Hello all! I am new here and am hoping to reach out to others. After a lengthy period of high stress, I had been feeling poorly for at least a year...... fatigued, brain fog, slowed cognitive function. In July of 2016, I lost partial vision in one eye suddenly and painlessly. It was diagnosed as non-embolic occlusion due to retinal vasculitis. I was put on massive dose of prednisone/steroid. I finally tapered off August 27, 2017. After a year of testing...nothing ws found. They suspect an auto-immune problem. I was off the steroid for 3 months and feeling fine except for hip pain, when it "attacked" my other "good" eye. I am wondering if it could be caused by a virus or something other than an auto-immune than could be more easily treatable. I am still young and have a young daughter to raise and an elderly mom to care for. I don't want to go blind. Has anyone experienced anything similar? If so, what did you do? Thanks so much for you response in advance.
Retinal Vasculitis: Hello all! I am new here... - Vasculitis UK
Retinal Vasculitis
Hi arcr,
There are over 18 different variants of Vasculitis which is an auto immune condition where the body's immune system attacks the lining of the blood vessels causing inflammation. The eye has very tiny blood vessels which can become occluded because of the inflamtion causing vision loss and other symptoms.
My concern is that 1 year of high dose steroids isn't adequate treatment for retinal Vasculitis as usually immunosupressants are continued for at least 2 years after symptoms settle. It's unusual to treat Vasculitis with just prednisolone, usually another immunosupressant is added in as well.
Did you see a Consultant with experience in diagnosing and treating Vasculitis? It's a rare disease and there are relatively few Consultants in the UK who have good knowledge.
Please phone or e mail the Vasculitis UK helpline and hopefully we can discuss options with you.
Best wishes
Lynn
The helpline details. My e mail address is lynn@vasculitis.org.uk
I just sent you an email. Thanks for reaching out.
I am in the US....
Is acyclovir, for example, an immunosuppressant?
Hi Lynn,
I've had retinal vasculitis for the past year as well. I've been put on high doses of pred and I've tapered it down twice and both times my symptoms in my eyes have come back. I'm waiting to go back to the eye specialist in 2 weeks to inform them that my eyes are deteriorating once again. I'm only being treated with prednisone alone as well! I was referred to a rheumatologist but she couldn't find anything else wrong with me and said the retinal vasculitis was a isolated condition. I was also diagnosed with hypothyroidism exactly the same time. So I've had all sorts of different symptoms. I'm also worried about losing my sight and I'm just hoping I'm being treated right!
Jenna!
Hi Jenna,
It is possible to get an isolated retinal Vasculitis as well as symptoms associated with systemic Vasculitis.
Are you seeing an Opthamologist with experience in treating Vasculitis? Where in the UK are you and hopefully I can recommend someone near?
Best wishes
Lynn
I've seen about 4 different opthamologists I think it depends on who is on, on the day I'm due back for a checkup. I'm in between both Nottingham and Derby. I'm currently going to royal Derby hospital.
Hi Jenna,
I will ask around and get back to you. Retinal Vasculitis is rare so it's important to have someone in overall charge of your care.
Thank you! ☺️
Have you seen this? Do you know what part of your eye is affected?
vasculitis.org.uk/living-wi...
Coincidently I am at a big Vasculitis meeting tomorrow in London so plenty of people to ask!
it's a retinal vein occlusion. But not sure if it's the exact same as the occlusion one on the list.
Hi Jenna,
Have made enquiries, just waiting on someone getting back to me.
Brilliant, thank you! ☺️
Exact same scenario with me! My rheumatologist acknowledges an autoimmune problem but since they don't know which, she wants to start me on an immunosuppressive regime as well as Prednisone. Do you have joint aches? Did you have brain fog and dizziness? I am so excited to meet someone else like me. I would ask about immunosuppressive therapy.
They originally were hoping that it was isolated. Three months after I tapered off, I developed cotton wool spots and occlusion in my good/other eye. When they realized that it was systemic, they started talking about immunosuppressive therapies. Tell me more about your experience Jenna.
