Has anyone seen this? http://www.sciencedaily.com/releases/2008/01/080109091102.htm
The first paragraph from the article: "ScienceDaily (Jan. 9, 2008) — An extraordinary new scientific study, which for the first time documents marked improvement in Alzheimer’s disease within minutes of administration of a therapeutic molecule(Enbrel), has just been published in the Journal of Neuroinflammation."

I used to take Enbrel for my rheumatoid arthritis, I was surprised to see it as a possible treatment for Alz. I'm optimistic about it's apparent effectiveness in the trial. Anyone out there (or loved one) take part in the study?

My grandmother died of Alz and my aunt is in the advanced stages of the disease, I'd love to get her into an Enbrel trial.

(my first post - hope it's in the right place )

I came back to the board here after a long absence to make sure this information was available. It sounds extremely positive. I think I will begin searching for doctors who will consider this treatment for my mother.

Keep us posted.

I know some of the Brenham doctors.

eoadcaregiver@yahoo.com

BTW, at the International Alzheimer’s and Dementia Conference (ICAD) conference in Philadelphia about 3 1/2 years ago, I saw a presentation about brain cells going dormant for a very long time before dying. Though not mentioned, that would account for parts of the brain to suddenly start working – a characteristic of Alzheimer’s when someone who has not been talking, says something in context. It would also allow for immediate dramatic improvement in symptoms.

Here's a paste-link to the article on Bloomburg.com (a business website) - it has a few more details.

http://www.bloomberg.com/apps/news?pid=20601202&sid=a0j.t_nzzQcQ&refer=healthcare#

I was wondering if the 15 study participants were still receiving Enbrel. From the article, it looks like a least one has continued treatment.

"``This absolutely has the potential to be a disease-modifying treatment,'' said Edward Tobinick, one of the study's authors and an associate professor at the UCLA School of Medicine. ``Since this report, our patient has received several other doses, and he's continued to show a therapeutic benefit.''"

Are there any Enbrel clinical trials in the UK?
What are the expected timescales for results?

I heard about this Enbrel study on ABC news last night. Apparently, an 81 yr old was injected in the spine with Enbrel. Within 10 minutes he had his memory restored. I would also like to know if any Doctors in Orange County are prescribing this treatment or if there are any clinical trials in this location.

I called the Institute for Neurological Research, 310-824-6199. This is a private practice for Dr. Tobinick. There are no clinical trials available, but you can receive treatment if accepted after a $300 first appointment and then a $650 Medical evaluation appointment. If accepted, the weekly treatments cost $600 plus the drug which cost approximately $220 per week. I do not think any insurance company will pay for treatments since it is considered experimental. So, why aren't there any trials if this is such a wonder drug for alz.??????

I'm sure a larger, double-blind study is in the works - possibly several.
This FDA webpage shows the new drug development process: http://www.fda.gov/cder/handbook/develop.htm

In the Bloomberg article the representative from Amgen/Wyeth said, "The concept is interesting,'' said Michael Lampe, a spokesman for Madison, New Jersey-based Wyeth, in a telephone interview today. ``In general, we don't discuss early stage research."

I'm betting the other TNF-a drug manufacturers are going to be on this one quick, hence the hush-hush reply. (The other TNF-a inhibitors are Humira from Abbott and Remicade from Centocor)

I read this from the Journal of Neuroinflammation 2008:
Rapid cognitive improvement in Alzheimer's disease following perispinal etanercept (etanercept = Enbrel) administration


Published: 9 January 2008

Abstract (provisional)
Substantial basic science and clinical evidence suggests that excess tumor necrosis factor-alpha (TNF-alpha) is centrally involved in the pathogenesis of Alzheimer's disease. In addition to its pro-inflammatory functions, TNF-alpha has recently been recognized to be a gliotransmitter that regulates synaptic function in neural networks. TNF-alpha has also recently been shown to mediate the disruption in synaptic memory mechanisms, which is caused by beta-amyloid and beta-amyloid oligomers. The efficacy of etanercept, a biologic antagonist of TNF-alpha, delivered by perispinal administration, for treatment of Alzheimer's disease over a period of six months has been previously reported in a pilot study. This report details rapid cognitive improvement, beginning within minutes, using this same anti-TNF treatment modality, in a patient with late-onset Alzheimer's disease. Rapid cognitive improvement following perispinal etanercept may be related to amelioration of the effects of excess TNF-alpha on synaptic mechanisms in Alzheimer's disease and provides a promising area for additional investigation and therapeutic intervention

http://www.jneuroinflammation.com/content/5/1/2

I googled "Institute for Neurological Research" and found Dr. Tobinick's website.
http://www.nrimed.com/index.html

