Illoprost infusion

[Dka48]

Hi I'm due to start illoprost infusion soon, have systemic scleroderma etc , wondering how others thought to the out come of it if this don't work been told could be chemo ? X

[Hidden]

I've been offered the iloprost infusion but scared to have it. I do have severe Raynaud's but thankfully not scleroderma. Keep us updated please as I am curious to know how it goes for you.

[Dka48 in reply to Hidden]

I will do, been doing some research and ill be honest more negative than positive, but its by request from proffesor Denton at the royal free in London so will go ahead what ever xx

[Hidden in reply to Dka48]

Wow impressed - good luck.

[Dka48 in reply to Hidden]

Thank you xxx

[Skwiglee]

I refused it. Instead, I have gone on 2 blood pressure meds. And I also have Natures Best ginkgo, cinnamon and ginger. Which all work really well. Good luck!

[Dka48 in reply to Skwiglee]

Oh right ok, can I ask why did u refuse x

[Skwiglee]

Apart from the fact that I'm not a big fan of needles. I like to use natural methods where I can.

[Dka48 in reply to Skwiglee]

Well must admit I'm not either but coming up to my fist year of being diagnosed sill having bloods taken every week, so kinda use to it now,I live in cornwall and the disease is quite rare down ere but thank you I've got bloods tomorrow will chat o doc and see what he says thank you xxxx

[Skwiglee]

I hate having bloods done. I have to have them done on Thursday as they couldn't get blood last week. I have very few usable veins left xx

[KatyP]

Hello there, I'm currently in my iloprost week at the moment, having a week's treatment every 6 months.

I know it sounds dramatic but iloprost has changed my life. Previously my hands were useless, particularly in the winter and I'd have ulcers which often became gangrous resulting in the removal of one finger nail. Now, I can do almost anything from using a front door key to counting money and doing up large buttons. I've not had a single ulcer since starting it and my breathing has improved due to the increased blood supply to the lungs. I should have added that I too have systemic sclerosis.

As you can tell, I'm a huge fan. X

[Daisy23]

Hi - I have systemic sclerosis and also have iloprost every six months (well, I'm about to go tor my third six-monthly five-day treatment) at the Royal Free.

I'm finding that the combination of the iloprost infusion and other medication (Nifedipine) is making a significant difference. The horrible cuts and splits on my fingers aren't nearly as bad and while I still have Raynauds attacks frequently, they feel less severe and pass more quickly than before.

Last time I was there I spoke to someone who has been having Iloprost for years and they said that they notice a cumulative effect, in that having it regularly gives a long-term improvement that you might not notice after just one round of the infusion.

Anyway, I find it really helps me. I'm no big fan of needles either but the staff are very experienced and it's not too bad. It can make you feel a bit unwell while you're having it but the medication they give you for sickness and headache really helps and I always take it before they start the infusion each day rather than waiting to feel ill before asking.

Everyone's tolerance to Iloprost is different but I can read and doze my way through the treatment and generally feel okay - it's a small price to pay in my view!

Good luck with whatever you decide to do

[Dka48]

Thank you so much for all your input , it really does help, am please to learn Katy p and daisy23 have had improvement too, I will take treatment that is offered and hope my outcome will be as positive as some of the results u guys have had , thank you xxxxx

[Skwiglee in reply to Dka48]

Hiya! It really is a case of each to their own. I just know that I know my body better than anyone else. Including doctors! I wrote a blog on the alternative methods I have/are using. My digital ulcers were down to bone level. My specialist wanted to amputate. I used Aromatology and I have 10 healed fingers. I'm very interested in Quantum Physics and the way the body works. Hence, I steer clear of anything invasive. Good luck, and at least you know it's not your last option

[living-the-dream-ssc-ray]

ew Iloprost ! I have had 3 infusions in the past and promised myself never again ! as the side effects for me were horrendous ! There have been a few posts and blogs on Iloprost, on this site, over the last few months so check out the archives ! I think it is a marmite thing ! but if it works for you - happy days as the next alternatives are more hard core ! Or the natural alternative of staying indoors over the winter - which is what I do ! You are very blessed to be under the care of Prof Denton, as indeed I am x

[Dka48]

Hi this is where it's complicated, ill try almost anything if it means my quality of life is a little better, just in my first year of his diease that came on so suddenly over the period of 4 months, this is my first winter wow has it been hard for me, the only time I went out is for appointments docs hospital etc, I shall try for one session to see how it goes, and yes I feel very blessed to under the care of prof Denton xxx

[MrsH]

I am in the US. We have inhaled iloprost here, for pulmonary hypertension. I inhaled iloprost six times a day for three years and my lung blood pressure, which should be 25, went from 75 to the 30s. I became able to climb stairs and walk 500 meters in six minutes.