Jenna, bc my blood work comes back as Unrevealing, my rheumy wants to start me on Cellcept. I have attached a link...maybe you could ask your doctor. Hope this helps...emedicinehealth.com/script/...
I have had dizziness and brain fog and fatigue, but it can all be down to my hypothyroidism so it's hard to say if it's because of the vasculitis. I just feel that my eyes are just not improving. They do when I start on 40mg of pred but as soon as I taper it comes back. I'm just hoping they will try another treatment as the side effects from the high dose of pred are really horrible and it's really getting me down. I just want it controlled. I'll have to mention all this when I go back.
Also it's affecting both eyes. I only noticed the floaters and blurred vision in my right eye. But after inspection they said both are affected.
Yes, I have floaters too. I understand the panic you feel. They also started me on 325 mg aspirin to help with occlusion.Now I am on 81 mg. Your dr should also check your cardiac function and do an MRI and MRA on your eye orbits and brain. Please ask about these things also. As horrible as Prednisone is, I am frightened if immunosuppressive therapies. They have bad side effects, you have to bridge with Prednisone anyway, it may not work and it increases our chances of cancer a lot. Last year I had tapered to 2 mg Prednisone and my eyes were stable. If I can do that again, I don't think I want to do the other. Just my thinking and maybe something to ask your dr about. Tapering too quickly is not good..the slower tje better and with frequent checks. Let's stick together on this Jenna. We are unique! Good luck and keep me posted!
Your/arcr 's situation sound similar to mine. I have had, I think now, 12 eye appointments since last September. As well as being informed of it being retinal vasculitis (worse in my right eye), I have also had to have blood tests, a chest X-Ray and countless eye scans as they want to rule out the possibility of it being Occular Tuberculosis (which I wasn't even away of knowing existed). Did any of you have this tested too? It's so frustrating as i feel like the various doctors I've seen are giving me conflicting situations, but the one I saw last Thursday said he would be reluctant to give me steroid tablets yet as it's "not bad enough", but on blood test papers he has stated that I have them done 'urgently' asap. I'm a bit worried about not having any treatment yet invade it suddenly deteriorates quickly and then may be less likely to be repairable :/
My right eye is worse too & my right ear!!
What is your current status? I have never heard of ocular TB either. Keep advocating and reading asuch as you can, so you can push docs for treatment.
I would really push for some treatment..what is your current status?
I did initially have the X-ray's etc but still a year and a half later no idea why I have retinal vasculitis. I was told sometimes they never find out why. I have been on prednisone for the whole time and it's got better but hasn't gone completely. My last appointment I was told I'd be likely starting Methotrexate as I have been on steroids for too long for someone my age. I'll find out at my next appointment. I'm pretty sure you should be on some sort of treatment. It's not something that will just go away on its own! I would definitely question why you're not being treated straight away!
Have you tried Steroid eye drops? I only use them now and again these days as my eye inflammation is managed with Hydroxychloroquine, Ciclosporin eye ointment & gluten/dairy free & reduced carbs/sugar diet.
Never tried drops....
You can't keep using steroid drops as risk glaucoma but I've had to do a 4,3,2,1 approach previously, i.e. 4x a day for 1/2 weeks, 3x a day for 1/2 weeks & so on. Without the Hydroxychloroquine, Ciclosporin & diet changes I'd have to use steroid eye drops but maybe it depends exactly where the inflammation is in the eye. FML steroids are more longer use than Prednisone.
Perhaps , my inflammation is in blood vessels that feed my retina
I've had that in the past, I have a scar in my retina & was told if it was 1mm to the side I'd be blind in that eye. Now its more inflammation which is visible on the whites of my eyes. Thats been so bad in the past that I ended up with white painful lumps all through my eyeballs! Still, it's painful now, very painful when it flares, not completely under control. Also triggered by artifical light & sunlight, so far no solution!
