Shirley writes:
"Yesterday I bought two bottles of LifeExtension
> Super Curcumin with Bioperine. (800 mg. of curcumin and 5 mg. of Bioperine for
> each capsule. Before that I was taking Doctor's Bsst, 500mg. of curcumin and
> 3 mg. of bioperine per capsule. The Doctors Best had no warning but this
> bottle does. It says,"Do not take more than 15mg. of Bioperine per day. Do
> not use Bioperine without physician supervision as it may increase blood
> levels of prescription medicines. Do not take if you have a bilary tract
> obstruction."
> Question: Is this something to be concerned about if we take the
> recommended 8 grams of curcumin per day?"
Thank you, David, for posting my comment for me about the Bioperine. Since writing that I spoke with my own dr. He advised me not to take the curcumin with the Bioperine and to exchange it for curcumin without the Bioperine. I especially address this to Margeret who, I believe, has been taking 8 g. daily of Curcumin with Bioperine. Has she heard of such warning? I do remember that one person who posted something about Curcumin said he took it without the Bioperine. I don't remember who it was. Now I have to hunt up a brand without Bioperine and without the silica that Alex warned us about. Shirley in NYC
Shirley,
I was the one that took curcumin without Bioprene (Jarrow Brand). I took it (one capsule-500 mg)for almost three years in combination with 150 mg thalidomide. There was signifant synergy with this combination at these dosages.
Terry
Thank you, Shirley. Yes, I WAS taking eight grams of curcumin with bioperine, but I am currently testing curcumin capsules without it, to see what happens. Next blood tests in September. What I can report so far is that I have had a total of four mornings since June 28 (when this bioperine-less experiment began) of being awakened by PN. Usually nothing short of a cat pouncing on my head will wake me up (to give you an idea that the PN was rather intense). Apart from that, and being a bit tired, I haven't noticed any change since the switch. And these two things could be totally unrelated (probably are).
I am curious, Shirley: did your doctor tell you WHY you should avoid bioperine? I have read a few things about piperine (hence my experiment), but would like to know what other list members know on this topic. One thing, if you (generic you) are taking caps with bioperine, I suggest you add no pepper to your food. While I was taking the caps with bioperine (this past fall and winter), I avoided pepper.
About the 15 mg warning you mention. I wouldn't be too concerned about that, unless you are on chemo, in which case you probably don't want the chemo drugs to be in your bloodstream for more than necessary. I can't think of anything else at the moment, except that I had no strange side effects from such a high amount of piperine, and I took these caps for several months, although not quite one year. Margaret. Florence, Italy
Margaret, correct me if I am wrong, but it seems to me, that Dr. Agr....(don't remember exact name, you know who am I talking about) recommended the Curcumin with Bioperine. Do you recall that? He should be the one with most knowledge about it, he is doing the trial. Should we ask him about it again? I have been taking it as adviced - 8000 mg a day with Bioperine since my transplant (Febr. 5th) and so far I am in remission and feeling good except the horrible shingles that attacked about 3-4 weeks ago and still persit.
Paul
The curcumin-MM trial at MD Anderson is testing both types of curcumin, with and without bioperine. I don't remember Prof. Aggarwal ever telling me to take the one with bioperine, but it is also true that I don't remember asking him which was better. I could be wrong, but that's my recollection. You could ask him, why not? And please report back to the group. One thing: for months I took curcumin powder mixed with coconut milk, and did well on that concoction. I have been taking curcumin capsules with bioperine only since last fall. I will be testing this bioperine-less experiment in late August, when we return from our summer holiday. And I will report my results on my blog for sure. Take care, everyone, Margaret, Florence, Italy
I have been told by numerous professionals that curcumin without bioprene will not assimilate and that it would be a waste of money to take it without. I would love to hear what the docs running the trials have to say about this. Please keep us posted.
Thanks, Mary Jo
Mary Jo
MD Anderson is running a trial with Sabinsa curcumin with and without Bioprene. They are going from 2-15 grams/day. These are all newly diagnosed high bioburden MM patients. They have not completed the 15 gram patients yet (the last contact I had about 4 months ago), however, I understand they obtained stabilization not reduction in M-spike starting at 2 grams and as the dose was increased they got a larger % of patients responding. I believe the whole study is about 35 patients. My understanding is they have not seen any statistically signifiance of the Bioprene. This is not formally transmitted information, just what I gained by talking to someone who was involved in the clinical in the beginning.
