Worried about my IRITIS, shoukd i trust the consultant

[Nikorusama]

Hi, i saw an original doctor (gupta) about 2 and a half weeks ago and she started me on treatment. Dilating drops 3 times a day and predforte every 2 hours. Also maxitrol before bed. My eye was red and painful and that went within a day of treatment. Since then I saw a different doctor (unsure of her name) 2 days after the first who said it was clearing up and to stop my dilating drops and reduce my drops to every 2.5 hours and then ever 3 hours over the next couple of weeks. I had an appointment for 12 days later. Got back to see the original doctor and she said it didnt look any better from the first day and asked if i was taking the medication correctly. I told her that i had missed a few due to work and forgetting. She told me to take the predforte every 2 hours again and to use the dilating drops again and make sure i took them correctly and she would see me in 2 days time. She also got another doctor (chang) to see me because she wasnt to be there in 2 days and i said i wanted someone to see how it was now so they could compare. It turns out that she was in 2 days later an both gupta and chang looked at my eye and said it wasnt any better and might be worse as they thought i also had cloudy viterous. They were about to get me a test which photographs the back of the eye but then told me to see the consultant instead who had never seen me before and ge said he thoght it was getting better from my notes. Thry ordered some blood tests and sent me home. He told me only use my dilating drops at night and to Use the predforte every 2 hours. Since then which was friday, i am worried. Should i trust the consultant or the 2 doctors? The only symptoms i have now are blurred vision and some floaters. I was staring at a computer screen with only my affected eye open and i noticed the light from the screen flashing. When i opened both eyes or just the normal one this didnt happen.

I am meant to have another appointment his coming week. It will be my 6th appointment.

[Mike Bartolatz]

you have to do what the doctors tell you. if the 'consultant' is an ocular immunologist, a fellowship trained ophthalmologist who has done additional training in the diagnosis and treatment of uveitis, then you might consider him to be your expert and do what he says. if it worsens or recurs or becomes chronic, then we can discuss a corticosteroid sparing approach to treatment. our international specialist list might help you find an Ocular Immunologist near you for a consultation. it is in the patient information section of http://www.uveitis.org

wish you the best,
mike

[Nikorusama]

Im not sure what the consultant is. It the NHS of a small town hospital (harrogate) so i doubt he is a specialist in uveitis. I think all the doctors and consultants are just genrally trained opthalmologists. I just find it odd that given 3 different doctors in the same department at the same hospital they have 2 different opinions. Im going back on Wednesday anyway so hopefully if they missed anything, they'll pick it up then. Im seeing the original doctor then so i'll discuss with her why she had a different opinion to her coworker consultant when they both looked at my eyes within 5 minutes of each other. Of course i have done as i have been told by the consultant when i left on Friday but to have 2 different opinions on the same day has to be confusing and worrying.

[Mike Bartolatz]

if you can get to london, see professor William Ayliffe he is an ocular immunologist.

the disagreement shows that none of them are specialists. you owe nothing TO them, you owe saving your vision to yourself. they are not God either but they have ego's that won''t allow them to refer you in most cases to a real specialist.

wish you the best,
mike

[Nikorusama]

Okay so I went back to the clinic and saw a different doctor again. He was a consultant. He said that the anterior was getting better (i had no KPs) but he said that I did have inflamation further back (he said the nerve was slightly inflammed but the blood vessels and retina was fine) and he said the inflammation further back was why i could see lots of floaters recently. He said as it was getting better i should continue on 2 hourly steriod drops. Does this sound about right? Im sure the inflamation further back is low grade but i havent heard so far of people having anterior then getting intermediate if thas in fact what i have. Usually it happens the other way round from what i have heard and that intermediate usually affects both eyes and mine is only in 1. He mentioned eye injections but said that they were unpleasant and we werent at that stage yet. Do you think he was hoping the inflammation further back would settle down on its own? Will my floaters ever go away or will i have them permenantly? I use a microscope with my job and can only see floater shadows all over the visial field in that eye when i look down so its going to hinder me considerably if they wont ever go away.

Sorry for all the questions.

Also i am moving from Harrogate to Leeds in 2 weeks, should i ask to be transferred to Leeds hospital instead? I have heard there is a dr oliver backhouse who is a uveitis specialist consultant there. I dont want to be melodramatic or anything and seeing a specialist if i have only mild or low grade uveitis.

