Iloprost

[Anne1966]

Had my infusion for 6 hours a day for 5 days, finished on Friday, has anyone else suffered from really painful joints afterwards, not sure, as this was my first treatment. Thanks people xx

[missgreat_19]

Hi Anne

Where are you reciveing Illoprost?

I recieved it Twicely. And whenever I started to take, my joints become more worse, really get worse, even straggering to walk. Then Prof Denton did not allow illoprost to me again.

I totally understand your feelings

Sidra

[MEW53]

I was on Iloprost several times (6 cycles) while I was in hospital in August 2015 for 8 weeks when I got diagnosed. Then infusions were fraught with problems as I was on the infusions for 6 days continuously for a 12 hour period and had 3 faulty machines in one cycle so the procedures took longer as the drip did not work as the machine kept going wrong. It was a nightmare! As it happens, the rheumatologist decided it was not working, it also made me feel very tired and really unwell and my joints really ached, shoulders, knees, ankles, neck and elbows.

I was them moved onto cyclophosphamide infusions in October 2014 which were better and travelled to the hospital monthly for a 6 hour infusion, then moved onto mycophenolate mofetil in March 2015, which has really helped me and given very good results. The drug makes me tired but it has made a big difference to life, considering I was a normal healthy person until July 2014, then ended up in a wheelchair within a month, but since the mycophenolate I do not have to use it anymore.

Some procedures need time to work and you may not see positive results straightaway. Give it some time and I find it really helpful to keep a diary so that you can feed accurate information back to your consultant. This can work in your favour as sometimes something stands out from the diary that can really help the doctors.

Good luck and I hope this helps.

Margaret

[Hidden in reply to MEW53]

Such a helpful post.

I don't mean to "hijack" the thread. Are there people who responded positively to Iloprost with or without any side effects?

[Rp321 in reply to Hidden]

Yes I have been having iloprost for a few years and it does make a positive difference to me. I'm not raynauds free but it certainly helps. I do get side effects during infusions but it's worth 5 days of rubbish for a few months of making raynauds coapable.

[Hidden]

Rp321, That's lovely to know.

So pleased to hear that Iloprost made a huge difference.

Thank you for sharing. 🍀💐

[GlasgowHen]

I have iloprost for 3 days every 4 weeks. I feel unwell during it but the time commitment and hassle has been worth it. It has made a huge difference to my quality of life,fingers and toes! Whenever my skin starts to breaks down from chillblains and tiny little ulcers I know those three days will help the healing.

During the infusions I'm given pain meds and anti sickness ones,a bed usually in a side room,plenty of blankets and lights off. I have it more frequently than most people and I'm so grateful for it. Sorry to hear about the joint pains, this is a regular occurrence for me but resolves after a few days

[cowhide]

Had my first week of iloprost in Oct, went to full dose with no side effects. I think it helped,although hard to tell as we have had such a mild winter I work out of doors and have had digital ulcers previously.