I live in the UK and I have lupus, Raynaud's and Erythromelalgia. The EM causes me great pain and distress, particularly at night, when the burning pain, heat, swelling and redness are at their worst. My feet are often painful during the day, too, with the same set of symptoms, which makes choosing shoes an absolute nightmare. Chilblains at this time of the year add to the pain.
I have tried Sildenafil (but couldn't tolerate the side effects) and for a while now have been on Amitriptyline (or Nortiptyline), and Pregabalin. So far, nothing has relieved the pain in my feet.
I saw the Rheumatologist last week and he has referred me for Iloprost infusions, starting next week. I'd really like advice about what to expect, about side effects that people have experienced and if they've found the infusions to be helpful. I'm not going to stay in; the hospital is very close, so I'll attend as a day patient Monday-Friday. Thank you all in advance.
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skylark15
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hi sorry your in a lot of pain. Iloprost. Should help.
Now down to business, you will get a headache and ?? Feel sick so make sure they give you cover for this. You will also get facial flushing. Just rest and sleep. And drink plenty of fluids. When you have it.
I had this for years but then went to London Royal free and for some reason became unwell so now they won’t give it to me. I have Systemic sclerosis Raynard’s PAH sarcoidosis etc. hope this helps.
Thank you for your kind response and for your advice and warnings. I shall be prepared for those side effects now, as well as any others that I learn about. My sister, who has much worse Raynaud's in her hands couldn't stand the facial flushing that came with Sildenafil, so she stopped that. I'm afraid she'll have to lose a finger before she accepts tha she needs to explore different medications/treatment. I'll tell her about the Iloprost, once I know whether or not it will help me.
That's something I should have asked more specifically: If I'm having the infusions daily over 5 days, should that give enough time to see if I can tolerate the side effects and begin to see any benefit from the treatment, with my EM? I don't know how often I'll need to go back in for another 5 sessions, assuming these first ones don't knock me for six.
So, Paracetamol beforehand because of the inevitable headache; Ask for an anti-emetic and drink plenty. All really helpful. Thank you.
Hi I forgot to say each day you have and complete the treatment for that day all those side effects go away., how much start again, eventually when you restart it the next day, but after the five days he won’t feel any fixed like that. All the best let me know how you get on.
Thank you again for your help. However, I've decided to postpone the infusions: they were rather "sprung" upon me, by a temporary Rheumatologist who is actually leaving next week, and offered as a "try it and see, it might help" treatment, even though EM is my major problem and the Raynaud's is not so bad. Plus, I have more tests and investigations booked for the next couple of weeks for my GI problems, which I really don't want to rearrange.
This way, I'll have more time to think about the iloprost and weigh up the pros and cons from all the help I've received via this forum from lovely people like yourself. Thanks again.
I had all meds as well gave up as I got no relief also tried flowland and illoprost again little improvement for few weeks now back to square one is it worth 5days×8hrs on a drip for me no felt little sick but not bad slight headache more fatigue little flu like but nothing major just long sit and I had an hours travel both ways so no, at minute I'm not even on any drugs I'm fed up with it all. Keep loosing my nails hands look pure embarrassment. But don't give up try it everyone I'd different and it might work a dream for you.good luck certainly worth a try don't let my experience put you of.
However, I've decided to postpone the infusions: they were rather "sprung" upon me, by a temporary Rheumatologist who is actually leaving next week, and offered as a "try it and see, it might help" treatment, even though EM is my major problem and the Raynaud's is not so bad. Plus, I have more tests and investigations booked for the next couple of weeks for my GI problems, which I really don't want to rearrange.
This way, I'll have more time to think about the iloprost and weigh up the pros and cons from all the help I've received via this forum from lovely people like yourself. If/when I decide to give iloprost a try, I'll refer back to all these replies.
hi there. I have been getting Iloprost for Raynaud’s and EM for 3 and half years, having failed to tolerate sildenafil and nifedipine. It worked incredibly well from day 1 for both extremes and the painful blisters (like burns?) all vanished and I could type, use hands etc for first time in a year. The price was very high initially as my body didn’t like it too much but to be fair my systemic sclerosis was attacking my gut so badly and no one realised the extent of Gastroparesis and slow transit colon so this probably contributed to how ill I felt.
