Burst blood vessels in eye

Wondered if any one can tell me if you can have a burst blood vessel at back of eye with having vasculitis, optician writing to GP to explain what they found in recent eye test, I have anca p with positive MPO antibodies, keep getting splinter heamoriges, raised ESR and CRP levels, now burst blood vessel at back of eye, but Rheumy reluctantly has agreed that I may have PMR after reducing preds to 5mg and was so stiff couldn't hardly move, he has now put me onLeflunomide for inflammation, and very reluctant to diagnose vasculitis just worried about burst blood vessel in eye, thank you for any replies, Val

25 Replies

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  • I had burst blood vessels not at the back of my eye but quite visible. I later had blurred vision. It was all down to my WG. Once it was treated effectively these symptoms stopped. Perhaps you condition is not yet control. I suggest you ring the Vasculitis support number during the day and discuss you current position in more detail. They may be able to suggest an approach that might help. The support number is on the web site.

    Good luck. Keep asking questions till you are satisfied with the answer and the results. It is hard but important.

  • Thank you Jann will look for number, you can't be too careful with the eyes. Val

  • My Mums vasculitis gave her triple vision and visible burst blood vessels in her mouth under the tongue. Hers was pr3 anca+ vasculitis most similar to wg.

  • Hi I also have burst blood vessels in my mouth and I was just wondering what vasculitis ur mum has as I am still waiting to be diagnosed. I also get burst blood vessels in my eyes and alt of joint pain.

    Thanks

    Suzy

  • Hi Suzy have been waiting for diagnoses for about 18mths now, got to the end last week with Rheumy not letting him fob me off any more, down to 5mg of pred could not move so stiff, he tried to tell me it was osteoartheritis not PMR or vasculitis, my GP had X-ray done on my knees no sign of artheritis Rheumy wouldn't believe me so did a scan on knees hisself asked if there was anything there he mumbled something about couldn't find anything, asked him if stiffness was due to PMR his reply was most probably, no definite answer, last year saw an older Rheumy who diagnosed me straight away with PMR but had to see mine the next month, he said no you haven't got it and you haven't got vasculitis either, ready to get a second opinion if no success with the tablets he has put me on Leflunomide, just worried if he dismisses vasculitis and have burst blood vessel in eye could cause me to loose my eyesight, hope you get a diagnoses soon Suzy so frustrating hoping you are on the right medication. Val

  • Hi Val, I too have been trying to get a diagnosis for about 18 mths. I have burst blood vessels in mouth, scleritis in both eyes and stiff joints. I'm not on any medication as I can't get in to see a rheumatologist for 6 mths. Have gone private for some tests, but no one to piece all the bits tog. I'm at the end of my terther. I don't know what one is. I hope you get the correct treatment and start to feel better soon. Where about do you live? Any advice you have wld be great. Thanks. Suzy x

  • Hi Suzy I live in Wimborne Dorset and attend Christchurch hospital in Bournemouth, we must be so lucky living here I know I've not had so good a treatment as some who attend different hospitals, but only took 3weeks for an appointment from my GP, have a Rheumy nurse I phone if I'm not happy with pain or anything, then I'm either seen the next day or as soon as possible, but not happy with my Rheumy to start with didn't really know what was wrong with me just sent me to a phisyo, had blood test at time of first appointment 4 days later had a phone call to go back as blood showed Anca with MPO antibodys, also symptoms of PMR, still didn't get any where with Rheumy after 5 mths of constant pain my nurse made an appointment for me to see another Rheumy more experienced he diagnosed me with PMR within 5 mins put me on 20mg steroids with in a few days pain completely gone, but 2 mths later had to see my old Rheumy whom said no you haven't got vasculitis or PMR so had to reduce steroids, back in pain again last October, have been in pain ever since so stiff in mornings have to shuffle along, had enough last week went in to tell him enough is enough I want a second opinion but he could see how much pain and stiffness I was in so he said stay on 5 mg of steroids and he has put me on Leflunomide to help inflammation, if I have vasculitis as well it would be the same treatment, but optician said I have burst blood vessels at back of eye now so really not happy, it's are body's and eye sight they are playing with, I have felt all along after every appointment I might get an answer next time, I know it can take along time to diagnose which vasculitis you have, but just don't think they understand what pain we are in, sorry to go on about myself, could you not go back to your GP and find out if they can move your appointment sooner for you, tell them you just can't stand the pain any longer and it is ruining your health, I still might ask for a second opinion for the vasculitis, I don't like to be pushy with Drs I just believe what they say, but not any longer if it is affecting your health you need to be seen sooner than later, just worried about burst blood vessels, I hope for your sake your GP can push the appointment on its the mental stress of not knowing what is wrong, I think most GPs aren't very good at diagnosing vasculitis or some Rheumys don't know enough about it, did write on here before and one of the administrator gave me some names of good Rheumys to see, perhaps you could get your GP to refer you to one of them, hoping for some luck for you soon. Val

