I went to visit my rheumatologist again last week as nifidipine isn't working for me. unfortunately there is nothing else she can give me. She has put me on the waiting list for the iloprost infusion, does anyone have any experience of this. I have heard mixed reviews about and I'm unsure if it is worth going through with it or not.
She also advised me to buy ginkgo biloba to try. I went to Holland and barrat today to buy it and the woman in the shop was very confident that it would work as she explained that when she took it she noticed the blood flow drastically increased to her hands although doesn't suffer from raynauds. She sold me 120g to be taken once a day. I have taken one and there has been no change at all. Has anywhere here taken in and how much and did it work?
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hayleyt14
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It might take a while for the Ginko Biloba to work. I've heard mixed reports about it. It thins the blood too so be careful if you take any other blood thinners!
I've stopped all prescribed meds & take ginkgo & magnesium. Not same as fast acting meds but At least no nasty side effects. I find more active I am the better, especially first thing in the morning. I run or fast walk & also practise yoga & Pilates. Raynauds is such a nuisance! Good luck...
I had Iloprost infuse only once. I had a crisis and it was scary. My blood pressure already low crashed. It caused a severe raynauds episode swell. They had to raise the foot of my bed by about 3 feet and lower the head and wrap me in 8 blankets to try and reheat me and protect my organs. Needless to say I never repeated it. I used fluoxetene and this worked for the Raynauds but the fatigue that came with it was not a fair exchange. My cousin who has raynauds and Lupus swears by Viagra 3 times a day so I am asking to try that next. However nothing is without side effects. I was on metoclopramide for 5 years but now it is only used for 5 days. True enough once I stopped it my Parkinson leg shakes stopped. Some meds take a while to work so stay with it. However some don't work at all for different people. We are all different just as Scleroderma effects us differently. Good luck and keep trying. Post here if anything works for you. I always have gloves and hand warmers on me and in my car.
I have taken ginko for years. I find if I forget to take it for a couple of days my legs are restless and drive me mad. Give it a little while to work.
I am being treated by Norwich Hospital's Rheumatology Dept.
I said 'no' to Iloprost and they put me on Sildenafil (aka Viagra, 2 x 25 mg tablets per day) and it works a treat to boost circulation in my fingers. I have decided to only take one tablet per day and so far so good. No strange side effects - it works quite fast (within 30 mins), and I feel a warmth in my face and then my hands warm up for about 8 hours. Try Googling 'Sildenanfil Raynaud's Syndrome'. Try telling your consultant, and get back to me if you need any more information.
I have no experience of Gingko. What strength / concentration and what maker's brand have you chosen?
I went to see a rheumatologist at the royal free in london when I was first diagnosed with scleroderma last year. He suggested I try ginko biloba to help with the raynauds. He said i could get it on prescription from my GP. I coukd t believe my GP had never heard of it. I had 5 days treatment of iloprost infusion. I did t tolorate it well. My blood pressure wadlow and it made me feel sick. I think this was due to the way itwasadministered. Thenursesfogot to give me the antisickness medication before the treatment on more than one occasion and thenthey ran out. They didnt have the ioprost ready despite knowing i would need it every dayfor 5days. Somedays theystarted the treatment at 9 in the evening when they finally got the supply which meant i got no sleep. The whole stay in hospital was a nightmare. I wasglad to get home and It didnt improve the raynauds. I am now taking nefedipine which does seem to help and I dont have any side effects.
Iloprost works very well for me. I have tried all sorts of medication and couldn't tolerate a high enough dose of sildenafil. I have iloprost every 4 weeks for 3 days, feel rubbish as it's going in but for me it's worth it. I still have raynauds but my skin doesn't breakdown and the recovery when I get very cold is a lot better. It is one of those things that works well for some people and others not with tolerance being an issue. I was very scared about having it but now I wouldn't be without it.
I think it very much depends on your Dr and where you have it done as to the frequency. There are many people on this forum that have iloprost and we all seem to have it at different intervals.
Hi Hayleyt14 , I have had one experience of Iloprost Infusion and judging by the state of my hands at the moment the next one is fast approaching , My experience was I was admitted into hospital for 5 days having the infusions for 12 hours on 12 hours off every day ( some Rheumy's do it differently ). According to my Rheumy I had to go as an in patient because the Iloprost can affect blood pressure ( which it did on a number of occasions dropping really low 50/35 ) The first few days I wondered if it was ever going to make any difference , fortunately on the 3rd day I could actually see the changes , my hands and feet started to get colour and the painful ulcers started drying up. I was pretty bad at the time the Rheumy said if I hadn't had the infusion I would have to have my fingers amputated , that was 4 years ago . I have been managing really well up until a few weeks ago , now I'm booking an appointment for another hospital stay and infusion , hoping that this one lasts 4 years too .
I start iloprost on monday 6 hours a day. Unsure of what happens any advice?
You'll be fine. It's just a drip infusion that you'll have for 6/7 hours a day over 5 days. You'll still be able to move about. I just sat there watching tv. They normally start at a low level and increase it every 15 mins whilst taking your blood pressure. The most you feel is lighted headed and no side effects. I expected the worst, but you'll take it in your stride. Just opens up the arteries. Felt a lot better after and still ate normally during the 5 days. Was good to chat with other patients on the ward and open up a bit. You'll literally sit there with a drip, but won't have any problems i can guarantee. Mine was about 5 years ago or so and i was on a ward where they weren't sure how to do it. I even altered the drip myself at one point!.
Do you still suffer or has the iloprost removed all symptoms?
Still suffer. Stiff, swelled hands and feet. I think it is just a temporary measure to stop ulceration. I must admit it did stop the severity of the raynauds. i felt better after it, but it's not something that would cure anything.
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