Terry
I'm glad I brought up this issue of the Bioprene. Perhaps together we'll arrive at some enlightened concensus. I'll explain what happened: I was blissfully following the regimen suggested by Dr. A. (yes, I know who you mean). I purchased Dr.'s Best Curcumin with 3 mg. of Bioprene in each capsule. I started slowly on June 4, going to 3 grams in a few days. I upped it to 4 grams by June 15 and to 5 grams by June 27. There were no warnings and no limits stated on the bottle with regard either the curcumin or the Bioprene, other than giving a recommended dosage of 1 to 3 capsules per day. I got to 6 grams (12 capsules) on July 7. This would mean that I was getting 12X3 or 36 mg. of Biooprene per day. However, at this point, I ran out of curcumin and went to the VitaminShoppe in Manhattan. Lo and behold, they didn't have the Doctor's Best in stock, only the LifeExtenseion brand, which came in 800 mg. capsules with 5 mg. of Bioprene in each capsule. I read everything on the bottle and now, what did it say? "CAUTION: Do not take more 15 mg. of Bioprene per day. Do not use Bioprene without physician supervision since it may increase blood levels of prescription medications. Do not take if you have a biliary tract obstruction.....do not take with anticancer drugs." At this point, I wrote to the B/M Listserv, then called my dr. to ask his advice. He had, prior to this, been entirely approving of my taking curcumin. However, he now advised that I get the curcumin without the Bioprene (I read him the quote.). I believe he was being cautious because of the warning on the bottle. However, what I did do was to go to my local health food store and there purchased Nature's Way brand Turmeric, 450 mg. of curcuminoids and 50 mg. of turmeric root. I decided to be on the safe side, so am taking 3 capsules of the LifeExtension stuff with the Bioprene, (giving me 15 mg of Bioprene and taking 11 tablets of the Nature's Way Turmeric (which says it's 95% curcuminoids). I plan to call the LifeExtension information number (1-800-544-4440) to ask the basis for their strong "Caution" against taking more than the 15 mg. per day. I hope with this and all your other information we might get to see some light on this thorny spicy subject.
Shirley in NYC
In fact, Shirley, you are doing what I was thinking of doing eventually. That is, mixing the two forms of curcumin capsules. Some with and some without the piperine. As for taking it with meals, unless you have gastro problems, I would say no. I have been taking curcumin for a year and a half on an empty stomach, and that's what I have read to be the best way for it to be absorbed. Not everyone can do that, of course. Sorry, my English is failing me today. My Italian sometimes tries to take over my brain. But I hope the concepts are clear. What Deborah reports is also interesting. I think there are ways to make curcumin bioavailable other than piperine. I am taking oil capsules and quercetin with my curcumin, and when I have organic grapefruit in the house, I drink grapefruit juice. By the way, that would not be a good idea for those of us doing chemo. But for the others, why not? It makes me so mad that there seems to be such a simple solution to this bioavailable problem (just mix curcumin with an oil or with bromelain etc., and put it inside a capsule!) but nobody is coming up with a solution, not quickly enough for moi, anyway. As for yoghurt, I say yes, but the kind with no sugar. I tried mixing curcumin powder with organic yoghurt, which did have a certain sugar percentage, and only remained stable on that. I suspect it could have been the sugar content. Could be wrong.
Margaret, Florence, Italy.
According to Uma Aggarwal, both she and her husband (Dr. Aggarwal)take "their" brand which is called NatXtra Curcumin. They believe there are many bioavailability enhancers, such as yogurt, coconut, olive oil, etc. I spoke to her last week regarding the gastrointestinal problems that we were having with the Ageless Cures brand (which contains bioperine). She commented that she thought the bioperine could be the "culprit".
She said, she takes curcumin with meals. She believes that 4-8 grams is enough to take if you have cancer. I have no idea if this is what her husband is in agreement with this.
There is research being done at this time to see if chronic amounts of bioperine (over 5mg/day) could be toxic or damaging to the liver or other organs.
Deborah
By the way, I don't think 4 grams is enough for some folks. My IgG counts went UP on 4 grams, which I took by mistake (my mistake) back in the fall. I was on 4 grams of curcumin with bioperine for 2 months, and couldn't believe my eyes when I got my blood test results. Then I realized that I had been taking a half dose. Duh. I suppose it depends on whether or not you have an aggressive form of MM. 4 grams clearly don't work hard enough for me, I need the full 8 grams. But I also know folks with MGUS who are stable on less than that. Just thought I would point that out. Oh, and the reason I am testing bioperine-less capsules (they are still the C3 Complex Sabinsa kind) is that I also have read that too much piperine COULD BE toxic, though nothing too serious. Ok, I will shut up now! ;-) Margaret, Florence, Italy
I sent Dr. Aggarwal a question about the bioavailabity of curcumin, and I also wanted to know about is effect on sarcoidosis. All he had to say was "Curcumin has no availability issues". So where did we all come up with this idea? I thought he was the world's leading expert on curcumin.
