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, has just been
published in the Journal of Neuroinflammation.
http://www.sciencedaily.com/releases/2008/01/080109091102.ht m
http://www.sciencedaily.com/releases/2008/01/080109091102.ht m
This freaks me out.
Here we're back to cause/symptom. The human body is quite adept at trying to isolate pathogens. It wraps them in various compounds trying to keep the buggers managed. Myco's have been found in the center of kidney stones, gall stones, in fibroids, in fibrosis, in heart plaque and, most importantly, in the plaque found in brain tissue of Alzheimer's patients.
The problem with most drugs used to treat the brain is, for the most part, they can't get it past the blood/brain barrier. Hence the use of the spinal tap to deliver Enbrel to the brain.
TNF drops dramatically. Major cognitive improvement.
But what happens when the drug wears off? If the pathogens/mycoplasma have been building up behind the scenes, the 'disease' is going to come back bigger and badder than before.
Since pathogens have been implicated in depression and/or schizophrenia - I'm not thinking it's such a marvel. Anybody want to bet this can't get past a 5 year study. Not that they'll do a 5 year study, but you get my drift.
Think of the movie "Awakenings". Only a lot more ugly. Instead of returning to catatonia - do they return to, what, Alzheimers excelerated as a best case scenario, and Alz's with schizophrenia as a worst?
Pip
Edited for punctuation.
Yeah, but if you consider that for those (especially in the later stages of the disease) years are lost, the mind is gone anyway. To have an opportunity to get some time back even if the disease does come back? It's still time you wouldn't have had.
However, I never suggested that any kind of research or long term problems should be ignored. I would be totally shocked to find that anyone afflicted with a disease like Alzheimer's would choose to forget the ones they love, forget most of their lives, in favor of preventing something that may or may not happen in the future when they would be "living in their own world" at that time anyway.
If their is no cure or treatment, some symptoms are better off masked.
No - haven't been there in forever! Darn trip and loss of connectivity. I'm struggling now to get caught up - after running all over LA trying to get this house up and running again. I tell you, get better, and the next thing you know, family is making you work! LOL
But I'll go look today - my 13 year old niece with Ulcerative Colitis (spelling) just had a cholesterol test come back sky high. My bro and I had a looooong convo and we're going to try and take her off the immune suppressants ASAP. He's tired of listening to her docs. Or maybe me. :-0
Jas - any idea how many of us get to 10 years on a single biologic? Not many, I'd guess. A couple people have posted 8 years so far. But for most, not. So, my guess is, with the brain, because it's the bodies master control - it's probably a heck of a lot shorter than what we deal with.
Linncn - my Dad had some sort of dementia at the end of his life, probably brought on by his unchecked diabetes. He was a difficult person to deal with when he was well. I'd shudder to think how awful this situation would have been, especially for my mother, if he'd have gotten well enough to be his old self, then dropped back down into the dementia (time tripping, etc) with some sort of unchecked mental illness like schizophrenia. Maybe for a person without issues to start out with, the risk might be worth it. But if most of mental illness turns out to be infection oriented - I personally wouldn't take the chance.
Happ, I think you hit the nail on the head - Biologic Russian Roulette.
Pip
Good point, Linncn. But again, I'm just worried about the 'after'. And for the caregivers.
Pip
It will be 9 years for me on Enbrel this February or the beginning of April. It has been my experience that most people who are long term Enbrel users don't post on these type of boards. I am doing very well and don't spend very much time posting on any message boards.GoGo - I went to the RB and couldn't find the cholesterol posts. Will run a search later. Interesting tied to Lev's post how many of our meds can make us sicker.
Jesse - this is the post.
Pip
Pip, sorry I should have mentioned it was titled "Astounding Blood TestWow, this is an interesting discussion about a potentially exciting development. I truly understand the concerns posted, but having watched my mom, aunt and cousin die from Alzheimer's, if it were me, I think I'd take a chance on the Enbrel therapy if, after exhaustive testing, it's approved for Alzheimer's. I know too well what the alternative is, and it's not for me.