Hi LH44, sorry to jump in on this conversation. Can I ask if you are following a particular diet or just aiming for overall healthy food? I'm reading up a lot at the moment on diets its impact on the immune system and interested in people's experiences!
Hi, that's fine! I did a process of elimination so by the time I eventually got to a dietician, I already had everything written down! Dairy, Tomatoes, Orange juice & anything acidic inflame my eyes fast! Gluten dries my eyes & mouth out, sugar/carbs not only inflame my eyes but crash me out exactly 2hrs after eating them so I haveto have protein for lunch & eat protein first at dinner. Apparently that's due to my fatigue!
Hello Arcr,
I lost partial sight in my left eye, in Jan 2013, like you no pain but had experienced a little blurring for 2 weeks previous, which l could see but no-one else could! When the vision went grey in that eye, started in the bottom of vision but 2 days later had progressed to ½ of the eye - l cannot see out of it now - it was New Year, so had to wait until the 02 Jan. Cut a long story short, l was diagnosed as having experienced an ischemic optic neuropathy attack.
l had a blood test - amongst many - which showed l had a P-ANCA; this was 10 days after the initial problem and like you l was given prednisolone - started at 60mg - then sent to Eye and Vasculitis CLinics at Addenbrooke's, Cambridge, UK.
In the July l was told to taper my Pred', which l did very slowly, in Dec. l had reached 5mg. Unfortunately, the sight in my right eye started to fail; l'm now partially-sighted in that eye now.
Present Day: Oct 3017. Three weeks ago l started to feel ill and l put it down to the flu jab. I had been slowly - again - reducing my Pred' over a period of 18 mths and was down to 4mg every other day. (See my HU post Bloody Steroids) Anyway 2 weeks ago l started to see objects in my vision and saw my Consultant last week, who thinks l have had another episode like the first one; unfortunately when l did the "field vision test" l had lost more vision, only slight but lt'll not come back.
She believes its tied in with steroids and low blood pressure! So l'm now back up to 5 mg Pred' a day, she's going to speak to some colleagues of her's and "See me in a few weeks"; if l haven't heard by next week l shall contact the clinic. because a "few weeks" is not good enough.
Hope that helps a little to let you know that you're not the only one out there with this issue.
My advice is to just keep badgering your Doctors.
Sally
Thank you so much!! What is your next step? Have they given you any other immunosuppressants?
Hi there, the immunosuppressant l'm on is MMF (Mycophenolate) l take 1gm x 2.
Thank you . I will ask about this! I hope you have a wonderful day.
Good luck in sorting this out. Thank you with regard to the wonderful day, l have in fact just had my first Christmas lunch today at the club l go too.
Sally
I see the rheumatologist on Wednesday. I am a bit nervous.
Hi, seeing any specialist when it comes to a possible Vasculitis diagnoses is likely to be a bit scarey, a lot of how you deal with it will be how the specialist converses with you. I've only seen a Rheumy' twice, my Consultants have - in the main - been from Nephrology.
As they used to say in the 70's "Go with the flow man, go with the flow" which l always interpreted as chill!
Anyway, l've found a link to do with Vas' and the eyes, but don't read to deeply into it yet, as you don't know whether you have it or not; it took 3½ years to get my diagnosis.
Cut and paste the link below: vasculitis.org.uk/living-wi...
Hope it helps.
From that article...."Retinal artery occlusion is where there is a disruption of the blood supply to the eye. This is rare in vasculitis but it results in sudden loss of vision. Further investigations are usually required to determine if the occlusion is primarily due to vasculitis or if there may have been an embolus (clot travelling to the artery from elsewhere in the body) resulting in the occlusion."
Yet this is what I have...non-embolic retinal artery occlusion. Occlusion due to inflammation. It is so confusing since most recent lab work says that systemic inflammation is UNrevealing.
Here's an update in the hopes it may help someone: Have seen the retina specialist who is maintaining 20 mg Prednisone. They found decreased inflammation in the blood vessels of my eyes BUT a new hemorrhage in one eye. Meanwhile at the rheumatologist's, she ran more bloodwork and urinalysis to try to conclude if my vasculitis is systemic or located only in my eyes. The lab came back UNrevealing...inconclusive. In August 2016, no lymphnodes were enlarged. So for now, I am focusing on stabilizing my vision with Prednisone and low dose aspirin.
