Anyone tried Neridronate acid infusion? — Scope | Disability forum
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Anyone tried Neridronate acid infusion?

Marsy6
Marsy6 Member Posts: 6 Connected
Hi I got diagnosed with crps 2 yrs ago due to fracturing me knee cap. I currently am on Gabapentin. My right ear has started to deteriorate and now I’m waiting for an hearing aid. I’m currently talking to a firm in Italy who say they can reduce my pain and hopefully help me. I just wanted to know if anyone else has heard or done it before and if it helped. It’s Neridronate acid infusion over a wk. Many thanks 

Comments

  • April2018mom
    April2018mom Posts: 2,869 Member
    edited September 2019
    I recommend seeking advice here first. Travelling abroad for hospital treatment is costly and should be tried when all other options are no longer suitable. Talk to your pain team. Perhaps they will have suggestions? [Link removed by moderator]
  • Marsy6
    Marsy6 Member Posts: 6 Connected
    Hi, I’ve spoke to the pain team and I got offered no nerve pain blockers I just got sent to talking change to speak to someone. My doctors have really no clue on my condition and haven’t really helped me one bit
  • Marsy6
    Marsy6 Member Posts: 6 Connected
    What is zoledronic acid as I’ve never heard of this before would this help my osteoarthritis or crps
  • April2018mom
    April2018mom Posts: 2,869 Member
    edited September 2019
    Marsy6 said:
    What is zoledronic acid as I’ve never heard of this before would this help my osteoarthritis or crps
    Marsy6 said:
    What is zoledronic acid as I’ve never heard of this before would this help my osteoarthritis or crps
    [Removed by moderator]. This leaflet has more information. http://www.io.nihr.ac.uk/wp-content/uploads/migrated/AXS-02-April-2016.pdf 
  • mikeymike
    mikeymike Member Posts: 40 Courageous

    hi I have lived with crps for 18 years now and I have been through most pain medication in that time and my body ran its course with them a long time ago now I am pregabalin which is basically a stronger version of gabapentin along with anti depressants for my ptsd the only thing they have found to help if I have a major flare up is a week in hospital with a ketomine and morphine infusion a very unpleasant necessity I have certainly never come across what you are talking about and I would certainly suggest doing a lot of research first and talking to your pain management team.

    all the best

    mike

  • Marsy6
    Marsy6 Member Posts: 6 Connected
    Thank you for that I’ll definitely ask the doctors about this and the pain team and see if I can get them as I am willing to try anything. Thank you for this advice very helpful 
  • Marsy6
    Marsy6 Member Posts: 6 Connected
    Wow I’m really sorry to hear that. Well I really hope I don’t get that but needs must and like I said I’m willing to try anything. I’m not too sure what to do as the pain clinic offered me nothing except talking change which I thought was a joke as they said I can’t have the nerve blockers for some reason. I’ve took all meds allowed and been on pregablin but I got told Gabapentin would be better for me. It just feels like I’m going round in a circle with all this with no help. Like I said it’s now affecting my right ear and my decibels have dropped below 70. Are everyone’s doctors like mine on here no nothing and just try and send you away. I feel like I’m burdening the doctors ringing them all the time
  • mikeymike
    mikeymike Member Posts: 40 Courageous
    don't knock the pain management it does help with the learning on how to deal with it and using mindfulness is a great help and hopefully they will run through that with you, as for doctors well very few in my experience know anything about crps and even less make the effort to learn about it its just a case of pot luck I have found,
  • Marsy6
    Marsy6 Member Posts: 6 Connected
    To be honest I’ve only seen the pain team afew times. I’m gonna have to make an appointment to see them ASAP as you have give me some really good advice. I’m doing the mindfulness thing now as my work coach put me onto it. I just got told the last time I did see the pain clinic they said they can’t do nothing to help me. Well I’m defo gonna get intouch with the pain team. Thanks for all the advice very much appreciated 
  • mikeymike
    mikeymike Member Posts: 40 Courageous
    glad to be of help hope all goes well
  • April2018mom
    April2018mom Posts: 2,869 Member
    Glad I could help!
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    Marsy6 said:
    Wow I’m really sorry to hear that. Well I really hope I don’t get that but needs must and like I said I’m willing to try anything. I’m not too sure what to do as the pain clinic offered me nothing except talking change which I thought was a joke as they said I can’t have the nerve blockers for some reason. I’ve took all meds allowed and been on pregablin but I got told Gabapentin would be better for me. It just feels like I’m going round in a circle with all this with no help. Like I said it’s now affecting my right ear and my decibels have dropped below 70. Are everyone’s doctors like mine on here no nothing and just try and send you away. I feel like I’m burdening the doctors ringing them all the time
    Please remember everyone is different with meds. Recently I swapped over to pregablin for fibromyalgia and it was terrible for me. Then returned to Gabapentin. One positive is I’m now on a lower dose as I had a break from it and need less. It was really hard to switch.
  • Adrian_Scope
    Adrian_Scope Posts: 8,091

    Scope community team

    @April2018mom, I've edited your post. Please be careful not to give medical advice. 
    Community Manager
    Scope

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