A couple of years ago I was diagnosed with moderate to severe Hydradenitis suppurativa which is an inflammatory disease and affects the immune system. In my case most of the flares are internal or in delicate areas. I was prescribed Imraldi injections which are in the family of biologics treatments and are, I understand, in some sort of trial and incidentally hugely expensive for the NHS. To qualify I needed to complete two other lengthy courses of ineffective medication prior and then there was a lengthy delay following the onset of Covid. However finally I started on the programme. It seemed that the injections worked quite well and have been holding the worst of it at bay for some time about eighteen months so far.
However as soon as my kidney cancer came to light "the system" informed my consultant (different hospital of course) who immediately stopped my Imraldi prescription without further ado. No info, explanation or follow up. No alternative treatment. Nothing. Not a call or letter. I only found out by chance as my supplies were just running out. The same consultant now seems to be on holiday.
And inevitably after three months my hydradenitis is now beginning to reassert itself and is really quite painful and unpleasant. And it is getting worse. It now bothers me more than the cancer which I had a radical nephrectomy for with no sign of mets, so far, touch wood. Plus of course I can not help wondering if the Imraldi contributed to the cancer in the first place. The public research is rather confusing and ambiguous about the risks.
All in all this is a very troublesome situation
UPDATE: 20/9/2022
Spoke to dermatolgist now. In general they do not suggest employing Imraldi in anyone with any kind of known cancer risk. But there is a significant lacuna in the data because obviously no medicine is ever tested or trialled against any impaired demographic so really they do not know what the precise risk is if any. But knowing the mechanism by which the drug works, which is to alter the immune system; they do not normally recommend it but are willing in my case to let me choose. Ultimately it is a team decision. Me, Consultant and Urologist.
Facing cancer with obvious possibilities of future mets, unless my hydradenitis gets very much worse I am clearly unwilling to add to my risk factors at all. I don't blame them for pulling me off Imraldi right away but I do blame them for not discussing it with me any earlier.
I am posting this because possibly other patients may be faced with the same circumstances.