They also have a patient handbook of sorts (a PDF file) http://www.nrimed.com/INR.AD8.pdf

It's says they have video testimonials from patient's family members. I couldn't watch, it's too much for me.

I'm of two minds on this now. On one hand this is exactly what I hoped for - that this treatment would become available immediately - on the other hand, now that Dr T has "set up shop" as it were, replete with a patent and emotional video 'testimonials', I'm increasingly skeptical. Darn.

Well, we'll see what our local doctors think of this . . .

I watched the videos and am impressed.

I would be skeptical except that the national news has been on this discovery too.

I hope trials will begin soon.

Why aren't the other members of this "trial" mentioned? Is it because they contracted meningitis or encepholitis and died? I hate to be a spoiler here but something is just not quite right.

Technically it wasn't a clinical trial - something like this is usually called a 'case report'.

In other news articles they do mention similar results in the other 14 patients. (Basically they say, "all 15 showed marked and sustained improvement".)

No one died - yet, this hasn't been tested and no one knows what problems, side effects etc, may show up.

I was so excited when I first heard about Enbrel, but I am getting increasingly suspicious as I google Dr. Tobinek. I think he is an internal medical doctor and a dermatologist. I can not find him on any list of UCLA doctors in the neurology department - maybe I need to check dermatologist!!! Again, if this is so promising, I would think there would be a legitamate clinical trial.

I think it's Dr. Edward Tobinick, and while he is an assistant professor of clinical medicine at UCLA (the university), it's a research/teaching position - he isn't a doctor at UCLA medical center.

As a physician he has his own practice, called the Institute for Neurological Research.

I read his bio on his website - his medical degree is from UC of San Diego. His post-grad residency was at UCLA Medical Center.

I'm really interested in what our local doctors will think of all of this!

Much as I hate to rain on the parade ... everything I can find indicates this is not the cure-all the news media have suggested. (For the record, the news media is probably the last place I'd go for reliable information on new medicines.)

If I understand the exceptionally vague reports by Dr Tobinick correctly, his treatment requires an injection into the spinal column in the neck once a week, EVERY week, FOREVER. One of the other people posting to this discussion found out this treatment costs $820 per treatment, i.e., $42,640 per year.

I suspect that receiving injections into the spinal column in the neck is a relatively risky procedure done even once, let alone once a week.

While much fuss is made about his most recent publication (of two), and while he claims to have been administering this treatment to patients for three years, Tobinick cites only a *single* case.

Similarly, he discussed only a single case in the earlier (2006) report. He also glossed over the fact that one of the fifteen patients in that study died, and there was no autopsy to confirm cause of death.

There were no control patients, so it is impossible to tell if there really was any significant improvement in comparison with, e.g., a placebo.

Plus, while I'm no statistician, the numbers he cites do not appear to be statistically significant improvement over baseline, anyway. In my book, a change of 2.13 -/+ 2.23 points is not significant.

Finally, it should be noted that any improvement that *is* noted does not change with additional injections. The MMSE pops up (purportedly) by 2 points and just stays there, flat-line, for the six months of the study. (Also, the graphs in the report do *not* match the numbers in the abstract.) This just does not make sense to me, unless the "improvement" is an artifact.

There was absolutely no follow-up on any patients from the 2006 study, which lasted six months. So there is no way of knowing what happened to the patients after treatment was discontinued. Also, there's no way of knowing what happens if treatment *is* continued (see below.)

