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#21
feibelman

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That's an interesting study and you may very well be right, but when do they expect that new drug invented by the NIH to be released? I lost patience and with the lack of any negative side-effects so far, I am starting at the 480mg/day level today. One 240mg AM and one 240mg PM. Hopefully, I can keep that dosage going. Who knows, with a little luck and the two of us working together we may just beat everyone to the cure (or better treatment) for type 1. Wouldn't that be incredible?

 

BTW - I have an apt with my endo on Monday morning. I'm going to tell him what I'm doing and ask for his help.

 

Years ago when a product called Byetta first received FDA approval for treatment of Type 2 Diabetes I read somewhere that there was some thought that it had some regenerative effects on Beta cells. This is one I never tried and haven't heard of any studies.



#22
Hoping4Cure

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I looked up Byetta, that's a 2x / day version of the glucagon suppressor drug that I used before, Victoza (which is 1 injection per day). I can confirm first hand after taking it for six months that my blood sugars did dramatically improve, and I also lost 20 pounds, but eventually the nausea and constant low-grade headaches made me quit. I was considering going back on it earlier this year when I read yet another study with type 1s using victoza, that it helped in 3 / 5 main type 1-specific effects. 

 

Those studies showed that going to 1.8 mg / day of victoza didn't benefit more than 1.2, so the sweet spot to aim for is 1.2. Usually you start at 0.6 then up it in 0.6 increments until you reach max 1.8, but if I do go back on it (which now I'm thinking of doing), I'll probably start at 0.6 and keep that for a long while, and increase in 0.1 increments up to 1.2 / day max. The first night you take it, and the next day, expect to throw up violently. And barely eat. But when you stabilize you will find that you can sit through a meal at a restaurant and not get restless leg syndrome or irritable. I remember feeling and saying like I felt like a normal human being again, but after a while of taking it I just couldn't manage the nasty side effects. Maybe if I just keep these doses low I can get the benefits without making my life miserable. Don't get me wrong, reducing my insulin intake by 1/2 and losing a bunch of weight is great, but being lethargic and having headaches all the time is a tough thing to swallow. I don't think the headaches lasted too long at 0.6mg / day, so maybe finding a sweet spot like 0.9, increased gradually, could be the best solution...

 

I also read about a 1/week version of that gila monster hormone that I'd like to try. Ask your GP about it, if he knows, try that instead maybe. Who knows, maybe the headaches and nausea are lessened with the weekly injection instead of the daily one. But the studies for Victoza for type 1s is no joke, and no pie in the sky, seriously. It's worth trying regardless of the beta cell regeneration aspect of it. It just might be that 480 verapamil per day plus 1.2 victoza + lantus covering most of your daily insulin needs instead of the ups and downs of short-acting insulin could all work together in a synergistic effect to give our pancreases the right kind of stress-free stability it needs to get its engines running. I'm taking 8 ibuprofens per day to reduce inflammation which some type 1 cure studies are using. I tried the vitamin C supplement route too but I gave up a long time ago.

 

Looks like I'll be getting my liraglutide (victoza) script renewed from my main GP, who saw the graphs of my blood sugars and was totally on board me sticking to it. The results spoke for themselves. Now that you mention the beta cell regeneration aspect of it, I'm definitely leaning towards getting back on. Only thing is, how to avoid the headaches. So if you can find out if you can get the 1/week variant of that drug, that would be a good thing to try IMO. If not, try Victoza, but by all means, don't go above 1.2mg / day if you want to be productive. I had such a hard time concentrating at work with all those headaches, I was popping tylenols and advils like crazy. With 0.6 per day the headaches were much more manageagle and eventually subsided, though for a few hours per day you will feel like your head's in a vice and feel dizzy and nautious. I recommend ramping it up really slowly, that's what I'm gonna do. Who knows, maybe Byetta gives less headaches than Victoza. Something to compare. But I'm at a point right now in my life with so much stuff on my plate that I can't really lose productivity through lethargy and general zombie-like that that comes with Victoza. For a few hours per day at least, I remember feeling pretty awful. Thing is, I kept to it for six months because the benefits outweighed the negatives. The rest of the day, when the side effects has subsided, I felt like I felt before being diabetic. Like I could sit down and be calm and have a meal or just live without being anxious or irritable.



#23
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Found it, it's called Bydureon and it's like Byetta but 1/week, and 1/2 reported cases of nausea than Victoza (though less weight loss):

 

http://www.bydureon.com/

 

I'm not sure if it's approved available yet in Canada, in which case I'll just have to stick with Victoza. 

 

I wonder if it has less headaches too due to 1/week or being a slightly different molecule. Be careful though, pancreatitis is no joke! I didn't get that on 1.8 victoza per day, but apparently this drug can make your pancreas grow up to 50% bigger! I wonder if that translates to beta cell regeneration. If it does, then here we have it, the ideal drug to pair with verapamil.