Edited to add: My mom, aunt and cousin were sweet, gentle souls, before and during Alzheimers and I'm sure I would be a sweetheart too and not give my caregiver too much trouble.
Good point about the long time Enbrel users not posting. Although I have to say, I've been known to call a manager, customer service, etc. for the express purpose of giving a compliment for good service, quality, etc. but I would only call that place once and not again for quite a while. So it makes perfect sense to me that if Enbrel users are doing well and happy, they don't have much need to frequent or post on this board. Good for them!!
I totally agree with you as to how this could be a blessing to some people. The problem we APer's have is the usual arguement. Is this disease 'your body is attacking itself' or 'your body is trying to hit and missing an intracellular infection'? To a lot of us, removing a symptom is not what we want to do. We want to remove as much of the organisms as possible - hardy b***ards that they are. To us, letting them run around unchecked because the symptom is only addressed scares us to death. So, something like Enbrel, a TNF inhibitor, while bringing back memory, could what...give us brain cancer? It's just something that we're afraid of. I think pretty much all of us, on any med, would say the changes in our cognitive function is one of the hardest parts of this disease. APer's claim that the brain fog and the fatigue are the first thing to heal on antibiotics. Many of us were not on biologics - you guys mostly claim the same thing. So...who is right? I guess I'm just trying to say...do the biologics stay that way? Do you get foggy again when the drug stops working? I got pain in my extremities when I skipped the probiotics - but no return of the fog.
Again, I'm not dissing something that works. I'm just trying to explain where we're coming from.
There is a story that was posted on the RB about one of the heart researchers at Vanderbilt. These are the guys doing the fantastic MS studies. Seems he tested positive for c. pneumonia and immediately went on antibiotics - and he didn't even have heart disease yet. Just it was all over his family and he wanted to address the problem when it was discovered. So...for us...plaque is plaque. I don't want the buggers living in my arteries and I sure as heck don't want them living in my brain. And myco's love to live in plaque.
Hope this makes sense.
Pip
P.S. GoGo - I'd like to know the long term effects of AP on likelihood of ALZ or heart disease etc. Too bad it'll take 25 years for somebody to start searching death records. Does anybody besides me wish it was mandatory that death certificates said something like "heart attack; secondary to RA" or "pneumonia; secondary to HIV?"
I don't think it is so odd that when people atart to feel better that they don't spend as much time reading and posting on message boards. I know that since Rituxan has started working for me that I spend less time on RA boards. I think that is a natural reaction.Mary, I too celebrated New Year's with a shot of enbrel
take care everyone no matter what!
Pip, you are obviously very knowledgable about the AP subject and RA in general and I wouldn't even think of arguing with you about it because you could very well be right. I don't know enough about all of this to present a truly logical argument, but right now I'm so giddy with hope that I'm a little too narrow minded to consider anything else. A cure for Alzheimer's may not come in time for me, but God willing, it will spare my children and grandchildren. I'll be anxiously watching any hopeful news with regard to conventional medication or AP therapy. It's all good if it does the job.
Mary, I want to "talk" to you!! I wonder if the Enbrel is making you more clear-headed because of the effects on the AI issue or if it's somehow related to the Alzheimer's effect. I know the article said the Enbrel had to be administered differently from RA therapy to see the improvement, but I'd like to think there's even a little RA therapy carry-over. I guess it really doesn't matter how it works, does it, if it makes you feel better. This is very encouraging.
[QUOTE=Lynn49]Hi all, I just wanted to let you know that I'm one of those who had brain fog and energy level increase dramatically once Humira started to work. I could always take pain medication for the pain, ignore the swelling but the worst symptom of all was brain fog. There was no med for that particular symptom. I've always been articulate, wrote two newspaper columns, was the restaurant reviewer and writer for an American/Mexican newspaper. I've spent the last several years barely able to put two coherent sentences together, much less express a lengthy opinion. Just within the last month I'm a different person, or maybe I should say I'm the person I was before RA. Is Humira working on my brain, I don't know? The honest answer is I don't care and I think that's probably the way the Alzheimer patient and their families feel. If I develop "brain cancer" or any terminal side effect from Humira twenty five years from now, so be it. I'll be 77 years old and I'll have felt that I've lived a full and generous life.
