All, there was a post a several days ago from a caregiver mentioning that their husband was participating in an Abbvie Phase 2 trial of an Anti-Tau medication that, at least anecdotally, was providing relief from some symptoms and possibly slowing the disease progression. My wife is being screened to participate in a similar Phase 2 trial for a Biogen medication that is also supposed to remove excess tau from people suffering from PSP. The study is named "PASSPORT - Study of BIIB092 in Participants With Progressive Supranuclear Palsy"
The study is still recruiting. The drug was well tolerated in the Phase 1 trial, and showed considerable reduction of tau in the cerebellar spinal fluid of participants.
Here are the requirements to participate:
Ages Eligible for Study: 41 Years to 86 Years (Adult, Senior)
Sexes Eligible for Study: All
Accepts Healthy Volunteers: No
Criteria
Key Inclusion Criteria:
Participants with probable or possible PSP
Able to ambulate independently or with assistance
Able to tolerate MRI
Have reliable caregiver to accompany participant to all study visits
Score greater or equal to 20 on the Mini Mental State Exam (MMSE) at screening
Participant must reside outside a skilled nursing facility or dementia care facility at the time of screening and admission to such a facility must not be planned
Key Exclusion Criteria:
Presence of other significant neurological or psychiatric disorders
Diagnosis of amyotrophic lateral sclerosis (ALS) or other motor neuron disease
History of early, prominent rapid eye movement (REM) sleep behavior disorder
History of or screening brain MRI scan indicative of significant abnormality
Known history of serum or plasma progranulin level less than one standard deviation below the normal patient mean for the laboratory performing the assay
We are thrilled to be a part of this and are feeling hopeful for the first time in many months. Anyone who is interested can go to the link to find out more. You can also google BIIB092 .
Wish us luck!
Written by
Dickwin
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That is really good to know. Perhaps someone on here can be part of one of the trials now they are aware of it? It sadly is too late for my husband but I will be so delighted if they find anything to halt this awful condition.
We really will have a party then? Good luck to you and your loved one.
Dickwin, you and your wife are in my prayers. I see that you have posted 5 times, but I missed all those postings. I came across a share of yours on April 4, 2018. You stated that your wife was to start the Biogen study the next day. That share motivated me to research you on the PSP site....that share (and that a friend I met on this site husband started on the Biogen trial). I have encouraged her to reach out to you.
I reside in Los Angeles, CA (the San Fernando Valley). My son did too, in his own home. My son was just 52 when the first symptoms of PD/PSP appeared....Double Vision, slurred speech, Anxiety, and then soon a neck he could not move. I posted his story on PARKINSONS TO PSP.
My son died on May 4, 2017, 5 weeks after turning 55. He requested to NOT be fed. He had undergone two bouts of aspiration pneumonia, a seizure soon after, a PEG was installed, followed by severe constipation, etc, and was given little hope by the Neurologists on his future. On the heels of his death came out info on the clinical trials. I carry sorrow, despair and guilt for not trying to talk my son out of his decision. I miss him terribly.
I will look for your postings on how your wife is doing. It would be helpful, if time provides, for you to post a week or so after each appointment. I think to just hear of the trial initiation, the first infusion, etc, would give great hope to those of us on this site.
Margarita from the warm sunny and wonderful city of Los Angeles
Margarita, thank you for the prayers. My wife and your son share some similarities. She was 52 when diagnosed last summer, a re-diagnosis from an earlier Parkinsons DX. She, too, is a teacher. Her first symptoms, 4 or more years ago, were with terrible foot and leg pains. She could no longer stay on her feet at a blackboard. She must have seen 3 different podiatrists with no help. Then the freezing of gait started, with scary abrupt falls, then her writing went south, then her speech, general bradykinesia, stiffness in her neck and blepharospasm. Recently, she has begun to get cramping in her hands and forearms, and most recently, she started to finally exhibit the early stages of gaze palsy. She has been remarkably free of that primary characteristic of the disease for a long time. But as you know, the disease attacks everyone differently. Its primary trait may be its variability.
My wife is in the BioGen study (was BMS, but BMS sold their Neuro division to BioGen). She received her second dose today. One nice thing so far is that the drug has been well tolerated. I cannot say I saw any improvement in month 1, but what this medicine is designed to do is arrest progression. There is nothing yet that can repair neural degeneration. So I don't know if we can expect any 'result' for 6 months or more, and then there is the 33% possibility that she is receiving placebo . But we do have some hope for a better outcome, and that is more than anyone has had with this disease at any time before, so we are grateful.
Dickwin......I just now saw that you had responded to my questions. I never got an email notice, but for some reason decided to look at your postings and shares. THANK YOU!!!
If perchance you do see repairs please post for the rest of us. My son is dead, but I get such comfort from any hope....and the BioGEn and Abb-Vie are both encouraging to me.
I just spent the weekend with my daughter ( she and her brother were 15 months apart) and my sister. They flew in from Oregon and Texas. It was comforting to me....little sharings....my daughter said she was reminded how in conversations with her brother (when Jeff was trying to counsel her) he would tell her "Well I certainly can't take her/him seriously". Just that little sentence would help her move on.
Hi Dickwin....I have been following, as much as possible, your shares and postings. If I have deduced correctly your wife's first INFUSION was around April 6th. So, I think she had her 2nd infusion around May 9th or so.
Have you noticed any changes after the first or second infusion? Has she shared anything out of the ordinary for how she is feeling? Have you been given any information by those who are administering it as to WHAT and WHEN to expect changes?
