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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Safety of bitters or quinine?

by faithoverfear on Mon Oct 03, 2016 9:26 am

Is it safe for me to be drinking bitters or tonic water (same quinine active ingredient)?

Of special concern is the potential effect of the bitters or tonic water on the kidneys. Some research shows a favorable affect, but others lists kidney problems as a risk factor.

Background :

After my autologous stem cell transplant (ASCT), I experienced acute orthostatic hypotension, chest pain, irregular heart beat, shortness of breath, bloating and fatigue. Of course, the chest pain and shortness of breath resulted in visits to the ER and one hospitalization. Heart is great. Each time, low vagal tone was blamed. A tilt test was recommended, but waiting list runs nine months.

These conditions gradually improved. Fatigue remained.

Routine colonoscopy resulted in diagnosis of the bloating being small Intestine bacterial overgrowth (SIBO). Easily treated with a special antibiotic. Relapse is common.

One way to decrease chance of SIBO relapse is to take bitters before each meal. Bitters stimulate the vagus nerve, which in turn increases gastric secretions, pancreatic enzymes, and lots of other stuff. The bitters work great! I have about half as much energy as before diagnosis. That may not sound great, but it is a big improvement.

faithoverfear
Who do you know with myeloma?: me
When were you/they diagnosed?: Sept 2014
Age at diagnosis: 63

Re: Safety of bitters or quinine?

by TerryH on Mon Oct 03, 2016 11:58 am

I can't speak to the effect of quinine on the kidneys, but quinine does have some anti-myeloma activity. It was one of the very first myeloma treatments back in the 1800s, and it was found to have a mild anti-myeloma effect in a few studies conducted in the 1990s and 2000s. The impact wasn't very strong -- it wasn't statistically significant -- but you can see it visually in graphs of progression-free survival and overall survival like the one in this article:

https://myelomabeacon.org/news/2014/07/12/malaria-treatments-for-multiple-myeloma/

So, if you're concerned the quinine might agitate (or "help") your myeloma, I wouldn't worry.

TerryH

Re: Safety of bitters or quinine?

by GaryH on Tue Oct 04, 2016 9:57 am

My doctor prescribed quinine for me to see if it helped with some major cramps (due to chemo) I was experiencing at the time. They did help with that issue!

GaryH
Name: GaryH
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Nov./97
Age at diagnosis: 44

Re: Safety of bitters or quinine?

by TerryH on Tue Oct 04, 2016 4:07 pm

Hi Gary,

You're right. Quinine is good at helping prevent cramps. It's one reason that you'll often hear tonic water recommended as a home remedy for cramps. It's the quinine in the tonic water that helps with the cramps.

TerryH


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