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Is anyone out there getting iloprost?

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#1 Hilda


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Posted 13 April 2008 - 05:11 AM

Hi I am a new member. I have never used a chatroom before. I am 58 years old and was diagnosed just 16 months ago. I am feeling very much at sea in all this. I have not known what to expect. I have had l problem with leasions on fingersand feet, puffy fingers,Raynauds Phenomena, reflux, water melon stomach, butterfly rash on my face. These are all symptoms I had read about and as they are seen are accepted. What I did not expect was the lack of mobility as if my legs and arms are filled with sand making walking anywhere relly difficult and making stairs a nightmare. cramps and pains in the hands,sheer exhaustionbeen. What is worst is I am not sure how much of this people believe or think I am making up.I take various medicines.. nifedipene, ramapril,omeprezole and have been having four days in hospital every six weeks since diagnosed. After the treatment I have so much more energy and less pain and my mobility is significantly improved. Recently however a new consultant wants to extend time between infusions and when I told him how much they relieved these other syptoms said that was not what the iloprost was for on the leasions and the question my other symptoms as if they were unrelated to my scleroderma. Am I just imagining the other symptoms as part of this condition?

#2 cryslaris



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Posted 13 April 2008 - 05:39 AM

absolutly not. I call it heavy legs. it makes walking difficult especially walking up the stairs. I think it might be due to inflamation in or around the muscles. And alot of people have the "heavy Leg" symptom so I don't know why he would say it has nothing to do with scleroderma. Unfortunaltly, many doctors are to unfamiliar with this disease. Finding an increadibly knowledgable doctor has helped me the most.

#3 Guest_SADIE_*

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Posted 13 April 2008 - 06:10 AM

Welcome to the board! This is a great place for support and info! What you're going through is very normal. I agree with Cryslaris, finding a good Dr. is very important.
Best of luck!

#4 barefut


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Posted 13 April 2008 - 06:18 AM

Hi and welcome Hilda and Cryslaris,

I'm glad you found us here however, I'm sorry it's because you are suffering.

Hilda, I think most of us feel the heaviness you describe. So no, you are not making it up! Stiffness, flu-like achiness and loss of range of motion are just a few of the many symptoms we battle everyday.

Do you see a scleroderma specialist? A rheumatologist who specializes in scleroderma would understand your pain.

Tangelo's post on "Aching all over" has discussion on treatments people are using to battle this kind of pain.

Again, welcome to you both and keep posting!

#5 Sheryl


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Posted 13 April 2008 - 06:32 AM

Hilda and Cryslaris,
I would also like to welcome you to the forum. We are glad you decided to join us. One of the ways I learned to deal with the heavy leg is walking backwards down the staircase. Think back when you were helping toddlers down the stairs when they were learning. You held onto the rail with one hand and kept stepping down those stairs with your other hand behind the child. That is how I continue to go down stairs when I am having a pain day. Going down backwards really helps. Now, you still have to pull yourself up. That is the hard one. I do that a bit sideways. It can be very hard. I have to make decisions on if I want to use the staircase on a given day. Hilda, we have so many maladies that I don't think the doctors know what they are related to. The extreme exhaustion is one that hasn't been figured out. Many of us have severe pain and try to find ways to cope. What works for one person may not work for another. We at least throw out ideas and things that help us so that they may help others. Ask anything you would like answers to. If we can help you we will.
Strength and Warmth,

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#6 Susannah


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Posted 13 April 2008 - 07:49 AM

Hi Hilda

Its so nice to meet you!

By your post I understand that you are having Illoprost infusions every 6 weeks for 4 says, is that correct? I have it once a year for 5 days, but as my disease gets worse my rheumatologist is increasing it to more often. I understand it is suppose to you warm up the body by opening the blood vessels of which I did feel for a couple of days whilst having it, but looking back I realise I havnt had any raynauds flares/attacks for the whole year that make the hands go white and numb under certain conditions. Some people do need this more often and that is normal for them. I dont think there are any rules about how often the treatment can be had, but its between the doctor and the patient.
I see you also have Watermelon Stomach - I do too. Mine has caused me to need blood transfusions regularly and lazer treatment on my stomach. I hope yours isnt that bad! There arnt many of us around with this symptom, so Im always interested in those who do.
I dont know if any of this has helped you but its nice to be able to share experiences all the same.

Take care


#7 jefa


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Posted 13 April 2008 - 10:19 AM

Hello, Hilda and cryslaris - welcome to you both. I look forward to getting to know you both as you find your way around the forums. Hugs to you.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#8 Snowbird


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Posted 13 April 2008 - 12:21 PM

Hi and a warm welcome from me too!
Sending good wishes your way!

#9 lizzie


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Posted 13 April 2008 - 08:50 PM

Hi Hilda, I get Iloprost infusions for 5 days every 8 weeks over the winter and then then 3 monthly between march and september. I have the Iloprost to help with the Raynauds. I don't have mobility or pain issues so can't say whether it helps with those problems. However I do feel more energised after it - but I think that is more due to a week of lounging around in hospital doing nothing rather than the ilopost. The iloprost does help with the raynauds though.

#10 Karenlee


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Posted 14 April 2008 - 12:46 AM

Welcome Hilda,

I am not on Illorpost, but wanted to welcome you to the forums.


#11 Susannah


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Posted 14 April 2008 - 01:06 AM

I asked my rheumatologist last week if I could have Illoprost more often than yearly, as im finding I need it, and he is open to it, so thats great! Anything to help me get through the cold winter months a! :D

Susannah x