Many on the site are aware that I'm a participant in Biogen Passport? clinical drug trial. This is an infused antibody drug that essentially helps with the removal of misfolded tau proteins aimed at slowing or stopping the progression of the disease. It is still too early to say specifically that the trial drug is working... data is still be collected. However, there have been no adverse reactions reported and some indications the drug is having the desired effect. Research could be on the cusp of a treatment breakthrough.
Tim
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daddyt
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How long have you been having the infusions? Have been missing your updates on your laborious, but so inspiring daily battle with life with PSP.
Will be so awesome if you are able to see some stabilisation, and hopefully some improvement!
Is the infusion troublesome to administer! My grandson was offered some sort of infusion for pain relief, and it is apparently put directly through into the brain in some way - presumably through an artery (?carotid?). Being aged only 20, he has refused at this point! It was not something he or his family had come across before. Maybe as time progresses it will become commonplace - like heart transplants!
Big hugs to you! You deserve a positive of some sort - and an icecream!
Hi Jenn - I've been receiving the infusions for 6 months now. We're seeing some stabilisation physically... cognitive-wise I feel I'm doing better. And thanks, I'm enjoying some ice cream as I respond to your post.
Hi, I too did not know you were in the Biogen clinical trial. That must be in the second book that I am anxiously awaiting for it to appear. Since you mentioned it here, what month did you start with your first infusion? What "indications" do you mean when you state it is having the desired effect?
I know that John, DonnaSue's husband, was in the AbbVie clinical trial and she gave specific instances of positive indications.....eyes improved, began to get improvement with his arm (which he had difficulty moving). Alas, pneumonia visited him. WHAT ARE YOUR PERSONAL INDICATIONS?
Hi Margarita - I started the clinical trial 6 months ago... I think. I was - still am in a different study - ONDRI that follows cognition, gate etc., no medications involved. The Biogen Trial will be in the third installment of The PSP Chronicles. Positive indications for me have been more cognitive but I've had some mobility improvement. I can even snap my fingers now - one hand only, but I'll take it.
I think all in our PSP family would be happy with any kind of a breakthrough... even it is "slowing down or stop the progression" That would give research more time to work towards further treatment - better yet, a cure. I've made PSP awareness and support my passion and mission. My PSW tells me I have no time to die, I'm not one to argue (:
Wow, Tim! That is such good news FOR ME. Thank you!
I get such an uplift from your postings, your responses, and of course your book(s).
I miss my son each day....wanting to share some thought or happening with him, but each week brings joy and each month I feel better. I am flying up to Portland for Christmas.
I wish you a very joyous Christmas and may in church you hear...10,000 Reasons!
That is great news. Congratulations! My wife is also in the Biogen Passport Study. She just received her 8th infusion yesterday at Northwestern in Chicago. We still don't know if she is getting a placebo or the drug, but we are thinking she is getting the drug. After each infusion, she feels more steady for the rest of the day and definitely walks with more confidence. She also feels stronger.
As for the long-term, she seems to have stabilized somewhat. Her gait has not worsened significantly since she started the study. She has never had any cognitive issues, and that continues to be the case. Yesterday, the Neurologist running the study at Northwestern said she actually did better on the battery of tests she is given each month than she had done on the previous two month's tests. We were obviously really pleased to hear that.
Also notable...my wife had to have her gall bladder removed about 6 weeks ago. This required that she receive a general anesthetic, which is known to trigger rapid advances in people with neuro-degenerative diseases. This does not seem to have happened with my wife. I have no idea if that has anything to do with the experimental drug. Just making the point that she is either on a really long plateau, or the drug just might be doing what it is aimed to do. I also know that we have real hope today. Hope that did not exist a year ago.
I am hoping you do too.
BTW, the people running the current study are looking for participants for the next (3rd) stage study is looking for volunteers.
Wonderful to see that she seems to be benefiting from the trial. I'm somewhat stabilized too... just don't know if it's a result of the ongoing trial or a plateau. I don't take anything for granted and remain very hopeful... after all, hope matters.
Hi, Depending where you live - UK you can check with PSPA and ask about any upcoming trials. If you're in the US, visit Cure PSP.org site and follow the menu, there maybe a section on clinical trials. If not use the search bar.