Moreover, the drug he is using has many potential serious side effects, even without the risky perispinal administration technique. According to MedicineNet.com, "Since etanercept has been on the market, there have been reports of multiple sclerosis, myelitis, optic neuritis in patients using the drug. Etanercept is not recommended for persons with preexisting disease of the central nervous system (brain and/or spinal cord) or for those with multiple sclerosis, myelitis, or optic neuritis. Additionally, rare cases of seriously low blood counts (pancytopenia) have been reported in patients using etanercept. Since etanercept is a relatively new drug, there is limited information on long-term risks."

Wikipedia notes, "After a number of studies and reports of adverse reactions in patients receiving anti-TNF alpha therapy (including serious and sometimes fatal blood disorders, infections, rare reports of lymphoma and solid tissue cancers, rare reports of serious liver injury, and rare reports of demyelinating central nervous system disorders), rare reports of congestive heart failure, the U.S. Food and Drug Administration issued a warning to doctors appearing in the respective product labeling of these drugs instructing them to screen and monitor potential patients more carefully."

Note that these side effects have been observed with standard injection techniques, *not* injection into the spinal cord.

Dr Tobinick has not received any funding to support his "research." The patients have paid for the treatments. This also makes me extremely skeptical.

That said, perhaps there actually is some, temporary, benefit of the injections (provided one survives.) Many serious researchers, using carefully designed experiments with suitable controls, are studying the role of TNF-alpha in diseases such as Alzheimer's. However, those who are exploring the development of new drugs are looking at small-molecule inhibitors, which will cross the blood-membrane barrier and therefore can be taken orally and do not have to be injected into the spine. More importantly, they are looking for drugs that will prevent the formation of TNF-alpha, which intuitively appears to be a much better approach than trying to inhibit TNF-alpha after it has been formed. See, for example, Tweedie D, Sambamurti K, Greig NH; 2007; TNF-alpha inhibition as a treatment strategy for neurodegenerative disorders: new drug candidates and targets; Curr Alzheimer Res 4(4):378-85.

So ... I'll be tracking research on TNF-alpha synthesis inhibitors, and see how that goes. But I won't be rushing my husband up to Dr Tobinick's clinic any time soon.

The Alzheimer's Association has it's official take on the whole Enbrel matter posted under the NEWS/EVENTS section on the AA homepage.

I too am hopeful/skeptical of the use of Enbrel for Alzheimer's. My father is in stage 5 and has been involved in past clinical trials and therefore is not a candidate for future trials. I have had a consult with the INR and will patiently await any new information as it becomes available. I was directed to read an article available on www.medscape.com.(free service)
Read Anti-TNF-Alpha Therapy Produces Rapid Improvement in Alzheimer's Disease. This article gives a little more info. The one patient that improved immediately following Enbrel injection was able to correctly name 9/10 objects and before treatment could name 1/10. The article also states that Dr. Tobinick would like to "partner with academic institutions to help design clinical trials." As it states in the article this is not a cure for AD. But it may give us some hope into improving the quality of life for those with AD. I was also directed to read "Current Alzheimer's Research" Dec. 2007.

For ~$1770 I'm amazed that someone in the Los Angeles area hasn't given it a shot yet (sorry). Seems straightforward enough, if it works in 10 minutes then this is incredible, if not then it's not that much money.

Continued treatment also isn't that much. From what I understand weekly treatment is only at the beginning and then it becomes monthly.

I think it is very important to read the following very thorough analysis from Jan. 21, 2008, and ALL of the ensuing comments, both pro and con:
http://www.alzforum.org/new/detail.asp?id=1738
Gabrielle Strobel has pointed out some issues that may have been overlooked in the rush to view intraspinal Enbrel as an instant cure.

I really can't understand how this Doctor is giving treatments, and charging enormous fees, if this treatment is still being studied and researched. Can anyone enlighten me?

Read the Alzforum's detailed investigation of Dr. Tobinick and his study:
http://www.alzforum.org/new/detail.asp?id=1738

"Scientists in the field were intrigued about the approach of inhibiting certain cytokines to treat inflammation in AD, yet also expressed reservations about the way these studies were conducted."

I called a local Rhumatologist and was told she gives Enbrel injections. hhhmm just wondering if the injection is the same Dr. Tobinik offers. I also was elated when I first heard of him but after being told the cost, I wonder why it's not shared with all the Neuroligists in the US. I was so encourged, then abruptly deflated.