  • Hi Val, thank you for your reply. Your journey sounds like mine. I have paid for a lot of apps, but I have no more money now to do that and I'm still no further forward. I think slot of people have the same problem. I'm glad you are pushing for the right treatment. Some days though I can't be bothered to fight as I'm too tired. Also I'm sick of the doctors labelling you as just having anxiety. It's not knowing what is going on with our bodies that is making us anxious, not the other way around. So the illness is not anxiety. When you said the mental stress of not knowing what is wrong is exactly it. I go to bed thinking I'll be fine the next day, but I feel worse. Did you put on weight with the steroids?

    Take care and u wish you well.

    Suzy x

  • Hi Suzy yes I put on 3st in 3 mths, ended up with Cushing syndrome that was awful, my sons said you look like a little round barrel mum, because my Rheumy didn't believe I had PMR or vasculitis he said well if you lost some weight you wouldn't feel so tired would you, well I could of socked him one, confidence was a a real low with the weight increase I just went home and cried, I've been on anxiety and depression tablets for 7 yrs and you don't need a Rheumy making you feel it's all in the mind, I did say that to my Rheumy nurse, she said of course we believe you we can tell by my inflammation markers that I have inflammation, what hospital do you attend or will attend, have been told on this site that we really need to see a specialist in vasculitis as a lot of Rheumys don't know enough about the disease to help us, I did get so ill worrying they take so long to decide which vasculitis we have, but try not to worry Suzie I'm sure if we are strong and don't let them fob us of we will get there in the end, take care Val

  • Hi Val, can u private messageMe so that I can ask u some questions. Thanks Suzy. X

  • Yes put on 5stone

  • Steroids don't seem to affect every one with weight gain, think we are just the unlucky ones, but glad I did take them they stopped the pain in just a couple of days, wish there was some thing else we could use. Val

  • Hi, thank you for your reply.

  • I've had a number of eye problems with my gpa (wg) vasculitis. Burst blood vessels, scleritis and episcleritis where the whole eye is red and very painful and inflammation in the vessels at the back of the eye the last of which has left me with permanent damage .

  • So sorry to hear you have been left with permanent damage to you eye DevonLottie, that is my fear as Rheumy is trying to make his mind up what damage is being done. Val

  • Hi Valrene,

    You need to change your Rheumy and seek out a Consultant with experience in diagnosing and treating Vasculitis. Many Dr's are reluctant to make a definitive diagnosis of Vasculitis as its a rare, complex disease. That's why a referral to a specialist Vasculitis clinic is so important. Your recent eye symptoms are very concerning, you need someone experienced to put all the pieces of the jigsaw together. The prednisolone that you have been taking will have masked some of your symptoms making a diagnosis more challenging.

    Please give me a phone on the helpline 0300 365 0075 ( I am going out soon but will be home late afternoon ) or e mail lynn@vasculitis.org.uk

    Best wishes

    Lynn

  • Thank you Keys for your reply, have been out today so only just found your message, I will e-mail Lynn if that's ok. Val

  • Dear Val,

    Without being too technical the answer, to your question, is YES. No 'messing' there then! I have had, an 'on going' eye condition-in fact several- since my diagnosis. It is now one of my, more obvious, 'markers' that something is wrong-my getting a red left eye. I had cataracts develop, about seven years ago now, thankfully they were successfully treated and I now have 'very good' vision (well in the right eye anyway, though the left eye isn't bad).

    To be honest there are so many different ways that vasculitis can 'attack' you it is, nigh on, impossible to rule out 'anything'. Sorry to be rather negative here Val it's just that Vasculitis is such a.....such a....heck I WILL say it BASTARD! On the plus side we are all still , very much, alive-thanks to the dedication of our Doctors/Consultants-and, with the right drugs, and care, should remain so.

    Anyway I'll close now Val-sorry if I have been a 'Doom Monger'. I really do hope, and pray (I mean that), that you get better soon.

    Fondest wishes

    AndrewT

  • Thank you for your reply Andrew, have had blood shot eyes recently told Rheumy he didn't say anything, keep getting the splinter heamoriges on showning him his last comment last week was oh that's a long heamorige never mind it will grow out, asked him last month if it was vasculitis as had petechia on front of my legs, no he said you haven't got vasculitis or PMR either, my GP has said she will refer me to the older Rheumy, unfortunately went to opticians after appointment with Rheumy otherwise could have told him about burst blood vessel in eye, do most Rheumy have knowledge of vasculitis. Val

  • No val, not all rheumy have specialist knowledge of vasculitis, in fact most don't! Whereabouts are you? There are specialists around the country but you need to search them out. Lynn will be able to advise you - vasculitis uk have a wealth of knowledge. Also, ask for a referral to an eye hospital as treatment of vasculitis in the eye is a specialism in itself. Take care.

