[yellowcat (OP)]

Anyone here know of any pharma companies or research labs in the UK that are researching orphan drugs and diseases?
Particularly pharmaceutical treatments for chronic pancreatitis and pancreatic stones.

I have mentioned before a friend is suffering from this. All he is being offered is either strong opiates or surgery to remove the pancreas.
The thing is that while he is diabetic his pancreas is still producing digestive enzymes so he would need to replace those as well as having insulin if pancreas was removed.
Also he has been told that he would need his spleen removing as well which would cause some immune impairment.

We found a study from the 1990s that showed dissolution of pancreatic stones and cutting of pain in 70%+ of subjects. This was an off label use of an epilepsy medication which has now been discontinued.

He contacted the manufacturers a couple of months ago and one research person he spoke to was interested in running a trial treatment but that was cancelled by the financial side who did not think it would make enough money to be economically viable.

It may still be possible to get the drug from china but it is no longer listed on the UK national formulary.

Does anyone here have any ideas as to what to try next. The London hospital doctors he has seen were only interested in surgery, with another saying that would be too dangerous.

[chris]

You have already posted on this topic previously, and I replied with a link to some relevant resources.

Perhaps you missed the original reply?

https://www.thenakedscientists.com/forum/index.php?topic=71068.0

[RD]

chronic pancreatitis and pancreatic stones ... All he is being offered is either strong opiates or surgery to remove the pancreas ...

lithotripsy ?

[yellowcat (OP)]

The hospital said his pancreas was  not suitable for lithotripsy.  He asked about laser lithotripsy and was told it was not a service they offered.
I did a literature search found a possible drug treatment to dissolve the stones:
Dissolution of pancreatic stones by oral trimethadione in patients with chronic calcific pancreatitis
Noda et al  Journal of Gastroenterology and Hepacology (1994)
https://www.ncbi.nlm.nih.gov/pubmed/7827299
This study  reported complete relief of pain  in 73% of patients during the treatment. This study seems to have been forgotten, it only has 13 citations.

What my friend is looking for is a way to have this treatment instead of major surgery that would also remove his spleen and, require months of recovery and is not guaranteed to resolve his chronic pain problems. He is hoping to find somewhere willing to run a new clinical trial of this treatment.
He realises that it is rather unusual for patients to come up with proposals for clinical trials.