Starting with ciclosporine drops: Hi,. I had my... - LUPUS UK

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Starting with ciclosporine drops

Stephanietee profile image
3 Replies

Hi,. I had my first dose last night, no stinging or pain but maybe that's because I had anaesthetic drops in my eyes during the day at Eye clinic. What is bothering me amongst many thingsr is the consultant didn't ask what other drugs I am on (I am on plenty) and I don't know whether to expect any interactions especially with amytriptyline. Can anyone enlighten me please?

Stephanietee

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Stephanietee
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Barnclown profile image
Barnclown

Last summer I started on Ikervis ciclosporin drops daily. I've had nothing but great results from these wonderful drops! The cornea expert ophthalmology consultant who added them to my daily prescription dry eye meds was aware of all my meds (oral & topical) which include daily amitriptyline (orally, am on daily hydroxy Zentiva + myco cellcept + pred + amitriptyline + coamoxiclav) and told me there'd be no probs.

It's great you've had no pain with these drops. I had slight pain at first, but then hardly any pain...just pain on the odd occasion

Are you being prescribed the Ikervis make? My consultant said I might feel some pain but that the ikervis make is intended to cause much less pain the pre-existing makes.

Let me know if your gp surgery refused to refill your ciclosporin prescription...I had this prob at first 😉

When are you back in eye clinic for review?

Did your consultant diagnoses filamentary keratitis etc?

Have you ever had cornea ulcers?

I hope you'll let us know how you get on. For me, benefits have been cumulative: after 3 months I suspected Ikervis was helping...after 6 months I knew it was helping....after 9 months the benefits were dramatic! And there is one added benefit: my chronic sinusitis is damping down even more due to the little bit of ciclosporin the leaks down the eye ducts into my sinuses on a daily basis!

🍀🍀🍀🍀 coco

Stephanietee profile image
Stephanietee in reply to Barnclown

Great reply, thank you so much , so reassuring. My next question was going to be about the surgery prescribing these. The cons. thought I would have to go to the hospital for them but as I live out in the sticks N hour away and I don't drive I said it was out of the question. He wasn't very helpful and said discuss it with your local pharmacy., but I still have the same problem although they will get them. Hospital won't send them so I am going to be really stuck if the GP won't give them to me. Booked to see her in a couple of weeks.

Why did you have a problem and how did you resolve this.

I do have badly scarred corneas and developing cataracts and probably filament army keratitis although this has not been mentioned.

Many thanks

Regards

Stephanietee

Barnclown profile image
Barnclown in reply to Stephanietee

Oh Stephanietee....am vvvv sorry about the condition of your corneas....🤞the ikervis will help!

I am lucky: my consultant is vvvvv switched on & proactive. When my gp surgery dispensary point blank refused to supply ikervis (they gave no reason. They just said: we won't supply that) they told me to phone my consultant's secretary, which I did. She got him to write a prescrip for me to collect & fill at the hospital pharmacy. I live in a remote area too, but I drive & the hospital is only 30 min away. So I could manage this. BUT, the next time I was collecting repeat meds from my gp dispensary, I asked if they could see if they would now supply ikervis....blow me: I then looked online at my repeat prescriptions listing: ikervis was included! So, I have been getting ikervis from my gp dispensary ever since.

I had another eye clinic appt recently at which the consultant explained that he & his colleagues have been in discussions with our local CQC to make sure GPs in this area ALL know they MUST fulfill prescrips for ikervis. He says the emphasis is on prevention, i.e. catching & treating chronic cornea inflammation like ours with ciclosporin as early as poss. I guess the message has got through to my gp anyway. But my consultant said that if I ever run into more trouble, he'll fulfill ikervis for me. So, am wishing you every best wish...please let us know what your gp says

Take care 🍀😘🍀😘

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