Iloprost infusions

[Jaq1971]

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 🥲

[OldTed60]

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

[Jaq1971 in reply to OldTed60]

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

[OldTed60 in reply to Jaq1971]

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

[Jaq1971 in reply to OldTed60]

Yes the codiene is a no go for me these days and it used to be my go too med for my pain hope you get the infusion sorted and you have a reasonably good day with your family these times are so precious xxx