Experiences with

Clodan

being referred as no other medication or iloprst infusion worked. Norther Ireland based not sure if it's day patient is it like iloprst 8hr drip over how many days? Wasn't given much info .Any info would be great, dread it to be honest, also suggested I go on steroid tablet not keen either, mixed connective

I am posting this from the consideration that information is empowering, and in this case is full of caution. It is from a physician deeply involved in the fight to care for Seattle COVID patients. It is not a controlled study and has no statistics. Rather a first-person perspective on how this is unfolding

I had a 2weeks treatment of flolan infusion which ended on friday. I noticed a small pimple on my left jaw line on thurday and noticed another one on my chick on friday after my last infusion. I felt it might just be stress after the last treatment. But Saturday every thing was ok when I just decided

Hello all In February i started having a flareup. My fingers became very painful, i had diarrhoea, so i contacted my dr who immediately asked me to come into hospital and be admitted for a flolan infusion. I already had an appointment to have the infusion at the day unit (SMDU) Manchester. My experience

I have been very unwell nearly a month and am waiting patiently for my flolan infusion. But am struggling so much with my dry mouth down to my throat is dry, painful and tight. This mean that i have lost my voice. The voice loss can come anything. But lately under my neck is swollen. My mouth is so dry

Hi all! If have noticed in my last response to Coco about my feet pain, i have been struggling. I took my son out for his birthday last Saturday and that took abit out of me. Then Sunday i was so keen on houvering the house. Since i have been trying out my new light weight houver. I also helped my son

Hi can anybody help With the Flolan treatment I have just had a five day course at the local hospital as a inpatient The Question i have ' is Does anybody have this as a outpatient . Its all pretty new to me . The first year of Crest and Raynaurds. I'm hoping that i can do this as outpatient in the

Hi all I just want to know how anybody has coped with the pressure of being in benefit. I want to be healthy again, get a job and become independent. But whenever i try to explore or practice that independence, i have to look over my should incase someone goes to report me that i am not disabled enough

Has anyone had flolan infusion to dilate blood vessels, and if so how effective is this treatment.

I just got home from an admission. I had a flolan infusion which i stay for 5nights. This is not the 1st time am going into hospital for this infusion so am a regular in this ward. This last infusion was horrible, the way flolan is administered the infusions is very continous. When one tube is finished

Hi reading your story about Iloprost Im from N.I. & couldn't tolerate Iloprost so I get Flolan infusion instead I get it for 6 hours for 5 days & it is much easier to tolerate. I now get it every 3 months for my Raynauds & Scleroderma.

Hello everyone How are u all doing? As the title of my post say am about to start a new treatment on monday called beliumumab or belysta which is a biological treatment. On tuesday i was able to get an explanation of the use of the term chemotherapy in relation with lupus treatment. Good enough my mum

4weeks ago I started having discomfort in my tummy. It is not a sharp pain, it feels like every thing in my tummy are twisting and turning. It can start at anytime. I can wake up in the middle of the night and can't go back to sleep becos of the twisting and turning. At first I thought that I could manage

First week our the way. Had illprost aka flolan which opens up the blood vessels. Wait and see what the next few weeks are like, if there is any improvement on these dreaded ulcers on my feet. Just started taking daily injections to prevent blood clots......something else to add to the list of meds lol

Hi guys I am gong into hospital next week to have to have flolan. This will be done by IV and will have to have it every day for a week. This is another attempt to try and heal these ulcers on my ankles. I feel like an experiment sometimes. Will keep you posted. Treatment starts Monday.

Hi I had rituximab which has not worked unfortunately. My consultant is suggesting I try aavaa which is a combination of asprin, antibiotics, flolan and someother stuff! As anyone tried this? I have tried every dressing imaginable. Using iodoflex at the moment. Keeps ulcers clean anyhow.