No, no affiliation at all. I used to work as an X-ray tech back in the day and my father who has the AD was a radiologist. I've been out of the field for almost 25 years now. I don't blame you for asking at all. No apology necessary. I'm just a concerned daughter and praying for a miracle, like the rest of you, I would assume.
We are about 4.5 hours drive from UCLA but are willing to make weekly trips to give it a try. The doctor says he is willing to train others to administer the meds. His training seminar is expensive too- $20,000. According to my mom, some people have come from Europe and brought their physicians with them in order to get them trained. Then they go home and their own doctor does the treatment. Maybe that would be an option for some of you.
My biggest concern is the money factor. Fortunately for my parents, they are well enough off and live close enough to be able to pay for it. I get concerned about the profit factor and the people who can't afford it. From what I've read it FEELS like money is a big part of this whole thing. My mom said in person at the office it isn't like that at all and they treat everyone very well, with respect and take lots of time with each individual.
Blessings to all of you.

Biblecat,

I agree with Lloyd -- Please keep posting, we will never get bored with the fantastic news! My Mom is declining very quickly, and if I didn't have this hope I would be falling apart right now. I too have to admit that the "skeptical" thoughts went through my mind just as they did with Lloyd, but we are human and can't help it. I also apologize for thinking this way. Anyway, I'm thinking maybe I should video tape my Mom's actions now, so that I can show proof of her progress after Enbrel, then the skepticism may ease up. As noted, we don't know the long term of the effects of Enbrel, but we do know the long term effects of Alzheimer's.
Let's work on getting this approved so ALL of our loved ones can receive the benefit of this treatment.

Thanks, Felicia

I'm right with you Felicia...We need to work on getting Enbrel approved for AD so mainstream america can have it paid for by their ins companies. The drug has already been approved, we just need to make it a standard treatment for AD. It just would need a code so the insurance companies would pay for it. I wonder if the doc's doing this could ask the insurance comapnies to give them a code to use for this purpose. I would be willing to help in any way I could.

Jeanne

Cathy;
How did your Dad make out Tuesday?
We are grateful for your posts and eager for updates. It makes such a difference to hear from someone ahead on the same road we are nervously approaching.
Bob & Linda

I have joined this message board at the request of my daughter, Cathy. My husband is the patient she is talking about so I will let you know some of the things we have experienced. When we went to the first appointment last week, we were hopeful but cautious. We spent several hours at the office watching videos of patients before and after their first treatments, taking tests, interviewing and filling out papers. During the videos, I became a little worried and cynical, thinking that maybe the cases weren't factual but ten minutes after my husband had his first injection, I saw one of those minor miracles. He showed marked improvement on his drawing of a clock. He seemed euphoric after the injection and during the week showed improvement in his interaction with others particularly in conversation. He said his mind felt clearer. He also improved - baby steps - in his reading. He is still not reading fluently but is somewhat better. Yesterday we had our second appointment. Again, after the injection, there was a slight improvement on the clock test. He didn't seem to have the euphoria this time but today felt strong and again interacts and joins in conversations. His attitude and affect have changed dramatically and he seems pretty normal to the casual observer, I think. We are cautiously optimistic because we are seeing changes in his personality and have hope that he will continue to gain skills lost in the not-too-distant past. This ray of hope is so encouraging because the only advice we've received from other doctors involved in our case is to prepare for long-term caregiving with no chance of regaining lost abilities.

This treatment doesn't come cheap but we are thankful that we can handle the expense. I grieve for all the people who are faced with a diagnosis of Alzheimer's disease and have no recourse but to let it run its course. With the baby boomers coming of age, we are going to see a huge drain on our society physically and monetarily so we need to work fast to offer relief to these people. We hope if Enbrel works as dramatically as we've seen in the videos and the changes are sustained that it will be made available to the general public and will be covered by Medicare and insurance companies.

I hope I've answered some questions that you might have. Keep an open mind and a positive attitude.

Arminee

Arminee;
Thank you so much for your post.
I had forwarded Cathy's prior posts to Linda's Neurologist, Dr. Norman Gordon who is affiliated with Brown Univ. in RI and he is contacting a colleague, Dr Jeffrey Cummings who is Director and Founder of the UCLA Alzheimer‘s Disease Center. A statement by Amgen has taken a position of distancing themselves from INR's off label use of Enbrel. This is unfortunate, since this will only delay wider studies and use of this therapy. This is the first that seems to allow some regression of AD symptoms. I am encouraged (but still trying to keep my cynical crust) over your husbands progress. My wife Linda is severely hammered by AD now, at 51. She cannot talk and struggles with the simplest task. We were also told that there was nothing left to do. Resigned even.
Then this Enbrel bombshell.
Is it in time?
Will we now hear "this should be widely available within 3 to 5 years."
I have a close friend who just turned 60. He is an active, intelligent guy and with a left leg deformed but functional after surgery. He was one of last Americans hit by polio and a survivor.
I keep hoping for Linda that "almost in time" will not apply. Even a small improvement will be a huge gift. Linda still has a twinkle in her eyes when the Blues plays on the radio and a big smile for her family. I know she is in there somewhere, even though speech is gone.
Please keep your progress reports coming. They are the link to informing local doctors nationwide to open this new door for AD patients. As you know, time is a bandit for AD victims. If Linda needs to wait 3 years for drug studies to prove successful before she gets treatment, it is too late.

