Illopost infusion

Just come out of hospital my scleroderma flared up ive been told, so i was put on a drip of illoporost infusion 1 and 2nd 6 hour sessions went well on the 3rd day i was taking off after an hour as my blood pressure had dropped too much but i felt fine, my finger tips are so sore since coming home now gone very hard, and ulcer now appearing which is causing me so much pain , has even kept me awake , is there any thing i can get to help xxxxxxxx

11 Replies

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  • Happy to talk you through it if that would help. You can call me on 07530 810 964 and I can call you back on a mobile or landline.

    AM

  • I feel your pain. I've had iloprost infusions too but they just weren't enough to save my fingers. A picc line and an infusion of prostaglandin over 72 hours works better for me. It's amazing how painful a finger ulcer can be. The blood must throb trying to get through closed arteries. I hope you can get some relief. I've found it's a slow healing process even after the infusions. All the best.

  • Hi am1942 will be in contact soon moving at mo so a bit busy but will call next couple of days thankyou xxx

  • Hi struth thanks for answering ive had this infusion before for 5 days 6 hours a day thr first was bas as they put me on 10ml an hour god i was so ill , the next day kept me on 5ml an hour which was fine so i dont what went wrong this time, it has not put me off seeing my specialist here in cornwall tomorrow to see where we go from here xxxx

  • Does this iloprost help with scleroderma

  • seems to help some more than others. it did help when i started it 13n yrs ago but does nothing for me now

  • Hi tullos 12 at first im tired for about a week and the yes it did help in all types of ways, i seem to be less tired hand and feet stay warmer longer :-) but everyone is diffrent xxx

  • Hi Dka48, I know how you feel, I have only just come out of hospital myself after having the iloprost, and it hasn't got any better, I seem to have ulcers breaking out now and I constantly have blue fingers with extreme pain,I wish I know what else to do to help, please let me know if you do get any answers because iI really am loosing my mind here. I hope you get better though. Good luck.

  • Hi 146 nanab,i certainly will same here so much pain not good:-( xx

  • hi i really feel for you there is nothing more painful and miserable than fingertip ulcers. i have been diagnosed for 13 years now and have lost all my fingertips and recently my left hand. the only pain relief that worked for me was germolene as it has local anaesthetic covered with a light cotton dressing. hope this helps love suzy x

  • Hi suzi ill try that thanks but i have been giving appointment to see a tissue viabilty nurse so ill see what pans out there xxxxxx

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