[Mike Bartolatz]

im my lay opinion, the optic nerve involvement signals posterior uveitis and/or intermediate uveitis is present. the steroid eyedrops cannot penetrate past the lens so it only treats anterior inflammation. anything less than a 1 on a scare of 1 to 4 is usually considered to be a quiet eye. the question I have is: Is there cystoid macular oedmema present? an Optical Cohernce Tomography test (non invasive done with a machine without any medications needed) could tell if this is present and if suggestive of problems with the retina or choroid, then a fluorescein Angiogram (dye into a vein and then photographs taken to confirm this) would be used to treat it. injection of corticosteroids would be to tissue outside the eye itself not into the vitreous unless this wouldn't work to quell the inflammation. DMARD drugs might be added to the mix to try to establish a corticosteroid sparing approach to treatment. there might be blood tests to see if there is a systemic condition causing this too.
I have given you http://www.uveitis.org the website of the Ocular Immunology and Uveitis foundation here in the USA which as an international Ocular Immunologist specialist list. I've never heard of the doctor you have mentioned and I don't know anything about places in the UK other than where London is located as I have never been there. to me, seeing Professor William Ayliffe in London would be indicated soon as smoldering intermediate or posterior uveitis can cause major problems to the inside of the eye. He is trained to Diagnose underlying conditons and is one of the Best Experts in the World regarding Diagnosis and treatment of eye diseases.

keep us informed. I'll do my best to help you through this. the webites Olivia'svision has forums where educated individuals in the UK can help. Professor Ayliffe helps with the site and you can email him privatly through the Link above when you bring up his contact information.

If it were me in this situation I would not hesitate in getting an appointment with Professor Ayliffe. my vision was destroyed by intermediate uveitis with CME, Epiretinal membranes and cataracts (successfully operated on) and Glaucoma from steroids to treat it. I never had an opportunity to see a real expert and this is the primary reason I do my online support work so that others can get care they deserve as well as information they can trust as there is one hell of a lot of garbage out there on the internet.

wishing you the very best,\
Mike Bartolatz

[Nikorusama]

Well i went back and saw a different doctor again who said it was getting better. How she knows this is beyond me as she had never seen my eye before and she didnt fill me with confidence when i tried to ask her if i had intermediate uveitis and she didnt seem to know exactly what i meant then i said "viterous" and she agreed...she did take a picture of the back of my eye which noone else had done including 2 consultants but she didnt discuss the results of the scan. I had an increase of floaters since the last time and i am sure i can see a dark spot surrounded by light white around it. Since it has been bright i can also see throughout the whole eye thousands of tiny little dots as well as my much larger floaters. I have no pain however. She told me to continue 2 hourly drops. What i dont understand as if it is getting better these last few times why havent they reduced my drops? And why arent they doing anything about the intermediate part? Can intermediate uveitis clear up on its own?

Im pretty sure if i had anything like CME they would have seen from the scan and all my blood work can back clear. Perhaps im worrying over nothing.

Thank you for all your help so far.

[Mike Bartolatz]

you 'white' vision is disturbing to me as is non treatment of the inflammation in the vitreous explained by all of the specks you are seeing.
you need a consulation soon with an Ocular Immunologist/uveitis specialist to get the care you need as the topical steroid eyedrop CANNOT penetrate deep enough into the eye to stop inflammation in the middle or back of the eye. Optic neuritis or vascular problems cause the 'white out' you describe. it could be a Transcient Ischemic Attack that has caused this and it would require an MRI to look at the optic nerve (with contrast agent) to look for demylination that causes optic neuritis with white out (uhthoff's sign) or to look for vascular problems that could explain this.

I have had this myself and it is related to vascular disease, TIA's and I am on blood thinning medications. I was hospitalized immediately and a full neurolgical work up with MANY blood tests and MRI's were done. I was repeatedly injected with Warfarin to thin my blood, today I take several medications for this. such symptoms are considered to be an Emergency until found to be not problematic.
go to the list at http://www.uveitis.org and get an appointment with one of the specialists. Pay out of pocket if you must but this is getting very serious in my lay opinion. if it is inflammation causing problem in your brain the MRI with contrast can show it. IV STeroids might be required to calm down the vision symptoms. a Neurologist would be need to figure much of this out.

