I was speaking to someone yesterday who also has parkinsons, and she was asking if I knew about some trials they are doing in Australia using stem cells, she said they are testing already on 12 people, she said they are injecting the stem cells into the brain - I haven't heard anything about this - anyone out there know of anything??
Sheffy
http://www.parkinsons.org.uk/news/16-september-2015/research-towards-stem-cell-treatments-parkinsons
Thanks for that sea angler!
Sheffy
The European Committee for medicinal Products for Human Use has granted marketing authorization for Rytary (now called Numient ). This information is to be found on www.medscape.com.The next step (approval) shoud not be far away.....
Thanks , Kate!
Lifted my spirits to know it is on its way!
Not a cure, but a reduction in the 2 hourly meds...at least enough to stop faffing around with pills and water half-way through a film at the cinema!
Keep us informed....how long before approval and available for prescription do you think?
Love
GG
Hi GG, excuses for delay in reacting to your post. If you had asked me the question at the beginning of the year I would have said "by November 2015,, but now I do not expect the product (whatever they will call it now) to be given to us until next year. Maybe early 2016. After approval it probably will have to be scrutinised by NICE for cost effectiveness and they have to determine which patients are most helped by this, the select few? Will be expensive?. Like you I have been waiting in hope for quite a while now. I follow a similar regime to your other half.: every 2 to 2,5 hours I take Sinemet
Best wishes, Kate
Hi Kate
I'm currently experimenting extending times between my Madopar doses, which had become necessary 2.5 to 3 hourly, by adding in a slow release twice a day. Taking one CR about an hour after my first pill of the day and one mid afternoon..
Hate increasing amount of meds but had to try something. Previously totals for day were 5 x 100mg, and at bedtime 1 x 50mg plus 1 x 100mg CR, and another 1x 50mg about 4am to get me through to morning. New totals are 4 x 100mg and 2 x 100mgCR, and at bedtime 1 x 50mg and 1 x 100mg CR and another 1x 50mg about 4am.
This seems to have overcome my very sudden and unnerving "off" symptoms ( ultra stiff neck and near inability to walk ) by smoothing things out. The alternative was to stop whatever I was doing several times a day, wait for 'right' med time, then wait for it to kick in, all taking at least 3 hours out of the day. Plus when I went very "off" the next dose did not seem to be very effective.
Have you tried a similar adjustment?
S
Thank you, Kate.
We will just have to be patient!
The existing CR Sinemet did not work for my husband and our Parkinsons Nurse reckons it is very unpredictable for many patients.
The new formulation seems to offer hope in reducing the number of doses and keeping the level steady.
Supa, our neuro tells us never to wait for a correct dose time but to take it as you feel the last dose wearing off.
Everyone has to find their own way with this individual condition!
Love
GG
GG & Supa,
just a reaction to your postings: I saw the neurologist yesterday, he was rather pessimistic about the length of time approval for Rytary in Europe would take. On top of that the time Nice might take to decide it is cost effective . He also mentioned there are two other levodopa treatments in the pipeline(of research), an inhaler system and a subcutaneous (something like the Apomorphine pen) way of administering the drug. Both would of course bypass the gut. What I am curious about is that, if you knew and could measure by means of some sort of test (ideally as easy as the bloodsugar levels of a diabetic) the level of dopamine released in the brain, you would base or adjust your intake of levodopa drugs on this and create fewer peaks and troughs and maybe less dyskinesias. How low are for instance night time levels?
I have always been told that the uptake of levodopa of the CR (Madopar and Sinemet) versions is more difficult to assess or more unreliable, which is the reason few neurologists prescribe CR versions for regular daily use. I take it at night only. I do believe that a little and often is what will keep the level of dopamine steady, thereby not givng sudden jolts to the dopamine system, but it is a pain to take it so frequently (every 2-2,5 hours) AND keep away from food at the same time.You cannot indulge in a heavy meal, high in protein or not.
GG why Is everyone harping on about "take it on time" as opposed to " take it when needed"?
Supa, I fully agree with you that adjusting the dose regularly and experimenting with both the when and how much to take regime. You have to listen to your body and probably keep notes and be very disciplined. There is no maximum dose of levodopa, it depends on the individual, some get dyskinesias on quite low doses, others tolerate a lot, It is obvious you probably keep an eye on your total levodopa intake, which is why you describe your Madopar pills only mentioning the levodopa content , not the benzeraside as well. During the night I let nature take its course and take the pills according to what time I wake up, how long there is still left of the night, how restless, uncomfortable I feel. Now it is feeding time, hurrah,
Kate
Hi Kate
Thank you so much for keeping us up-to-date neither Rytary's progress.
It is disappointing that it is so slow, but it will come and other developments are on their way too.
I do hope PDUK is putting pressure on those with power to bring these new treatments to the people who so need them.
And Supa, you don't have to wait for the right time.....try taking a dose as one is wearing off, and if you can, reduce the doses slightly as you take them nearer together....
Keep in touch.
Love
GG
Hi Kate and GG - thanks for all your input.
Saw my Parkinson nurse today - she echoes Kates thoughts about the unpredictability of CR and does not advocate its use in daytime. Wants me to cut it out and stick with max 5 x 100 Madopar in daytime and a 50 with my CR last thing and a 50 during night as necessary. I agree, but dread going off suddenly when out & about.
She wants me to start Entacapone to extend the times, and ideally be able to then cut out one daytime Madopar. That would be great if it works. I'm not feeling very optimistic about any meds at moment, but will give it a go when get the prescription. Hope no unexpected side effects!
Yes, GG, I agree that little and often is the best way to achieve even medication - but 2 hourly does get a bit in the way of life !
Will report on progress in a few weeks.
In the meantime, how do I get people to understand that when they politely hold a shop door open for me, I can't necessarily walk through it ! In fact, provided the closer is not too heavy, I am better opening it myself. Their presence waiting for me is more off putting than helpful.
Oh Parky, how weird you have made me become ! !
Mornin
on sky news just now a lad with muscular dystrophy, Nice are on hold with it while they look at the price of a breakthrough drug, its been approved in europe & scotland i think it said but here not yet, the parents saying it will make the difference or him walking or not.
I suppose we can expect the same with rytary?, justifying the price Nice & the difference or not it would make too our lives, we are told it seems almost everyday about the state of the NHS and spending is very tight.
I get what you mean about the doors Supa powering yourself is perhaps more supporting, Hope the entacapone goes well it can be overwhelming sorting and taking pills like a endless conveyer taking up the day, more than actually doing something with it.
Thanks Sea angler.
having read many peoples experiences of Entacapone side effects I am very unhappy about starting it. Maybe it is like Trip Adviser, and only the bad gets written, not the good reviews. But, will not be rushing to the pharmacy yet!
S
My husband tried Stalevo which I believe is Levadopa and Entacapone combined.
He had to stop after 2 days as he felt so ill.
But everyone is different and many PWP take it with no unwanted side effects.
Taking pills every 2 hours is a pain, particularly in a theatre or cinema in the dark...but a digital pill timer containing pills and alarm , and a small bottle of water help it go relatively smoothly.
Rytary would make life easier.
Cost is important.......allowing the rich to leave a million pound house tax-free is obviously a priority!
so, Supa, keep experimenting....you will find the right regime for you.
Love
GG
