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FDA investigating the safety of Benicar
 Moderated by: Prof Trevor Marshall Page:  First Page Previous Page  1  2  3  4  5  6  7  ...  Next Page Last Page  
 

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Barney
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 Posted: Wed Jun 16th, 2010 16:30

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Hello Terri,

I am not Dr Marshall....but I am a diabetic (type 2) since 1995 at about the same time I lost my right kidney to sarc. I am intollerable to all diabetic meds including insulin. Symptoms w/meds include bending over double in pain, vomiting, diarreha, dizziness, etc. and also not lowering my glucose levels.

I have been on MP for 5.5 yrs and still struggling w/the diabetes but have gotten real diet serious, NO SUGAR, NO FLOUR and NO POTATOES. I have really had to get inventive w/recipes. I would be will to send you what I have gotten together. Lots of good stuff that I am not feeling deprived with.

It is hard to hold your temper at the diabetes when you see people eating cake and other foods that you would be able to eat. But...I have come up some really great eats that are MP ok.

Unless Mark can take no less than 4 Benicar per day, I would have him wait to start, IMHO.

I am doing 60mg Benicar @ 6hrs and feeling great and actually have energy. I am not suggesting this for anyone, but wanted you to know that I am doing great despite diabetes.

After lots of time of losing my posts, I usually do it on Microsoft Word and then cut and paste to the MP site.

HANG IN THERE, WE WILL MAKE IT!!!!BARNEY:D



____________________
Sarcoidosis, asthma, fibromyalga, diabetes, left kidney only. Benicar only since 9/2007. 11/11/12 had a heart attack, 1 81mg asprin, diabetes blamed for this. Heart is regenerating new veins. 2nd heart attack because of drug coated stents.
Prof Trevor Marshall
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 Posted: Wed Jun 16th, 2010 18:29

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Terri,
I would like a little more info. What is his 25-D level (measured with the ZRT test is good enough). Has he tried half a tablet morning and night? What does that do for him? Or even split the morning 20mg into two quarter-tablet 10mg chunks spaced q6h? That should give less immune activation, but better day-round organ protection. Still not perfect, but better than 40mg q24h.
 
The key piece of knowledge is that the receptors in sick people (not just the VDR) seem to break down more quickly (extra protease action, I suspect) and in really sick people dosing every 4 hours is necessary to keep palliation in place. Healthy people are fine q24h. So you can see that dosing interval is important...
 
 

Last edited on Wed Jun 16th, 2010 18:33 by Prof Trevor Marshall

Terri R.N.C.
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 Posted: Thu Jun 17th, 2010 07:12

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Hi Barney,

Thank you for the quick response.  I would love to have some of your recipes.  Mark needs to get off sugar.  I find candy wrappers in his car and if he grocery shops he will bring home cake and cookies.  I react to sugar so I have no problem avoiding it.  He needs to withdraw from it.  He is very cooperative and kind so I will show him your post and he will be receptive to it I'm sure.  You know how family is.  They have to hear it from someone else before they believe what they are being told.  Thanks so much.  My e-mail is tholzl@roadrunner.com if you prefer to use that.  God Bless and stay well!  Terri.



____________________
Osteoarthritis/DJD of Spine; severe C5,C6 w/osteoclats formation/Fibromyalgia/CFS/Calcium deposits breasts/Hypothyroid. MVP 125D 37 Ph1 July 27/08. Synthroid Ambien Percocet. Covered up,lowluxhomelighting, Noirs, low D intake.
Terri R.N.C.
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 Posted: Thu Jun 17th, 2010 07:22

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Hi Dr.Marshall,

Thank you for your quick response.  He has not had a 25-D test yet.  He will have to take work off in order to go get labs done so that is something we are going to have to set up.  I can get him to take 20mg in the am and 40mg in the pm.  He states that he likes the way Benicar makes him feel (very sleepy), so that is why he is willing to take it at night, but not during the day.  Also, does the fact that he works out in the hot sun all day affect the Benicar's reaction in the body?  I hate to see him have to wait to start the MP as he has Metabolic Syndrome that is only going to get worse.  Thank you for your time.  Terri.