  • Thank you Devon Lottee I do see a specialist at eye hospital every 6 mths now as eye pressure has starting going down, Optician is writing to GP so hope she will refer me back to hospital again before the 6 mths appointment. Val

  • I have poly arteritus nodosa and suffer eye inflammation called uveitis which is inflammation in eye surface. I get headache to start that makes me feel like i want to curl up into ball and be alone.then eye bursts into red eye.and hurts every time I blink.they usually inject my eyeball with steroids that leave Lil white lumps in my eye and redder than it was but takes pain away.im having it done every 2 months at the moment as they don't have my pan under control! I also have massive ulcers on my shins which are hard to heal. When they breakdown are so painful so on morphine and nerve blocks to aliviate pain. Iv put on 5 stone on pred and got horrid cushings disease.my teach have crumbled due to steroids so due teeth hospital in Aug.

    They say iv developed diabetes due to steroids too.so not having too good a time of it. I do know that taking metformin for diabetes makes the fat around trunk of body reduce significantly. I did drug trial and it worked.

    I find it very hard to find reason to keep going. I'm also very isolated and don't see many ppl.my freinds and family are rubbish and don't care which I find harder than my disease.

    I won't let it get me though.

    I'm waiting to go on ritixumab but had it refused already as I'm too rare. Oh I will keep suffering then but if I had rheumatoid arthritis I'd get it .

    My eye professor at moorfields said they have it there so he's gonna get it for me.

    It's also started to attack my fingers with numbness and black tips ,ulcers and sensitivity .

  • Hi Asilana I thought I had trouble, you poor thing and not to have an understanding family is terrible, well if your friends don't understand they aren't worth getting upset over, but you really need counselling or therapy or something, you sound very depressed to me, I have had a nervous breakdown 7yrs ago, but I'm so lucky with all of my new problems they have all been so kind to me, still on antidepressants after 7 yrs, Rheumy has really upset me lately have been in tears for weeks with the pain and stiffness, then I thought to my self hey I'm not letting anybody make me feel so terrible just because he can't make up his mind what I have got, so saw him last week and wasn't rude to him but just said I can't carry on like this any longer I have had enough of the pain so finally he put me on another immunesuppresent , you only ever get one life Asilana it may not feel like a good one at the moment but keep your head up and don't let your friends and family get you down, eventually you will turn a corner and things will improve, ever since I have been 15 have been on one diet or another try to keep my weight down but last August went on steroids put 3st on in 3months, really made me depressed then I thought I try to eat healthily , have cut chocolate, cake and biscuits out of diet, if I'm hungry now I do have a bowl of porridge or weetabix, the Cushing's syndrome has gone down a lot but not my weight, then decided I would just buy a few nice clothes in a 22 where before I was 14/16 a few leggings bigger t- shirts and cotton tops to cover my bum, get up in the morning wash my hair ,put clean clothes on and just do a little window shopping or go to the park for a walk, I realised and my friends have told me it's not your size that matters it's what is on the inside that does, you may not feel like doing that some days I just want to hide indoors and wonder what people think about my size, then I think it doesn't matter I'm ok with it , so please don't get so despondent that you think no one cares, you may just need some help go to your GP and explain how you feel if they aren't any good try a different GP at your surgery someone you can talk to, sorry about the essay but would love to be able to sit and talk to you, a big hug and really hope things improve for you soon xxx Val

  • I had high pressure behind my left eye, suddenly one morning thought I heard like a tiny slurping noise, though What on Earth was that, oh nothing, seconds later I noticed my eyesight in my left eye had greatly worsened in the top right corner of my eye, straight to my GP's sent me straight to eye dept at hospital where a clinic was In progress, had immediate scan they tested my eyesight, I could not even see the big letters in that eye, Consultant put usual drops in, looked into the eye, a blood vessal had burst, leaving my vision impaired a blood clot had somehow got into that blood vessal and burst it, they did nothing for me, over the next 4 month my vision did recover and the blood vessel repaired itself, however the Consultant warned it could happen again at anytime, have been on high BPmeds plus Asprin since thst day. No reaccurence yet

    I wish you good luck. Laz

  • Thank you Laz for replying, just worried with the blood vessel bursting it may do permanent damage, but if hospital didn't do anything they couldn't be that worried. Val

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