If we kept drugs off the market that had future serious side effects that would be a disservice to the people who needed those drugs to sustain life. There are many drugs being used that have grave side effects with long term usage, but are life saving when used for shorter periods of time.
Bird Girl, your post about your family member who nearly burnt down the house really struck home. When the assisted living facility my mom was in asked us to move her because she was becoming harder to manage, my dear husband said she could live with us. At the time it was just before Thanksgiving, and my mom and several others were at our house for dinner. After dinner my mom put some ice cream on a paper plate and put it on the stove to warm the ice cream up a bit because she thought it was too cold. Of course, the paper plate went up in flames. Oh yes, if there was any chance at returning to a near normal state for now, I'd try that medication and worry about the long term affects later. This is life and death we're talking about and postponing a slow, awful death with Enbrel is a no brainer as far as I'm concerned. I'm 55 now so those researchers better hurry!!That's my point. NO ONE HAS ACTUALLY SUGGESTED ANY DRUGS SHOULD BE KEPT OFF THE MARKET.Jesse and LinB -
Like I said, I've dealt with this from a much more negative place. When my dad was 'going' he'd still drive (I tried to get my Mom to get his license pulled) and then couldn't find his way home. I cannot count the number of times we'd be driving the back country roads trying to find him. I've experienced burning food because he forgot to put water in the pan with the hot dogs. I know the scary aspects of this disease. But my father was a very opinionated, angry person and in a lot of ways, sadly, the progression was kind of a blessing. And if you know how hard it is to say that, you'd understand what I'm talking about.
I'm not against anything that helps us. But I (and other APer's) wonder about the price we personally pay for these meds. If somebody is old and their life is just about over; then I say, go for it. But for us...I worry. What are we...an average of late 30's, early 40's? It's different on the lymphoma issue. Think about it...we can do chemo. But for this...there is nothing else.
So...mycoplasma or body attacking itself...the question becomes...is it worth it at our relative young ages to take this risk. LinB says yes. But if we extroplate our experiences with MOST meds, eventually the body either overcomes the med or the disease overwhelms the med. How do we know we're not pushing ourselves into some sort of early dementia. Trust me - I've seen it up front and personal and I don't want to go there.
And it's not like anybody is tracking us. I WISH some government agency would track us. The only way we're going to get an idea of what happens long term is people like LinB and others who report a lessening of fatigue and fog to post later if it comes back worse when, and if, the med stops working.
Pip
Pip, I understand what you're saying and why you're saying it.
I don't have any options left except bio. I'm thankful that there is another option for me. I would hate to think that there were only firstline drugs and nothing beyond that. I'd feel the same if I were 35 years old. I've never spent my life worrying about what's going to happen 25 years from now (except for retirement) I'll take my chances. The last 2 months have been incredible. I couldn't travel to our home in Mexico this year due to complications and RA/PA, but you can bet we'll be packed and on the road in October if I'm still in remission. Remember, this is my first remission in 10 years. This is just my personal feelings about being involved in a crap shoot. Call me self-centered, but I'm not going to worry about the long term, future side effects that haven't been documented; I worry enough about all of the documented side effects. None of us know for sure how we're going to react to any medications. It's all unclear.
Out of curiousity if AP fails you and damage begins, what will be your med choice? I'm sure you must have given it some thought. I think we all have thought about our next step if our meds fail. Will you start another dmard and a biologic? None of us know for how long our meds will continue to work. I'd love to have a crystal ball to help make the decisions about meds, it wouldn't be much different than what we have now. Lindy
Damn tootin!
And I wish I could think about the future. I never have until this PRA thing. Retirement planning - girl, you're way ahead of me.
OK...here's my plan. I think I had the possibility of AP failure when I forgot those damn probiotics. From posts on the RB, the first chance of failure is in the 12 to 18 month range after starting AP. Most of those are gut related...but I think one girl I know is in the rare few of the Mino kills off some of the myco's but another strain gets stronger. Usually it's something that needs something in the penicillian family. I think I may have had that start to happen to me around October when my strep titres went up and my AP doc added in Zith. So...thru luck (and some stupidity) I got past the first fail point.
