NERIDRONATE INFUSIONS FOR CRPS

[@rosalynw.4261]

Interesting! I was part of the study in the USA and had the 4 infusions in Sept. 2017. They were only testing for the safety of it, so there was no one getting placebo. I was one of the rare ones that got extremely intense bone pain during the infusions and I still deal with it. They don’t really know exactly why it would do that, but I think they have it now listed as a possible long term side affect. I was super disappointed because beings I qualified for the study, I was hoping to get some relief. I got the same dosage and everything exactly like they would’ve done in Italy, so I’m really glad I didn’t go to Italy and spend the money to find out I get bone pain as a side affect. There’s a lot of people that get great results with neridronate infusions, so I’m glad if it gets approved in the US. We desperately need something to help with this terrible disease.

[@TheCRPSNetwork]

Rose, First, I am sorry that you still deal with bone pain as a result of the neridronate. Thank you sooo much for sharing about this! This is exactly the kind of information we need to share because I had no idea that residual bone pain could be a long term side effect. Even though it may be rare, It's a risk that people need to know about. Sharing our experiences, such as this, about our treatments, is the only way we are going to figure out the disease. We are all holding pieces of the puzzle, we just need to put them together :-)

[@gregbisesi9966]

Sorry to hear that you did not get benefit from the med. my wife had minimal side effects with both her treatments. Hers are usually rib and back pain that lasts 2-3 weeks but the benefit for her had been tremendous. Are you sure the Neridronate was given per the Italian protocol? Italian protocol is 100mg x 4 doses over 10 days. The trials here in the US tend to use lesser doses. The US Pamidronate trial was a failure because of the dosage and administration schedule.

[@creativegirl9710]

Did you try any ketamine infusions?

[@rosalynw.4261]

@@creativegirl9710 I actually am now doing those once a month and they are what keeps my pain manageable currently along with my med regimen.

[@rosalynw.4261]

@@gregbisesi9966 I did. I actually contacted Italy about their regimen and dosage and they confirmed that the amount that I got was what they would’ve given. So they had nothing further to offer and it was no benefits of me going there for theirs, except for the fact that they tried to tell me it was likely a different med, which I was not convinced of after checking into it in detail.

[@staceyshaffer180]

Thank you! I appreciate you keeping this debilitating disease out in the open and your continued research for treatment. I actually show your videos to my primary and ortho during my visits. And your dog is absolutely adorable!

[@TheCRPSNetwork]

Thank you, Molly Mae is so special to me, I love her to pieces!! Thanks for sharing my videos!!! I really appreciate that!

[@jant5709]

You probably heard that the U.S. NA Clinical Study was cancelled recently. Although my husband saw no relief from the NA trial, he has had CRPS for much longer than many (13 years). We do know of some who have gotten relief from NA, so it's sad that the study was cancelled. Thanks for your videos - they are very helpful.

[@gregbisesi9966]

Jan T It’s horrible that the trial was canceled. I have contact with several folks with CRPS from here on KZbin and other social media. A woman who’s high school athlete son that contracted CRPS from an injury and unable to play sports, was in that terminated trial and took his life recently. I have no way to verify this and of course would never ask for any proof of this woman to support her claim, but I take her at her word. And all I have to say about it and direct it to the FDA is “screw you FDA” get your priorities in order. People are dying. Every day you sandbag us on approval of Neridronate someone dies or sufferers in excruciating pain. DO YOUR JOB and do it expeditiously.

[@imadragonfly8087]

I was a part of a research trial for this in the US when I had been diagnosed for 6 months . 2 infusions per week if I remember correctly. They gave me vitamin D and Calcium to take every day. It made me quite ill- started with headaches, vomiting, chills, ect- basically like I had a flu each time. I didn’t notice anything for awhile. That said, months later, during the monitoring stage, I finally started slowly having a decrease in pain, sensitivity, and it wasn’t so purple all the time. But then they suddenly shut down the study before it was over. My improvement continued drastically after that, I got off the Gabapentin, ketamine and other meds. and about 9 months and lots of 3 days a week of therapy later, I finally can make a functional “fist” again. Still working on getting my mobility back and I get little baby flares sometimes, but for the most part, I would say I’m in 90-95% remission. I would 100% get the infusions again even if it was a trip to Italy.

[@TheCRPSNetwork]

Stephanie, WOW! That is very exciting! I am so happy to hear that you are nearly in remission! It's interesting how long it takes to kick in. Congrats and I am so glad you were diagnosed and able to get treatment so early. I wish they hadn't stopped the study.

[@juliebaxter7501]

I had heard about Italy providing this treatment and that it has helped some people . I didn't realize it worked on your bone marrow that is interesting as it didn't know that was also a place CRPS can effect. I hope it helps others and like you said gets more awareness out there . Thank you again for all you do

[@TheJustonemore]

Wow you are so great at showing how we are always looking for a cure. And or a tool to use for our pain. Thank you

[@TheCRPSNetwork]

I appreciate that ;-))

[@sundaysommers1476]

I had disabling CRPS for 27 years. I couldn’t walk, was homebound and needed crutches to take a single step. A year ago I had a simple nerve disconnect surgery and walked the next day pain free. For people with CRPS in a limb I highly recommend the chronic pain focused peripheral nerve surgeon who did my surgery, Dr. Tim Tollestrup. Neridronate didn’t help me.

[@TheCRPSNetwork]

Thank you for the input about your doctor. I always like to hear of good referrals. That's such great news about your surgery!! Thank you for giving us some feedback on the infusion.

[@scotteranger177]

You are the only person who has this surgery with Dr Tollestrp who cab make this claim.

[@sundaysommers1476]

@@TheCRPSNetwork I did not have an infusion. I had a disconnect of the saphenous nerve.

[@taviapalmer328]

Is this anything like ketamine infusions? Does the drug give you the Hallucinogenic side effects like ketamine does?

[@HonJennCoffey]

What about ketamine how long till they approve it so insurance has to cover

[@TheCRPSNetwork]

Jenn, this is in the works. It's only a matter of time. I am involved in actively making this happen. There are insurance companies that will accept it, Blue Cross is one that I know of. Medicare is real spotty with it...they approve some and not others and I am not sure how they base their decision. It maybe based upon the qualifications and training of the nursing staff at the facility. USC Keck Hospital accepts Medicare, under Dr. Richiemer.

[@Dan_Alien]

I get ketamine infusion every 4-5 months and my disability medicare covers it. But its called a lidocain infusion. So medicare will cover it. I have this disease for about 15 years so im too late for this procedure. So I wanted to add in NY there is ketamine therapy. If you need to know where shoot me a message. Its helped me greatly but not 100% but we take what we can get.;)

[@TheCRPSNetwork]

Dan, thank you for the valuable info. Thank you for sharing! That's interesting about them being classified as a lidocaine infusion.

[@Dan_Alien]

@@TheCRPSNetwork thank you I enjoy your channel so much as a fellow lady with this lovely disease 😁 its so good to learn from you and you give honest real help to people with this. What I want to explain is the hospital where I have the infusion done I think it was a tricky way to get medicare to pay. Let me explain how the infusion goes. I come in with my fav blanket that doesn't hurt my leg and for 3 hours I get a large amount of ketamine infused. After that you can get boosters every 3 weeks if needed. For me thankful I am managed very well so I am so grateful for my Doctor. He actually pioneered the infusion I get. So thankfully I'm in good hands.

[@medimacro9161]

Anyone been to Indiana?

[@marcusaurelius2242]

For what?