Very interesting. My husband had a spinal tap to rule out other things because his disease has been progressing so fast . They found a huge concentration of immunoglobulins in his spinal fLuid. They tried to treat it with steroid infusion, but it did not help. Mayo Clinic said it is rare for PSP patients (about 5%). Doctors felt that if there was a way to reduce the immunoglobulins, it might have a significant impact on his condition . Unfortunately , they couldn’t figure out how to do that. Maybe this treatment would of helped him.
I'm also doing a "side" with the neurologist who heading the Biogen Passport Trial where I am. It has involved a spinal tap at the beginning of the trial period and one at the end.
Was your spinal tap clear? The primary neurologist my husband saw was so alarmed at the huge number of immunoglobulins that he felt this may be the primary cause of his symptoms as deterioration . He even questioned the PSP diagnosis. Unfortunately, treatment did nothing.
Cognitive issues, and incontinence were some of his first issues. Best of luck to you. It’s wonderful you are in such a great drug trial.
I don't know the results of the first spinal tap. My wife told me their findings are used as a baseline to measure the amount tau protein in the fluid. When the trial concludes I will have another spinal tap and those results will be measured against the baseline. I'm glad you're enjoying the book. When you're finished reading could you please give the book a review with the retailer you purchased it from. The more reviews a book receives, the better positioning - placement amongst the 6-8 million titles out there. My book... my story's intention is to raise PSP and other brain disease awareness with proceeds going to PSPA and Cure PSP. The better the book does, the greater the benefit for support, treatment-cure.
Tim, glad to hear the clinical trial might be helping. I also want to have awareness for PSP patients of the Salsalate clinical trial. It is not a blind study so that's what is good about this study. My husband was in the 6 month study 2 years ago, after 6 months he had also stayed stable no progression through that time. His PSP has been a slower progression than a lot of others I have read on PSP sites. He is in year 5 of disease at least and is still active he can carry on a conversation like he always has, which is such a good thing. Saying all this he still has his rough times, he seems to have more pain than most that post. The winter weather doesn't seem to help at all. I hope this study really does help you and others, but I would like others to consider thinking about the Salsalate study also.
Take Care.
P.S. I read your book about a month ago. Thank you so much for sharing.
Like your husband, I have a slower form of progression and 5+ years into PSP. This has allowed to pursue fundraising and PSP awareness initiatives, I continue to make the most of it before the disease progresses.
I too (try) to remain active and can converse when the talk is "chunked" to me... that doesn't mean I always remember it. I think my that's convenient on my part.
Good days... bad days too, if you recall the Brain Game Roulette analogy. At this point, it's a whole new game. I actually just arrived back home after receiving my infusion this morning. I did inquire about the Salsalate study my neurologist had some knowledge about it. If understood her correctly ( a crapshoot for me) the objective was different. Biogen is directed at the misfolded tau protein issues and Salsalate was more focused on muscle-inflammatory symptoms associated with disease?
Thank you for your support with purchase of my book. Besides following my personal journey with PSP the book is a fundraiser with proceeds going to PSPA and Cure PSP. Could I ask you kindly, to give the book a review with the retailer you bought it from. The more reviews (Amazon) a book receives, the better exposure it gets. This can lead to increased sales which is a win-win for the PSP cause.
I wonder if this is the same research study my husband is a part of. It sounds like it since the time period seems about the same. Unfortunately he is not doing so well. We always felt he was on the placebo, but his health has gotten worse lately and I am wondering if it is an adverse reaction to the drug. Because he has severe COPD it is difficult to say what is causing the respiratory problems.
This is the same study. Biogen 251PP301and the intravenous drug is BIIB092. It is taking place in 98 sites world wide. We are with The Ottawa Hospital. I am thrilled that you find it beneficial. Can't say the same for us, but like I said, we were certain that we were getting the placebo (by we I mean my better half!)
I believe Ger is about to have infusion number 8 tomorrow. We were the guinea pigs here in Ottawa. The first to be assessed, first to have infusions. The halfway MRI was done Nov 1.
We are considering withdrawing from the study since it is not helping and may be contributing to respiratory problems.
I applaud you for your fundraising efforts and look forward to reading your books.
Must admit, I feel a little out of place. No one on the COPD site has heard of PSP, and at the moment, Gerry's problems seem more COPD oriented which doesn't fit in with the PSP website. Funny, respirologist refused to follow him since he felt PSP would get to him long before COPD would become a factor.
Anyways, thank you for your work on behalf of fellow sufferers.
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