Well, we got the news yesterday that DH's drug trial has been put on hold until further notice. Someone in another country contracted Vasculitis. They don't know if it's from the drug, but they have to discontinue until they find out. Of course, we're still supposed to travel over an hour each way to have his checks every couple of weeks, but no more injections for now. DH has shown no improvement that I can see over the past few months. In fact, he's getting worse every week now. I don't know if we're going to continue the drug trial. I'm very discouraged.
Yesterday, I was with our 2 year old and his speech therapist when DH arrived home from his day program (the van drops him off.) He goes into the basement, which he often does, but he comes back up with no pants on, bare from the waist down. Fortunately, the way our house is laid out, I could see him, but the therapist didn't. He realized his mistake, I guess and turned around fast and went back downstairs. I brought him underwear and helped him put his pants back on, and no one was the wiser. But I was mortified! All I could think was what if she'd seen? What if he does this when the 17 year old babysitter is there and I'm not home? This is definitely a new low.
I just can't believe how quickly DH is deteriorating. There's so much he can't do now, including dress himself without help. I can see that a year from now, he'll probably need help with toileting.
I left a message with the people who are doing the Enbrel injections. I know it's not FDA approved and there haven't been any formal studies. But I'm desperate, and honestly don't know what we have to lose. I'll grasp at anything to have some hope. I haven't gotten a callback yet.
Have any of you contacted them and gotten a callback? I was just wondering.
Aargh Kelly...I wish I had a good response. As I said in another thread, your experience is quite different from mine, and I'm sure you feel like you're struggling to tread water right now.
I have my doubts about the Enbrel thing, but I am not the best (and probably am the worst) source of info about that. Someone else?
Kelly, you do realize that the Enbrel treatments are very expensive? Something like $42,000 per year. The injections are typically given once a week, and there are only a couple of places in the country that provide the treatment.
To be perfectly frank, I think Tobinick is a bit of a scam artist. Despite having given the treatments to (according to Tobinick) dozens of patients over several years, there is only one success story he ever talks about. And the Alzheimer's Association has expressed some pretty strong reservations.
But there are some people posting over on the Alz Assoc web site about loved ones getting the injections. You might want to read what they have to say. Keep in mind as you read these that there is no way to know who any of the posters really are...
Enbrel for Alzheimer's: http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/4081064272
Doctors or Trials for either Enbrel or IVIG: http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/2301066272
Enbrel in Florida: http://alzheimers.infopop.cc/eve/forums/a/tpc/f/214102241/m/8671057392?r=3731067392#3731067392
Kelly, A young man on another forum (ADCaregiver) did a lot of checking on the enbrel treatment for his grandmother. He called and for $600 was given a one hour telephone conversation with Dr Tobinick. He found out that the first treatment is $5000 and I believe it was $200 weekly after that for life time. Also you had to move to California to continue the treatment.
I'm probably off on some of the figures but if you go to the website and check out "new treatments" He did a lot of research on it.
Enbrel for this indication - AD - is absolutely unproven. Dr. Tobinick is the only one doing it. You can be sure that if it were any good, it would be done all over the country. Not only is it expensive, it could be dangerous. I would not be comfortable having someone stick a needle in my cervical spine. That's how we killed ("pithed") frogs in highschool biology class. A slight mistake by the operator could be disasterous.
My heart really goes out to you having small children at home and having to go through this.
I was also looking into the Enbrel thing, but, I decided not to do it as I am not yet convinced that enough research has been done on it. I am still very skeptical. Yes, I would love to have my LO function better, etc. ,but, I am not sure this is the way yet.
My DH also progressed to the point where I had to be with him 24/7 as I never knew what to expect. There were times he would just want to leave the house in his underwear and T-Shirt. Luckily, I caught him in time, but, they have no idea what they are doing. Yes, it is very possible that he might try to walk out of the house in just his shirt and nothing else. When they get to a certain stage, you never know what to expect. Luckily, your husband realized it and got back into the room.
My prayers are with you, as this journey is hard enough with grown kids, so, I cannot even imagine how hard it is with little ones.
Kelly5000 ... There is a very good review of the Enbrel treatment over on the Alzheimer Research Foundation web site:
http://www.alzforum.org/new/detail.asp?id=1738
I am so very sorry things are not going well for your husband. It's awful when you have high hopes for a clinical trial that don't pan out.
There are some other studies on drugs that target TNF-alpha (the same biomolecule that enbrel targets in the AD "treatment"). That alzforum.org article mentions curcumin, which is being studied in clinical trials, and I've seen references to thalidomide, although I don't know if there are any formal trials ongoing for that. Either of these might be a reasonable alternative to the enbrel for your husband ...