We need to encourage ALL participants to post their experience with Dr. Tobinick's Enbrel therapy. Then we can forward these results to our local neurologists to provide the kick in the pants needed to get broad interest in a deeper exploration of this approach. Every other drug that we have explored for Linda will just "slow down the progress" of AD. Well take it from me, when you get to the severe stage, slowing down is pretty irrelevant. The next stop is dead.
From following other posts, it is learned that Dr. Tobinick has just finished a year probation from the CA Medical Board for advertising another off-label therapy for Enbrel to alleviate back pain. This was found to be ineffective in a John Hopkins double-blind study, and so the spanking and probation. This does not invalidate any results shown in the AD treatment being performed now. It does show that Dr. Tobinick pushes the boundries and thinks outside the box. But Amgen has posted statements distancing themselves from INR and no interest the Tobinick Method for AD therapy. Gun shy, perhaps due to the prior Enbrel issue. But while they are being uninterested in further study, the postings from patient experiences are showing results. I am so not interested in whether Amgen and Dr. Tobibick have a cozy relationship as I am in seeing my wife Linda get relief.
All things in life have a parallel in scenes from the first Star Wars.
When Luke Skywalker was zooming down the trench to blast the Death Star, Darth Vader had the drop on him. Just as he was going to shoot, Hans Solo (the BAD BOY) swooped in and deflected Darth with a good shot and saved the day. The Death Star was destroyed because sometimes even rebel bad boys have the answer of the day.
Edit/Delete Message

Hi Bob,

I Love your analogy! Dr. Tobinick may just be that "bad boy" we all need! I am at a standstill with my Mom. She fell the other day and ended up in the hospital for observation. No Breaks Thank God! She has bronchitis right now, and I know that Enbrel knocks down the immune system so we need to wait for her to get healthier. One good thing, to my surprise again my Mom's GP set up all the tests needed and told my Dad that she thinks we should try the treatment. I'm sure it's "off the record" on her part, but just to know that she thinks it's worth trying plays a big part in it for us. She has been their Doctor for about 25 years, and truly cares about all her patients. If you have the means at all, I say contact Dr. Tobinick's office and find a way there. I think they give special consideration to families that are traveling a long distance. If you can afford the first treatment, and there's marked improvement, you may find a way to continue. Family members, friends, Church groups, they all may want to get involved...how good it will make them feel to know they were a part of this!

Keep the faith and hope as long as you can.

Felicia

Hi Everyone
I am new to the group so bear with me as I learn the process. My dad has been diagnosed and like many of you I am looking for any chance to improve his quality of life. I did call the INR and paid $450.00 to speak to one of Dr Tobinick's associates who reveiwied my dad's MRIs etc. He was very upfront and did not claim that this was a cure but allowed the patient to stay at home longer and improve social functions. I am very interested in the feedback from those that have had the treatment. I was concerned when I learned that the group INR studied was only 15 people. I did ask if there were doctors from the east coast that were getting trained for this procedure. They did not give me any names or real answer but encouraged me to talk to our doctor about gettng trained. No luck there. I read about a Doc at Univ Of Arkansas, Sue Griffen. She apparenlty went to INR and was impressed with the results she saw. She is trying to set up a study at her institution but that will take time to accomplish. My family is ready to try this treatment but the ditance is an obstacle. If there are any physicians on the east coast that get traned we would jump on this immediatly. My dad and mom live in Philadelphia, we have contacted the memory center at Univ of PA and as expected they are not endorsing this. I will keep digging and appreciate any news the group shares.

Hi LS

Thanks for the feedback. I think we have a long hard road to face in getting Enbrel approved for AD. I will try to contact the Univ Of Arkansas, Sue Griffen to see what I can learn. Arkansas is closer to TX.

