. . .with Boann's concern about the Sinemet label. But in all fairness, I don't see ANY side effects of ANY medication posted at the doctor's office. They cannot legally single out one drug and put it on the alert list. (It all has to do with a little thing called "tort").

This very thing is why we need to be proactive about our treatment management. If we are just now discovering the warning on the Sinemet label that talks about some of the same side effects and interactions, then shame on us for either not reading the warnings or waiting for our doctor or somebody posting in the forum to unform us.

I agree with boann that the studies laying the blame entirely on dopamine agonists don't hold water . . . yet. I believe thay ANY of the side effects can also be affiliated with ANY medications when combined with one's present regime.

For example, let's look at Prilosec (it now has over-the-counter availability), used for acid reflux.

PRILOSEC - (Omeprazole )
SIDE EFFECTS: Constipation, cough, dizziness or back pain may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.

Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.
Tell your doctor immediately if any of these highly unlikely but very serious side effects occur: signs of vitamin B-12 deficiency with long-term (over 3 years) treatment (e.g., unusual weakness, sore tongue, numbness or tingling of the hands/feet).

DRUG INTERACTIONS:
This drug should not be used with the following medications because very serious interactions may occur: atazanavir, nelfinavir. . .

tell your doctor or pharmacist of all prescription and nonprescription/herbal products you may use, especially of: certain drugs to suppress the immune system (e.g., cyclosporine, tacrolimus), cilostazol, diazepam, disulfiram, phenytoin, tipranavir, voriconazole, warfarin.

Some products need stomach acid so that the body can absorb them properly (such as ampicillin, iron supplements, calcium supplements, dasatinib, azole antifungals including ketoconazole). Omeprazole decreases stomach acid, so it may change how well these other products work.
Source: www.rxlist.com

I thought Prilosec was a relatively side effect-free medication! But this type information does remind one that all of your perscriptions should be filled at one pharmacy to avoid some of these interactions.

What we take or don't take is a highly individual choice, based on a number of variables. And I don't think it was anyone's intend to advise (or even suggest) that one stop taking a PD medication; I believe the intent was just to let us know.

Peggy

Hi All,
I have not been reading forum posts as regularly as I used to. I havenot posed much either. i have been in my cocoon thinking about various things including science, research etc., this thread caught my attention.
First I admit, have not read all the posts throughly as i should have.
secondly just glancing at other posts of similar nature, I feel like responding
This is not a specific response to any individual post, mostly my feelings.....

first and foremost thought that comes to my mind is patients (including me) are very frustrated with the pace and kind of research that is going on. Many times the papers say what is obvious to the person who has PD, its reinventing wheel and publishing the same without realizing the impact their work has on PATIENT"S LIFE at the individUal level.

I have to agree with some of you who feel that research circles can be very elite and do not allow people who are not their kind nor listen to them.
In my opinion, this generates distrust and disrespect from both sides. Patients feel neglected and researchers hear a noise, but not words

Having said that, I firmly believe that thre are plenty of researchers and clinicians who are totally dedicated tothe cause, and publish papers (eg. Dr Nirenberg) that are real and the data and conclusions are in sync. It is not hard to find such people, there are plenty of them. They restore one's trust and faith in the system. In my opinion, this type of sincere reprentation of science is about one in 5 to 1 in 10 of the medline publications. I feel so compelled to say please read the whole paper, evaluate data for yourself each time I see an abstract being quoted here for some study or the other .

Every paper published is lacking in some detail/ No study is complete in its own standing. This incompleteness (If there is a word like tht!) translates into a drug that is greater than 50% good, maxing out at best 80%
There is bound to be some that are not benefited or sadly even harmed by it
At present thats all we have, we can push for more, researchers can do more (at least the sincere ones)

Another issue is about statistics. I agree that statistics quoted in a paper get press and are reported. I completely agree even if the chance of drug induced side effects are one in a million, and if yoU or I happen to the one, the whole study and the conclusions dont mean anything.
But how are researchers supposed to make sense of their findings>?
Biology is complicated, no two people have the same genetic components, envionmental influences and social interactions. How do we make sense of any expt? How many parameters are we going to study in each experiment to get a complete picture?

