UK Keratoconus Self-Help and Support Association

Has anyone any experience? I was rx'd these last week and simply told i HAD to take them and their an immuno supressent but given I live with 3 auto immune conditions (Fibromialgia, Ethromialgia and ME) and am also breast feeding a soon to be 6 year old i am cautious. I asked the eye specialist he had no idea, nor did the hospital pharmacy, I have contacted the drugs in breast milk people but no reply, can anyone shed any light, as the brief bits I have been able to find are directed at those breastfeeding a newborn not a older child. Nor info if you have pre existing auto immune issues.


I am NOT prepared to wean my daughter early just because of eye drops, just as despite taking hefty benzodiazapines and opiates these are done in a controlled way so when she nurses minamal amounts risk transfer to my milk supply due to her age andn ballanced risk etc.

Lea x

Sorry, absolutely no medical experience regarding this. Disappointing that you haven't been advised properly concerning this by the experts. Just hoping you and your daughter can navigate through this. Wishing you both the best

thanks Bear, we eventually got a reply from the wonderful Wendy who has just been awarded a MBE for services to BreastMilk and Pharmacy as she is the UK go to person for drugs and interactions and nursing and she says all is fine, the fact the specialist has wanted me on these a few years n kept denying due to me nursing was his way of trying to get me to wean my daughter to suit his own agenda and cos theirs been no trials of the drops used in people who are nursing an older child so specialist covering himself by trying to get me to wean her, but Wendy says all is fine, n given I am already taking oral morph and klonazepam n other things daily all is fine just to be aware they are a immuno supresent so given teh rest of my auto immune stuff be careful and stop immediatley if any interactions etc.

Hi Space cadet
can u tell me if u have had any success with the ikervis as i am fed up of struggling with dry eye told not good for contacts but without contacts cant work struggle with blurred vision due to watering and dry eyes have had to be on ophthalmic steroids several times in recent years due to various reasons and each time dry eyes feel better but not really a good long term solution due to increase risk of cataracts just wondering if ikervis is a viable option to discuss with optometry
thanks

if only I could tolerate contacts ....

I was told these are last chance saloon as have tried far more drops than id take time to list and have only been on them a short time n thus far no gain,

if you are struggling with the contacts you have, perhaps a different brand of contacts would work for you,

I am legally blind due to KC and would give my right arm for that level of vision once again

I have used Ikervis Drops - one daily for three years. They were prescribed for the problems I was having with mucous production and did seem to help. However after hearing the cost of them (in the region of £100 a month) I decided to try and reduce my use. After tailing off I have been off them for about a month now and am experiencing a bit more mucous but at a manageable level. I wear Scleral lenses and was forever having to remove and rinse my lenses due to the build up of mucous in the lens. However I am aware that I may need to restart in the summer if hayfever causes an exacerbation of my symptoms.

I find Hylo Tears very effective for dry eyes.

hylo tears and hylo forte were having minimal effect hence these being suggested, thus far iv not noticed any difference