I have had all the same questions go through my mind as all of you had, yet I am still hopeful. I am fortunate to live in the Los Angeles area so I called Dr. Tobinick's office 2 weeks ago and scheduled the appt for my Mom. I agree with one post, the amount to "find out" is very much worth it. I don't know if we can afford the weekly injections, but if I see great results, how could I stop? Our appt is tomorrow Jan 31, in which I believe they are going to do their initial assessment. I will report everything I find out. In the meantime, I took Mom to her regular Neurologist to ask what she thought about the new findings. Surprisingly, she was very hopeful and optimistic, speculating that they may approve this treatment before the end of this year, if all goes well. She was also concerned with encephalitis since that happened with a different drug a few years ago, which was injected directly into the brain or skull. I didn't tell her about my plans...I think I was afraid she'd tell me not to do it, and to just wait for the approval. Mom has declined a lot in the last 4 months, and I just don't want to wait. She's not having a good life as it is...

Felicia

Felicia,

Please do keep us informed on the progress. I have much the same concerns for my husband. Someone posted that they have received these injections for RA and did not notice much of a difference. I'm wondering if the injection that Dr. T uses is the same as the one for RA. I would like these questions answered because we have an appt with a neurologist and a rheumatologist in the next few weeks. I would like to be informed. I am desparate to help my husband and will do most anything, but I worry about the side effects of Enbrel.

Jeanne

I am in MA and my wife Linda is 51 and late stage. She no longer speaks, paces constantly, is incontinent, and needs help bathing, dressing and doing any task. We also have been in contact with Dr. Tobinick and have had Linda's Dr. contact them as well. Linda's Dr. recommended her trying the procedure, and if results were there offered to explore local treatment options. We are waiting now to see if she will be offered the treatment, and then it is trip time. MA to CA is a bit of a commute, but there is not a lot of time to wait, considering Linda's decline.
Is there ANYONE out there who has actually started the Enbrel treatment? As far as Linda's situation, she is so far gone that any result should be quickly apparent. Can't see that this is much of a risk, since she is already scr*wed.
Bob Lee

I will be praying for you and Linda...She's too young for this. Please keep your thoughts positive...That's all we can do.

Jeanne

I took Enbrel for two or three years for rheumatoid arthritis. I had no side effects* to speak of, other than injection site bruising/swelling and an increased chance of catching colds. If I did get sick I had to stop taking Enbrel because it suppresses the immune system and could make a simple cold rapidly turn into a dangerous pneumonia. Rheumatologists test all their patients for latent TB before starting Enbrel. (Tuberculosis)

The RA Enbrel injection is not the same as the AD perispinal injection. I did my RA Enbrel myself, at home, twice a week. Just under the skin on my thigh, it's called subcutaneous or SQ. A perispinal injection carries with it MANY more hazards than a simple SQ injection. I have no idea what dosage is being used for the AD Enbrel.

For me and my RA, Enbrel stopped working after about two years - that's not unusual in autoimmune diseases like rheumatoid arthritis.

*It's still unclear whether or not long term Enbrel use (5+ years) can increase your chances for certain types of cancer, including lymphoma.

Thank you Leela...Bad news re Enbrel...my husbands also has Lymphoma so is probably not a candidate for Enbrel. I'm getting discourged the more I learn about Enbrel.

thank you for the info.

Hi Leela,

I read the article about "Enbrel". My mother is at the early stage of Alzheimer they called "Demans". I would like to get her into an Enbrel trial also. But we live in Turkey-Izmir. If there would be an international study we would like to join it.