Please help me out here.
Thanks.
Alex Maas
a.maas@cox.net
They have tested curcumin up to 13 grams in adults and can find only a trace of it in the blood starting at 11 grams. The answer is it is working in some other way, the intestinal tract, maybe in the kidneys. If it is lowering your M-spike that is all that counts in my opinion.
Terry
Thank you, Terry. Yes, I now remember that it was you who had been taking the curcumin without the bioprene. I do remember seeing the Jarrow brand on the shelf at the VitaminShoppe. Did your doctor recommend taking the dosage of only one 500 mg curcumin while you were on thalidomide? I have been feeling uncertain what to do as I'll be starting taking 10 mg. of Revlimid after next week. Revlimid is a variaton of thalidomide so there should be some relationship. I'll be taking 10 mg. of dex as well. My dr. is very supportive of my taking the curcumin, but I'm not sure if he has been following all of the latest studies. I will value any light you can shed on this, Shirley
Shirley,
May I suggest you start with the 10 mg Revlimid with the 10 mg Dex for a month just to see how you respond without the curcumin. It will allow you to determine whether the curcumin is actually helping when you do add it in. I am assuming you will be on Revlimid for 21 days and then off Revlimid for 7 days off. I am also assuming you will be on the 10 mg Dex once/week. I do recommend you ask for a prescription for Previcid 30 mg to avaoid any heartburn from the Dex. I experienced belching and hickcups from the Dex which until I started the Previcid generated a pretty nasty case of heartburn especially at night. To minimize any additional meds than what was necessary, I started the Previcid the day before taking the Dex and continued through two days after taking the Dex. The heartburn has pretty much totally resolved itself.
I know for a personal fact (I tried it on myself) that curcumin and Revlimid work in synergy. I am in the process of adding it in combination with Dex. I am currently on 15 mg Revlimid for 21 days and 20 mg Dex once/week. I have recently added 500 mg curcumin without Bioprene starting on the third day following the Dex and continuing through the day before taking the next dose of Dex. I am not sure if this is necessary but I did find two articles that found that curcumin worked counter to Dex. At some point I will evaluate Dex and curcumin simultaneously but this seemed the safest way to introduce curcumin for now. The reason I spaced the Dex and curcumin out this way is Dex has a half life of 24 hours (every 24 hours there is half as much Dex in your body), so by the third day there is only 5 mg left in my body (I started at 20 mg). In your case, I believe you could start the curcumin on the second day following the Dex since you are only starting at 10 mg Dex. I get my blood results back on Thursday so I will let you know about the outcome.
Terry
terry any thoughts on adding curcumin to velcade?
just started it yesterday,no dex.
joe
Joe,
I have no experienece with curcumin and Velcade. I would suggest starting with the Velcade alone for a month and see how you respond. Again, if and when you add curcumin, I would NOT use curcumin with Bioprene. Velcade works by shutting off the cells abaility to discharge waste proteins. Some of those toxins might be discharged through the liver and the Bioprene could increase the toxicity. If you do add curcumin without Bioprene I would suggest you start with the lowest dose, 500 mg, for only two weeks prior to your blood draw and then go off of it until you get the results. Terry
"I did find two articles that found that curcumin worked counter to Dex."
Terry, can you point me toward those articles? Thanks.
Lisa,
I will try to find them. Prior to joining this chat group, I was the only one interested, so I read assimulated and planned a strategy. Keeping the articles was not included in the strategy. But, I will try to retrace my steps.
Terry
Shirley,
I forgot to mention that both thalidomide and Revlimid go through the liver. I don't think it would be wise to take ANY curcumin that contains Bioprene since you would not know the added toxicity. Also, in case your oncologist did not mention it, WHENEVER you are taking both Revlimid and dexamethasone, be sure to take a daily low dose aspirin because of the higher risk of blood clots. Don't miss a single day of the low dose aspirin.