____________________
Osteoarthritis/DJD of Spine; severe C5,C6 w/osteoclats formation/Fibromyalgia/CFS/Calcium deposits breasts/Hypothyroid. MVP 125D 37 Ph1 July 27/08. Synthroid Ambien Percocet. Covered up,lowluxhomelighting, Noirs, low D intake.
Prof Trevor Marshall
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 Posted: Thu Jun 17th, 2010 07:25

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Terri,
ZRT is a pin-prick test. Please search for ZRT using the search box above. The topic you want is "Now you can test your 25-D at home"
 

Joyful
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 Posted: Thu Jun 17th, 2010 22:00

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Here's the new link... http://mpkb.org/home/tests/homekit :)



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Terri R.N.C.
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 Posted: Fri Jun 18th, 2010 08:00

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Thank you.  I've got Mark awfully scared:(.  He has witnessed what I have gone through the last 22 months and he realizes what he is in for.  I think that I would chicken out if I was the one to go on MP after caring for someone who was really sick from it.  I barely left the house for the first year!  He is not going to be able to start the MP until Dec/Jan so should we test his hormone "D" at that time?  Be well everyone!:)



____________________
Osteoarthritis/DJD of Spine; severe C5,C6 w/osteoclats formation/Fibromyalgia/CFS/Calcium deposits breasts/Hypothyroid. MVP 125D 37 Ph1 July 27/08. Synthroid Ambien Percocet. Covered up,lowluxhomelighting, Noirs, low D intake.
Prof Trevor Marshall
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 Posted: Fri Jun 18th, 2010 08:06

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You can test it now and it will give you some idea of whether he may have difficulty lowering it into the therapeutic range. He will need to check it every few months once he starts therapy, until it gets reliably into the therapeutic range.
 

Terri R.N.C.
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 Posted: Fri Jun 18th, 2010 08:41

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Dr.Marshall,

Mark work's outside in the hot sun 5 days/week.  He follows low D diet along with me.  I'm thinking that after he completes this building project in Dec/Jan he can start MP and get out of the sun.  Right now he is very tan even with repeated application of sun screen.  Just his arms, face, and neck are exposed, but those areas are very tan.  Are you suggesting getting the "D" checked now to see where he stands with sun exposure and the use of Benicar?  He just increased the Benicar 2 days ago from 40mg qhs to 20mg qam and 40mg qhs.  He states that he does not feel well and he has developed diarrhea.  I think that I will get him an office visit with my MP doc and get labs done there as Mark has excellent health insurance.  He has to be very careful with his electrolytes as he is working in heat that is over 100* on many days.  He is 50 years old with Metabolic syndrome so no room for fooling around.  I will let you know what his labs come back as.  Should he go ahead and have 125 D checked as well?  Thanks so much for your time.  I know that you are a very busy (and brilliant) man;).  Terri



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Osteoarthritis/DJD of Spine; severe C5,C6 w/osteoclats formation/Fibromyalgia/CFS/Calcium deposits breasts/Hypothyroid. MVP 125D 37 Ph1 July 27/08. Synthroid Ambien Percocet. Covered up,lowluxhomelighting, Noirs, low D intake.
gart
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 Posted: Sun Jun 20th, 2010 15:59

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Dr Trevor Marshall wrote: My in-silico discovery that Temisartan turns off the VDR, directly opposed to Olmesartan turning it on, was confirmed by the study Bane posted in April (as well as our anecdotal experience from testing it):

Interaction of angiotensin receptor type 1 blockers with ATP-binding cassette transporters.


http://www.ncbi.nlm.nih.gov/pubmed/20222053


 Dr. Marshall.

Does it mean that Olmesartan  still safe to use?
Thank you. Gene



____________________
MP Feb'08-May2012 (break from March 2012 | Lyme | burning neuropathy entire body, muscle/joint pain,TMJ,blurring vision,noise sensitivity | 125D=51, 25D=40, April'11 Oct 2012-12.8ng/ml,Jan 2013-19ng/ml1.25D-73,JUl'13-1 Jul 2015 25D 29.2ng/ml
Prof Trevor Marshall
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 Posted: Sun Jun 20th, 2010 16:42

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Gene,
Good to hear from you again :)

Olmesartan is not only safe to use, it provides protection to your body's organs from the inflammatory cytokines.

Stay away from the other ARBs, however, they are not the same as Olmesartan...
 

positiveminds
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 Posted: Mon Jun 21st, 2010 01:34

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Since the FDA are investigating, presumably they could find that it is not safe or that more testing is needed before it can be used in an off-label manner, such as on the MP. Who is doing the studies that will convince bodies such as the FDA of Benicar's safety?

While this may be an opportunity, it could be cause for concern too. If the MP is taken away from me, so is my life.



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CFS/ME, IBS, Insomnia, Myalgia, Migraines, etc. Chronic for 6 years, going on for 16+. D last tested at 13ngml.
Prof Trevor Marshall
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 Posted: Mon Jun 21st, 2010 02:05

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Amy and I will be traveling to Washington DC to speak at a public hearing at the FDA on 29/30 June.  We are keeping our finger on the pulse. At this point there is no likelihood that FDA will do anything silly. Last year Olmesartan was a 1 Billion dollar market, worldwide, as were each of the other sartans. There would need to be problems much larger than have been reported before any of the sartans was withdrawn.

