immunosuppression medication

[aberlady]

My 34yr old son suffers badly due to chronic eye disease & Keracotonus. He is not
a suitable case for cross linking or intacs. He is unable to wear his contacts. Does anyone have experience of immunosuppression treatment?

[Andrew MacLean]

Aberlady

I have moved your post to the General Discussion Forum, where it is likely to attract more attention. I am sure that somebody will be able to answer your question; in the meantime welcome to the forum.

I gather from what you say that your son has other eye issues? If so he ought to be guided by his ophthalmologist.

Has he ever tried contact lenses as a way of managing his keratoconus?

Andrew

[aberlady]

Yes he has contacts, but because of chronic eye infections, he is a severe excema sufferer, constant irritation makes wearing them nigh impossible.

[Andrew MacLean]

I'm afraid this is often a package that comes with KC. there are ways of dealing with it: I frequently flood my eye (lens in) with artificial tears. I use clinitas soothe. This eases my urge to rub my eyes.

There are other sorts of contact lens that can be worn by people with keratoconus. My all time favourite was a scleral (or haptic) lens. There are also soft lenses that have been developed specifically for people with irregular corneas.

Every good wish

Andrew

[aberlady]

Thank you for your suggestions, I shall mention these to him. The local hospital suggests that immunosupression drugs are the only option. My son is naturally anxious about taking this route. Information from others who have tried would be most welcome, as would be information about any specialist eye department in Scotland who might help.

[Andrew MacLean]

There are several very good eye clinics in Scotland; I go to Gartnavel where I have always found the service excellent.

Andrew

[jojo19732009]

I also have a terrible time trying to wear my lenses and have tried lots of lenses and lots of different fabrics which the lenses are made from. I started off at the Vic in fife. I got reffered to the Eye pavillion in Edinburgh and have finaly chose to go to livingston.
I have not got through a two month period without my eyes reacting in one way or another. I am now on drops that are supposed to stop this from happening. I think they are just like a anti histamine type of drop for atopic type patients. Has your son tried this? This is the second type of these drops I have tried.

[Sheila_e]

Hi, I am taking immunosuppression medication, for both my Lupus and to help prevent a second graft rejection. The Cellcept I take( I am told) is a level 4 immunosuppressant. They had to adjust my dose as I was getting blood blisters in my month when on the higher dose, and I am careful to cover up in the sun. Make sure they set up the appropriate blood testing timetable, other wise I think its doing what it should be doing. hope this helps
Regards
Sheila

[aberlady]

Thank you jojo & sheila for your responses. The drug suggested for my son was not the one you mention. at the moment he uses tacrolimus cream and prednisolon drops, but still unable to wear his contacts. I only wish there was more help from our in Aberdeen. A recent referal to Glasgow or Edinburgh was deemed un suitable by the drs there and now feel there is nowhere to turn.

[bwfc2011]

Hi

I have severe eczema, and have been on cyclosporine and azathioprine for it. It pretty much completely cleared my eczema (which incidentally made my lens wearing easier too also), but my blood tests showed that they were causing me to have liver problems ( I was told I have the liver of a 70 year old!), so I got took off them. I have not taken any of the immuno-suppresants for nearly two years now, and although my eczema has come back, it is not as bad as it used to be. If your son is going to go on these drugs, ensure he goes for regular blood tests, as they can have severe side-effects.

Hope this helps

Alec