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Blueangel

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Posts: 149
Reply with quote  #1 
Has anyone had the Parsons Instillations or been offered them ?
Does anyone know if they are available in the UK ?

Thanks
ModeratorKate

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Reply with quote  #2 
Hello Blueangel

Here is what our BHUK website have to say.

http://bladderhealthuk.org/bladder-conditions/interstitial-cystitispainful-bladder-syndrome/icpbs-treatments/intravesical-medications

May I suggest you telephone the BHUK office tomorrow, I am sure they will have much to assist.

Kind regards
Kate

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Blueangel

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Posts: 149
Reply with quote  #3 
Hi Kate
I will phone the office tomorrow as very interested in this.

Thanks.
Kiwi_Fairy

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Posts: 65
Reply with quote  #4 
Hi I had something very similar to parsons solution that my gynaeurologist concocted himself (so was only available with him) it was the heparin and licodine as found in parsons solution, steroids and antibiotics. Unfortunately it didn't work for me but everyone is different and it may be worth looking into x
Twiglet21

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Reply with quote  #5 
Whilst talking about instillation medications I was recently told by my Urology nurse there are 2 strengths of Uracyst available on the NHS, a standard strength and a higher strength. So if having Uracyst instillations and not working you can ask for the higher strength version.
Blueangel

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Reply with quote  #6 
My urologist doesn't use Uracyst instillations.
annalouise

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Posts: 16
Reply with quote  #7 
Hi,

I also have something very similar to Parsons, mine is a cocktail instillation of lidocaine, heparin and steroids. It provides me with instant relief as the lidocaine completely numbs the bladder so I have no pain or frequency which is pure bliss!

I have only had two so I’m not in the best position to judge at the moment, however they have only provided me with about 1 day of relief. My consultant is using them to try and break the pain/inflammation cycle as my condition deteriorated so much, and then I think the intention is to move on to one of the more standard instillations such as Cystitat etc. So for my treatment plan I think they are to provide temporary, instant relief for a while before moving on to something longer term to restore the bladder lining.

These types of instillations are much more common in the US where the GAG replacement therapies aren’t readily available. If you go to the IC Network forum and look under instillations you will find lots of stories of people who are using instillations with the same drugs as Parsons. You might find it useful to have a look.

I think anything is worth trying.

Anna x
Blueangel

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Posts: 149
Reply with quote  #8 
Hi Anna
Glad to hear that you are getting some relief. I would gladly accept a few hours relief.
My urologist only uses IAriul instills. I will ask when I see him in November.

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