I went to see Dr. Tobinick yesterday and was very impressed with their kindness, sincerity, and professionalism. I did not bring my Mom, since they said it wasn't necessary for the first visit since I would be answering all the preliminary questions. I watched a long video showing many testimonials...all different stages. It was heartwarming. There was one woman who apparently was very far gone, in a wheelchair, unable to eat, dress, bathe, etc. She improved to where she seems to be at a mild to moderate level. Didn't speak to much in the video, but no longer needed help walking, dressing, eating, and bathing. She said she doesn't remember needing all that help. Dr. Tobinick doesn't promise a cure, but he does know that it can improve Alz patients life tremendously. In the waiting room, a man and his wife came in. The man went to the window, talked to the receptionist, and left to go down the hall to the bathroom. His wife stayed quietly waiting for him, reading a magazine. I assumed the wife was the patient, just because she didn't say anything and he was very active. I found out later, that he was the actual patient who received the first injection 3 years ago! If he had Alz, he was sure doing well for someone who was at least 3 years into it! I should have asked how often he needs treatment, but I was so overwhelmed with everything I didn't, I guess I could call and they would probably tell me. Dr. Tobinick doesn't claim to be a neurologist, he is indeed a Dermatologist, who does a lot of research for many things and stumbled upon this great treatment. He has received a lot of "flack" for continuing this treatment, but he looks at his patients and won't stop after seeing these results. There are risks, but I believe the benefits outweigh the risks. What kind of life do our loved ones have, and what would we want if it was us? I pray that this becomes available through insurance, because if it truly needs to be weekly, we will run out of our savings within the year. I can't believe I forgot to ask, but I'm hoping to possibly do weekly at first, then maybe bi-weekly or monthly if possible. The cost up front is high, but attainable. I paid $300 for yesterday ($100 deposit to hold the appt), will pay $1500 for the true physical and evaluation, and $600 for the injections. After I gather all the things they need, which is current blood work, chest x-ray and a TB test, we will make the next appt, where he will do the evaluation and probably the injection in the same day! Since he is not a neurologist, he will only except patients who have been diagnosed by a Neurologist, but I don't think he would exclude anybody who is healthy enough for the treatment. He is willing to train other doctors on this, and is hoping for a double-blind study to start...but it takes time, and we all know what time does to Alz patients. If I forgot anything, please post your questions and I will be happy to tell you anything I found out.

Felicia

Felicia,
Can you tell me how long your Mom has had Alzheimer's and her current status? My husband was diagnosed over 1 year ago but I know that he had symptoms for over 6 months prior to finally getting him to a doctor and getting a brain scan.
Keep us posted with her progress; I'll keep her in my prayers

Felicia;
Do you know what your Mom's MMSE test number is?
It is a number out of 30, 30 being normal.
My wife was 16 30 months ago and is 1 -2 now, so I am very aware of the time issue.
When will she get the first injection?
Bob Lee

In response to the above questions, my Mom was only diagnosed last October by a Neurologist, but her Primary Care doctor put her on Namenda 1 year ago for Dementia. Looking back, I believe this all started at least 3 years ago, when she couldn't remember how to Crochet. I thought she was talking about not remembering a pattern but it was more than that. Then I realized she couldn't do jigsaw puzzles, which I she always liked, then the checkbook, etc. I can't believe I was in such denial till I heard the words come out of the Neurologists mouth. I cried for days. We never did any testing -- I suppose because it was so obvious to the doctor, she just said she was moderate which was another shock to me. Denial, Denial, Denial!!! Recently, I did a few tests I saw on the internet. I asked my Mom to draw a clock, and she had no idea what to do. She drew a few little circles and some lines outside of it. She can count by ones, but not very good by twos -- sometimes up to 10 with a little coaxing. She talks fine, but constantly goes the wrong way heading to the bathroom, bedroom, garage, store, etc. She pretty much only speaks to answer questions, not really initiating anything except maybe a "How are you"and things like that. She remembers people just fine, or at least fakes it well. I haven't noticed her forgetting people yet, which I always thought was the first sign of Alz...that's another reason I was in denial. She is now incontinent most of the time, and unable to "clean" herself very well, toilet or otherwise. Anyway, I'm hoping a lot of this improves. I usually don't let myself get too optimistic over things, but I can't help it this time...it would mean so much to see her enjoy life. I want her to be able to sit in her chair and crochet things for her grandchildren like her mother did till she died at 88 -- no dementia. My Mom was also the best homemaker ever, and now she doesn't know how to clean a dish -- I'm hoping she improves enough to do a little housework...no I'm not looking for a maid, it just makes her happy do be useful...and it would make my life easier too!!!haha Anyway, I hope this gives you an idea of where my Mom is at with the Alz.

