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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

New hope for crps drug study


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Old 10-14-2015, 04:51 PM   #1
Halleene
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New hope for crps drug study

Just wanted to tell everyone with CRPS that there is a nationwide test study being done on a drug called Neridronic Acid. It is a 4 day 2 hr infusion. I just finished it last Thursday and I am 100% pain free. I have had CRPS for 3 years after breaking my hand and wrist. I had it in both hands, arms, legs, feet, my head, and back. There is hope out there for all of us. Please look into this test study in your area. If anyone has any questions please let me know.

 
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Old 10-16-2015, 11:41 AM   #2
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Re: New hope for crps drug study

Hi Halleene,

I'm so happy for you. This is very exciting news. I have had full body crps for over 7 years. I'm also signed up for the Neridronic Acid clinical trial. I did have my initial visit but have yet to receive a date to begin the infusions. I would love to hear what your experience was with the infusions and how long it took for your pain to go away.

 
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Old 10-20-2015, 07:40 AM   #3
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Re: New hope for crps drug study

Hi Guy in Pain,
It took me about 2 months to finally get the appointments to finally get the drug infusions. According to the paperwork I signed and what they told me I would experience flu like symptoms. Twenty four hours after receiving the 1st infusion I started having terrible bone pain and muscle pain along with muscle spams all in my back. It felt like my back was broken. I went in for my 2nd infusion, which was the next day after the pain started and told the doctor. She gave me meds to help the pain and stated that this drug raises your TSH levels and that was also symptoms the drug study stated for this drug. It lasted about 5 days. By the 3rd infusion the pain was gone. On the final day of the infusion I felt really good. The very next day I work up realizing I had no more pain. I also could make a fist with my hands which I could no longer do. It was amazing. It was most definitely worth going through all this to get here. I would recommend this to everyone with CRPS. Unfortunately some people will get the placebo and not the real drug. If you have any other questions please let me know. Best of Luck to you

 
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Old 02-07-2016, 04:59 AM   #4
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Re: New hope for crps drug study

I have had CRPS in my right foot for over 5 years. It is good to hear you got relief from the pain from the neridronate clinical trial. I have been wanting to talk to someone who has gone through the trial. I was supposed to start the treatments in December but had to have a wisdom tooth pulled and had to postpone the trial for 3 months
I would like to know if your pain is still gone but also if it relieved the other symptoms of allodynia.
Also have you had any other side effects good or bad from the neridronate infusions.
Thanks for your post

 
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Old 03-24-2016, 04:22 PM   #5
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Re: New hope for crps drug study

Halleene

I hope you are still doing well. I've had to put off the trials again due to another tooth extraction. I've never had so many problems with my teeth but I grind them together when my pain is at its worse and the dentist felt I had cracked the tooth. Hopefully I'll get to have the trial in July.
Are you still having good results? How has the treatment helped with all the sensitivities, hot and cold feelings etc?
It is good to be able to hear about other people with CRPS who describe their symptoms. Finally someone else feels the same crazy symptoms that I do and understands what I'm going through. Hope you are doing well

 
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Old 04-15-2016, 04:33 PM   #6
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Re: New hope for crps drug study

This is very interesting. In would love to hear about long term results

 
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Old 07-31-2016, 01:33 AM   #7
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Re: New hope for crps drug study

Hello Everyone!
I'm happy and sad at the same time to hear that in not the only one who's experiencing this RSD. I have to seriously look into this as well. Anything to stop this excruciating of and on pain. Thank you for posting this so we may have some kind of hope.

 
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Old 09-01-2016, 01:31 AM   #8
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Re: New hope for crps drug study

How do we find out about these trials and where are they located? Thats fantastic news!

 
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Old 01-07-2017, 07:36 PM   #9
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Re: New hope for crps drug study

Thanks and I am glad it helps you!!!

Do you know if this is something that is made for those with early and late state CRPS? Mine is 10 years now.

 
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Old 01-25-2018, 06:26 PM   #10
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Re: New hope for crps drug study

Is there any definite reason/explanation for this to afflict anyone? Is it associated with receiving an injury? And, if so how long does it take to manifest?

Thanks!

 
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