do the extraordinary just to get the basics.

They are our bodies as you say and when we need something we have to act.

Reasoning it out with a medical person is a good approach.

I dont recommend chopping and changing drug regimes without informing your neuro/gp./nurse

[ij0511]

Some amazing comments and good to know others are like me. I am not a "One off"

I too was started on Sinemet with amazing success and then transferred to Ropnierole both of these being taken alongside Selegilne. This resulted in about the worst 6 months of my life. The Ropinerole resulted in dreadful insomnia ( sleep about 2 hors peer night) and the most awful un natural fatigue in the day. Tried adjusting time of taking medication to no avail. Legs getting weaker and weaker resulting in many falls. Exercise becoming more and more arduous. Someone mentioned the use of leg braces to support legs and thereby reduce falls ( legs give way without prior warning)

Has any one else tried or heard of this? Now on Sinemet and fatigue vanished thank goodness but leg issue remains

Thanks

Ian