Hey all just thought I would pop in and give you an update on my experience with iloprost infusions, so I had 5 days worth 6 hrs a day two weeks ago and my god it was rough I only managed 3mm per hour as horrendous nausea and headache I know this is a common side effect but I felt awful when eating anything my taste buds went into overdrive almost like eating a lemon 🍋 it was strange although I hope it will help and although I still have extreme sensitivity to cold I haven’t had any more ulcers pop up I do hope I will build a tolerance in my next round but I would say harder than the rituximab for me although both have definitely helped my swelling in feet ankles, wrists and knees has gone down , I do still have stiffness and pain in my joints . They have also put RA on my notes is this normal for systemic sclerosis to cause RA on top of everything else I feel like a walking dictionary for autoimmune conditions 🤣 I think I’m up to six now ? I’m guessing they all fit into the one main diagnosis ? I have been having issues with gut bowel and swallow again it just seems get one thing under control and another pops up to hit you in the face . I start physio in January not sure how this will help but I will try anything . Haven’t been able to work since May as been just to sick 🤒 I have never ever been off work in all my working life until the last 2 years my GP has said I’m unfit for work and wants to sign me of for good not sure how I feel about that 🥲
Iloprost infusions : Hey all just... - Scleroderma & Ray...
Iloprost infusions
Hi Jaq1871 thanks for posting iloprost update. Well done for getting it and coping. I was so ill first time in 2020 but it was during a heatwave and no fans allowed due to Covid risk so this didn’t help. The ulcers on my finger tips disappeared overnight and I could type and draw again (I’m a freelance artist) so was worth the torture over 3 days for me.
I’m always amazed at how many variations on length of time various UK hospitals give iloprost for. In my hospital they offer 3 days every 3 months or 24 hours as inpatient every 3 months. Apparently they have just started offering it six monthly over 5 days. I’m the only one who gets it one day a month because I asked as my veins couldn’t hack the cannulas for more than a day. Now I have a central venous portacth but due to needing it flushed 4 weekly - also taking codeine 30mg as a pre-med to avoid migraine but bad for stoma blockages - I stick with a day a month. This really suits me best re the side effects and means I can plan accordingly. 5 days would be my idea of hell!!
Re side effects I don’t really suffer these now as long as I take codeine and paracetamol before leaving home and IV cyclizine (horrible after for 30 minutes like I imagine a hallucinogenic drug would feel!) which stops me throwing up. I agree Rituximab feels just like walk in park in comparison!
I was initially misdiagnosed with RA 13 years ago this month. I had it as my main diagnosis for 4-5 years even though I didn’t feel it was RA and have no specific joint erosions. I relocated and it fell off my list to be replaced by Sjogren’s with neuropathy and Raynauds. Now this has changed to Systemic Sclerosis of course - which I think it probably was all along. As SSc is the most serious one in the rheumatic autoimmune family they seem to have reduced my Sjogren’s now to Sicca Syndrome despite a very positive biopsy result in 2016. No mention of the old RA although I did show my rheumy photos of classic RA hands and a letter from my first rheumatologist. I also have Hashimoto’s Hypothyroidism but have had this for several decades. If asked how I just refer to it all as Systemic Sclerosis as I think this is the big one and also the only seropositive one for me X
Thanks for reply OldTed60 such a mine field I agree systemic sclerosis seems to be the umbrella for all other issues just laughable every time I go on my NHS app another thing shows up but on the plus side now I’m getting regular treatments and my liver has settled down such a long frustrating condition with so many variations today I can barley walk my whole body is stiff so day with not much happening I guess been up since 4 I struggle to take coidene these days it used to be fantastic but now it causes me real pain in my back and tummy and it makes my swallow worse so I use my cbd cream and paracetamol which doesn’t do much really but it takes the edge off and hot baths when I can get in and out lol xxxxx
Sorry about your bad night. Unfortunately my iloprost was due last week but postponed due to a supply issue (hospital pharmacy ran out having forgotten to re-order!). Friday 13th not ideal especially as we go away to visit som and his wife early Saturday and I anticipate feeling knackered. Interesting what you say about codeine. I usually only take one 30mg a month but lately had taken a few more due to toothache. Lo and behold I was doubled up next day with nausea and gut pain again but only just made the connection. Another pain med bites the dust although I’ll still be needing one v early tomorrow before iloprost xx
Hi Jaq thanks for the update, sounds as if you had a tough time well done for getting through it! Hope things continue to improve. Work is a really difficult decision isn’t it. I eventually gave in after nearly eighteen months of continuous absence. But I really miss it and the team I worked with. I was 62 but I think I would have carried on for a good few years if I could have so don’t give up your job until you are absolutely sure. Take care.
Yes it’s tough I’m 53 but I have other problems with my health and I do struggle I’m not going to make a rash decision but may have to rethink what I’m able to do I will never just sit and give up I have worked from the age of 14 even when having my children found work that I could take them with me or worked around there school etc, I think I would go nuts with nothing to do xx
Hi Jaq!I'm going for my iloprost next week. It's that time of the year when it's so cold my raynauds and ulcers are going cuckoo. I do 8 hours a day over 4 days and have been for about 7 years now.
I still haven't built up a tolerance, but I take pre-meds and I find they help a little. I go for codeine, paracetamol and cyclizine (the tablet not IV as IV cyclizine makes me feel what I imagine being high is like). The first two help with the migraines and the last helps with my nausea. Cyclizine also makes me very sleepy which helps me sleep through headaches if they do pop up. You can also ask then to turn off lights if you get light sensitivity like I do.
I can say iloprost works though, for all the horrible side effects I never skip a treatment. I suffer horrific ulcers so I have my 4 days every 6 months and I do notice a big change. Also it's a good time to see the scleroderma nurses if you go to royal free for it like I do.
I had it in my local hospital in Somerset the nurses were all very kind and did turn the lights off for me I have felt the benefits so I will go again mine are once a year for now so we will see if it lasts xx
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