I dont have any answers to these questions. I am trying make sense of mant of these issues as they pertain to me amd trying to deal with the in pact of science iin my life. thanks for reading, sorry for typos and other mistakkes.....
girija

one could speculate that broccoli has more potentially dangerous chemicals than sinemet.

Boann,



Boann,

I am misunderstood or likely was not clear enough in the first place. I think that a myth is perpetuated when we hear over and over again that levodopa causes dyskinesia and that since it happens to some patients, it will happen to all. The truth; just like you have uncovered in your analysis of agonist studies, lies somewhere in between. Robert and Fiona, have used levodopa therapy, it seems somewhat successfully, for many year longer than what is proscribed in the medical literature. I argue that just because some patients experience dyskinesia (according to a recent lit review of this very topic 30-40% of us do), we should not let it take over and de facto prescribe a particular course of treatment for every young onset person. The dyskinesia should be treated as a cause for delaying levodopa therapy, but measured against alternatives; does a neuro want a patient falling asleep at the wheel or ruining her life from agonist therapy or experiencing unwanted movements earlier rather than later, that is if, the patient experiences them at all. Perhaps myth is not what I was going for, rather it's that these treatment profiles almost become dogmatic.

I think the important thing is for patients to be informed and included as partner in making treatment choices early on. I would have greatly appreciated this type of info when diagnosed; I find it reprehensible that any neuro would choose a course of treatment without first thoroughly explaining options to us and allowing us to try what works for us best. The message board at YOPA is filled with clueless newbies who for the most part seem to end up maxed out on agonists and suffer in the worst way because of it with both behavioral and physical side effects that they don't at all anticipate.

As for overemphasis and blame on the agonists for subsequent behavioral problems and its proliferation in the literature and disclaimers in the doctor's office...I mentioned this in a prior post, we have lawyers to thank for this.

Let me start by saying that dyskinesia is not a side effect of levodopa
rather it is an unwanted effect of an inadequate delivery of the drug.


Loss of tonic stimulation of striatal dopamine receptors in PD and its replacement by pulsatile dopaminergic stimulation using short acting drugs has been proposed as leading to the abnormalities that cause dyskinesia induction. As a consequence, the concept of continuous dopaminergic stimulation (CDS) was introduced to explain why longer acting dopamine agonists do not produce the same intensity of dyskinesia. Key to these ideas has been the use of both 6-OHDA lesioned rodent models of PD and, in particular MPTP-treated primates. Comparison of the ability to induce dyskinesia of the same dopamine agonists given by pulsatile or continuous administration or more constant administration of Levodopa (L-dopa) has shown that constant drug delivery (CDD) dramatically reduces dyskinesia induction.



Agonist use may also result in dyskinesia The culprit seems to rest in the short life of levodopa and its absorption rate. One study I ran across, links the severity of dyskinesia to a ratio between a person's body weight and peak absorption of levodopa.

I find it utterly disturbing that a potential end to dyskinesia as we know it exists right now in the pump infusion system developed by Solvay and used successfully in Europe. Yet we don't have access to it...I would think that collectively we be more concerned over this rather than who takes what pill. It supplies our brains with what they need at a steady, regulated low dosage, a system that more closely mimics our brains pre-PD with minimal side effects, and notably little or no dyskinesia. No supplementary agonist is required. Yet, it sits here waiting to clear yet more , rather unnecessary clinical trials.

It is utterly disturbing that this is the same 'gold standard' drug that has been used in treating PD for over 30 years. It's merely the same chemical in a different form; why all the extra hurdles here when it's already improving the lives of patients elsewhere.