About a year ago I contacted Dr. Greg Cole of UCLA about the work he was doing on Curcumin. He said that the results were still preliminary, but he recommended that my wife take Curcumin 665mg twice a day, plus DHA (concentrated fish oil) 500mg twice a day. She has been on that for a year, plus Razadyne and Namenda. I'm not sure what it has done, but her deterioration has been relatively slow and there have been very few outburst or other negative actions. You can get the Curcumin and DHA in your local health food store, but probably not in a regular supermarket. Since both of these are non-toxic and have almost no side-effects, they are worth trying. The only down side is that they are a bit expensive, and not covered by prescription insurance.
Am I missing something on this drug? From all I have read on those web sites and the Alzheimer's website, the most we can expect is to reverse a few of the symptoms for a while (with no idea how long they will stay reversed) and that they will continue to go downhill, just more slowly. That even though they use the word "cure," it really isn't. And do we really want them to continue to suffer even longer just so they will be with us in body? Am I alone in these thoughts?
I love my husband, and I want him with me, but that isn't to be with this nasty AD, and I've accepted that. I know he said years ago that he didn't want to live like AD patients had to live, but I can't stop giving him the Razadyne and Namenda, and yet I can keep from using this new drug on him. Now, if they come out with one that will COMPLETELY reverse the effects and keep them gone, then that is another story!
I'm absolutely with you Mary. Sometimes I just don't get the point of these slow-it-down therapies. The fact is, my husband is on namenda and aricept, and to the extent that they SEEM to have (possibly) enhanced his functionality for the past year or so, I consider them worthwhile. But seriously. At a certain point when things are just ridiculous and tough...if you offered me something that would hold him at that stage for LONGER, rather than just letting nature take its course...I'd tell you you were crazy and to go away. At that certain point, if it was thought that aricept and namenda WAS slowing things down, I'd be inclined to drop them. But they tell us that the end game will hit at its scheduled time, with or without meds...so maybe if functionality can be at all enhanced in the meantime, it's worth doing.
Emily and Mary I agree. What point is there in trying to extend this terrible existence? My DH left me long ago. THer is an unhappy child living in his body now. I just pray he doesn't go the complete AD route.
I had never heard of Curcumin and Thalidomide for AD. My husband also has multiple myeloma and those are "drugs" that are used for MM. My husband has taken both for MM but for sure, they didn't do anything for his AD.
Anna, Emily and Mary - Though we, DH and I, are just starting out on this road I know once he gets to a certain stage that he wouldn't want me to give him drugs to prolong it. Quick and clean is what he wants. So I agree with you.
I'm also in the group that can't imagine why anyone would want to prolong this journey we are all on. But at what point does one stop all of the drugs? In my husband's case they include high blood pressure drugs, blood thinners, and diabetes drugs. At what point is all of that just making the journey longer?
This is a subject maybe should have been discussed with your LO whent they did a health care proxy. like you say the Alz drugs do not cure the disease only help allow the patient to continue to function longer. thats the catch =no cure only helps prolong the cognitive abilities for a longer time til they move into a next 'stage' -nothing stops the disease so far from advancing as we know it today- just how fast it advances and that is different in each person and how they react to these drugs. 8yrs after starting on aricept/then adding reminyl and then namenda when it came on the market helped us for the first few yrs. then the side effects started after longterm use and our neuro decided its time to stop. DH is holding his own so to speak but losing daily function at a faster clip now. either way the outcome is the same only maybe in my mind i try to slow it down hoping for real cure to develop while he is still here. some of you with younger spouses may live this dream so stay positive in the meantime try to live and do your best while keeping your sanity in tact. Divvi
Marsh, thanks very much for your post. I spent the afternoon searching curcumin and AD ... most interesting. I think I'll talk with my husband's doctor about giving that a try. It was really good to know what sort of dosage regimen Dr Cole recommended.
Bebe -- There are several trials either recently completed or ongoing to study curcumin for treating AD, either alone or with other supplements such as ginko biloba. The trial on curcumin alone was finished a couple of months ago, but the data hasn't been crunched yet. If I recall correctly, it was an initial study to look at safety of different levels in elderly patients with AD, not a full-blown efficacy trial.
It should be noted that there are many different parameters that determine whether a drug is effective against a particular disease, including the amount that is given, the frequency of administration, the route of administration, and whether other drugs are also administered at the same time.
The rationale behind studying curcumin, which is a key component of curry, for treating AD is that AD is almost unheard-of in India; and the spice has been shown to have all sorts of properties that might be expected to be beneficial for preventing and/or treating AD. Of course, even if curcumin is effective at preventing AD, that does not necessarily mean that it will be effective at treating AD once it has developed. But we can hope ... !!!
