Iloprost intravenous infusion

[paula-moo]

I am struggling with secondary Reynaud's (undifferentiated connective tissue disease) and my fingers/hands are swelling so badly during flares and are causing me terrible pain. It does not seem to be related to cold weather conditions as I get it during warmer weather too. I am on Hydroxychloroquine but have been unable to tolerate Losartan or nifedipine tablets. The consultant has suggested a 5 day Iloprost infusion via IV. Has anybody else had this and if so was it effective? Were there many side effects? Many thanks.

[Kc_1411]

Hi for me the side effects were very severe ( dizziness sickness general tirdness) you will have to take anti sickness tablets along side treatment and have blood pressure checks regularly.

In the long term I found it really does help you will not feel anything immediately I now go every year for treatment.

[paula-moo in reply to Kc_1411]

Many thanks for your reply

[JayneO]

I had my Iloprost last week, I agree that yes the side effect are not particularly pleasant, but think long term the benefits out weigh the side effects. My hands are already much more flexible, and not as cold. I have Iloprost yearly.

[paula-moo in reply to JayneO]

Thank you for your reply

[GlasgowHen]

I have iloprost for 3 days every month. It has made a huge difference to my hands and feet,they are more flexible and winter is a bit more manageable. If you do a search on this forum you will find a lot of posts about iloprost and the varying experiences. The rate of the infusion can be adjusted if you start feeling rough or your blood pressure drops.they also offer pain relief for the killer headache and anti sickness. Well worth trying it, hope it goes well for you

[paula-moo in reply to GlasgowHen]

Many thanks for your reply

[pino99]

Hello,

I have only had one illoprost infusion as things became controlled after that and I now take 25 mg of losartan and a baby aspirin. I had no trouble at all with the infusion, did not feel a thing although I was ready for the awful headache it never came. Good luck

[paula-moo in reply to pino99]

Thank you. I am glad that it seems to be working for you

[LucyJean]

Hello there, the iloprost infusions are for Raynauds. The aim is to improve the blood flow to the periphery...i.e. your hands and feet. If the pain you experience in your hands is related to poor circulation then the infusion may help with this but, it is not designed to influence pain caused by swelling related to scleroderma. In fact if the blood flow to your periphery is improved then it may actually increase swelling in your fingers. The aim of other medications/treatments is to control the actual disease process itself e.g. immunosuppressant therapy, or to control symptoms such as pain killers, steroids and so on.

I hope that makes sense and helps you understand if Iloprost may help you. If you have responded badly to the Losartan and nifedipine it is likely that you will have adverse effects on the iloprost. Many people get headaches, and nausea and require pain relief and anti emetics during the procedure.

All my best

Lucy x

[paula-moo in reply to LucyJean]

Thank you for your detailed reply. I wasn't aware that it may not help if the pain and swelling is being caused by scleroderma and so that is helpful to know. I will discuss this with the consultant before deciding if it is worth going ahead with it.Thanks again.Paula x

[marilynmcl in reply to paula-moo]

Hi, I have been in for these infusions...I was in for three days, my blood pressure was monitored and all was well, no side effects at all. I had to go for these infusions as my fingers were turning black and splitting at the top so gangrene was definitely an issue ...my hands and fingers still swell and are painful but not because of Raynauds...my joints and lungs have been affected with Systemic sclerosis so if you are wondering whether you should go in for these infusions if it is just for swelling and pain and not because your circulation is bad on your extremities...it is up to you, I didn't have a choice I just didn't want to lose my fingers..good luck and hope all turns out okay for you pet.

[paula-moo in reply to marilynmcl]

Thank you for this information. I'm sorry to hear that you are still suffering so much. My circulation is bad and my index fingers turn black at times and I get blisters and ulcers but I have been lucky so far that they have not yet split open like yours.Sounds awful for you.

[marilynmcl in reply to paula-moo]

I think then that the infusions would be very good for you.....you don't want to lose any fingers! xx

[rosella24 in reply to LucyJean]

Iloprost is also given for scleroderma.....

[ainep]

Hi paula, I've had iloprost infusions for years . I do have side effects- nausea headaches tiredness. but the infusions get me through the winter. The nurses will give you paracetamol codeine and anti sickness- Take all that is on offer. I was usually admitted for the infusions but last year i was a daycase which was much better for me. i needed to be brought and collected each day I wouldn't manage driving. I'm hoping not to need it this year because I was started on sildenafil in feb and that seems to work much better for me. No digital ulcers or digital infections this year. Good Luck. Anne

[paula-moo in reply to ainep]

Hi Anne, thanks for your reply. Good news that sildenafil is working well for you. Regards Paula

[rosella24]

I have been having Iloprost infusions for 20 years. I have always tolerated it very well, just needing the occasional paracetamol for a headache and a very occasional anti nausea pill. Everyone with scleoderma and raynauds is different aand may not be so lucky, but why should you be unlucky?! The benefits are huge. I feel better on the whole and my joints are more flexible after the infusions. The benefits are not instant -- they can take up to a few weeks. |But do go for it, nothing ventured nothing gained. And the medical staff are just super, very kind, very sympathetic and always helpful. Hope it goes well for you.

[paula-moo in reply to rosella24]

Thank you so much for this.I think that based on what people have said that I will give it a try.