Unfortunately my hospital doesn’t have same Iloprost protocol as Royal Free or others so I find it’s treated by nurses as a bit like lidocaine and no BP or heart monitoring over the day - and I have to remind them that I need IV Cyclizine as pre med. I take my own paracetamol and codeine before leaving home as need most meds in liquid or capsule form. I was getting it over 3 days which is the norm here. During the pandemic I attended a further away hospital and stayed over, having had a pretty horrrd time first round with vomiting and storming headache - but it was admistered during a heatwave in June!
The overnight stays were better as I had my own room. But as soon the pandemic started to ease and lockdowns stopped they moved me to my larger local hospital where I’m now a day patient. Here they tend to be under-staffed and down to one 6 bay day ward during winters so all on recliners or chairs and it’s very variable re nursing care. I asked for portacth but that went wrong so now I’ve switched to one day a month because my veins can’t cope with cannulas and start to swell and throb after a few hours. Too often the nurses ignore the alarms telling them to increase dose meaning more time wasted - so I end up begging for first canulla to be removed even though it appears to still be running fine - but I know it’s not going to last the day. So end up with 2 cannulas per day after about 6 attempts and then they always turn it off before the driver is empty so I’m not getting full quota. I still believe it prevents the painful blistering of EM and the ulceration of Raynaud’s so I’d like to carry on but sense it might not, the way things are going for me.
Re side effects I drink a lot and the IV Cyclizine as pre-med really helps and never been really ill as I was first time round - just a facial flush and headache mostly affecting my jaw. So I’d happily carry on if I had portacth and was getting the full quota because I feel it’s very effective for my Raynaud’s and EM. Take light nibbles and an eye mask, ear pods if you can bear, drink loads of water or redbush tea, decaf coffee (I take my own flask and tea bags) throughout would be my recommendation. Best of luck!
Thank you for your kind, comprehensive and helpful reply.
However, I've decided to postpone the infusions: they were rather "sprung" upon me, by a temporary Rheumatologist who is actually leaving next week, and offered as a "try it and see, it might help" treatment, even though EM is my major problem and the Raynaud's is not so bad. Plus, I have more tests and investigations booked for the next couple of weeks for my GI problems, which I really don't want to rearrange.
This way, I'll have more time to think about the iloprost and weigh up the pros and cons from all the help I've received via this forum from lovely people like yourself. If/when I decide to give iloprost a try, I'll refer back to all these replies and refresh my memory on what I might expect, how to prepare for it and just as importantly, what to take to occupy and comfort myself! Thanks again.
Sprung is not good I fully agree Tess. I’ve just had a long phone chat with someone who’s a retired nurse and we talked through my Iloprost experiences and I think I’ll probably have to quit due to my fragile veins. I had Iloprost sprung and it panned out okay but had a portacath sprung on me last year and it was a disaster. The year before that it was IViG for my severe GI involvement and that was similarly disastrous.
We autoimmuners are often chemically and psychologically sensitive souls and need plenty of time and discussion to make fully informed decisions about these things. All I’ll add is that my Erythromelalgia is now quite well managed apart from when the temperature swings from cold to more warm and humid. Prior to Iloprost I would have said that my EM was worse than my Raynaud’s but now it’s the other way round. I’ve no idea whether this is due to Iloprost or because my scleroderma is progressing or perhaps due to major unintentional weightloss. Perhaps my small fibre neuropathy /EM has stabilised at last along with my Sjögren’s with Mycophenolate. I think probably a mix of all of these. Have you tried Losartan I wonder? I take 100mg daily and I often wonder if this is helping prevent ulcers and EM as well as controlling my hypertension. Just a thought. X
Yes. The more I thought about it, and read people's replies and looked for evidence, the more uneasy I felt. I will keep it as an absolute last resort, like an ileostomy for my very slow transit bowel 😧.
The pain consultant has aske my GP to prescribe Butans 5ug patches and suggested that I increase the Pregabalin, too, to see if these tweaks will dampen down the EM.
I'm glad that your EM seems to have quietened down and I hope having to stop the iloprost doesn't start it raging again 🤞. I read your account of the portacath disaster, and before that the IVIG exerience; wow you must be a real stoic, to stick at it throughout these problems. I don't think that I could have coped and I have always thought of myself as strong and stoical. You're in a whole different league!
