when will trials for neridronate (marketed as nerixia) for the treatment of CRPS start in the UK?
It has 100% success rate in European studies and is used in 32 counties worldwide for cure of this life affecting debilitating and painful condition from which I suffer this medication is passed safe for treatment of bone thinning conditions and is in use in this country can anyone explain when it is produced here for the European market why people such as myself are being left to suffer when there is a proven treatment available and when this treatment has been shown to be effective even in the treatment of children.
This treatment has been on the market since 2002 when can I and others like me expect to receive it?
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janetfleming1961
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Just where do you get this is a cure. Please link to medical papers because as far as I am aware there is no known cure and I have done thousands of hours of reearch
found the study at the the bottom of the page (such a blonde!)
the study was done in Italy, and is an open paper so all can read it: here is the section on crps
Complex regional pain syndrome
type I (CRPS-1)
A plethora of names has been used to describe this syndrome (eg, reflex sympathetic dystrophy, causalgia, Sudeck’s atrophy, algodystrophy, neurodystrophy, post-traumatic dystrophy). Since the underlying pathophysiology is poorly understood, and no treatment has been found to be so effective to obtain the indication for this disease, CRPS-I still remains a matter of debate. CRPS-I is a severely disabling pain syndrome characterized by allodynia, hyperalgesia, edema, signs of vasomotor instability, movement disorders, joint stiffness, and regional osteopenia that in most cases develop following a trauma or surgery. Recently, Tran et al, by reviewing the literature published between 1950 and 2009, identified 41 randomized controlled trials which were suitable for their inclusion criteria.39 Eighteen of those studies included the use of pharmacological therapies. A single intravenous infusion of 7.5 mg alendronate,40 intravenous clodronate (300 mg for 10 days),41 intravenous pamidronate (60 mg once),42 and 40 mg daily oral alendronate for 12–16 weeks43 have been reported to be associated with positive results in controlling pain, edema, and functional impairment.44 However, none of these studies provided conclusive evidence of efficacy and sufficient data to make the use of a bisphosphonate formally indicated for the treatment of CRPS-I, mainly because of their limited size, with 10–20 treated patients per study.
A recent multicenter, randomized, double-blind placebo-controlled trial tested the efficacy of neridronate in patients with CRPS-I.45 The study involved 82 patients with CRPS-I at either hand or foot who were randomly assigned to intravenous infusion of 100 mg neridronate given every third day four times, starting from day 1 (first infusion) and ending on day 10 (fourth infusion) or placebo. After 50 days, the placebo group was treated with the same regimen of neridronate (open-extension phase). Within the first 20 days, the visual analog scale (VAS) score decreased significantly from baseline more in the neridronate group. In the following 20 days, VAS remained unchanged in the placebo group and further decreased in the active group (Figure 3). A number of other indices of pain and quality of life were significantly improved with respect to the placebo group, and most of the patients in the active group were healed.45 During the open-extension phase in the placebo group, the results of treatment were comparable to those seen during the blind phase in the active group (Figure 4). A year later, none of the patients was referring symptoms linked to CRPS-I. These results provide conclusive evidence that the use of neridronate is associated with clinically relevant and persistent benefits and represents the treatment of choice for CRPS-I.45
looks promising, will need to investigate further.
I'm in the process of applying to the hospital in Verona Italy now. There is a study/trial here in the US but it's now closed. It MAY open at the end of August but ......I have a friend who had the treatment and has NO pain at all right now. Who knows what will happen in the next months, years, but for now, I'd take a month without pain, after 20 years with this monster.
Do you know if there's anywhere else in Europe who is doing this other than Italy?
Please do not give people false hope, this is one study on 82 people far too few to state it's a cure
No, not a cure necessarily. However it should be touted as reasonable to be excited over. Pretty much anyone that's had this disease for any amount of time will tell you that this study would not have any success unless there was REAL relief because this disease is severe enough that you can't fake feeling better for any amount of time before it reminds you that it owns your body via pain. If a high percentage of people had any measurable success of the reported rates, it is surely cause for much celebration since almost all treatments at this point do not work for most people and there is no ONE standard protocol determined to be effective in the majority of cases as of yet. This one treatment has proven a wider reach with tangible results.... I'm going to see about getting the treatment because the risks are far less than any symptom this disease throws at me. I'm going to go ahead and have HOPE because there is little else that brings such feelings when the pain hits. Gentle ORANGE hugs to you from a fellow CRPS warrior.
You cannot see about getting the treatment. The study was done in Italy, if they are anything like the UK that is Phase one, they will then have to get permission for stage 2 with a larger sample, then if that is successful permission for stage 3, only after having submitted their papers will it be considered for general use. That will be many years down the line an even if approved for use in Italy it would then have to go through your countries protocols before you can get it
Our research into Immugloblin was first proposed in 2005, according to the Doctor in charge he 3rd stage won't be complete until 2020 then another 2 years until the paperwork is submitted reviewed and either accepted or refused that is why I say don't give false hope
I don't know where you got this information from but US trials say it is a failure
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