Optimune in the UK no longer supplied..

[Honeybee]

Hello
Forgive me but after a long time I am returning to ask if anybody else, like me, has been told by their hospital pharmacy that optimune which I have been using for 9 years in conjunction with other regimes for my Sjogrens, has been replaced by Ikervis?
I have spent all day ringing around Moorfields and my local hospital to see what the situation is.
I am an old member of this site but have just re registered.
I am sitting on the train coming back from donating my blood for autologous serum, a long trip which am more than happy to make.
However, optimune forms an important part of my regime and as I am very hesitant to install cetalconium( which for some ridiculous reason the manufacturers decided to add to Ikervis) onto my corneas, I am very concerned about this crutch having been removed.
I am eager to hear from anybody who could help with suggestions on perhaps I could source optimune.
I do not use the net very much due to the effect upon my eyes but will check back, forgive me but it is difficult to daily participate these days......
I don't know if "Little mermaid" still posts? But we used to chat, I am "Lulu".
Thank you so much.
Honeybee (Lulu)

[Meibum Ian]

Hi,

Whether up to date I don't know but there is an explanation of the status of various cyclosporine formulations (including ikervis and optimmune) as used by the NHS here: https://www.nice.org.uk/guidance/ta3...f-the-evidence

I'm not sure there are any known issues with cetalkonium chloride? It's used to help retain the cyclosporine on the ocular surface: https://theophthalmologist.com/subsp...ducing-ikervis

It's also used in Cationorm artifical tears (branded Retaine MGD in the US)

[Guest]

Thankyou Ian.
i just typed a long reply to you but lost it!
sorry have run out of eye time.
but thankyou for taking the time to help but unfortunately over the years I have tried various preps with cetalconium, all with poor results.
I did have a read through the very useful links though, but the fact remains that for me Cetalkonium is a no no, despite the supposed bio availability and purpose of delivery onto the surface. I hope it has helped you.
honeybee x

[Honeybee]

Thank you Ian for taking the time to supply me with those links.
I have had a read of them. Whilst I note what they say about the cetalconium allowing delivery of the drug, I am also aware that due to the addition of this, Ikervis has a shelf life of three years which is what you would expect with a preservative such as this. The fact is they are simply not preservative free, I spoke with the pharmacist at my hospital who also felt this was a silly move and clearly one driven by economics........
My experience of Cetalconium is of prolonged irritation and eye pain due to the disruption of the goblet cells on the cornea. I have used , like so may people with dry eye, hoards of preparations including preserved and non preserved. Optimune is not perfect, it is however preservative free and causes me little in the way of pain. Without the ciclosporin I am now left without treatment as unless I can find some more......
Something in me doubts it has gone out of production, I will ask our Vet if they still use it as I wonder due to the phone calls to my hospital and they clearly felt I was bothering them, I may be wrong but I am unable to find further evidence that it has been discontinued.
I used an alternative in the form of vita pos last night and boy can I tell this morning. I use goggles at night too.
However, I realy appreciate your help Ian and I hope that it is helping you.
thankyou again
honeybee xx

[Meibum Ian]

No problem. For what it's worth I do see Optimmune listed on ebay though would have concerns about the supply chain. Obviously costs more than an NHS prescription too.

A question on your use of optimmune.. Do/did you use it similarly to vita-pos - ie as a lubricating overnight ointment? Ikervis is supposed to be used last thing at night, but I'm more comfortable in the morning if I follow it with Thealoz Duo gel.

When I visited the Vissum clinic in Alicante they mentioned that they tend to prescribe a cyclosporine ointment instead of Ikervis as it's better tolerated. I think this is either Optimmune or something similar.

[Guest]

Thank you for your reply.
Had a look at ebay and if the worse comes to the worse that is unfortunately the route I will go down.
I only started via pos due to running out recently.
Have heard about the vissum institute but do not know much about it, is it expensive to both get there and for the referral?
I spoke to my opthalmic today who says we should have a go at getting a local non hospital pharmacy to order as apparently some of his patients do not always use the hospital pharmacy and my dr says sometimes it depends on who you speak to, bearing in mind I was initially told moorfields do still use it when I spoke to them. Failing that he is going to contact them himself.
Thankyou so much for your time, really appreciate it.
honeybee x

[Honeybee]

I only started using vita pos as the optimune has run out,
If I have to buy it on ebay, I unfortunately will, sadly........
I saw my opth today as he had a cancelled appointment, he does not like Ikervis apparently for the same reason I do not. We are going to try and have another go at getting optimune using a slightly different route. Not optimistic but I can hope.
I have emailed Santen to express my surprise at the rationale behind this.
I am wondering if the Vissum institute would be able to prescribe me optimune? I am happy with my care so do not need to obtain a diagnoses as I already know why my eyes are a bugger, sorry!
Thankyou once more
honeybee x

[Honeybee]

Further update.
optimmune has not been discontinued, I obtained some from my community pharmacy on the suggestion of my optho. According to the optho secretary who was told there was a shortage, which is what i was also tols before being told from an extremely rude hospital pharmacist that it had been discontinued. It still is on the specials tariff, there be some shortage and this may be due to supply chain to hospital pharmacy, still attemting to get to the bottom of it. I love the stuff these days and due to delay in telling they could not get it, so I vould try go get it rlsewhere, I took a dip. They were cross with me when I reminded them of this........
i just hope i can continue to get it, havenow spoken to a couple of peeps who are still having it prescribed.