I do take Losartan (75mg at the moment, for both Raynaud's and latterly because my BP has crept up. Once I have the time and energy, I will take a week's recordings to the practice nurse for the review that should have happened several months ago...Maybe the dose will need upping again.
Thanks - I don’t feel particularly stoical - starting to wonder if I’m just a glutton for punishment?!! I just don’t want to go back to not being able to type or write for pain EM/ Raynaud’s again.
And yes I feel same as you about pushing for illeostomy - but I can’t hack much more of the consequences of slow transit, incontinence from heavy duty laxatives daily and time spent using the more invasive irrigation system daily. It all takes such a toll doesn’t it. So I’ve got a consult mid March with a senior colorectal surgeon/ consultant to ask about biting the bullet. If she’s as off putting as all the others have been then I’ll just resign myself to a life on or near the lav!!
The one bonus about Iloprost is that it’s an opportunity to listen to others and where appropriate, share notes. A woman with MS showed me her stoma bag and said it’s a bit hellish due to huge hernias but she still wouldn’t go back to where I am presently if given the choice X
Maybe you are 😅! But I'm really glad you've had benefit from iloprost.
I've tried laxatives of one sort of another but I just couldn't cope with the consequences, exactly a you describe. And I have used an irrigation system but it takes at least an hour each time, setting it up then dismantling and washing it (and myself!), which is time I'd rather spend on something else. Consequently, my bowels don't open for 5-7 days ( oooh the pain of the distended abdo 😟) and then they randomly choose to open, with very little notice and often late in the evening and thereafter, several times over the next couple of days. I call them my days in lieu.
I was actually looking forward to meeting people having infusions at the same time and I'm interested to hear that "terrible" stomal hernias are still better than what the woman was going through previously, because it was the certainty of a hernia that finally made upy mind not to have a stoma. And whereas I used to have no belly at all, with the loss of tone of my abs, I now have a permanently protruberant belly ☹️. More likely to develop a stomal hernia . You, however, with the weight loss and no muscular dystrophy, might be less likely. I wonder if that's the case? That'll be a question I'll put to my colorectal surgeon at my next review. If so, definitely worth diet and abdominal muscle exercises for me.
Keep us posted once you've seen the comsultant surgeon.
Well we do have a great deal in common despite your MD and Lupus v my systemic sclerosis, Sjögren’s and EDS! Unfortunately I’d never been able to go at all without laxatives. I tried it early during pandemic when a young colorectal dr phoned and advised a very high fibre diet instead. Wow that was a nightmare - neither of us knew I had Gastroparesis and all the fibre formed a massive bezoar and I literally didn’t poop at all just started vomiting and stopped eating.
Finally my rheumy phoned (I’m pretty sick of phone reviews now really!) and heard my account of symptoms and referred me for a gastric emptying scan. Well I couldn’t even keep the radioactive scrambled egg down so it took many hours and that’s when they found out how severe my dysmotility really was. Same with colon transit study same year. First time i tried this irrigation thing i fainted with pain and learnt after that it had almost caused a perforated bowel, I was so blocked up further along. I huge bled black coffee grains for a week or two and vowed never to try again. But one of their company nurses came to my home and held my hand in spirit from just outside my bathroom having done a DRE first to check six months later and I’ve used it daily ever since. Hate it so much though. the mess and the time and just the ugh if it!
Hmm not sure about herniations I think they are very EDS too. My belly was severely stretched by 3 too large babies and is a thing of horror to behold. If I do get an illeostomy I may just beg her to add in an apronectomy! It was less appalling when I was obese in many ways - now just a vast bag of hugely stretch marked cellulose minus the adipose padding. I’m underweight with lots of baggage!!
Not sure as still new to the idea but I think EDS probably accounts for much of this for me - plus both types of prolapses. I guess it can’t all be scleroderma for me because even age 10-11 I was hospitalised with severe bowel impaction that must have been related to a short spell of co-codimol I’m guessing. I recall hearing this friend of my mum’s who was babysitting phoning her and saying he was taking me to hospital as I was vomiting poo - it was even coming out of my nose! 🤢🤮. I was so mortified words can’t begin!!
If I don’t use the irrigation system and laxatives to go daily then I stop eating entirely, get massive Gastroparesis flare and start vomiting. And I’m phobic about vomiting and not can’t process solid foods or veg or any fibre so the tail end exit wins each time!
