Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
I'd appreciate your take on blood thinners. I've tried Clopidogrel, but had to stop as it gave me nightmares, as well as liquid D. Now I'm trying low dose enteric aspirin, but know that it's probably bad for someone with a compromised GI system?
Any help would be greatly appreciated. I'm thinking that lots of coffee and a couple of martinis a day might do wonders .
Thanks,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Not a prescription drug but I'm taking 1000 mg of curcumin per day due to a precancer. I was taking 2000 mg of curcumin per day (1000 mg 2 x per day.) I cut my thumb and it bled and bled and bled. It definitely is a blood thinner. After the bleeding incident I cut back to 1000 mg per day.
Originally I started with 500 mg per day.
It has not hurt my MC. I think it has helped it. I was in a solid remission when I started and think I'm in more of a solid remission.
****NOTE--I DO NOT RECOMMEND THIS FOR THOSE NOT IN REMISSION. I REACTED BADLY WHEN I TRIED THIS BEFORE GETTING IN REMISSION.****
Interesting - it keeps coming up lately so I will try it. What brand do you use and where do you get it?
Thanks a lot for the suggestion.
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
I'm taking the Drs Best Curcumin that has pepper in it. I usually take it with a teaspoon of olive oil. The pepper and fat help with absorption.
After my bleeding incident I suspect that most likely the 500 mg or maybe the 1000 mg dose would tie out to the baby aspirin regimen.
The good news is my precancer went away on the 2000 mg dose plus eating a lot of garlic and onion. I'm going to stick with the 1000 mg dose until I do another test on the pre cancer in 12 months.
Curcumin is also supposed to be protective against alzheimers. Curcumin is also protective against progression of multiple myeloma cancer. The Smoldering Multiple Myeloma cancer patients take 8000 mg per day which is a massive amount. I can't imagine what happens if they get a cut but it stops the progression of smoldering myeloma from developing into full on multiple myeloma cancer which is a death sentence.
I started with enteric-coated (Bayer) aspirin (after the first TIA in 2009), but according to a pathologist's article that I discussed in my last book, they're bad news for everyone, not just MC patients. The enteric coating just transfers the erosion damage to farther down in the intestines. They spare the stomach, but they still cause major damage to the mucosa of the intestines.
I've been taking Clopidogrel for 8 years (since after the second TIA in 2010), and when I had the stroke almost a year ago I fully expected them to prescribe something else. They didn't. I don't know if that means that they think it's the best thing I can use, or if they figure there's no hope for me anyway.
And to add insult to injury, now I'm taking a statin because of a narrowed fork in a blood vessel in the back of my brain (and because I'm a high stroke risk, obviously). Statins pretty much neutralize Clopidogrel. I'm down to a maintenance dose of only 20 mg of atorvastatin. But even at that low rate, that makes my 75 mg Clopidogrel Bisulfate tablets only about 15 % effective (if I recall correctly), according to research. So I no longer have a bleeding or bruising problem.
Are you looking for a natural product? Besides the curcummin, there's krill oil. If you get the right kind, it's apparently such a potent blood thinner (in addition to the omega 3 benefits) that you're not supposed to take it if you're taking Clopidogrel or most other blood thinners. I don't recall looking at any others. Sorry I couldn't be more helpful.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
If it is any consolation, my Neurologist said that the only 2 blood thinners available are Clopidogrel and Aspirin. Since I don't seem to tolerate Clopidogrel, that leaves Aspirin for me, which I really don't want to take. I will try Curcumin, and if that doesn't work, move to Krill oil.
As far as what's going on with me, my Neurologist thinks I have a form of Vasculitis and I'm in the midst of a battery of tests. I had self diagnosed Aura Migraine with Transcient Aphasia, but the last "episode" scared me into the ER and then to a Neurologist. I have no idea how this will turn out, but I do know that I don't want another "episode". The symptom is a kind of "brain scrambling" wherein I cannot think, speak, read, write, etc. for a period of time. The duration is increasing, with the latest one lasting 4 hours. I have had 4 "attacks" since it started last March.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
I also had aura migraines (I called them acephalgic migraines at the time), I believe it was back in the spring of 2009, before (and after) the first TIA. I wasn't very concerned about them at the time, but pretty obviously they were a warning of things to come. At the time, I didn't get much neurological help — only a diagnosis of Parkinson's disease, which apparently wasn't correct. Maybe they understand things like this a lot better now.
