Betaseron & Cessation of Kidney Stones on Treatment!!

A board to discuss the Multiple Sclerosis modifying drug Betaseron

Betaseron & Cessation of Kidney Stones on Treatment!!

Postby MrsMomTo6 » Tue May 28, 2013 8:46 pm

I have had Kidney stones about every 8 weeks since 1997. Sadly, they were 'normal' to me...I had a urologist tell me, 'there is nothing you can do about stones, just get use to having them!' (yes, there are Jerk doctors out there!)

Thankfully, patients READ!! and can become educated about their conditions, and, learn that some doctors stop reading, and are not interested in advocating for patient quality of life, as that urologist did to me...years ago.

Long story short. Someone needs to research the effects of Betaseron on Kidney stones!!

During the year I took Betaseron injections (August 2011-June 2011) I had ZERO kidney stones!! NEVER in 14 years had I gone that long without a stone!! that was a BIG DEAL TO ME!!! It improved my quality of life!! isn't that what we all want?

Sadly, it looks like the Betaseron contributed to some increase in some mystery asthma symptoms I had, and I was pulled off of it to await the BG12 release.

Just thought someone out there might do something about the needed research into why my stones stopped.

FYI: I was DX with Primary HyperParaThyroidism this year...so, it would be interesting to know what PHPT and MS and Stones and Interferon have to do with each other????
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Re: Betaseron & Cessation of Kidney Stones on Treatment!!

Postby NHE » Wed May 29, 2013 3:43 am

MrsMomTo6 wrote:I have had Kidney stones about every 8 weeks since 1997. Sadly, they were 'normal' to me...I had a urologist tell me, 'there is nothing you can do about stones, just get use to having them!' (yes, there are Jerk doctors out there!)


If they are calcium oxalate kidney stones, then you might find this article from Medscape.com helpful.

Dietary and Holistic Treatment of Calcium Oxalate Kidney Stones
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Re: Betaseron & Cessation of Kidney Stones on Treatment!!

Postby MrsMomTo6 » Wed May 29, 2013 11:15 am

That article is VERY interesting. I shared it with my endocrinologist's PA in hopes that a nurse will share it, being that docs have not, in my case.

Having had stones since 1997, practically every 8 weeks for so many years, with all my doctors only saying to me the following:

"If you are a stone maker, you are a stone maker...there's nothing much you can do about it...'
"Your stone was made up of Calcium Oxalate...most stones are made of the same...it is common, it is not one of the stones you can treat.'
"You need to be on a Calcium Oxalate Diet in order to prevent stones...Here is a list of Oxalate Rich Foods...Good luck!!"
"You need in increase your water intake"

The end. Nothing else.

I suggested to my ENDO that perhaps someone would like to study why I stopped having stones on Betaseron Injections.

I think it is very interesting that also for the last year, I have 'craved Lemonade' and have made it and drank fresh lemonade daily. This study actually validates it as a stone deterrent. :) Isn't God amazing how he protects us with cravings!!??!!

The study was done by a nurse!! That is encouraging!!

Of course, I also think every Kidney stone maker should be watched for Primary Hyperparathyroidism too and should be followed with regular PTH, Calcium and Vit D and D 1,25 levels as well.

Primary HPT was not even considered on me though every doctor KNEW I had regular stones...I wonder why?
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Re: Betaseron & Cessation of Kidney Stones on Treatment!!

Postby jimmylegs » Sun Sep 22, 2013 2:06 pm

you might also find it worthwhile to look up research on the vitamin E connection to kidney stones.
vitamin E may be protective against kidney stones and it also features in certain diet and supplement protocols for MS.
one interesting effect of betaseron treatment that has been documented in research, is a normalization of serum vitamin E levels in patients.
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