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Skin improvement after Iloprost


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#1 Vanessa

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Posted 04 March 2010 - 10:22 AM

Have many of you folks noticed skin improvement after having an Iloprost infusion?

I am having my first in a couple of weeks and wondered if many people had benifitted in this way.

Vanessa

#2 Amanda Thorpe

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Posted 05 March 2010 - 05:20 AM

Hello Vanessa

Well it's hard to say really, my family would say yes but I'm not sure. When in hospital having Iloprost my husband and sister, who were with me all day every day, said that my mobility improved even after a few infusions. For my mobility to improve my skin would have to have softened as it was the tightness of the skin that effected my mobility back then.

I only even had one round of Iloprost as well. A lot of my skin has softened now, unfortunately not in the crucial places like hands, feet, calves, and seemed to soften as quickly as it came on. have no real way of knowing if this was Iloprost induced or just my disease progression.

What I do know is that you should give it a go as it may help you, some people think it's fantastic!

Take care.
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#3 Vanessa

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Posted 05 March 2010 - 10:38 PM

Thanks for the reply Amanda.
I remembered you saying before that you may have had some improvement but others have talked more about the benifits with their Raynauds.
Is there any chance of moving this to the main forum?
Thanks
Vanessa
also - do I need to take towels to The Royal Free- thinking of that rush hour train ride where its every man for himself and wondering how big my luggage needs to be!

#4 Amanda Thorpe

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Posted 07 March 2010 - 06:57 AM

Hello Vanessa

As you can see I've moved the post to the main forum. Yes you will need to take towels with you, try not to take too much stuff though as you won't have a lot of room on the ward to store it. In hospital no one cares what you look like trust me, when I was in it was the one place where I didn't give a stuff what I looked like! It's the one place where you can legitimately sit around with greasy hair a pasty face in a pair of pajamas. It's much more important to be comfortable and when you come to leave you won't want to be faffing around with loads of bags that you have to lug home and then unpack. Make it as easy on yourself as possible.

Take care.
Amanda Thorpe
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#5 lizzie

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Posted 07 March 2010 - 12:35 PM

Hi Vanessa, I just got out of hospital (but not the Royal Free) this morning after 5 days of IV Iloprost. I've been having it for the last three years and my skin has definitely softened- but is hard to know whether it is due to the Iloprost, the immunosupressiion that I'm on, or just the natural disease course. My rheumatologist however is firmly of the opinion that Iloprost can soften skin. I'm with Amanda on the dressing for comfort. This is what I take with me:

Toiletries, small packs of tissues and a minimal amount of makeup (lip gloss and concealer for the very red nose)just in case there is a really hot doctor!
2 pairs of PJ's (I make sure that they have sleeves that are loose enough to fit the iloprost syringe and tubing through as I have it going 24/7)
slippers
Lightweight dressing gown - although frequently never wear this
Pashmina type wrap - I find that I veer between being boiling hot and freezing cold and can't get dressing gown, jumper/cardi on and off easily when I have the iv up
1-2 pairs of elastic waist exercise/track bottom type trousers (I like to get dressed in the day)
2 lightish weight tops (same rule as PJ's re the sleeves)
2 camis/vests to wear under the tops
enough knickers/bras to wear for duration of stay (I take an extra pair or two in case I end up staying longer which has happened on a a couple of occasions)
Books that don't require a lot of concentration (its not the time to read War and Peace)
Specs
Mobile phone-good for issuing orders to those at home and eliciting sympathy from friends-can even take a picture of your suffering self and send it!
Small radio and headphones
iPod
My medication - patients are encouraged to self medicate on the unit I attend, also they don't always have the medications I take in stock on the ward.
Supply of oatcakes, dried apricots etc- last meal of the day is 5.30pm and breakfast is not until 8.15 am and I find that I feel really nauseated if my blood sugar gets too low
Pen - for filling out the daily menu.

the unit I attend supplies all towels - but sounds like you will need them at the Royal Free

The first time I went in , I took far too much stuff. As Amanda says there is little storage space, also I find that I quickly cease to care much about what I look like. Iloprost is not a beautifier thats for sure - it gives me red face, puffy bags under the eyes and puffy ankles and makes me feel very lethargic, so spent lots of time lolling on the bed.

Hope your stay goes OK
Lizzie

#6 Vanessa

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Posted 07 March 2010 - 10:36 PM

Thank you so much for the advice. That is so helpful.

Vanessa