Drug Study
 

Well...went to see my pain management doctor today. I'm going to try aqua therapy (starting July 17th), need to see my primary care dr to get my thyroid checked out (they think I have an overactive thyroid which would maybe explain the worsening brain fog and many other symptoms), and I will also be participating in a new drug study for IV Neridronic Acid. I did the screening process for that today while I was at the office (since it's over an hour away I didn't want to have to make another trip). I'm hoping a qualify for participating in the study...something to try in the mean time while I wait for DRG approval (whenever that might be).

Just wanted to give you guys an update on how the visit went. Feeling pretty optimistic. I usually do after my doctor appointments...always feel like at least there's something we can continue to try and work towards. The study sounds pretty optimistic...and since nothing else seems to be working it's worth a shot. Anyone heard about this drug before? IV Neridronic Acid?

Hi Catra,

I'm so excited for you! The IV drug in the study is also called neridronate, which may show up more online. It is a bisphosphinate that has shown really good results. The original research on this was done in Italy by Dr. M Varenna . I just linked an article by him on how it works to a post by Becca a couple threads down. It is now in safety trials in the US meaning it showed enough efficacy in the first trials here to continue.

I'm sorry I can't post any links right now (traveling) but if you do a search feature here for neridronate some old posts will come up. Google Scholar will have a quite a bit on it. His studies will come up if you just put his first initial and last name. Varenna's Italian studies focused on early use but the astounding thing is most of those patients went into remission from what I recall. I think it sounds like it's definitely worth trying. The biggest risk is osteonecrosis of the jaw, I'm not sure the rates, seems like the highest I saw was up to 5-7% for some bisphosphinates but that rate can be variable drug to drug and is lower in some. Ask your doctor about that. The majority of that side effect happens in people who have a tooth extracted in a certain time. I encouraged Becca to get a dental check up if she was concerned about any of her teeth.

Let us know what happens! I hope you get in without any problem.

sending soft hugs and healing vibes, LP

Thanks for the info!

Praying all goes well for you Catra. Hugs to you my friend.

Thank you.

Back in the day I got pamidronate, or alendronate (not sure). I hope the study goes well for you. Are you sure you are going to be getting the medicine or is it a different kind of study?

This is the kind where everyone gets the medicine. There are no placebos. :)

Phew, that's good! Good luck with the study!!!

Thanks! Fingers crossed I qualify to participate (I did all the tests for qualifying last Thursday). I thought I would have heard by now...but with a holiday on Tuesday I wouldn't be surprised if I don't hear back until next week.

So...my Vitamin D levels are too low...so they're going to high dose me on Vitamin D for a couple of weeks to try to get the levels up to at least 30 (mine are at 11 currently) so that I can move forward with the study. I'll keep you all updated on how that goes.