Hiprex (methenamine - oral, Mandelamine, UrexHexamethylenetetramine): anyone?

[Barnclown]

My consultant urologist tells me hiprex is our fall-back treatment re the way we're managing the chronic issues involved in my various chronic urological/renal conditions. Nearly a year into finally tackling these lifelong problems in a more concerted manner, the treatment plan immunology+rheumatology+urology have put together seems to be effective, but winter is when the sjogrens aspect of my stuff tends to cause infections to get hold. So am just feeling I might as well try to learn a bit about hiprex, and especially whether anyone has taken hiprex & how things went...

[babssara]

Hi Barnclown, I am going to follow this post with interest as I do not yet know complete diagnosis, all scans xrays abd bloods withh have been completed by next week and see urulogist on 6/10. So I've no idea what outcomes/treatments will be.

Hope you are staying well. Take care. Babs x

[Barnclown in reply to babssara]

Great: glad things are moving a long at a decent pace for you👏👏👏.

For what it's worth here is what we've come up with following on from the past 4 years of my medics realising my chronic urological stuff involves pyelonephritis and early onset immunodeficiency and so really needed to be throughly investigated in order to get a tailor made treatment plan in action:

early onset Sle + sjogrens going without daily systemic treatment most of my 62.years life, has made my soft tissues highly reactive & prone to inflammation, which sets me up for infections and also, in my case, has ready caused one malignant cancer of the connective tissues (the chondrosarcoma). These conditions are affecting my urological bits exactly the same way they affect all my other 'holes & tubes': GI system, eyes, ears, nose & sinuses, gyn bits etc. And this (+ my age I guess) is mainly why hospital depts dedicated to each of these body systems continue to see me annually checking my condition and bring duly vigilant re early signs of cancer. All this has brought on interstitial cystitis (my consultants explained This is aka urethral syndrome, abacterial cystitis, painful bladder syndrome). Finally, my early onset immunodeficiencies make me predisposed to the "persistence pattern complex urological & renal infections" it turns out I've been experiencing since my mid 20s. Harrumph😤😤😤😤😤😤😤😤😤

And here (again: for what it's worth) is as much of the treatment plan as I've processed into words since yesterday after the consultation;

-Interstitial cystitis to continue to be managed with lifestyle techniques + pain killers, muscle relaxants etc but without pilocarpine, for the reasons I've posted above

-persistence pattern complex infections to be handled via home tests + lab sample microbiological tests. And managed with prophylactic nitrofurantoin + long course (2 wk) high dose co amoxiclav 625mg antibiotics held at home for emergencies. If infections get going persistently again this Autumn/winter, Hiprex is our contingency plan: it turns pee to formaldehyde which helps prevent infections & it's not contraindicated by my other meds. But I am now considered low threshold re IV antibiotics for any sort of stubborn infection too.

Probably this is much more than you want or need, 😁😁😁😁😁but maybe something in there can be useful?

XO🍀🌻

[babssara in reply to Barnclown]

Hi Barnclown - very useful. Will write a long PM tomorrow - too tired now as I expect you are too tired to read it anyway. Lets keep smiling!(when with medics falsly ha ha). Babs x

[littleeffie]

Hi again,

No idea re post just hats off to you as I do not know how you keep it all together and remember everything said ! Think I need some organizing tips from you 8)

Another full week?

Effie

[Barnclown in reply to littleeffie]

😄good one effie! I promise: keeping track of my stuff drives me batty😜😜😜...have several big stacks of file boxes, at least 1 box for each clinic and for every appt I prep notes based on the previous appt' notes...I print these with gaps in the notes do I can jot in what the consultant says. Afterwards I give myself a few days to get over the PTS (post traumatic shock) of yet another fraught consultation...then I resave the original appt notes doc as a debrief doc, typing into it the notes I'd jotted down during the appt. Then I do a brief summary for my gp's consumption, and these GP summaries have their own box file too. Oh dear: you didn't ask for all that: EEK: but am feeling contemplative this evening....hmmm: well, during my long office career I had to organise the management & coordination of complicated projects, ...then the unrecognised lupus forced me into early retirement...and I sort of flip flopped over to managing my own health stuff as obsessively as I had stuff at work...except in the office I had assistants who were really good at stuff like filing! Plus since the early '80s when my version of cog imp (cognitive impairment sounds better & means more than the cosy term brain fog) began to get really serious, I'd been forced to figure out ways to compensate for cerebral disability: and became an obsessive list maker...and, since the lupus region diagnosis, my list making compulsion has help me a lot with all this coordinating. But it IS hard, sweaty work😨😨😨 and laughing 😅😅😅at my efforts feels better than crying keeping...so I try my best to keep my sense of humour in good form

I am not a tidy or systematic person...am scatty as Anything 😖😖😖😠😠😠😤😤😤but once I realised my GP wasn't able to reliably/consistently be my patient advocate, let alone coordinate all my various clinics' stuff, fear + desperation Drove me to knuckle down & at least try to be my own coordinator & advocate.

Am sure you do the same. But you're a mum, and are doing this for all the family and yourself too, right? So, I know I have this easy....but it never feels easy for me...and my box files are always at least semi disorganised, notes & reports stuffed in silly nilly which tempts me to feel insecure, but I tell my self: calm down dear! At least everything relating to each clinic IS jammed into the dedicated flipping box file!

The most reassuring thing, is that all the appt notes & debriefs are on our computer, safe & sound. (My husband is vvv tidy & organised...he runs the computer and does everything v efficiently: computer back ups etc. But he Won't get a scanner😔😔😔...I wish he would, cause then I could scan the clinic reports, my blood & other lab results and keep them safe on the computer too..so, 😈😈😈 am working hard on getting that scanner before long❗️

Enough already....time to eat

XO🍀🍀🍀🍀👋👋👋👋

[babssara in reply to Barnclown]

Great reply Barnclown, I to am getting OCD too, before july used to count everything I did, including oicking up each individual leaf. Since july counting stop, but obsessive about keeping records.

Tip: Get a printer that copies and scans, so little effort and priceless. That is if you have not already got one. Babs x

[Barnclown in reply to babssara]

Haha: OCDers Unite❗️

I know I know😤😤😤and he knows too: today's affordable, reliable printer scanners....but he just doesn't rush into stuff (I ADORE HIM, HE IS MY HERO...and over our 30 yrs together, I've learned that his way does have advantages....). And setting up manual systems before going digital has always helped me understand what I really need from a digital system...at least this is what I tell myself after the "calm down dear"

XO

[littleeffie]

Thhaaaaaannnkkss!

I feel so much better now.8)

It's always the fatigued shove it in the top file box til tomorrow that lets me down especially after a week of mine and kids various clinics mean two weeks of tomorrow's shoved in mean a long haul sorting out.

Ah well eat and be merry for tomorrow is another file box

Take care

Effie

[Barnclown in reply to littleeffie]

👍👌😘🎶💃🎉😴😴😴😴

(Is it obvious I'm on a pred taper again....for the first time since was told to pause When the infections set in this time last year: am high as a🎈(Can't find a kite icon on my iPad...))