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Ann-she-ken-1 profile image
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What do you do to prevent UTIs while on Tysabri?

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Ann-she-ken-1
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14 Replies
falalalala profile image
falalalala

I don't take any prescribed medication for MS but do take a daily cranberry supplement (pill form) and I have not had a UTI in years.

Ann-she-ken-1 profile image
Ann-she-ken-1 in reply tofalalalala

Thank you. I used to do that too when on interferons and Copaxone. Now I take VitaminC, which seems to be working. The first time on Tysabri I was on it for 10 years. Went on Gilenya, but walking got worse. Now back on Tysabri.

Have you seen Dr. Aaron Boster on YouTube. He is a passionate MS doctor who feels everyone with MS should be on a disease modifying therapy (DMT).

falalalala profile image
falalalala in reply toAnn-she-ken-1

No,I haven't heard of him but am well aware that many doctors share his view.:)

I think of DMTs as more of an immune system modifier not a disease modifier as that in my view would be more along the lines of a "cure".

Ann-she-ken-1 profile image
Ann-she-ken-1 in reply tofalalalala

Go to endece.com and click on picture that says NDC-1308 to induce Remyelination. My husband and I are in the video.

falalalala profile image
falalalala in reply toAnn-she-ken-1

I saw you make that putt.:)

Interesting video. I'm looking at some papers on this drug. I specifically want to see the side effects and as usual,I have to go through a boat-load of reading before I get there.Lol

My general attitude about meds and doctors is that I view most of what they tell me with a lot of doubt.

Of course I hope there is something out there to help MS and other diseases but I am not one to jump on any bandwagons when it comes to drugs.

Let them guinea-pig someone else. I already did a clinical trial on MRI machines and that was enough for me.

I have been a Type1 diabetic as well for 29 years and there was/is always some thing new that would perform some miracle. I am used to reading/hearing these things.You wish they'd work but.....

My attitude these days is more of a I'll believe it when I see it thing and not through the companies that make these drugs.

Thank you anyway for the info and I hope some good comes of it. :)

Ann-she-ken-1 profile image
Ann-she-ken-1 in reply tofalalalala

NDC-1308 is in clinical trial for NMO, because there are no drugs for that autoimmune disease. I know the scientist Dr. James Yarger, and I want to be in the clinical trial for MS when they get the funds for it. He is in SanFrancisco now working on funding for MS.

falalalala profile image
falalalala in reply toAnn-she-ken-1

I wonder when you will be doing that? I imagine soon as his timeline to get it to market is 4-5 years.

At any rate,I hope it helps.:)

Ann-she-ken-1 profile image
Ann-she-ken-1 in reply tofalalalala

This is from Dr. Yarger:

NDC-1308 is highly lipophilic so it easily crosses the blood-brain barrier (BBB). In addition, we plan to administer NDC-1308 intranasally which will bypass the BBB…..and no injections!

In my words: NDC-1308 is administered through the nose.

falalalala profile image
falalalala in reply toAnn-she-ken-1

;)

Injections are nothing new to me.Lol!

As for the other way? Who nose how that will feel?

falalalala profile image
falalalala in reply tofalalalala

I am in no way claiming to be an expert on any meds one might take for MS but it's stuff like this that makes me question every thing they come up with.This was just a rudimentary search.

Prediction of Central Nervous System Side Effects Through Drug Permeability to Blood-Brain Barrier and Recommendation Algorithm.

Fan J1,2, Yang J2, Jiang Z2.

Author information

Abstract

Drug side effects are one of the public health concerns. Using powerful machine-learning methods to predict potential side effects before the drugs reach the clinical stages is of great importance to reduce time consumption and protect the security of patients. Recently, researchers have proved that the ************central nervous system (CNS) side effects of a drug are closely related to its permeability to the blood-brain barrier (BBB).************

Inspired by this, we proposed an extended neighborhood-based recommendation method to predict CNS side effects using drug permeability to the BBB and other known features of drug. To the best of our knowledge, this is the first attempt to predict CNS side effects considering drug permeability to the BBB. Computational experiments demonstrated that drug permeability to the BBB is an important factor in CNS side effects prediction. Moreover, we built an ensemble recommendation model and obtained higher AUC score (area under the receiver operating characteristic curve) and AUPR score (area under the precision-recall curve) on the data set of CNS side effects by integrating various features of drug.

Ann-she-ken-1 profile image
Ann-she-ken-1 in reply tofalalalala

Injections are nothing new to me either (Avonex, Copaxone, Rebif). I am willing to try the drug in clinical trial, because it is supposed to repair myelin. I am on Tysabri, which prevents cells from crossing the blood-brain barrier (BBB).

falalalala profile image
falalalala in reply toAnn-she-ken-1

I wish you well in what you choose to do! :)

Kenu profile image
Kenu

Probably being a Green Bay fan😜🤣😂😆. Just kidding 👍. My brother has stock in Green Bay👍. Sorry I don’t know about uti’s Ken 🐾🐾

Ann-she-ken-1 profile image
Ann-she-ken-1

I was on D-Mannose years ago. It gave me diarrhea. I am taking VitaminC now which seems to be working.

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