The next fail point comes around year 6 or 7. I should be OK because one of the MD's noticed a percentage of patients failed around that time. He devised a plan of rotating antibiotics to get around the myco's morphing. I intend to know that stuff inside and out by then. :-)
So...in theory...I can go 25+ years like this.
But...we know the body and the Cell Wall Deficient Bacteria both want to do their own thing. I already know I have 'gut issues' and that to me spells long term trouble. I've been working on the healing the gut...but blew it totally over the Holidays. I suppose that if things went wrong, I'd be mighty interested in radically changing my diet. I know I should now...but when we're not in pain we do a lot of stuff we know we shouldn't do. Part of me screams 'deal with this NOW' and the other part of me says 'relax, you have 25+ years'. Which is really dumb with these diseases.
I think if everything else failed I'd do the MP even with my reservations. Heck, I'm even tempted to do the MP now and be done with this whole thing (assuming they know what they're talking about).
But if you're asking would I consider a biologic - hell, yes! I've learned a lot on AI. I am not going back to that pain I was in EVER. My belief is I don't have to...but the body and those CWD bacteria may have other plans.
But, should everything fail...I'd do, how is it spelled, Rituximab? As far as I can tell, that's the one that kills off most of your white blood cells. Supposedly you can't do it unless you've failed other DMARD's but I figure that by the time I need it, it will be available for 'mild to moderate' as a 'aggressive approach' to stopping the disease. We've seen them push this stuff earlier and earlier...trust me, this will happen.
Because I can't discount all this stuff I've seen on the co-opted white blood cells. I really think that is what is happening. So...I'd welcome ANY research combining Minocycline and that biologic. But I think, in combo, it might 'cure' us...and we can't have that, can we?
Pip who knows she is sounding a bit bitter.
There has been a study done by Harvard, here's a synopsis. Will also be doing a longterm study. Granted everyone in the study was over 65 y.o. but that may have been a decision based on using individuals without having the risk of hormones skewing the results. Sometimes our decisions are based on the findings of these studies, that's all we have to help us make the tough decisions.
Aug. 31, 2006 -- Concerns that the newer rheumatoid arthritis drugs used to treat the sickest patients increase cancer risk aren't supported, according to a new study.
The findings should reassure patients who take Enbrel, Remicade, or Humira. All of these drugs are so-called biologics -- meaning they are derived from living organisms. They are known as necrosis factor (TNF)-blocking biologics.
"If there is a [cancer] risk, this study supports the conclusion that it is a small one," says researcher Soko Setoguchi, MD, DrPh, of Harvard Medical School's Brigham and Women's Hospital.
Rheumatoid arthritisarthritis patients do have a higher than normal risk for developing certain cancers, especially cancers known as lymphomas.
But it has been unclear if this elevated risk is due to the disease itself, or to the drugs used to treat it.
Studies examining the highly effective TNF-blocking drugs have been mixed. A widely-reported analysis by researchers from the Mayo Clinic published late last spring found a threefold increase in cancer risk among patients who took Remicade and Humira. That analysis didn't look at Enbrel.
The Mayo Clinic research weighed data from nine studies that compared biologic treatments to placebo.
In the newly published study, Setoguchi and colleagues compared the biologic drugs to the traditional rheumatoid arthritis drug, methotrexate.
Drugs like methotrexate are known as disease-modifying antirheumatic drugs. They slow down rheumatoid arthritis and improve quality of life for most people.
In the Harvard study, 1,152 patients took a TNF-blocking biologic, while 7,306 took methotrexate.
The patients were all 65 or older. They were identified through insurance databases in New Jersey, Pennsylvania, and British Columbia, Canada.
Even though the biologic users tended to have more severe rheumatoid arthritis than those who took methotrexate, the researchers found no significant difference in cancer risk between the two groups.
