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Scleroderma & Raynaud's UK (SRUK)
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Torture treatment on the NHS!!

I have had Raynauds for the past 7 yrs but more severely the past 3 . This autumn the fouth toe of my left foot got owrse than usual and after 5 weeks of conservative management went to the GP, a week later fearing I may lose my toe I was sent to a Hospital 30 miles away to see a vascular consultant. I was admitted for a 10 day course of Iloprost 6 hour daily infusions as an inpatient.

My infusions were so poorly managed and understood by the nursing staff it was torture. The first was given at 10 pm through to 4am ( thanks guys!) 10ml/ 30mins, 20ml /30 mins, 30ml /hour, 40ml/for 4 hours!!.

I could manage the frist 3 hours ok but then the back ache, neck ache, headache struck, I started to feel sick and then the shivers and the chill. I have never been so uncomfortable in all my life. Child birth was easier! I was given morphine to elp me get through it but the nurse persisited with the infusion. The next night ( oh yes I was an inpatient but still they didnt get there act together until the evening 6.30 -12.30pm) the nurse clearly had never done one of these infusions ( I overheard her asking a junior member of staff what to do!!!), she checked on me and monitored me in the first 2 hours but then whne into my secnd hour at the full 40ml/hour dose when it gets rough she just left me..the back ache, headache, nausea, and then pins and needles in my fingers and limb spasms..I thought I was going to die..I pressed my buzzer but only a health care assitant came who said they would get the nurse she left me another half hour. I was sobbing in pain..the nurse eventually came and turned off the drip (no gentle reduction as recommended!) and squirted more Morphine in my mouth.

The next 2 days were better administered by nurses who did chek the effects on me and reduced and increased the dosage accordingly. By the end of the 3rd my hands had ballooned and I was covered in hot itch hives all over them. I did the fouth day but another reaction at the cannula site meant the had to stop again half an hour early. The consultant wanted me to stay for another 3 days. I refused and discharged myself.

4 days on my toe is as bad as it was when I went in, my hands are agony still and can't be moved without pain due to the hives. Ironically I develpoed 5 chilblains on other toes within 24 hours of getting home clearly suggesting that the drug totally failed to improve vascular circulation in my toes!!

I would never do it again. I would urge anyone else to think very carefully before submitting to it. You need a hospital and staff who understand the side effects ; I was told that it was ridiculous that I was cold and shivery..it made me feel unvalidated as a human being and made a bad situation 10 x worse. NEVER AGAIN!!

:(

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This is exactly how my iloprost treatment went, except I lost a healthy finger and another finger, but my drs have persisted with it for 18 months, 4 times now for several days over the last 18 months, some 8 hour a day some 16 hours a day, the iloprost is supposed to be started at 10ml an and up it depending on your reaction, you are also supposed to have your obs done every 30-60 minutes as the iloprost is supposed to reduce your bp to actually work so the headaches and general crappy feeling is sadly normal, I’ve done 4 attempts now and finally the drs have listened to me when I say it isn’t working for me, I’m now on a tablet that does the same as the drips apparantly but I haven’t taken it long enough to see any changes as yet, hope you get some answers or help soon

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Hi dousey: I was thinking of you as i read motherm’s terrible experiences...am so glad to find you’re here too! Have you read pino99’s reply below, cause her experience is v like yours...

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That is so dreadful I can't believe that you lost a healthy finger and a third of another. So far since being diagnosed peoperly a week ago every one seems to say " oh yeah I have Ryanauds" like it's nothing, like having a cold !! People don't seem to understand the severity of the condition . They don't seem to realise that people loose digits and limbs from it. It is serious and deserves proper recognition. Even in hospital I was made to feel like a fraud like I wasn't ill ( cos I wasn't!! )but it didn't mean I haven't got a serious condition that impacts significantly on how I can live my life, Thank you for your input it helps me to feel validated X

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So sad to hear of the awful time you have had. Good advice it sounds horrific not for me though. Take care and stay warm xx

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Ohhhhh Motherm

I’m so very very sorry this happened to you. I just prayed for you I hope you get the care you need (and for everyone else that reads this too). Sending you hugs 🤗 love 💗 and kisses 😘.