In any case, this Foundation has put in place contingency plans to guard against a withdrawal of Benicar from our members. I am not free to talk about them at the moment, but trust me, there is a very good reason we have been spending so much time with the FDA these past five years...

..Trevor..
 

k
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 Posted: Mon Jun 21st, 2010 02:48

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That's very good news.

Without the MP, my life too would be taken away.  And I'm very fond of it... having so recently got it back.  :)

Thanks always to you Dr Marshall, Amy and the rest of the team.



____________________
CFS menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1.Oct07 Ph2.Feb08 Ph3.Sept08 BeniOnly.Aug09 MinoRestart.Dec09 25D=50(Jul07)23(Oct07)13.2(Jan08)12.8(Oct08)10(Sept09)12.8(Jun10)12.4(May11)8.3(Apr12) 4.4(Jun13) <4(Nov14)
madhouse
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 Posted: Sat Jun 26th, 2010 15:07

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So I think I'll cut back to every 8hr dosing and start saving up on Benicar. What is the shelf life on it?

 



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RA 2 Years. IBS 15 years
Started MP 6/15/09 Now off all Meds and doing well.
Prof Trevor Marshall
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 Posted: Sat Jun 26th, 2010 15:22

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Shelf life of Olmesartan Medoxomil is not very good (a year or so). It is a very unstable molecule. I think there were some papers investigating this issue, maybe one of the members can help you track them down.

eClaire
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 Posted: Sat Jun 26th, 2010 16:51

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Thank you.  That is good to know.  This means, I will finish out my current stockpile, except for a couple month's worth before ordering some more.  I thought the shelf life would be similar to a lot of other meds.  Thanks again.



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Dec 2006, Olmesartan break Feb - April 2007, ME/Fibro/PTSD/MCS/Hypermobility (since childhood; disabled 2003); 25D summer 2012 <4 (meaning unable to detect)
positiveminds
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 Posted: Sun Jun 27th, 2010 07:13

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So are you recommending we stock-pile until we know the outcome of this? Or reduce our doses so it lasts longer? I have to say i'm very concerned. While i'm sure you and Amy have plenty to say at the public hearing, i'd imagine a body such as the FDA will be more impressed by clinical studies, and there is enough motivation and money out there to produce such studies.

From where i'm sitting, this doesn't look good for the "move to mainstream" which is the foundation's primary focus right now, right? I'm not really sure what your team is doing to promote this move to mainstream, but the unfortunate fact is the scientific world needs clinical studies, so why not produce a few and give it to them? What's happening with the West China study? Is it progressing? Are there any problems? We haven't heard much about that in a long time.

 



____________________
CFS/ME, IBS, Insomnia, Myalgia, Migraines, etc. Chronic for 6 years, going on for 16+. D last tested at 13ngml.
Grateful Survivor
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 Posted: Sun Jun 27th, 2010 07:49

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I suggest we all keep cool heads, maintain an even more ample supply than we already do, use it in date order, and trust that everything appropriate is being done--which I am sure it is.

I realize this situation may make things more difficult for many of us. We probably need to arm ourselves with the facts about these studies--not Benicar; not round-the-clock dosing; etc.--before we next see our docs. And we may experience more supply difficulties for awhile. I'm not minimizing any of this.

I just think we need to keep our cool and view this as what it is: a potential problem requiring problem-solving skills. We are collectively and individually very good at problem-solving.



____________________
MP Feb'07 (no breaks)| Lyme '98, Arrhythmia-Tachy-Vertigo '06, Appendicitis-Colon-Resection '89, Bipolar '83, Meningitis '47 | my progress | last 25D= 9ng/mL Aug'16
Bane
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 Posted: Sun Jun 27th, 2010 09:02

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Freddie Ash wrote: HI DR MARSHALL

This is Fred in WV.  On you post about about the "telmesartan with digoxin", I am on the Benicar and Digoxin, would this have any effect on me and my heart.  I have wondered if I should stop the Digoxin with the Marshall Protocol. 

When I started the MP the doctor took me off 2 other heart pills but keep me on the Digoxin.  I think the Digoxin was to make the heart muscle stronger?? This was because the ejection fraction was on the low side. I have been wondering about if I should stop the Digoxion for some time now.

Remember, we are all in this together and I am pulling for us.

Your friend in Sarcoidosis
Freddie

Popular Heart Drug May Be Unsafe for Some Kidney Patients

http://www.sciencedaily.com/releases/2010/06/100624183009.htm

The risk of death was 28 percent higher for dialysis patients taking digoxin, after adjustment for other factors. The increase in risk was greater for patients with higher levels of digoxin in their blood and in patients who had lower serum potassium levels, which is a well-known factor that contributes to digoxin toxicity.


 


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