Any thoughts? Suggestions?
Look up PMR/GCA under the NIH(National institute of Health. web sight..
Bless you!!!!
Thank you ... do you suspect GCA or PMR based on what I have said?
Hi arcr, glad you're getting some info. Sorry l've haven't been in touch but have been in hospital; recovering slowly at home now 
Sally
Oh no! What's going on? Please update me. I went to my general physician who wants to explore a viral possibility since all other markers are inconclusive. So she is sending me to an infectious disease specialist....I have had several Shingles incidences. She thinks could have "flipped the switch" for autoimmune problems.
Hope you feel better soon. Try to enjoy the holiday.
Thanks arcr, very bad chest infection. For the first time ever had to use a nebuliser + oxygen + intravenous antibiotics. Getting better, chest clearing - sort of - still v.tired though but l'll get there in the end.
Have a lovely holiday.
Sally
My elbow and hips are screaming with pain! Has anyone else who has retinal vasculitis experienced this? Thanks
My hips have hurt badly for years and it’s only when I’m told to take a higher dose or steroid that it goes away. The doctor went as far as morphine for Pain but it didn’t help. It was obviously down to the inflammation that comes with auto immune diseases as I see it. In short, yes I do have hip pain along with my eye problems. I hope you manage to get it sorted as it can seriously make your life quality quiet poor. Good luck
Hello, arcr and etal...
I Just read your post and all the replies. This is fascinating. arcr you wrote this 6 months ago, so wondering if they ever decided anything to treat you with? Did they ever determine what it is and what caused it? I have vasc. and auto immune diseases too.
I don't have a clear cut dx on which type of vasculitis yet. But had no idea that it can cause problems with eyes. I was aware it can cause leg, skin, brain, and kidney troubles. It makes sense that it could be due to a problem with small vessels in the eyes. I am not sure if my eye specialist dr. knows anything about vasculitis as he has never mentioned it. Both he and my gp have said they think the problem on my eyes is in the muscles. I will ask about vasculitis when I go to my next appt.
Let us know what your dr says about the cause and if it is vasculitis related.
Best wishes Red
Thanks and hope you are feeling well. They are calling it systemic Retinal vasculitis with a non-embolic stroke. No cause..just like any other auto immune. I have continued on Prednisone bc I was able to remain stable on 2 mg. Ironically, just last Thursday my periodontist diagnosed me with a second autoimmune called Mucous Membrane Pemphigoid...not fun. Not sure yet how they are going to change my treatment in light of this additional problem. What have they diagnosed you with altogether?
arcr... Thanks for reply. After I wrote I looked up auto immune disease and eyes. I was suprised at the amount of auto immune diseases that can have eye manifestations. I think there are like 18 different types of vasculitis, not counting sub categories and over 100 a/i diseases and about 70% can affect the eyes in some way. I had no idea. I was a smoker and most all of them mention smoking as one of the higher risk things that triggers these eye diseases. Not in all of them... but many mentioned it. When I did smoke... (over 10 years ago, now) I used to think they blame everything on smoking. Now, I am so glad I quit... because it could be so much worse. I'll have to look upo that disease you mentioned, thanks for telling me about it. I hope its not a bad one to deal with.
Does the sun bother your eyes?
Red
Yes.the sun bothers me. I smoked as well until 16 years ago....too bad we can't rewind😛
I also wish I could do a rewind as I do feel I may have had some responsibility in the cause of my disease. I was no angel to say the least. I have actually had a period of blindness when I was given tacrolimus and it terrified me as I obviously thought it was permanent at the time. I now have eye tests every 3 months due to my worsening eyesight
Please do give any updates as this is something I worry about big time. Wishing you and all of us the very best
I know... we are paying for it now. Now that we are behaving... LOL!
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