Thanks for listening, Felicia

Felicia;
Please let me know the results of your Mom's procedures in as adjective descriptions as possible. My Linda is farther along than your Mom at 51, and if you see some positive reaction it would give me some hope. I am so nervous about the possibilities.
Bob

I'm so glad that I have found this post! We read about this all over...My father is 61 and has Alzheimer's he is mild to moderate, he doesnt do any of the things he used to do he never had many friends (because he was always busy running half dozen businesses all at the same time!) but I just wish he could be happier = ) He is at the point where he knows but doesn't know and although he doesn't say it I know everyday he wishes this wasn't him and I'd be lying if i wasn't right there with him. Please Please keep us posted! Has anyone heard about more longer effects? How well is this really working in the long term? I know of a natural doctor in Phoenix, AZ that would be willing to learn how to do this...I'm just worried about the process does a derm. really have the right training to do this?? Also does anyone know if they are leaving a catheter in or anything of the like? I just didnt know if they were doing a 'real' spinal/neck injection every week/bi-week/monthly.

Hi Kasey,

I'm in exactly the same situation as you...only it's my husband. I would love for Enbrel to work and I am hoping soon there will be a medical code for the injection, such as there is for diabetes, so the docs could submit it to the ins companies. We should be working on that issue than everyone in the country could benefit from it. Enbrel has already been approved by the FDA for RA now we just need to get it approved for AD. Does anyone know how to go about this, where do we start, with the FDA? Please let me know about that doc in
Phx. I would be therer in a flash if it were available.

Jeanne
Dallas, TX

My husband is 53 and was diagnosed just over a year ago. We are also following this option closely. I have forwarded all the information to my husband's neurologist and he has shared it with the other neurologists at his practice. This is a large neurologic institute in Western NY. They are currently reviewing and will be giving us their professional opinion on the treatment. I will keep you all informed.

My Dad was diagnosed with Alzheimer's about 3 yrs ago and looking back he probably had it between 3-5 yrs earlier than that. Now,over a month ago, my Mom was diagnosed with it....I'm just beside myself! I knew something was wrong with Mom but I truly thought it was all the pain meds Mom took. She has a very low pain tolerance and she goes to a doctor, who's nurse practitioner gives her pain meds all the time.
Mom is different than Dad on this, Dad wanted to know what was wrong and Mom says she does not have Alzheimer's, which I know is the case most of the time.
Mom had went into the hospital because she had fallen on the concrete porch and put a pretty good size knot on her head. She layed there for over 20 minutes(this is what she estimates, none of us were around)and a neighbor heard her and called the ambulance. While in the emergency room, 2 of my sisters and myself told the Dr that Mom had been doing strange things. He called in a neurologist who tested her along with 2 other neurologist and told us their findings(they did a brain MRI also). There are 6 of us siblings and the oldest 2 are in denial..but then again, they think Dad does not have Alzheimer's either.
Basically, I'm the one that does things for my parents with the help of one other sibling.
Also, while Mom was in the hospital they found she had a fractured L5 vertibra that was a least 2 months old. Mom has been falling for some time and would not use a cane nor a walker, even though I asked her to all the time. She would not even wear the medical alert around her neck, so when she fell she could not call anyone. Mom just lays on the couch now, even though I try to get her to do things and to only go to sleep on her bed, she refuses.
Even though Mom and Dad are older(Mom 79, Dad 85) it still does not mean that I don't want the best for them or whatever treatment can make them enjoy their life better.

Thanks Mary...I'm very anxious to learn what they have to say.

Jeanne

Hi Everyone,
Update on our Enbrel Appointments:

I haven't been able to get all the medical records and tests yet for Mom, so I haven't scheduled the appt yet, but I think it will be within the next few weeks. I had some other medical emergencies this weekend...my Fiance' had a blockage in his intestines which turned out to be a tumor. Still waiting on the pathology report. Anyway, I will get back on the Enbrel track ASAP --

Ruby, it's hard when not everyone in the family understands. I went through a really tough time in the last couple of years -- finally they stopped "blaming" me and my Dad. and excepted that it's Alzheimer's. They thought she was just depressed and unhappy and the symptoms were dementia. What they didn't understand is that she has demetia, and the symptoms are depression! Once it was finally diagnosed by a neurologist, they accepted it and stopped blaming us. I pray that your family will do that too. They need to read these forums and you need to tell them everything that you are going through and how difficult it is for you to see your parents suffer and change. They need to spend more than a few hours at a time with them to know what is truly going on, and they need to accept it, and be especially patient with your Mom because she is at the stage where she knows she's not "right", and it is scary for her.