[Dka48 in reply to MrsH]

Wow that great Mrs H , clinb stairs and walk 500 in six minutes amazing I'm taking lots of notes for my next appointment specialist thanks xx

[bloo]

Go for it, it's amazing i go every 3 months and with amlodypine and sildenafil I'm doing ok,was supposed to be having chemo next month but as I'm responding well to these meds, its been put on hold.

[Dka48 in reply to bloo]

Hi bloo good for you am pleased that ur responding well :-)xxxxx

[bloo]

Hi me again...just seen a post earlier about side effects and the "marmite" effect i must admit my first experience was 3 years ago and i'd never felt as ill in my life and vowed never again severe migraine and sickness, i was offered it 12 month later and flatly refused!! However the scleroderma worsened dramatically about 18 months ago and was pretty much told/advised! to try the iloporost again, this time was completely different the infusion was so much slower and at a lower dosage to what I'd had before and apart from a very slight headache and feeling a bit tired I was fine, as i mentioned i now go every three months and am coping really well, good luck!

[Dka48 in reply to bloo]

Thank you once again just need o get this done now xxx

[Yorky]

Hello, I have Iloprost for 6 hours every month. I think it helps a little, there is nothing else on offer (I have Scleroderma). Keep the dose at one you can tolerate and take the antisickness (cyclizine) and paracetamol before starting to feel ill. Best of luck.

[Dka48 in reply to Yorky]

Thank you so much, tha advice really does help xxx

[MInerva]

Hi, I've had Iloprost 3 times already this winter and have been booked in for another because I have several ulcers, one of them is weeping and extremely painful. I don't think Iloprost improves my overall condition but it does heal up the existing ulcers. I've got used to the side effects and the staff at Addenbrooke's are so kind. Just give it a go! Good luck!

[Dka48]

Hi Minerva aww I'm pleased that lloprost is good for you and continues to help with your condition and thank you for the advice xxxxx

[5MILL]

Had it in January I was going to lose my toes and two fingers it has worked for me so far any this drug is not licenced in England for use and is very dangerous good luck and all the best

[Dka48 in reply to 5MILL]

Hi thanks for your input, think I've decided to have a blast as so to speak got nothing to lose , only to feel poorly and I do that most days now anyway thank you once again xxxxxx

[Rp321]

I'm in the love it camp - I hate it during the infusion !!!!!!!

However it works so well for me I can put up with feeling like that for a few days and I actually think I'm either getting used to it or its getting easier.

The first time I had it was the worst experience ever but I think a lot of it was because I was scared and found it scary that this drug was making me feel that way.

Now I more than know what's coming and take lots of DVDs, music, doodle books etc to try and not think about it.

I also don't like needles and to be honest that part doesn't seem to get easier but defiantly doable

Defiantly go for it - for some it really works and maybe that will be you

[Dka48]

Hi kaz thanks for info well seems u got the knack lol, I feel like rubbish most day so if this makes me feel better 2-3 day outta of a week then ill be happy, scary times had plenty of them lately , I'm very lucky although I can longer work , I have very supportive family and grandson that makes this all worth going for, in and out of hospital all the time so no worries there, this in my opinion is doable thanks xxxxxxx

[overnighthearingloss]

I have had ilioprost in the past and it did seem to work. I did have side effects as well in the form of headaches and a redness at the site of the infusion.

I also agree that sometimes slowing the infusion rate makes things more tolerable. If they try to feed it quickly it can be extremely painful.

But I have more recently declined an iloprost treatment and have successfully managed ulcers without it. You can sometimes do this provided you can increase circulation through adequate room heating and pay particular care to stemming any infection. It takes a long time, so dont expect quick results.

[pphilpp]

I have Lupus Yes I have had three infusions now one ever 6 months. My fingers and hands were pretty useless too and although I have had a bit of sickness and quite bad headaches while on the infusion it has helped my circulation