The biologic users were followed for an average of 2.6 years, compared to 4.2 years for patients taking methotrexate. Setoguchi tells WebMD the researchers will continue to follow study subjects.
"We will need longer follow-up with a larger number of patients to provide precise answers," she says. "Until then, this issue [cancer risk] should be part of the decision-making process for patients who consider taking these drugs."
Dallas rheumatologist John J. Cush, MD, tells WebMD that rather than increasing cancer risk, TNF-blocking drugs may actually lower it, as well as the risk for other diseases, because the drugs target inflammation.
Rheumatoid arthritis is a degenerative autoimmune disease caused by chronic inflammation. It is most commonly associated with the joints, but it can affect other areas of the body as well.
Meanwhile, inflammation has also been implicated as a possible cause of certain cancers, and even heart diseaseheart disease.
"A question that is just as important as 'What is the risk of this therapy?' is 'What is the risk of this disease?'" says Cush, chief of rheumatology and clinical immunology at Presbyterian Hospital, Dallas.
"Depending on how you view the studies, there is either no risk or a marginally increased risk of lymphoma associated with taking these drugs," he says. "But we know that they have a dramatic impact on quality of life for many rheumatoid arthritis patients who are disabled by the disease."
[QUOTE=buckeye]http://www.arthritis-research.org/
I know many of us already participate in their 2 yearly surveys..but for everyone else...This is your opportunity to help research. The NDB is a 25 year old research databank with over 10,000 participants. It is the largest collection of statistics for rheumatology. Researchers all over the world use the information gathered. For example right now they are working on a project to help the ACR standardize the definition of "remission in RA". Each year dozens of information will be produced from the NDB and associated researchers.
It is free. They do not sell your personal information. It is simly filling out a survey (by hand or by computer) every 6 months. They are gathering information all rheumatic diseases. Do your part..its painless
[/QUOTE]But Lin - it's that one specific biologic. That one wipes out white blood cells. The other supress TNF. We need both but if the beasties are hiding in the WBC - I have a LOT more incentive to drive them out of their existance. LOL
Pip
Dr. Trentham uses AP and biologics together, but I think I read somewhereI've read that too. But I've also read he doesn't tell his patients to use probiotics. So, to me, that's why you'd end up using both. We need those probiotics.
I guess we should just be greatful for the research. Again, as long as we get better, what does it matter HOW the Minocin works.
Pip
Maryblooms -
I've seen Buckeye's posts and I intend to sign up. I guess I meant the death certificate thing. Don't you think we should have the disease, the secondary issues cintributing to the death, (heart attack, secondary to RA) and maybe medicines the dead person was on at the time of death listed on the death certificate. Every time they try to figure stuff out from death records they have to guess. I don't want people guessing. If enough people died from Vioxx, don't you think they would have pulled it sooner - or at least had some idea that the med was causing the problems it was?
LinB -
Fabulous idea! If you start, post updates on the AP thread. I'd really like to know more coming from the biologic angle.
Pip
Mary, your church experience with your daughter brought tears to my eyes. What a sweetheart and what a nice side-effect of your illness, to see what a wonderful young lady your daughter has become.
Lin that article was great, I loved it and it's making me crazy. Clearly, we can't take as gospel ANYTHING we're being fed by the researchers because, as hard as they try, they still just don't know what's going on in so many areas. I can't tell you how many times I've adjusted my lifestyle because of some health alert that was splashed all over the media, only to hear them say a few years later, "Never mind!" while they do a complete about-face. Right now, I'm not totally convinced of the safety of either conventional treatments for AI disease, AP or anything else that comes down the pike. No one really knows. So I do like many of you, I just try to determine which treatment will do the least harm so I can function, and hope for the best in my future. I know what's going to happen in the short term, and I don't like it, so for me the choice is to treat now and hope I didn't really screw up by going with a therapy that's going to jeopardize my future.
Pip, the death certificate does merely state the COD of death. Researchers can certainly match up health records with death certificates. I know there have been many times that I wait to put the principle diagnosis on a chart until I have a copy of the autopsy report. The medical examiner rarely has much health information (except for communicable diseases as required by law) unless they request the records.