I will let everyone know after Mom's first Enbrel treatment. I also had the same thoughts as Jeanne. Does anyone know how to get this rushed through the system? We need to get this approved fast...I know there is protocol and risks, but some risks are worth taking!

Felicia

Did you read how it was administered? Not very practical.
Arlene

I have been watching this discussion with interest because my father was scheduled to go for testing with Dr. Tobinick. Today was the big day. He got all of the tests done which took several hours. I believe they said his impairment was mild/moderate or something. I didn't actually go to the appointment so this is second hand...BUT...he did receive his first injection today and did show some improvement within minutes. Before the injection they showed him a blank clock and asked him to number it but he only got to 9. After the injection he was able to number it in order all the way to 12. He also has noticed that he isn't getting stuck on his words so much in conversation. He still gets caught on forgetting a word or so but he can move on and work around it instead of coming to a complete stop and forgetting what he was going to say. The doctor says they have to come back every week and that it will take at least 5 weeks before they will really see the most improvement, but for now we are quite hopeful. It is way better than I had hoped for and we just pray that it will continue. Yes it is expensive but so is full time care. Just wanted to let you all know that although today wasn't a scientific double blind study, it seemed to help and it did give us some hope. Blessings to you all.

Wow Cathy, thank you so much for posting this news! I am so happy for you and your Dad. I am still trying to gather the things Dr. Tobinick needs to get started. Did you have trouble getting a Chest X-ray and TB test? If my Mom's doctor doesn't set it up, I don't know where to go.

Please let us know what happens with your Dad as the days go on and tell your Dad he has my hopes and prayers!

Felicia

Cathy and Felicia;
Thank you for posting your journey through the Enbrel therapy. We are gathering the test reports as well for Linda. The website for INR and several articles stated that the patented technique was going to be taught to other doctors. We are really hoping that someone in the northeast will be offering this. From what I have read, many patients get on a weekly regiment and initial treatments may be 5 or 6 weeks long. We live between Providence and Boston and with the large number of excellent medical facilities within 50 miles of us, it seems a shame to need to move to LA for Linda to get the treatment. Plus, traveling is a challenge with a patient who is incontinent and cannot speak. Sigh...
I would like to hear from anyone else who has actually had the treatment that is moderate to severe or knows of any other doctors who have learned the procedure.

My father was a physician and already had the xrays and everything else needed. Maybe they will do them for you at UCLA. I went to see dad today and he was talking almost normally! I am optimistic but trying not to be too hopeful just in case. He could still speak before but tended to repeat the same stories and not participate in conversations except to change the subject to one of his stories. Today he was following the conversation, using words I haven't heard him use in a while and even interjecting comments at times. I can't say he is back to normal but I would say it has been several months to a year since I've seen him like this. Of course he is completely over the top excited about it and says he feels like someone swept the cobwebs out of his head.
Mom said initially the doctor said they would do every other week but after he heard about the amount of assisted tasks necessary he upped it to every week. He said they can taper off later if it turns out well. Good luck to you all. I'll check back to see what others have experienced with this and I'll update you as well. Crossing our fingers and praying!

I'm still very hopeful that Enbrel is what we have been praying for. Is there any new findings on this? Please, if anyone has any new info please let us know.

I almost hate to post again. I don't want to be overly optimistic or give anyone false hope but I can just speak from what we have seen in this one case. My father can read again and was working on his taxes on Thursday, two day after the injection. He lost his ability to read about 6-8 months ago. He is very upbeat and hopeful and we are trying to be realistic but also coming to terms with what we have seen so far. He will get an injection every Tuesday for a while and I'll let you know what we are seeing. I am praying that this IS what it appears to be and that many others will be able to get help.

The more you post the better. It is great to see some real feedback on the treatment.

This is possibly an offensive question, but you aren't affiliated with Enbrel or INR are you? I apologize in advance but I have to ask.