😊🌸🌿🦋🙏😇

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Oh my that sounds horrendous - if it helps in any way iloprsot doesn't have to be so bad if managed correctly!

all hospitals have different protocols for how to do it which I find odd as it's the same drug just given differently depending on your hospital (which doesn't make that much sense to me) - what a terrible time of it you had ☹️ My first experience was not that good at all I was given it overnight too and wasn't fully expecting that iloprsot side efffects feeling you get so it really scared me. However I made it through that admission some how and now attend a day unit for my iloprsot which is amazing. They watch me the whole way through and we know the right drugs for the different side effects at the right times to make it manageable - I can now stick to the top rate for my weight the whole way through (see my protocol is different to yours) I tried a different way of doing it and it made me feel so bad it got turned off because we hit a rate that was way too high for me - it makes far more sense to go by weight. I hope you get some relief soon but if you have to do iloprsot again make it super clear you want it done right !

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Thanks so much for your advice and support. I am now left unable to walk or drive! My hands are so covered in red intchy hives that I can bearly hold a cup of tea or open door handles! I am so so fed up! Thanks for the advice.

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That sounds truly awful. It’s such a shame because if it had been infused properly with the rate adjusting as per your tolerance you may very well have been able to have the whole course. I have iloprost every 4 weeks for 3 days and have never experienced staff who are so uncaring and clueless. I’ve always been very well monitored and when it has become too awful the rate has been reduced or switched off for a little while to give me a break. I have recently changed consultant and my new regime is the same as yours and I had intense pain in my hands and feet like never before so it may well end up going back to a regime based on my weight.

I really hope you find something to help you, I think it could have potentially been very different if they had done it properly

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I would write to the hospital director and complain to try to inistigate changes

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Sorry to hear of this, it really shouldn't happen like this. I agree that you should complain check the hospitals website and they will have a dept to email / form you can submit. Unless we complain about bad treatment things don't improve.

I hope you find some relief from your pain soon.

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That is truly awful, so sorry for you. I did not have any problems with the iloprost infusion, but no real benefit either. I lost a third of a finger. I was then put on sildenafil and that was a game changer. Ask your gp to give you aprescription. It is now the treatment of choice, according to Prof Denton, who is Britain's authority on Scleroderma and Raynouds. Best wishes

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Thank you so much for this advice I am going to my GP today agian for help with the hives ( now spread over my knees and ears!!) I am going to ask about this drug and do some reserach you could be my life saver !! Thank you x

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I second the sildenafil. I noticed a major difference within 2 days. My fingers were near normal temperature. My previous Raynaud's ulcers have healed but it did take a long time. I monitor my oxygen level in each finger using a pulse ox meter you can buy at the pharmacy. Occasionally I cannot get a reading from my left ring finger. When I do not I keep an eye on it and sometimes washing my hands with warm water helps the vessels to open up. B3 Niacin also helped but you have to use the one that causes you to have the flush feeling, that's a bit to get used to.

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I am hoping to get this episode under control; heal the ulcer that has burst on my problem toe and rid myself of the iloprost induced itchy rash that is actually worse than the toe!!! Then the new meds approach are a must. It seems that all the doctors I see about this are seeing it as unusual in a fit an ordinarily silly active 50 yr old!! They almost seem ignorant as to the options ie in no better position than me; which does not engender confidence!!Everyones input and support on here makes me feel far less alone and less freak like !! Thus far I feel very alone and misunderstood as though they have never been here before1 Many thanks M

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Obviously not sure where you live but if it's any where vaguely near London see if you can get a referral to the royal free hospital - they are amazing and know everything about raynauds!

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Sadly I am in Yorkshire and the York vascular ward seened clueless. 😕

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I was interested in your post regarding taking Niacin to help with your circulation to your toes.

I have not been diagnosed with Scleroderma because my bloods were negative. However, I have all the symptoms and have started taking Niacin to help with the circulation to my toes as I have an ulcer on one of them.

I am taking the “no flush” type. Does this type work or must I take the normal type.? I really don’t know anything about Scleroderma and your reply would be appreciated. Many thanks.

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I was told b3 niacin is useless when the remove the flushing material in it. The flushing you feel is your small capillaries dilating allowing more blood flow. Without this there is no reason to take is.

