Retinal hemorrhages

[purple]

Does anyone have experience of Retinal hemorrhages ? I was diagnosed today by optician and referred urgently to hospital.

[MaryF Administrator]

HI there, I have not had this, but several people on this forum have had. I hope you were looked after well at the hospital. Thank goodness the optician was on the ball. Let us know how it pans out. MaryF

[Hidden]

I haven't been diagnosed with Hughes but I spotted this post and thought I'd say that I was found to have a flame haemorrhage in September. I have RA and polyneuropathy/ dysautonimia plus hypothyroidism.

In my case I think it was as a result of huge spikes in my blood pressure but fortunately for me it wasn't in a particularly significant location in my eye so my optician simply wrote to my GP suggesting my BP be closely monitored. I am on medication for hypertension now and was checked last week and it's gone. I hope yours is nothing too serious.

[Zamalek]

Hi there, Not sure if this is the same thing. I have had two Retinal Vein Occlusions

caused by the Hughes Syndrome. So initially two clots, but after the clots came

a hemorrage. The first repaired itself remarkably well. The second has caused

considerable damage to the Macula, though it has improved very well, and

actually the oedema fluctuates from day to day. Are you on Warfarin?

I hope you have been seen at your Hospital quickly and efficiently.

Best Wishes

[purple in reply to Zamalek]

Sorry to hear that you have had this damage, this is my fear too. I am on Warfarin. As you will see in another message I have sent below, it is not quick or efficient in my experience.

[Hidden]

Oh that sucks. Had one before. Not good. 😐

[SjogiBear]

My optician found a retinal haemorrhage during a routine eye test a year or so back and I was referred to opthalmology at my local hospital. It wasn't deemed to be urgent so there were a few weeks before my appointment came through and by the time I had all the checks done, they couldn't find anything. They really made me feel like I was wasting their time though and they weren't interested in either my APS or Sjogrens diagnoses (just told to try and have an eye test annually). Best of luck!

[purple in reply to SjogiBear]

thank you for your reply SjogiBear and everyone else who has kindly replied. This has helped calm me down a little because like you they seem in no hurry to give me the so-called "urgent appointment". I am still worried at the delay though, because the haemorrhage is in my good eye and I cant see much with the other eye. It will be 5 weeks before I get to the hospital consultant after seeing the optician.

[SjogiBear in reply to purple]

I am guessing that if they thought your eyesight was being immediately threatened, they would have sent you to A&E. Urgent does seem to mean a few weeks unfortunately these days. Do try not to worry too much if possible x

[Zamalek]

Five weeks is a long time to wait, you must be very anxious. Perhaps you could consider

a private consultation, whilst you are waiting for the NHS appointment, you will still

be on their waiting list, but would get some answers and hopefully reassurance.

[purple in reply to Zamalek]

Thank you for reply. I am thinking about this and if I don't get any further next week I will definitely consider private - sight is more precious than money.

[purple]

UPDATE:  I managed to get seen a bit sooner at local hospital because I pestered and told them about the APS and poor sight in other eye.  Confirmed that it is a Branch Retinal Vein Occlusion probably connected with the APS. Also spoke to rheumatologist who was interested but wants to wait to see what eye people say.  I am still concerned about INR etc. because I haven't had any advice yet,  but trying to be patient! I would like to say to you all, if you have problems with sudden sight changes, it is a good idea to get it checked out at an opticians who can do a retinal photograph and don't leave it several weeks like I did.

[purple]

you will see above that a year ago I had a branch retinal vein occlusion. Went to opticians last Wednesday and he found a retinal haemorrhage again after I have been discharged from Hospital. So now I'm on the merry go round again. Worried because its in my good eye again. Had shingles in same eye in November 2016, and wondering if there is any connection.

[Lure2]

I think I know that you have too high Beta2Glycoprotein1-antibodies (at least 1 year ago).

I wonder what anticoagulation drug your Specialist of APS has put you on and what INR (if it is Warfarin)?

Best wishes from Kerstin in Stockholm

[purple]

You are right Kerstin.

I am on Warfarin. INR with target 2.5 . Range 2.0 - 3.0. It was the cardiologist that put me on Warfarin for heart arrhythmia (congenital heart defect), the Rheumatologist just seems to go along with it and I don't have an appointment with them until June 2017.

Thank you for your interest.

[Lure2]

Is the Rheumatologist specialized in autoimmun illnesses do you think? I am suspisious......

As you had high titres of Beta-2-Glycoprotein 1, you should probably be at the higher level - an INR of at least 3.5.

I have also heart-issues and those symptoms can often go undetected and we do not "feel" them like vertigo or headache or whatever. Hope you do not have high blood-pressure. We often need a high INR.

Perhaps take a discussion with your Rheumatologist about the INR the Cardiologist has put you on.

Kerstin

[purple]

Thank you for your reply Keerstin. Been to see specialist who confirmed the small haemorrhage in my "good" eye. He also seems to know about APLS and lupus and told me that there was increased risk because of that, which I already knew, but this is the first time a doctor has told me! Back for another check up in 4 weeks and asked him to send letter to Rheumatologist. So feeling fairly satisfied with things at the moment.