#24
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Eeek, some conflicting website reports on whether Byette does or does not in fact regenerate beta cells:

 

http://diabetesupdate.blogspot.ca/2009/05/new-study-proves-conclusively-byetta.html

 

On the other hand, this Doctor's research shows that GLP-1 does help regenerate beta cells:

 

http://www.med.upenn.edu/apps/faculty/index.php/g20001861/p3556

 

I've read a few that stated there was no evidence that Byetta actually does that, contrary to the manufacturer's claims. In any case, I'm going to try Victoza or Bydureon + verapamil myself. Victoza did help with my diabetes management a lot and if I have to get off it due to headaches again, so be it. At least I'll have lost a bunch of weight and improved my sugars for a while.



#25
feibelman

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Eeek, some conflicting website reports on whether Byette does or does not in fact regenerate beta cells:

 

http://diabetesupdat...ely-byetta.html

 

On the other hand, this Doctor's research shows that GLP-1 does help regenerate beta cells:

 

http://www.med.upenn...g20001861/p3556

 

I've read a few that stated there was no evidence that Byetta actually does that, contrary to the manufacturer's claims. In any case, I'm going to try Victoza or Bydureon + verapamil myself. Victoza did help with my diabetes management a lot and if I have to get off it due to headaches again, so be it. At least I'll have lost a bunch of weight and improved my sugars for a while.

Thanks. I did a lot of research on Byetta years ago and I do think it has regenerative abilities. The first article claims that Beta cell function goes back to pre-Byetta levels after being off the drug for 1 year. That makes sense to me because it seems whatever is degrading the Beta function wins the battle. I think the risk of pancreatitus is very, very low. It may even be debatable whether or not Byetta even increases that risk or not over those not on the drug. I'm going to give Verapamil alone at least 3 months to see what it does and then I may consider adding Bydureon. However, I think it may be safer to first try Byetta. If you have a reaction to Bydureon, it is in your system for a week. Then, on the other hand, Bydureon is "extended release" so it may have fewer side effects with a much lower peak than Byetta. I think Bydureon is approved in the US.



#26
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My endo didn't really know a lot about Verapamil, said my Beta cells were dead, said studies and trials pre-clinical phases can be manipulated and said 1,000's of type 1 diabetics are on verapamil. He said the "cure" for me is a artificial pancreas (pump and CGM feedback loop). Not sure I trust software to do that. 

 

If he's right, then the only hope for Verapamil is with something that regenerates Beta cells like Bydureon possibly in combination with verapamil. I'm still giving verapamil 3 months first.



#27
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Not all beta cells are dead though, Dr Faustman's ultra-sensitive C-Peptide assays have proved that. Even for type 1s for decades still have some beta cells working and re-growing naturally, it's just they get culled too fast due to the stressors impeding their survival. It's like a weed, you need to keep putting weed whacker or it will start to grow back. Apparently only around 30% of type 1s have zero beta cells left.

 

It's worth a try anyway, so I wouldn't listen to his pessimism. I doubt you've ever have an ultra-sensitive C-peptide assay, but if you google Faustman's studies on whether type 1s have beta cells, you will see research that's been reproduced in multiple labs. In any case, screw endos, their career depends on you remaining diabetic so they are going to milk it as much as they can. When I went on Victoza originally I was astonished by how much better I felt and how much my sugars improved, the more and more studies came out to confirm that and eventually the FDA will get their fingers out and approve it for type 1s too. It's the best medecine that's improved my life, too bad about the negative side effects but now I'm going to try it again. 

 

Incidentally, my GP has been MUCH more receptive to trying off label drugs to improve my condition. Sometimes I wonder if endos are really doing as much as they can, if not even actively hampering people's progress.

 

Artificial pancreas is not a solution for me, I don't trust machines. One little software or hardware glitch, it injects too much insulin into you while you sleep or driving, and you're in a coma or dead. No way.



#28
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The main reason I've always wanted to try Bydureon is because the nausea always seems to happen with Victoza in the mornings, precisely when I need to get up and be productive at work. So I'm hoping if I take my weekly shot on say, friday night, by monday morning I should be stabilized. Havings ups and downs of a medecine taken daily could explain the cyclical pattern of side effects which I hope would be minimized or spread out over the week. At which point maybe just taking a bunch of ibuprofen each day would be enough to make you not feel the side effects.

 

I don't relish the notion of throwing up again, but I've suffered so much, at least this has a silver lining in that it might work. When I first tried Victoza I was like, I feel "normal" like I haven't in twenty years. Felt more "solid", more calm, not jittery. Able to sit through a meal without getting anxious to walk around after the meal is over. Feet stop feeling twitchy and legs aren't restless. If anything combined with verapamil could push us over the top in terms of current, proven drugs, it's GLP-1 and other gila monster spit derivatives.