Thalidomide is not that far along yet, but is being studied in animal models due to its ability to affect TNF-alpha production. Enbrel binds to TNF-alpha, interfering with its activity. Thalidomide interferes with TNF-alpha production, which would be a preferential approach. Some researchers are developing analogues of thalidomide with improved lipophilicity to ensure high brain penetration, and thereby offer better efficacy than thalidomide itself.
Go to PubMed and type in "thalidomide alzheimer's" to retrieve abstracts of papers that have been recently published in this area:
Oh -- I did notice that curcumin is not particularly water-soluble, and so it isn't taken up very well at lower doses. Some people think that perhaps it may be helping to prevent AD in India is that the turmeric root is cooked in an oil, and the oil helps "leach" the curcumin from the root and improves its bioavailability. So perhaps the combination of the fish oil and curcumin helps, not only because the fish oil itself appears to have protective properties, but also may improve uptake of the curcumin.
Dr. Cole recommended "dissolving" the curcumin in warm peanut oil and then putting it in a smoothie. I found that it does not dissolve well. My wife is also diabetic, so I didn't want her to have a smoothie twice a day. Maybe I'll try cooking it more and see what happens. I have been giving it to her with meals in hopes that will help with absorption.
I have a doc from India and she told me her FIL had AD, that it certainly exists in India, but it is vastly under-reported. Also, India has a strict caste system, so it would be interesting to see if one caste has more AD than another, is it genetic?
Be careful with fish oil if you are diabetic. Read the label, talk to your doc, it is not always recommended.
All that being said, research is worth the effort on most things, even if it's only to determine they are not effective.
So, when in doubt, go to the source. Dr Cole was kind enough to talk to Marsh a year ago, so I tracked down his email address.
Dear Dr Cole:
I would appreciate any recent information that might be available on the efficacy of curcumin for treating alzheimer's.
I've seen several articles that mention the results of a clinical trial in China were published in February, but haven't seen anything on what those results might be. Unfortunately, there is no abstract, and I can't find a point of contact to request a copy of the paper.
There is a discussion ongoing at theAlzheimerSpouse.com website about this. One of our posters mentioned that he had spoken with you a year ago, and you suggested that he try 665mg curcumin and 500mg DHA twice a day.
Based on what you've learned since then, would you still recommend those dosages?
He also said you suggested dissolving the curcumin in warm peanut oil, and then making a smoothie. However, he has been having trouble getting the curcumin to go into solution. Does it need to be fully dissolved? Also, his wife is a diabetic; do you have any suggestions as to what type of "smoothie" might be appropriate for her?
Any advice would be much appreciated.
Thank you.
Response from Dr Cole:
The clinical trial in Hong Kong from Larry Baum did not show any significant safety problems or any clinical efficacy in terms of progression but it did show a trend toward an effect on plasma abeta rising that may mean enhanced clearance. So some hope there. The trial at UCLA has not been presented but doesn't look like it will show much. Our data suggest poor absorption of curcumin from supplement capsules. This may be one problem with our trial. Of course, it may also be that curcumin alone will not prove useful with established AD.
We continue to believe that DHA plus curcumin and possibly plus alpha lipoate will prove helpful. One German clinical trial suggests some slowing of progression with 600mg of alpha lipoate, but it is not a placebo controlled study.
We have tested a new curcumin formulation from a company with remarkably improved bioavailability, but it is not on the market yet.
In the meantime, dissolving curcumin in hot infant formula or milk looks like the best way to deliver it. (You don't need a smoothie.) There is a paper from J. Lupski that used hot infant formula hypoallogenic casein hydrosylate ( alimentum ( Similac) ) that showed high bioavailability. The more dissolved it is, the better absorbed.
We have to guess on doses until we get better clinical trial data from these formulations with improved bioavailability. I would say that one should be cautious if you are able to dissolve it and take it with hot milk or oil. The best approach would be to try a low dose - say 500 mg a day and watch for any side effects and cautiously go up in dose. Probably best to work with a physician if you are experimenting on your self or a spouse. We know people taking high doses, but as with any potent drug, there will be potential for side-effects. Most frequently this has been diarrhea but you can look for bruising or GI bleeds or any other issues that would make you back off or quit.
Also, please note, we continue to have good results in animals -- but we haven't been able to really prove that it works in people -- yet!
Sunshyne, thanks for the post from Dr. Cole. I had planned to contact him again, but you have gotten the information I wanted. I'll try the warm milk idea, although my wife has never liked milk.
My wife saw a new doctor yesterday, an internist specializing in AD. He made some changes in her medications (substituting Exelon Patches for the Razadyne, increasing Namenda to 30mg taken all at night, and changing her statin from Simvastatin to Lipitor). He said the Lipitor has a beneficial effect on AD which the other statins do not. He also said the researchers are getting good results from a vaccine and that it should be available in about 2 years. This won't be soon enough for some of us, but gives hope for those still in the early stages.