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Many thanks Rking for replying to my post. I have been taking the “noflush” type for the past month and did not notice an difference. Today I went and purchased the normal niacin and shall start tomorrow. I do hope the flushing will not be excessive

Do you take it yourself and any tips to help with the flushing?

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An update Rking50on taking the normal niacin. I took 500mg once a day for a week and managed to adjust to the “flush”. Not a flush exactly, more like all over body heat. On the second week I took two 500mg per day and the body heat was dreadful. I felt exhausted. During this time my feet and legs were still frozen.

Have you any idea how long it will take to adjust to the heat and how long before my feet will begin to feel warm?

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I am really sorry to hear about your experience. Yesterday I completed 5 days of iloprost treatment as an outpatient. My experience was totally different. There were machines used to control the rate of infusion through the cannula. This was increased slowly each day. Blood pressure and pulse taken every 20 mins for the first hour then hourly. Pain killers and anti sickness given before the start. Six hours of infusion. Yes awful headaches, jaw pain, aching and feeling sick which increased during the day but all symptoms, except aching, disappeared a few minutes after the infusion was switched off. The staff were all lovely and supportive. It sounds to me that your hospital staff are in dire need of training. I don’t know if it has worked yet as it all only finished yesterday.

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Thank you for posting this. I live in California. Kaiser HMO completely ignorant of this disease. As I watch a few toes and fingers react worse after 20 yrs (no ulcers yet) I try not to panic with these experiences. I wonder “Will this be my outcome??”

I am so sorry for your suffering. 😟

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I just take it a day at a time. If it doesn't hurt and fingers and toes feel fine, take sensible precautions but live life to the full. May not have many tomorrow's so better to live for today. It would be a real shame to live a restricted life for the sake of a future and then get struck by a bus and have missed the nows. Hope this helps ☺️xx

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Hi,

My name is Mark. I have had Raynauds for twenty years plus. I also have Scleroderma. Defined as systematic sclerosis. I'm on forty plus pills a day and suffer from all of the symptoms and problems associated with this joyous desiese. I would add I have also lost two fingers due to misdiagnosis three years ago.

I have had three sets of iloprost infusion and had no problem with it at all.

Having just read about your ordeal all I can say is "SUE THEM",!!!

You poor thing. I think what you were put through is utterly appalling. Someone needs to pay for it. I don't mean from a financial point of view.

For the record I think out NHS is generally doing a wonderful job with no help from a pathetic government. I firmly believe the American litigation approach is wrong. However, you deserve at the very least a written apology from the hospital and ten grand for good measure. If you don't someone else certainly will. You should be on: Sildenafil, warfarin, hydroxychlroquine and from the sound of things probably steroids for a while as well.

Get a referral to the Royal Free Hospital in London for a proper diagnosis and get them to oversee a proper course of treatment by the best Rheumatologist in your area. That will obviously take time. While you are waiting. Get your GP. To prescribe you sildenafi. I am on 150mg a day. That said I am six foot four and weigh 240lbs so you probably won't need so much.

I think I can speak for many people on here who will tell you that because we aren't growing an extra head an turning green that people including a surprisingly large amount of doctors, just do not except the desiese to be as painful, life threatening and utterly soul destroying as it is.

Unfortunately; YOU NEED TO GRIT YOUR TRRTH, STAMP BOTH FEET AND YELL LIKE HELL TO GET NOTICED. It's horrible but it's a sad fact that it's your life we are talking about and you need sympathetic help. You don't want halfwits messing you about. I have learned from most bitter experience that you have to kick up a stink to get it. So be it. Take no prisoners.

I wish you every bit of luck with your future treatments. You will get a good Rheumatologist but you may have to yell a lot to get there. Try and be positive and don't ever take no for an answer.

Good luck, have a great Christmas and a much, much better new year.

Take care of yourself.

Regards. Mark.

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Thanks for telling your story. It’s a warning to others not to accept poor care. I’ve had most treatments on offer for severe Raynaud’s. Nifedipine, illoprost and botox injections to the fingers. Sadly none has really helped. Thanks for the Sildenafil suggestion. If Chris Denton prefers it l will suggest it to Rheumatologist. Thanks

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