#29
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The other thing I learned from the recent studies is that taking the max of victoza, 1.8 per day, is actually less proportionally effective than 1.2. And starting at 0.6 then inching up slowly is a far safer bet, especially with the weekly Bydureon, where you're right, if you have a problem with the drug you're stuck with it until it leaves your system a week later. But that should be minimized by taking a real lose dose initially and increasing very gradually instead of in bigger steps.



#30
feibelman

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Thanks. I agree with you. I will continue on the 480mg/day of Verapasil for 3 months and try to add Bydureon if Verapasil alone shows no improvements. My plan is to reduce meal time insulin bolus by 1 unit and check 2 hours after every meal. If I notice post-prandial BG levels are high, then I will correct them. However, if two or three in a row are in range, then I will bump down by another 1 unit and continue that process. After several weeks, with any luck, I can miminize (or possibly even forego) fast acting insulin. That would be a God-send if it happens because fast acting insulin is the devil's medicine. One or two units too many and your in a coma. That is also why I am with you on never letting a computer program figure out how much insulin to give me. ;->



#31
feibelman

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Hmm ... we just need some fertilizer for those weeds Bydureon and something to stop the weed-wacker which may be rooted in TXNIP and therefore contained with Verapamil. Sounds too good to be true, but I will try it if Verapamil doesn't help in 3 months.


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#32
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From the following web page: http://www.uab.edu/n...man-islets-mice

 

It seems they think 1 year isn't enough time ... wonder why when the mouse showed glucose improvements in 10 days?

 

Shalev says the trial is a first step in the direction of such a novel diabetes treatment approach.

“While in a best-case scenario, the patients would have an increase in beta cells to the point that they produce enough insulin and no longer require any insulin injections — thereby representing a total cure — this is extremely unlikely to happen in the current trial, especially given its short duration of only one year,” Shalev said.

Shalev expects verapamil to have a much more subtle yet extremely important effect.



#33
feibelman

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From the following web page: http://www.uab.edu/n...man-islets-mice

 

It seems they think 1 year isn't enough time ... wonder why when the mouse showed glucose improvements in 10 days?

 

Shalev says the trial is a first step in the direction of such a novel diabetes treatment approach.

“While in a best-case scenario, the patients would have an increase in beta cells to the point that they produce enough insulin and no longer require any insulin injections — thereby representing a total cure — this is extremely unlikely to happen in the current trial, especially given its short duration of only one year,” Shalev said.

Shalev expects verapamil to have a much more subtle yet extremely important effect.

It seems the monster spit is going to very likely be required.



#34
feibelman

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Interesting find online ....

 

Testing treatments – using gene therapy to treat diabetes
Fatima Bosch of the Autonomous University of Barcelona in Spain developed a gene
therapy treatment for type 1 diabetes in mice in which the diabetic mice were injected with
viral vectors containing healthy genes. The mice were completely cured. Following the
success obtained in mice, Professor Bosch went on to prove the effectiveness of this gene
therapy in dogs. Clinical trials in humans are now planned. 
 
and another ....
 

Edited by feibelman, 01 December 2014 - 06:33 PM.


#35
feibelman

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It probably won’t be a quick cure though. Beta cells will need time to regrow, probably years. Dr. Shalev told Medscape, “We’re notexpecting any miracles with this study, since we will be treating patients for only one year and we know that for any intervention to [regenerate beta cells] after such a large number of beta cells have died will take a long time.”



#36
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It probably won’t be a quick cure though. Beta cells will need time to regrow, probably years. Dr. Shalev told Medscape, “We’re notexpecting any miracles with this study, since we will be treating patients for only one year and we know that for any intervention to [regenerate beta cells] after such a large number of beta cells have died will take a long time.”

 

Looks to me like the Bydureon is going to be necessary to kick-start the regeneration process and maybe it is possible to just use Bydureon for 3 months (or so) and then stop it and let Verapamil "hold" things in place. I did see over on the ADA board where another Type 1 took Verapamil for years, but I don't know at what dose.



#37
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I'm also going to order some more Gaba pills on top of Liraglutide (unfortunately Bydureon isn't available in Canada yet, so I need to stick to Victoza. doh).

 

I tried GABA before but stopped taking it when I didn't see any significant results during my BCG injection adventure in 2011. Then my pills expired so my girlfriend threw them out. You have wonderful dreams on Gaba, and they made my shoulder muscles grow too, so those are at least some fun side effects for a change. Bodybuilders often take it and it's available at many health food / weightlifting stores.

 

GABA exerts protective and regenerative effects on islet beta cells and reverses diabetes.

http://www.ncbi.nlm.nih.gov/pubmed/21709230

 

 

Let me know if you can score some Bydureon and what side effects you have. I'm gonna go on 0.6 -> 1.2 Victoza + Gaba + Ibuprofen + Verapamil (+ maybe IGF-1 eventually). I'm gonna try taking all this for an entire year.