Terry
Terry-
Thal and dex certainly increase the risk of blood clots- in fact, blood clot risk seems to be the most widely discussed issue of the lists- and reading about the concern makes me want to post the anti-clotting effects of fish oil, nattokinase, enzymes and gingko (curcumin too?) I am not saying to not take aspirin, I am saying to consider these other supplements-
David
David,
With the Revlimid in particular, platelets are surpressed-in some patients dramatically I think it needs to be a balancing act between avoiding the clots and excessive bruising or even worse. I have chosen a low dose aspirin because it is being used on many MM patients around the country and centers have not reported excess deaths-yet. I hope I haven chosen wisely. I know from the reports that are out (Mayo, etc), not taking anything to reduce the risk of clotting while taking Revlimid and dexamethasone together is a big mistake.
Terry
I just spoke with a Dr. Hall at LifeExtension. I asked two questions: 1) Why the dosage limitation to 15 mg. per day of Bioperine? 2) What is meant by "Bioperine may increase the blood levels of prescription medications?" These are hia answers as I understood them. 1) The 15 mg. limitation is a conservative limit. Research they did found that levels at about 50 mg. affected testosterone levels adversely. They decided to be consevative and set the safe levels at 15 mg. per day. 2) All medications are regulated by the liver. Bioperine interferes with this process. Therefore, the medication levels in the blood may be too high, as the prescription medication dosage depends on the liver regulating it properly. As to the advice not to take curcumin when taking any cancer medication: When I pointed out the research that was done on Eevlimid and thalidolide showing that they worked OK with curcumin,, he was unaware of this, but advised that two hours should elapse after taking any medication before taking curcumin with bioperine (and probably even without). If anyone has questions the phone number of LifeExtension is 1-800- 544-4440. Be advised, however, that they ask you questions about where you bought their product, they want your address, and will send you their catalogs, flyers, etc,(which I'm sure both we and the environment all need desperately.) :)
Shirley
Excellent bit of sleuthing, Sherlock-Shirley! In fact, I remember reading something about 50 mg of piperine a day as the maximum tolerated dose, but of course didn't keep the reference and never found it again. Thanks for reporting back to us. Margaret, a very hot day in Florence, Italy
I have always understood that for curcumin to have any effect at all, it must be taken at least one hour outside of meals without bioperine. Now a place I have ordered it from without bioperine, is telling me all the studies they have read to take it with meals for better absoprtion and that all studies have done without bioperine.
I am totally confused now, as I am not sure where I actually got this information. I have looked at Margaret's blogs and asked Dr. Aggarwal's certain questions,but now I am not even sure I got this information from him, but I clearly remember a patient in one of the phase 1 clinical study told me although patients were supposed to take it this way, few actually did. When I emailed him about it, he
really did not even respond, as it was not even a valid concern.
Dr. Berenson told me the problem with curcumin is it takes so much to actually do anything.
Some of you have posted that it the bioperine may interfere with the Velcade, so I will refrain from taking any bioperine while on Velcade. It also changes the speed at which other drugs get into your system, which may be good or bad.
The interesting thing to me is that it may be there are plenty of medications or other supplements that might work better if they had been used with bioperine. Sometimes it seems an enormous amount of money is spend on drugs that are actually quite effective on mice,
but are not abssorbed by humans in the same manner. It makes me wonder what would have happened if they had used bioperine to make them get absorbed better. Of course, they are often given as infusible drugs, which makes me wonder if you could just infuse large amounts of curcumin or something. I have no idea.
I am very happy as Saturday we will be meeting Susan LeClair, who is not a myeloma patient, but very helpful to everyone with technical questions on the acor list. She is here on a business meeting, but we have found a time we can take her to lunch. As my better half is actually from that area and went to school in Massachusetts, they will have lots to talk about. Maybe I will not even get a word in at all. My better half just went to this meeting today also, but I actually did not know this until tonight. It is a meeting for clinical chemists, and she works for a company that is involved in making such products. I am delighted to be able to return something to someone who has done so much for so little on the acor list. She almost dropped her interest in it because of one particularly obnoxious patient on the list who wants to be the "queen be" on the the list, as she is a nurse. I have no particular ego about my knowledge about myeloma, as certainly I do not understand the chemistry at all. I guess that makes me more open-minded than most or something.
I doubt that she has any interest in this particularl group at all, but she went to great pains to explain to me about IgG Lambda light chain patients,as another doctor on the acor list questioned this subtyping, but this is what I was told by my doctor.
Thanks and keep up the discussion about curcumin. That particular company told me about what they had read on the grouppekurosawa site.
If you do not know, that man claims to have a PhD, but he lives in a trailer park with his mother for whom he depends on an income and is not involved in any type of research activity. He pastes and clips things from the internet and says he has the cure for cancer. Yeah right. And he also went to jail for divulging medical veterinary secrets and profiting from them. Not a man I would trust as for as information at all, although you can always look at the many articles that he posts about.