Wish you the best,
Mike

[Nikorusama]

Right well im sure i havent had a TIA. I will ask to be transferred to Leeds teaching hospital instead of harrogate, maybe they might have a better treatment method for the intermediate uveitis. Im sure what i have got is just a idiopathic low grade inflamation but I would at least like to know it is being treated and not left to its own devices back there. I am hoping the doctors in Leeds will know what they are doing more and either treat me properly there or refer me to someone who does know.

Thanks for all your information (although some of it was a little scary!)

[Mike Bartolatz]

please go to http://www.uveitis.org PATIENT information section, SPECIALIST list (International) and go to Great Britain. there you will find contact information for ALL of the specialists who can help you through this. work on getting into one of them if London doesn't suite you.

the other ophthalmologists ONLY KNOW HOW TO USE STEROID EYE DROPS or ORAL STEROIDS and may know how to use STEROID INJECTIONS but they are NOT trained to use MODERN treatment for uveitis of the type that you have. this is nothing to play around with and manuevering through the NHS can be very difficult with these untrained ophthalmologists in use of DMARD and other classes of drug to put your uveitis into remission before you lose a significant amount to under treated uveitis with complicaions.

mike

[Nikorusama]

My mum has advised me to go to my childhood GP prctice and speak to the doctors i have known for years to get a referal to the specialists on the NHS. It will probably take a while but if it goes away in the meantime, that can oniy be a good thing. My mum is pretty sure they'll refer me as these GPs are pretty good. Im hopefully going to go to see them this week so i'll let you know how i get on. I also have an appointment back at the clinic on Friday but im going to prepare some questions this time. I am going to print the treatmeant algorhythm and then ask them why they arent treating the intermediate inflammation and also i am going to ask them what their treatment plan for me is. If they say they dont know then i'll have to kick up a fuss and ask to see someone that does know. Or i'll take my mum with me who is much more forcefull.

[Mike Bartolatz]

Good luck with this, I will be away for the next week without computer access fishing in a remote area of my State so I won't be able to respond to any additional posts next week.

take care,
Mike

[Nikorusama]

Okay well just one other thing, i dont know if this could be connected or not, which is why i am asking, im finding it hard to sleep recently with pressure pain in my hips and bum. You know the kind of pain that you get if you have stayed in one position for too long, well i get that pretty much straight away. I have in which ever bed i sleep in and even if i put a pillow under my bum. I have slept on a memory foam mattress, a normal sprung mattress and another matttress with a feather topper. Its only when I sleep but its hurting my bum and to a slight degree lower back, but only pressure pain. Pain is relieved if i stand up. I am only 25, surely i shouldnt be having this sort of pressure pain!

[Nikorusama]

For when you get back mike, i went to the clinic again today, i didnt go to the GP. Last time i went I had fluid on the retina-is that always cystoid macular edema or could it be something else? They didnt tell me thats what I had last te but i found out this time because apparently I still have it. I have been booked in for an steriod eye injection on e 22nd, so at least now I am being treated for it. Can this fluid cause me any long term problems?

[Mike Bartolatz]

make sure that they employ a SHORT ACTING corticosteroid for the injection. the long acting steroid has the potential to cause glaucoma in some individuals. here in the USA, the Drug AVASTIN is injected into the vitreous with a very small amount of corticosteroids to stop the Cystoid Macular Oedema and neovascularization that occurs in some with uveitis. these to consequences indicate that an underlying autoimmune disese is beginning if there was only an 'ideopathic' diagnosis previously.
your low back pain and buttocks pain is frequently linked to problems with the sciatic nerve. I have this from degenerative disc disease with total errosion of the disk between L5 and S1. other discs are wearing out too.
with HLA B27 related uveitis present, you may well be developing the low back pain from sero negative spondyloarthropathy or enteropathic arthropathies or a combination of them Ankylosing spondylitis, reactive arthritis, psoriasis/psoriatic arthritis, crohn's disease and ulcerative colitis are all linked to the HLA B27 gene and ALL have arthritis of the low back and spine associated with them.
an MRI or CAT scan may be needed to image this type of arthritis. in early stages of the diseases, NSAID therapy often works to quiet things down so that you can taper off the steroids. because you have CMO now, you need to get on DMARD drugs too such as Methotrexate, Cellcept or Imuran to treat systemically to stop the inflammatory process before it causes even more damage to the back of the eye.

Professor Ayliffe can help you through this and I suggest that you get in touch with him soon.

wish you the best,
Mike