 

Good luck getting all your prescriptions, just go to a clinic and skip telling your main doctor about them. I don't believe in being a passive patient, waiting like a putz for FDA to approve a drug again that's already been approved 30+ years ago (verapamil). 


Edited by Hoping4Cure, 02 December 2014 - 12:04 PM.


#38
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Looks to me like the Bydureon is going to be necessary to kick-start the regeneration process and maybe it is possible to just use Bydureon for 3 months (or so) and then stop it and let Verapamil "hold" things in place. I did see over on the ADA board where another Type 1 took Verapamil for years, but I don't know at what dose.

 

We need to find out, because whatever that dose is, we need to either take more or make sure we're boosting the beta cell regeneration process, I agree.

 

I'm also taking prevacid 24hr now (1 / day), gastrin is another beta cell regen agent apparently.

 

http://www.ncbi.nlm.nih.gov/pubmed/11872667

 

"We found that infusion of gastrin from day 7 to 10 postligation resulted in a doubling of the beta-cell mass in the ligated part as measured by morphometry. This increase in insulin-expressing cells was not associated with increased proliferation, hypertrophy, or reduced cell death of the beta-cells. Furthermore, we found an increased percentage of single, extra-insular beta-cells and small beta-cell clusters induced by gastrin infusion."

 

"In conclusion, we demonstrate that administration of gastrin stimulates beta-cell neogenesis and expansion of the beta-cell mass from transdifferentiated exocrine pancreas."

 

-------------------------------

"Gastrin action on β-cell regeneration and survival increased β-cell mass and improved glucose tolerance in 95% Px rats, supporting a potential role of gastrin in the treatment of diabetes."

 

http://press.endocrine.org/doi/abs/10.1210/en.2011-0066

 

-----------------------------

 

Prevacid effects:

 

http://dailymed.nlm.nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=9407

 

"Serum Gastrin Effects

 

In over 2100 patients, median fasting serum gastrin levels increased 50% to 100% from baseline but remained within normal range after treatment with 15 to 60 mg of oral lansoprazole. These elevations reached a plateau within two months of therapy and returned to pretreatment levels within four weeks after discontinuation of therapy."


Edited by Hoping4Cure, 02 December 2014 - 12:18 PM.


#39
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Gastrin in another study, combined with Epidermal Growth Factor (haven't heard of that one before):

 

http://www.ncbi.nlm.nih.gov/pubmed/14666367

 

"Our results show that combined treatment with gastrin and epidermal growth factor can induce sufficient regeneration of a functional islet mass to restore glucose homeostasis."


Edited by Hoping4Cure, 02 December 2014 - 12:19 PM.


#40
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Very interesting survey of neogenesis of islet cells in humans:

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3740706/

 

5.2 Pancreas of type 1 diabetes patients

In spite of the commonly held belief that all β-cells are destroyed in type 1 diabetes, a number of reported cases of long-term type 1 diabetes have some islets with a few insulin-positive cells [61, 77-79]. Gianani et al. reported that only 3 of 13 pancreas organs after 10 years duration of childhood onset diabetes had any islets positive for insulin, and 2 of these must be considered as not being classic type 1 patients since there were no insulin-deficient (pseudo-atrophic) islets [80]. In cases studied by Gepts and de Mey, an almost complete loss of β-cells by 1 year was observed if onset was before 7 years of age, yet 40% of 43 patients with onset after 7 years of age and 10-30 years duration of diabetes had some islets with residual β-cells [81] (reviewed in [77]). Similarly, with multiple (8) samples examined per pancreas, Lohr and Kloppel reported 43% of 23 patients with disease duration of between 11 and 54 years had islets with residual β-cells in at least one lobe [61]. Meier et al. reported that 38% of the 42 pancreatic organs from patients with type 1 diabetes and duration ranging from 4 to 67 years had at least some islets with residual β-cells; 88% had scattered β-cells within the parenchyma, but the duration of disease was not provided for the subjects with residual β-cells [78].

In our study of post-mortem pancreata from the well-characterized Joslin 50-year Medalist cohort of people with over 50 years of type 1 diabetes (duration 64.3 ± 1.9 years, n = 28; all but 2 with high risk DR3 and/or DR4 allele), we found that all had scattered single or small clusters of insulin-positive cells in the parenchyma of only some lobes, and 68% had some islets with at least a few insulin-positive cells [82] (and unpublished data). A critical, but unanswerable, question about these pancreata from subjects with long-standing type 1 diabetes is whether the insulin-positive cells have escaped autoimmune destruction or whether they were formed only recently. If the latter were true, these cells could represent the continual attempt at regeneration noted by Warren [2], as quoted at the beginning of this chapter.


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