At any rate, episodes of that sort certainly require checking out. I assume you've already learned that primary systemic vasculitis is usually associated with endothelial dysfunction. FWIW, Metanx (or Methyl-Gard Plus) treats endothelial dysfunction. I've been taking it since the summer of 2009.
I sometimes wonder if issues such as this are either caused or made worse by our restricted diets. I take a lot of vitamins to compensate, probably unnecessarily, but I wonder about trace elements that we might be missing.
Whatever it is, I hope that you and your neurologist can track it down and nip it in the bud as quickly as possible.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks for your input Brandy - just took my first Curcumin pill. The dietitian at Natural Grocers recommended that I take it together with the Krill Oil I bought, as that would make it easier to digest. I will hold off on that until I know how I do with the Curcumin. It's only 300mg, but figured I'd go slowly. If it goes well, I can double up.
Yes, this is very scary indeed, and I will update here as I know more. As I said, I have a battery of tests scheduled. The scariest are the cerebral angiogram scheduled for April 10 and the spinal tap. On Monday I do an echocardiogram and on Tuesday an EEG. I already did a CT scan, MRI, blood work, etc.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
I finally have a confirmed diagnosis of Vasculitis, but I've been through HELL to get it. During the Cerebral Angiogram procedure, I had a stroke (chances are 1 in 1/2%, or 1 in 200). In addition to the stroke, I had an unbearable headache caused by the spinal tap, which I did before the Angiogram. I was in the hospital in Intensive Care for 2 days. Fortunately, the stroke symptoms were limited to vision and brain functions only.
Anyhow, it's the 11th day after the testing, and I'm getting better. I saw my Neurologist today, who I actually really like. He put me on a 6 week course of Prednisone, starting with 60 mg, then followed with slow tapering. In a way I'm happy about this. After 18 years since MC diagnosis, I have not been able to get rid of the D, even though I'm much better. It is a constant presence in my life, so I'm hoping that the Prednisone will help that, along with the Vasculitis. It seems that the constant inflammation in my colon has migrated to the blood vessels in the brain.
Questions:
Does the 60 mg dosage seem reasonable?
Can a 6 weeks course of Prednisone leave any permanent damage?
How long will it take to taper off after the 6 weeks?
I'm nervous about getting on Prednisone, but am willing to do what it takes to avoid a major stroke. I have treated the MC with food only over the years and am hoping that this will "shock" my system into final capitulation :).
Thanks for any information - especially from you Tex.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Wow! What an ordeal. Glad that's behind you and you've been able to recover. I hope you never have to go through something like that again. And I certainly hope the treatment works, after you had to deal with all that.
As far as I'm aware, 60 mg is a moderate dose but it should be plenty if you have never used it previously. I would think that six weeks plus a taper shouldn't create any major issues when weaning — it's using it for years that causes major withdrawal problems. I looked up Sally's old post where she described her ordeal when trying to wean off prednisone after using it for several years. A link to it is below, plus a link where Marsha described her weaning process. But your weaning process shouldn't be anything like that. Yours should be uneventful.
And what a bonus if it were to shock your system into remission from the MC, also. I sure hope that happens. One thing's for sure — at least the treatment won't antagonize your MC. Best of luck to you.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thank you so much for your encouraging note. It means so much to me to have you here to consult with. A phrase that often comes to my mind regarding you is "a life worth living". Your kindness and sage advise reaches far and wide - can't imagine how many people you have helped and keep helping. I hope you're feeling better and better as you put the stroke further behind you. Wishing you all the best.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Thank you for your well wishes. I know you have suffered through many of your own rough spots, but are staying present here to encourage others in such a beautiful way. It is much appreciated. Hope all is well with you.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
.
Maybe they understand things like this a lot better now.