Thanks.
Alex Maas
a.maas@cox.net
"that man claims to have a PhD, but he lives in a trailer park with his mother for whom he depends on an income and is not involved in any type of research activity. He pastes and clips things from the internet and says he has the cure for cancer. Yeah right. And he also went to jail for divulging medical veterinary secrets and profiting from them."
Alex, which man? is this a reference to the groukurowawa site?
Yet, Steve Martin who is owner of this site and claims to have a PhD in immunology. Whether this is true or not, I think I could truly do a better job of cutting pasting different government reports and publish a "cure of cancer" as he does. He talks about one woman who was cured of mm by following his advice, but the actual content of the letter said nothing like this at all.
Alex Maas
a.maas@cox.net
I sent another letter to Dr. Aggarwal since I found what he said illogical. Since you have to take GREAT amounts of curcumin to do anything compared to very small amounts of many drugs, there obviously is a bioavailabity problem, although he denies it. This is confusing to me, as are the reports of it doing nothing without bioperine. I really do not know what to make of these conflicting reports. If anyone else has any other questions for Dr. Aggwarwal, I would be glad to ask them for you.
Thanks.
Alex Maas
a.maas@cox.net
Alex, please ask Dr. Aggarwal to elaborate on his meaning of, "There is no availability issue with curcumin." Does this mean that any brand from a reliable manufacturer is OK? What about his own brand? (I understand there is one.) PLease ask him as well if body weight might have anything to do with the amount of curcumin needed to have an effect. (Will a small person like me , 115 lbs, need less than a 200 lb. man.) Thank you.
Shirley in NYC
I did not have time to call Dr. Aggarwal yesterday, but his wife sent me a nice email, which I will repost here.
"Dear Mr. Alex,
My husband Dr. Aggarwal is expert on Curcumin. He can
tell you all about different effects and how to best
take it. >From my experience of different people taking it, you
have to do what suits you best. Some people prefer it
with food others are taking it without it. You can try
different methods and see what suits you the best. The
product I am distributing does not have bioprene in
it. It still works very well. My web sight is
www.indogen.net
Since the results of Clinic trial are going to take
very long to come out, and since Curcumin is non toxic
and is a natural substance, we can do our own
experiments with different methods of taking it and
stick with what suits us the best.
I hope this helps.
Good luck
Uma Aggarwal
*********************************
I am not sure about the other comments it not being found in the blood. It can reduce platelet counts at 500 mg per day, much less than the giant amounts that we are taking. In fact, I tried to get my dosages of Velcade and Doxil increased, but my platelet counts had fallen too low. Velcade also lowers platelet counts, but I noticed the last time this happened, I went off the curcumin and my platelet counts got right back up. So I will not take any more curcumin until Tuesday and then see what has happened. My point is that something must be going on. I am not a scientist, but certainly Dr. Aggarwal's long PDF shows that curcumin does lots of great things. No doubt in my mind it is antiinflammatory. I had gotten rid of my lifelong acne
inflmmation, at 48. My so, who is 14, is still on Accutane, and I think it has been almost a year now. I am hoping he can use curcumin instead. His mother has sarcodoisis, which is a rare disease of the lung, and she has inflammation. I am also hoping it may be able to help her, as it did an mm spouse who it cleared up entirely of asthma.
Of course, I will have to see if the kind I just ordered, with nothing but magnesium stereate (sp?) to hold it together will cause the diarrhea problem or not in high doses, or whether to take it in yogurt of fats or anything like this can take care of it. I can deal with this a lot better than mm side effects, but for those without mm
diarrhea might be too much to take. (Sorry to be so graphic, here)
Alex Maas
a.maas@cox.net
Alex-
"I sent another letter to Dr. Aggarwal since I found what he said illogical. Since you have to take GREAT amounts of curcumin to do anything compared to very small amounts of many drugs, there obviously is a bioavailabity problem, although he denies it. This is confusing to me, as are the reports of it doing nothing without bioperine. I really do not know what to make of these conflicting reports. If anyone else has any other questions for Dr. Aggwarwal, I would be glad to ask them for you. Thanks. Alex Maas a.maas@cox.net"
Many of us seem to be confused about curcumin supplementation- how it is absorbed, etc. We have been reading about bioprene, coconut oil, fish oil, full stomach, empty stomach, etc. for some time. Since Dr. A seems to be the authority on curcumin and mm, he needs to clarify this issue for us. Thanks.
David
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