I know I've used it before, and it's corny - but, honestly. Yesterday! (The French is "Je pique")
On what should have been a quick, holiday cover visit - no tests, no questionnaires, just warm up the infusion, plug in and go, out by 12 - I was there until 3. Nurse1 had 3 attempts, thought she had it on the 3rd but the machine kept beeping, and on investigation the catheter was twisted. The doctor had a couple of failed attempts in my left arm, and then they concluded I should eat lunch, drink a litre of water, and heat my arm under a mini-electric blanket. Bingo! But it's fair to say a monthly infusion is not the most straightforward therapy. Especially for those of us with shallow veins.
BIIB054 is now called Cinpanamab (and I think has been for a while). I hope they didn't pay the marketing agent too much for that lack of inspiration.
I confirmed that having stopped Pramipexole cold turkey, to see if it was responsible for my cough (it was - mostly), I had not resumed it because I wasn't persuaded, at this stage, that the benefits were sufficient. The holiday-cover doctor expressed surprise and suggested I discuss it with my regular doctor next visit, but acknowledged I had mild symptoms.
Otherwise, the main news is I have signed up for the trial extension, as a result of which, my research coordinator thought it would be early 2022 before I know which dosage arm I am in.
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WinnieThePoo
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Hey Winnie . . . Iol . . . I have been there and done that having completed the two year Roche Prothena Pasadena clinical trial. Roache will apparently be extending their anti asyn medication trial to a five year phase 3. So, I too, am planning to extend my participation. Have the infusions helped? Hard to say when you can’t compare the progression of the disease to how my PD would have progressed without my participation in the trial. Knowing the success rate of any clinical trial of an experimental drug is only about 2% can be daunting. But, being an optimist, I think a treatment that can slow the progression of the malady is not too far in the future.
Yes. I'm cautious. The isradipine trial was an example of a drug which looked really good going into phase 3 and bombed spectacularly and expensively. But in spite of Jim's concerns about another beta amyloid, there has been a lot of promising a-syn news recently. It actually looks more likely a culprit now than it did at the start.
Biogen and prothena have seen the data and are making a commercial decision based on it.
And whilst I repeatedly emphasise your point that it's expectation is to slow progress and not reverse damage, I'm starting to wonder.
Bepo on her "stop drinking weedkiller and cure your Parkinson's" thread asked if you could grow new neurons. The answer is"no". Nor do dead neurons revive. But there have been plausible suggestions that neurons don't just drop dead, but switch off for a time first. Maybe they can switch back on when they stop being battered by a-syn.
You'd have a job convincing my wife to the contrary view. She's convinced year 2 is different. And it's not easy to refute the idea.
Sue thinks the trial drug is working year 2. Didn't year 1. I'm lying here in bed , ,unmedicated, replying to this on my mobile phone held in my affected left hand, rock steady. There have been times it was flapping like a seal. Tremor is the main symptom Sue references. Looking at the mix. It's less clear cut than that would imply. It's a confusing condition which fluctuates and changes, but...
A couple items to note . . . on September 14 Roche is scheduled to elaborate more concisely as to the so-called “signals of efficacy” so I am anxiously awaiting a more thorough review of just what positives the cohorts in this study experienced.
Secondly, Biogen infusing upwards of $1billion in Denali Therapeutics also is uplifting in the sense that one of the expertises of Denali is expunging the waste materials in the cell. Just wondering whether a combination of targeting the misfolded asyn and pairing that with a way to flush that cell wsste out more completely might be involved in some of their thinking here . . . mmmm
Hello youngparkie . . . It is my understanding that Denali/Biogen will be introducing late phase trials for those with the LRRK and those with “sporadic” parkinsons in 2021.
And just google Denali Biogen and you will see a wealth of articles. I took a gene test and It was determined that I did not have the LRRK gene. In talking with those administering the Phase 1,trial all cohorts are registering for the next phase as well. Initial snippets I have been able to gather have been positive. So YoungParkie keep abreast of what Biogen/Denali is doing. Follow the money! Some one or more at Biogen must see something here.
You can grow new neurons, just not in the brain. you can grow them in a lab and inject them into the putamen via surgery. one team in japan has finished dosing their phase 1 last year and we're all waitin for a three year update next year. Check out Aspen neuroscience and bluerock therapeutics
I was put on the naughty stool again! First time was for increasing dose to 1mg. I had discussed trying titrating off gradually and have a prescription for 0.52 and 0.26, but I realised I forgot to take the 1mg one day, so thought Id see what happened tomorrow, and the next day, and bingo I'd stopped. Few days when I thought I really needed to start again, thought I'd try to hold out till my clinic appointment, felt better following the infusion 4 weeks ago, and it's just rolled from there. At the moment I have symptoms but pretty manageable, and I feel no rush to restart
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Feeling a little disillusioned about TTFD and High Dose Thiamine (HDT):
Comprehensive supplements list (when to take and with what)? Not just for PD.
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