Dr. Tobinick: Is It Safe....Is It Safe....Is It Safe....Is It Safe....Is It Safe....Is It Safe....Is It Safe....Is It Safe....Is It Safe......Is It Safe......Is It Safe......Is It Safe..Is It Safe..Is It Safe..Is It Safe.......
Is It Safe.....Is It Safe.....Is It Safe......
IS IT SAFE..... IS IT SAFE..... Is It SAFE
......IS IT SAFE......IS IT SAFE......IS IT SAFE
Is It Safe..Is It Safe..Is It Safe..Is It Safe
Is It Safe......Is It Safe......Is It Safe..
is it safe..is it safe..is it safe..is it safe..
IS IT SAFE..IS IT SAFE..IS IT SAFE.. IS IT SAFE

I know it's very early in his treatment, but after two injections my husband has suffered no adverse effects. With the prognosis of AD we felt it is worth a risk. We are continuing to see slight improvement particularly in his conversations with people. As a friend of ours said the other night at dinner, he was able to contribute and hold his train of thought as well as her husband who doesn't have AD. We are encouraged.

Thank you Arminee. It is so encourging to hear such wonderful news. My DH also has lymphoma/anemia so I wonder if he could be a candidate for the Enbrel treatment. As you say, it is so worth the risk. i know if it were me, I waould take every risk known to mankind to avert this horrible illness. I'm so happy for you and your DH. What stage was he in when he saw Dr. T?

Jeanne

Hi i just joined this forum, and it is very encouraging, to hear everyones stories, i live a long way off from all of you guys Scotland actually, and just wondered if this treatment is a million miles away from us yet.

My mum was diagnosed with AD about six years ago, and from then on my dad became her carer so to speak, she did also have professional care provided by the council, they would come in twice a day, in the morning she would get a shower and then dressed, and in the evening, she would get a wash down and have her bed clothes put on, but unfortunately this came to an end about thirteen months ago when the care plan was taken from my dad and our family, because my mum had become a little aggressive supposedly, she lifted her hand to the carer, she did not strike the carer or hurt them in any way, but the intent was still there, so my dad carried on the best he could, but my dad had a pacemaker fitted when he was 49 years old, and is now 69, so it got harder and harder for him to care for my mum,so they decided to put her in a care home, we did not want this, and they did tell us it wasn't permanent, but in my opinion the social worker did everything to make this happen,and we were told it would be reviewed again in a few months, maybe they thought it was for the best because my dad didn't keep too well, but we still feel the decision was taken from us because they took away the care plan.

When my mum was diagnosed she couldn't take any pills to slow it down for medical reasons, so her decline was very fast, so as i said she is in a care home now, but she is only 62 years old, we did think maybe it was for the best at the time but now we are not so sure when mum lived with dad she was well fed and looked after the best he could, but now she is so skinny and weak, and we don't think she is looked after as well as dad did , yes she is clean and tidy, and changed regularly, but they say her being so skinny is part of the illness, but when me and my dad and sister visit she always eats the food we bring in, so she still has her appetite.

I apalogise for waffling on , but someone said it is all about money in an earlier post, and it is, but i am appalled and angry about the way my mum and our family have been treated, if you get this disease you are written off in my opinion, just one example i can think of to use, i don't want to offend people who are over weight because this also is a disease, but it is not aimed at anyone personally, but only used as an example as to where my government, or scociety go wrong, anyway here goes a person who is obese and is bed bound receives 24 hour care, but a person who has Ad recieves i hour care and that is devided over two visits so each visit is 30 minuites, but if that person becomes aggressive in anyway the care is taken from them, i know i sound bitter and i probably am but it is just not fair and isn't right, we did try to fight this but when you are not educated in these matters it is hard to fight the wheels of motion, and you want whats best for your family member, but in our case it wasn't, my dad is a wreck he hardly sleeps any more and has tried all kinds of sleeping pills from the docs, but he just misses my mum, because when you have been married for over thirty years i guess you just do, we all miss her but it's been hell for my dad, she is far gone now my mum, but as someone said earlier about the twinkle in there loved ones eyes, we too can see that twinkle in my mums, and just hope like everyone else on this forum, and for all the people who are getting the treatment for there family i hope they continue to see improvements thanks.

To jdm, my husband is in an early to moderate stage of AD. He is on Aricept and Namenda and was still declining fairly rapidly. We know he is a guinea pig but since there are no alternative treatments that may turn back the clock at this time, we felt it was worth trying. Otherwise, it is a steady downhill turn. As a friend of our said, in the early days of chemotherapy, there were a lot of patients who also bit the bullet and allowed unproven methods to be used on them in the interest of science. That's where we're coming from.

We just got home from church and were talking to some folks there. One of the men is in a men's bible study with my husband on Wed AM and he said that the improvement in my husband's ability to stay on track and to contribute to the study is amazing - better than it's been in a year. He is able to follow the subject and make relevant remarks or questions. This was obvious to our friend and is good to hear because when you're with a person all the time, you may not pick up small changes. So we are encouraged and hope that he continues to improve.