If you think that we may look forward to this as a potential new treatment; guess again. From my understanding due to cost of maintenance, Solvay is marketing it as an end stage treatment to be used after brain surgery options have been exhausted. This is beyond disturbing. What a crazy, mixed up market and profit driven world we live in.

Laura

Soccertese, i must ask - what about broccoli? is it toxic gas? lol Do tell.
paula

Would just like to respond to Laura's comments about pump infusion. It is used in the UK in late-stage treatment, as a treatment of last resort mainly, and I believe that this is because pump infusion is an invasive procedure, requiring surgery into the small intestine, something that maybe most patients would not wish to undergo in earlier stages, or until they had exhausted non-surgical options. Though trials have recruited people with an age-range of over 30, it is unlikely to be used here in the UK as a main treatment because of costs over the lifetime of a patient, it is certainly going to be more difficult to monitor and maintain for long-term treatment than oral therapies.

Lindy,

Thanks for filling in the blanks. I do think that Neil has posted some info too in the Clinical Trial section.

I understand that surgery with associated risk is involved, but I am floored that a patient would have to explore brain surgery before becoming a candidate for the pump! How is wiring the brain less invasive?

I'll have to do some further research. I think in my head I am largely comparing this too the glucose infusion pump that is not uncommonly used here to manage diabetes. It seems that it would use roughly the same technology and I don't know that it is very cost prohibitive.

I guess given our lack of options in treatment, I would hope that Solvay perfect this system and find a way to lower the costs involved so it may be considered a viable alternative to inefficient oral therapies and resultant disabling dyskinesia and brain surgery. I think in terms of my doctor who recently suggested I try brain surgery though I don't think my symptoms warrant something so aggressive. I guess when viewed from that perspective a pump connected to my intestine makes for a welcome alternative.

Laura

Girija, welcome back! I would dearly love to read the entire articles if I could but afford to purchase them. I did have some limited access to articles, but that has now been curtailed. If all we are provided are abstracts, must do with guessing for the rest of it. One of the primary drawbacks with the present system--inavailability of published articles. I wholeheartedly agree with you--and often have only the abstract to post and feel that the infomarion, however truncated, is important.
madelyn

There are different types of pump infusion even for PD. For diabetes the pump infusion is mainly subcutaneous, as for many other disease such as MS. For PD there is pump infusion of apomorphine that is subcutaneous, and a couple of other drugs that seem mainly to deal with hallucination. The system that delivers levodopa is completely different to these in that it delivers directly to the duodenum.

I cannot answer why this delivery is seen as more suited to late stage, and the apparently changing opinions over DBS for younger patients, I know given the choice of the two I would opt for the pump infusion to the duodenum any day - but perhaps it is not as simple as that.

The solvay system has not had enough exposure in terms of patient awareness yet, are there patients or carers out there who have experience of this? If so it would be good to hear about it.

I have seen for myself that subcuteneous pump infusion is not straightforward either, the body can build up a kind of skin resistance to medication that results in infusion sites getting red and hot with considerable swelling and pain, and in the long term it can be hard to find new sites for infusion. This is of course dependent on patient, the condition being treated, the drug used - there are lots of variables.....

Hi Madelyn,
Yes, getting full length manuscripts is a problem and I agree purchasing papers is not an option either. So, I decided to try the old fashioned request for reprints route! For a couple of papers I really wanted to see the data, I just emailed the authors asking for a copy of their paper. So far so good, I got what i wanted. I am not saying it would work every time but something to try!

Girija



sen;613428]Girija, welcome back! I would dearly love to read the entire articles if I could but afford to purchase them. I did have some limited access to articles, but that has now been curtailed. If all we are provided are abstracts, must do with guessing for the rest of it. One of the primary drawbacks with the present system--inavailability of published articles. I wholeheartedly agree with you--and often have only the abstract to post and feel that the infomarion, however truncated, is important.
madelyn[/QUOTE]