Trying to understand the factors behind recurrence of Diabetic Macular Oedema

[Sijslws]

Have been having Lucentis injections for 3 to 4 years. Reached a point a couple of years ago where where it seemed to have cleared up in both eyes so I went to 6 months between visits. In the meantime at my annual diabetes review at GP Surgery the Nurse stated that my diabetes control had improved the amount of Glicazide I am prescribed could be reduced. When I subsequently gained electronic access to my medical record I found that there had actually been a very slight worsening in the Hba1c figure rather than an improvement. I then sought an appointment with GP who agreed to some increase in the Glicazide but not to the previous level. The reduction in the Glicazide had caused my Hba1c to go from 6.4% to 7.8%. Restoring done of the Glicazide got it down to 6.8% and GP was happy with that improvement but by that stage the lucentis injections had needed to restart. At this year's diabetes review the Nurse recommended switching from Glicazide to Linagliptin but whilst she cancelled the Glicazide of the repeat prescription she did not immediately start the Linagliptin prescription so raised it at an appointment with GP and got the Linagliptin prescription started. The change from Glicazide to Linagliptin had the effect of moving my Hba1c from 6.8 % to 6.9% which whilst a small rise in itself is still somewhat higher than the 6.4% that it was down to before the reduction in the Glicazide. Have now been in to see GP to ask if it would be possible to add some Glicazide back in alongside he Linagliptin as I would like to get back to below 6.5% for the sake of my diabetic macular oedema situation which he has agreed to. I have got rather sensitive to the sometimes lack of linking between the treatments for diabetes at the GP Surgery and the Eye Unit as the Doctors at the Eye Unit have sought to imply hat a lack of control of the diabetes is causing them to continue with Lucentis injections for a long time whilst at times the GP Surgery don't always seem to understand my concern when changed in medication can cause a rise in the Hba1c level.

Sorry this was rather long.

[Koalajane]

Hi I believe most doctors at eye clinics blame the worsening of macular oedema on poor glucose control. They do for me and my hba1c is 40 and I am on no meds just diet controlled. One opthamologist did say it was because of my sugar spikes. I am on steroids for PMR and I do all I can. I have even stopped having lunch as I know this is when my steroids spike my sugars. I have dropped my steroids as low as I can. My feelings are that they don’t know how type 2 is treated as they are opthamologists and probably know little about diabetes.

[Hidden]

Sadly, t’was ever the case with GPs and eye conditions. It does appear that they have little training in ocular issues and most seem not to have much interest. My condition is not diabetes or AMD related but it does rely largely on anti-VEGF injections if I am to retain sight, I went blind in one eye for over 2yrs because even eye docs did not understand what was happening. Sadly, it demonstrates that we have to take charge of our own treatments. In some respect I am fortunate in that my GP knows little about eyes, does not even like looking into them and says “You know more about this than I do. What do you want me to do?” I always make sure I am prepared with info from my retinologist or oncologist and he writes out the prescription or arranges referral.

Always try to save them work by obtaining such things as phone Nos, email or FAX addresses, it works!