Thank you Arminee...I would like to keep in contact with you. We live in N. Dallas, TX.

Thanks for the update Arminee. I can't wait to get my Mom in for her treatment, but for us it's a slow process because she has this Bronchitis. I am sooooo very happy for you and your husband and family. I want my Mom back, and I want her to have "Herself" back. She is very sad about the "bathroom" issues, but she just has no control. This disease is strange, everybody has different problems at different times. I believe Arminee's husband wasn't as bad as my Mom, yet he couldn't read anymore. My Mom can barely function on her own right now, starting to lose control of her body, legs and mind. She can't write anything comprehensionable (is that a word???) anymore, yet she can read. The brain is an amazing organ. I'm worried that Mom may have had some mini strokes, and that this treatment won't work for her, I guess we can only try.

To Ger: I believe it's as safe as many other treatments for other diseases, but it comes with risks as everything else does. We all have different opinions on this, but my Mom wants to be OK, and I'll do anything to help her. I would have myself injected if I thought it would help her. So, I am praying my Mom gets healthy enough soon just to try it.


To gibbsy08 I am so sorry to hear all your troubles. I don't think they could take away treatment here in the U.S. just if someone got a little angry...in fact I saw it in the hospital the other day when a patient didn't want the nurses to clean her, and she hit them. They just scolded her and continued. I hope & pray you find the help you need for your Mom so that you can get her home. The care facility may be feeding her only part of her meals, if it gets difficult for them, and she probably isn't getting enough exercise to keep her muscles strong. Maybe your family can take turns to make sure she sees someone from family at least once a day to get a good meal and walk.

Take care, Felicia

I find it ironic that as we explore becoming Guinea Pigs using Enbrel therapy, Amgen is making Enbrel from Hamsters!
The molecule is made in Chinese Hamster ovaries.
Time to run on my wheel...

Back from vacation now. I guess this has already been addressed but I wanted to respond to Ger's asking about the safety of the treatment. Life itself isn't safe. We cannot remove all of the danger or potential problems in life. I can't imagine where we would be if throughout history nobody took risks or tried new things. The man who discovered/ invented general anesthesia tried it first on his wife. Many doctors over the years injected or otherwise tested their ideas on their own bodies before trying it on patients. As has been stated right now the only alternative to these injections is extremely dangerous. In other words, Alzheimers is dangerous- hazardous to one's health. Personally I'd rather die of something else given a choice. Whatever the side effects are I can't imagine they are worse than the disease! I agree with whoever said, I'd inject myself it it would help my dad get better! Hopefully this therapy will be widely successful and maybe even some day widely accepted. For now we are trying the one alternative we have been given. Blessings to you all.

I am brand new to the post and came acrossing while doing a google search for "reversing AD". I am very encouraged by what I see here, though a little skeptical. Like some who have posted though, I too feel that it may be a risk worth taking, since AD does not have any happy endings usually.

My mom is 54, was officially diagnosed almost a year ago, and probably had symptoms about a year before that. I believe she would be mild to moderate, but seems to be rapidly declining. I live in the US, and she lives in Jamaica, so I am only able to get third party feedback for the most part. This breaks my heart, and I long for the time when I can be with her. She was always there for me growing up, and I wish that now I could be there for her more.

Anyway - will be call Dr. T tmrw to see what can be arranged for my mother. I think my family can afford the treatment described, and I am waiting on my father and siblings to review the information as well and get their input. Two of them are medical doctors, so I expect some constructive feedback, and hopefully a consensus to move forward.

Will stay in touch and keep everyone posted, and I appreciate you all doing the same. I believe that God sometimes works through medical science, and I pray that this drug is an answer to prayer.

I wanted to weigh in on the Enbrel for Alzheimers topic. I am Biblecats sister and have been with our folks to one of the appointments at UCLA. We are indeed cautiously optimistic as he continues to show some improvement with each injection. After the treatment yesterday, the doctor said he had improved 5 points on the MOCA test, which is the instrument they use to help in diagnosis and tracking of Alzheimers. It seems almost too good to be true and I wouldn't believe it if I weren't watching the progress with my own eyes. The change in his affect, level of interaction, and ease of communication is quite noticeable.
Definitely, I am becoming convinced that this is a course of treatment for alzheimers that offers some hope, as opposed to the hopelessness of the other treatments/interventions that are currently mainstream. We all need to get this information out so that we can get physicians trained, bring the price down making it accessible to many more people, and bringing hope where there is currently no hope.

Thank you so much Carolyn. I live for Enbrel emails. I wish my DH could have these injections.