An interesting observation, Few of us question the pharmas we are prescribed because they are all available to us on prescription.
Would we be able to afford them if we had to pay for them or would be looking at cheaper alternatives i.e. All the Food supplements out there?
My monthly quota
Mirapexin2.62 er x30 £337.27
Azelect 1 mg £70.72
Madopar100 tabs £6.91 total £414 a month.
Thank goodness I live in a part of the Uk where my GP will prescribe these drugs ,reading other posts it's a real postcode lottery wether you get them or not.
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Hi Hikoi,I'm not sure.I know we are all looking to keep our PD from progressing and are willing to give most things a try.
Up to now my PD has been slow progression and fortunately not impacted on my daily living.
My specialist has suggested I start Madopar 25/100 TDS .
To be honest I don't feel I need it TDS,
I take Premipexole 2.62 and Azelect first thing wth my breakfast.
Then an hour later Madopar.Im fine for my tennis,bike ride or walk .have lunch and sometimes a nap.
If I'm pottering at home don't need Madopar if I'm going out I take another one which lasts till bedtime.Then I have CBD ,This definiely helps with the pins and needles and unexplained pain so I get a reasonable nights sleep.
I also take magnesium and Vitamin B complex.
I don't pay for my meds but if I had to I think I would definitely look at more alternatives.
Behind the scenes, the pharmaceutical and biotech industries are trying to change the law—to benefit no one but themselves.
Big Pharma in general—and biotech in particular—are having trouble coming up with new-to-nature molecules they can successfully patent and turn into blockbuster medicines. They know the healing power of natural substances. But natural substances are not supposed to be patentable. Or if they are patentable because a new process is involved, the patent protection may be weaker. As has beennoted many times, drug companies are not interested in medicines that cannot be patented or that hold weak patent protections, because they don’t earn enough money for the substances to be taken through the multi-billion-dollar FDA approval process and thereby gain a complete government-enforced monopoly, which brings with it the power to charge huge sums for the product.
Now they’re trying to get the US Patent and Trademark Office (USPTO) to change patent law about natural substances.
Their attempt has been unsuccessful—so far. If patent laws are weakened, we can expect an increase in efforts by Big Pharma to gain exclusive rights over natural supplements.
In the uk you can generally only get 'Medicines' on prescription . Most vitamins and minerals are classed as food supplements and are therefore not prescribable. You have to buy and pay for them yourself.As I said before if big phama gets it way a lot Food supplements will become regulated and we will end up paying a lot more to line their big pockets.
The prescribing of vitamins and minerals on the NHS is recommended by the ACBS committee for the prevention and treatment of specific deficiency states or where the diet is known to be inadequate. They must not be prescribed as dietary supplements or a general ‘pick-me-up’ and this use of vitamins and minerals is unproven.7 Any prescribing not in-line with an ACBS approved indication should be discontinued.
Yes i would expect in most countries, at least those with a health system i would trust there are controls on prescribing. Drugs have to be proven in double blind placebo controlled trials to be effective for the condition they are being used for. I dont know how else a system could work, free unregulated access to any medicines we might think might help us?
I do get your point about pharma, but i think it is complex more complex than laying all the blame with pharma for having to pay for vitamins etc. After all the multi billion dollar supplement industry also has a vested interest in getting us to believe their version.
CHH a popular poster, left this forum over this issue.
I like your original question. Some people in the US can have to pay large amounts for medication which is standard treatment in the UK and almost free. Much depends on the insurance policy they have and often this is tied to their employment. If they change insurance cos for any reason (eg change of job) they may have to change their meds because each insurance company has its own contract with pharma for certain meds.
Say you changed jobs and had to change insurance companies. The new insurance policy did not cover the meds you are on. You would have to change drugs or battle with your insurers or buy the drug at market prices.
People can lose their homes just to pay for necessary drugs. I dont live in the US but this is what I take from reading posts on here. I hope someone will correct me if i have this wrong.
I have had a sense that the deep distrust of pharma and the search for alternative meds and/or the belief in healing miracles is more prevalent among US posters than those from other areas. If this is true (and i have no proof it is) then i was wondering whether the high cost of meds for many individuals could be just one of the many possible reasons for this.
I hadnt thought about this possibile connection before so that is why i find your question most interesting, thankyou for it.
Yes, I've been astonished and sympathetic to many of the posts from our American colleagues on the site, especially those who have difficulty getting their insurers to pay for things like aziclet.
My bill for supplements (NAC, Inosine, etc) comes to around £80 as well. I think they aren't prescribed because there isn't a sufficient body of evidence that they slow this thing down, although for me, there is sufficient anecdotal evidence to make it worth taking a punt. I think the issue here is that the drug companies aren't investing in trials of things like NAC because they aren't going to be able to patent it!
I don't really know what the recommended dose is but research suggests that's a reasonable dose. I think my symptoms have improved but I would caveat that by saying I also take Inosine, I exercise, I do the PD warrior programme and I take some medication. My objective is to slow this thing down but who knows? I think you have to do your research and do what feels right for you. I feel very well most of the time which encourages me to keep going. Apart from at the moment; I have a dreadful cold and feel awful!
I agree, Stevie3 but you can't blame them for that. But I do blame them for selling l-dopa only with excessive amounts of carbdopa (or benserazide). There are several peripheral groups of dopaminergic neurons (eg the adrenal medulla where dopamine is made and converted to cortisols; the colon, where dopamine is needed to control the muscles which push fecal matter down and eventually out of the colon. These are not protected by the blood-brain barrier and so taking Sinemet supplies l-dopa but simultaneously inhibits its decarboxylation to dopamine. This explains why pwp often have low cortisol levels and feel fatigued, and are often constipated, and why Sinemet makes it worse.
This why I prefer Mucuna pruriens, sometimes with a 50 mg tablet of Sinemet if i need a longer effect (eg before bed to avoid early morning cramps).
I'm taking 600 mg NAC orally 5 times every two days to compensate for the absence of injected NAC. I'd prefer10 x 300 mg but can't find 300 mg capsules in the UK. My advice to anyone about to start is to make sure you take the caps with a good swig of water! It's quite uncomfortable when a capsule breaks open in your oesophagus, especially if you don't have any water to hand!
I use Mucuna pruriens because it doesn't contain AAADi s (AADi = Aromatic aminoacid decarboxylase inhbitor. These preserve L-dopa but inhibit the last stage of dopamine sybthesis in peripheral neurons. If I'm right this could be the origin of constipation and fatigue because dopamine is a precursor of cortisols which give us our get-up-and-go.
How much Mucuna Pruriens powder should be consumed a day for the best results? With a proven track record stretching back many hundreds of years, it appears that the human body is able to tolerate Mucuna very well. Still it is best to stick to the lower end of the recommended Mucuna Pruriens dosage range.
The median dose which most people take is 500 mg per day. Anyone who is new to Mucuna should try a smaller dose, closer to 100 mg, up to 3 times per day. The maximum dose should not exceed 1 gram per day total.
Is there a site with more information re: how to take this (with or without food, etc.)? Reliable sources to purchase this? Information for use for Parkinson's patients? I am only about 3 years since first symptoms noticed and no meds yet.
I also notice that the % concentration of ldopa is different in different brands -- Is this a trial and error sort of thing? Sorry for the novice questions -- this is all new to me.
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