Is your wife receiving any over the counter supplements?
Please post/share as time allows you. I do not mean to be a bother, but I'm sure you have noted my impatience and eagerness to hear.
For me, I find the sharing of those who are in clinical trials very encouraging.
Los Angeles is very gloomy today....and not even June yet (JuneGloom).
Blessings, keeping your wife and you in my prayers.
Your timing is pretty accurate. My wife received her third infusion (given every 4 weeks) this Tuesday, May 29th. Immediately after each of the infusions, she has felt a bit of an energy surge, but it is fairly short-lived. We saw her regular Neuro/Movement Specialist 2 weeks ago for our quarterly visit. At that time (exactly 6 weeks into the treatment) my Wife's Neuro saw no advance in the disease progression since our last visit with her 3 months earlier (she is not administering the anti-TAU trial medication, but is very aware of it.) We took this as good news at the time. Although at this point, any non-bad news is good. We were cautioned not to draw conclusions or get false hope, but that news felt pretty good, and I allowed myself a little too much hope (if that is possible). Over the last weekend, my wife experienced her first backwards fall, and the next day, she woke up with double vision. This disease is very variable, and affects everyone differently. My wife has some symptoms in spades, but Gaze Palsy only recently started and has never caused double vision. And while she has had many falls, they were always forward. So two major symptoms striking for the first time in 24 hours feels pretty devastating to me. I put a brave face on for my wife, but I broke down when I was alone. This cannot be good. There is the possibility that she is getting a placebo. I hope that is the case, although I fear that even if she is, that at the rate her disease is progressing, it will be too late for her in 9 months. Maybe I am being too negative at this point. And I don't want anyone to get the wrong idea. I am a little afraid to write about this fearing I could shade this for others. I can tell you that Northwestern University in Chicago is still looking for volunteers for this Trial, and I would strongly recommend getting on board if you can.
Regarding your other questions, the only supplements my Wife takes are a daily vitamin and OsteoBiFlex. It's an OTC supplement that she feels helps her with flexibility. For her frequent pain (neck, hands and feet, and headaches) she takes ibuprofen.
No one involved in the study has said anything about results yet. Not even anecdotally.
Lastly, I hope you enjoyed Mother's day. My wife is from Bolivia, and we celebrated her Dia de los Madres this last Sunday, the 27th. We let her double dip this year
Thank you for your concern and prayers. I know my observations are a bit of a mixed bag, but they are what they are.
I am sorry that you are feeling down regarding your wife....especially with your perception of there being NO progress with the third infusion of the Biogen formulary and with the appearance of new symptoms. I can fully understand you feeling down especially since you see NO positive progress.
As I mentioned my son, 55 years old, died last May 4, 2017. His first symptom was March 2014, and it was DOUBLE VISION. For three years he availed himself with prism glasses. It was not until the last 4 months that his eyes rapidly deteriorated. So, for what's it worth, here's how I look at it. We too live(d) in the states....Los Angeles, CA.
1. We all acknowledge that the symptoms are not all the same, nor do they present themselves in the same sequence. NOR is the progress the same. Falling backwards is scary and now more caution will need to be taken.
2.DOUBLE VISION is such a pain. It about drove my son crazy. I do know that the prescription prism glasses were VERY expensive (approx $600+) and that they took a long time to arrive. My son requested that they be tinted, the glare even inside the house was horrible. The prism glasses corrected by about 95%. About a year later he had to increase the strength, but he could watch TV and do the computer. If the prism glasses are too expensive, you can cover one eye and it eliminates the double vision.
3. I have a friend whose partner is also in the Biogen Study, and NOT until a little over a week PAST the 4th infusion did my friend see even the smallest of positive increments from the infusions. I believe that the BIOGEN infusion moves slower than the Abb-Vie infusion, and the increments smaller.
4. Yes, it is possible that your wife is receiving the placebo. That is what my friend thought also....until a few days ago.
5. Let's assume that your wife is receiving the placebo..............You will know this by the end of the first week of September, after her 6th infusion. AND I think we should have some published results with the Abb-vie trial. At that point you can make some decisions as to whether to continue your wife with BIOGEN or.........
6. In addition, I think/believe, that the Biogen and Abb-vie trials will give more information, and perhaps lead to a more and better resulting infusions.
7. The nature of this neurological disease is that the patient is prone to depression. Because of this you need to carry the voice of optimism.....at least until your perception has been validated. I note that every few months the psyc tech does a questionaire with the patient and another one with the caretaker. That by the 6th infusion should give you greater indication.
8. I am NOT a patient person. So, I imagine how difficult being patient for you must be. It seems too that when I have prayed for patience I have instead been given trials testing my patience. Very discouraging.
Lastly, I posted on MOTHER'S DAY. I included a photo of my son, my daughter, and me at the Ahmanson for PORGY AND BESS, 2015. My mother's day was sad, but the weekend before Mother's Day, my sister and daughter had come in for a long weekend to see me thro my first May 4th. A blessing it was.
I thank you for sharing and responding to my questions. I have never been to Bolivia, but have been to Brazil (where they speak Portuguese), to Mexico many times, and to Spain.
Dickwin, I keep you in my prayers.....
Many blessings and prayer requests for patience and HOPE to gift you, Margarita
Thank you for letting us know and giving us hope!!!
Unfortunately the only Canadian participation sites are in Ontario...3,000 miles too far away... Still - always encouraging to see some progress being made
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