Anyway you describe the irrigation process I’m about to undertake now to a tee! I have an urgent MRI of neck at 6.05pm. Can’t think why it’s at this strange hour but can’t risk having accident in the dreaded tube so here goes!! 💩🥴😂xx
Oh my goodness! My GI problems pale into insignificance compared to yours. I can picture that poor little person wishing a) that the floor would open up and swallow her and b) that somehow the pain and the poo vomiting would stop. Poor you. And all downhill from them on, by the sound of it 😟. Still, possibly better downhill than up...I cannot imagine the pain of such total gastroparesis and impacted bowel. I have only ever once had to endure a manual evac ( or "digging for gold", as a retired nurse described it, on the Graham Norton show a couple of weeks ago). Never again, I hope.
Thanks so much Tess but MD must be pretty tough to live with and anyway I’ve never been a subscriber to hierarchies of suffering - I’m sure you’re the same.
With undiagnosed as kids, in a way it’s a blessing I guess because, unlabelled, we just assume that it’s just how things are. I recall night 3 in hospital on a London kid’s ward. I felt too old at nearly 11 or 12, surrounded by sick infants and toddlers. But there was a boy my age who was also in under observation for appendicitis. And after my bowel impaction had been discovered and my mum spoke about my chronic constipation far too loudly to a medic, I so remember the pain and wanting to bury my head under the sheets and never emerge again. The boy had actual appendicitis and was duly wheeled away and I couldn’t even make eye contact to say bye to him. Weird how these dark moments live with us for all these decades. I do seem to have had history repeat itself many times since, although of course with major variations on a theme!
Ha I heard the “digging for gold” red chair story too! I had a hilarious time some years ago when in hospital misdiagnosed with a UTI sepsis. I was convinced that, all these decades on, I actually had an impacted bowel again. So the mocking surgeon got a young student nurse to insert a suppository because I had no real sensation down below by then.
A fellow patient I’d bonded with was all ready for me to emerge from the toilets empty and jubillant. But instead i emerged puzzled and giggling because the poor young soul had inserted the suppository up my vagina in her anatomical ignorance/ innocence 😝🥴😂. Anyway it turned out that I had acute pancreatitis from Azathioprine. So both my own and the surgeon’s first diagnoses were finally proven wrong!
Lol i’m far too controlling these days to let any medical professional near my front or backside for evacuation. I’m a DIY woman because only I know how my own dodgy plumbing and collapsing sewage system actually work! 😉X
I've not had any luck with any of the medication for Raynaud's and I did have iloprost infusions 4 weekly for several months but unfortunately they didn't seem to make any difference to my raynaud's . They do help other people however, so may well help you. I felt very sick when I had the first infusion and they had to stop it and give me anti sickness medication. They gave me that prior to starting the infusion after that. I also got intense headaches which I just about managed with painkillers.
However, I've decided to postpone the infusions: they were rather "sprung" upon me, by a temporary Rheumatologist who is actually leaving next week, and offered as a "try it and see, it might help" treatment, even though EM is my major problem and the Raynaud's is not so bad. Plus, I have more tests and investigations booked for the next couple of weeks for my GI problems, which I really don't want to rearrange.
This way, I'll have more time to think about the iloprost and weigh up the pros and cons from all the help I've received via this forum from lovely people like yourself. If/when I decide to give iloprost a try, I'll refer back to all these replies and refresh my memory on what I might expect, how to prepare for it and just as importantly, what to take to occupy and comfort myself! Thanks again.
Like you I was suffering terribly with Raynauds on my toes for a couple of years. I tried everything - the beta blockers, angina meds, Sildenafil etc but none were working at all.
So I went down the Iloprost route. Whilst I was having it done in a room with many others, they all said it worked great for them and they have an infusion either every year or other year. But for me unfortunately not only did it not work, but 2 weeks after the infusion my hand came up in terrible sores, blisters, skin cracking and peeling. The pain was and still is unbearable.
I've been told that this isn't a side-effect of the Iloprost, but may be Chilblain Lupus, but I'm concerned and sceptical as I've never had this before and it followed closely after the infusion. No doubt I'm the odd one who may have had a bad reaction as all the other folk I met on the day of the infusion swore by it.
I'm seeing my dermatologist soon so will hopefully find out more.
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