Iritis again but little improvement

[Nearlyabride]

Hi
I'm new to site and just wanted any suggestions or advice. Second episode if iritis. The first one was approx 13months ago and I had been suffering with eyes for some months where they felt gritty, sore and red. The pain and sensitivity to light become so bad I was seen by eye hospital and diagnosed with iritis in the right eye.I dilated eye for a good two weeks that time and was on pred forte for about 5 weeks in total. My vision was dreadful at the time and I couldn't even be a passenger in a car without vertigo symptoms however fully recovered although required new glasses prescription as both eyes had detiorated. I'm long sighted with the left eye being a "lazy eye" which was diagnosed when I was a child. The optician said the medication had affected my eye muscles hence sight in both eyes being affected? I think I have that right! This time symptoms came on very sudden and again diagnosed with iritis in right eye. I was advised to dilate 3times a day for 3 days with pred hourly with a slow reduction after 5 days. I also had xray on chest. Reduction of drops never happened as pain got worse with severe headaches and pain down face. 6days later seen again and inflammation severe. They did offer to inject eye but I declined. Told to continue dilating 3 times a day,pred hourly and did blood tests. Seen week later (yesterday) and been moved over to primary care team? They have had some of the blood tests back which seem ok, X-ray on chest fine, inflammation in eye only slightly reduced. I have had lower back pain since last week and have like a tingling feeling down my right side with occasional changing colour of my hand once looking blue. Dr did ask if it was sciatica but I have suffered with this as a young girl and it doesn't feel the same. He then mentioned Ankylosing Spondylitis and sent for X-ray to lower back. My health generally over last year and half hasn't been fab with lots of infections (Sinusitis, bronchitis, numerous episodes of thrush). Dr now wants me to continue dilating eye 3 times a day for next 10days with pred every 2hours and see how I get on with that. My vision isn't as bad as last time however over this last week I feel my left eye is slowly detiorating so my overall vision seems to be getting worse. My job involves lots of reading small print (all paperwork) and I just can't focus well enough to do it. Last time I had to go off sick but this time I'm going in and trying to do what I can which isn't much. I'm finding sitting at my desk for long periods is making pain in back worse as the base of my spine feels like it gets hot almost burning and after a while it will feel almost like I have bruised it with this tingling sensation down right arm and leg. This will very quickly ease when I become mobile.
I'm feeling a little down about lack of improvement and Dr said if there is any inflammation anywhere else in my body it will delay reduction with inflammation in eye and can take upto 6weeks to see improvement. I get married in just under 8 so the timing is not great! If it was AS wouldn't my blood tests in relation to inflammation have shown something? Why is there so little improvement with inflammation? And why does my vision in my lazy eye reduce? If I completely rested my eyes (so stopped trying to do what work I can) would it help with recovery? I would be greatful for any helpful advice or suggestions. Thank you.

[Mike Bartolatz]

First of all I am sorry you have this. it could well be that you have an underlying cause such as ankylosing spondylitis. you could be checked for the HLA B27 gene which predisposes to iritis and to ankylosing spondylitis, crohn's disease, ulcerative colitis, psoriatic arthritis, reactive arthritis. other genes interplay with these things so one can have one of them and be negative for the HLA B27 gene. they are known as teh enteropthic arthropathies and the seronegative spondyloarthropathies. a combination of symptoms appears in most cases.
with over 95 different things associated with Uveitis it is often a needle in a haystack type of thing trying to figure out what the underlying cause is. some of the antibody markers can take decades before they will appear in serum and the drugs used to treat this stuff systemically supress the antibody markers.
there are several things that have the tingling in the face associated with them. the most common is a viral cause such has herpes Zoster or herpes Simplex, this occurs in one eye and pressure goes up because there is a lot of adhesion between the iris and the lens. One would have to take antiviral meds to treat this such as aycylovir or ganacyclovir or Famovir depending on the virus.
Systemic Lupus Erythematosus can also have problems with bells palsey and iritis.
Sarcoidosis can have vascular complaints with a similar bells palsey. it doesn't have to have lung involvement. more and more individuals are being found to have hereforts disease or Blau syndrome. Blau syndrome is normally found in children with Sarcoidosis. the NOD2 gene is associated with it and with Crohn's disease which has major GI problmes associated with it. usually the ophthalmologist can tell by how the cells clump together onthe retina or protein accumulates on the back of the cornea if it is related to Sarcoidosis. you doctor may suspect this because he ordered the xray of the lungs. it can take a Cat Scan with gallium contrast to be able to image early lung disease. this is also true of inflammation of the bones of the Sacrum in Anklosing Spondylitis. Lyme disease is another and it can mimic Multple sclerosis, Sjogren's sydnrome and Systemic Lupus Erythematosus.
Sjogren's syndrome is a triad of severe dry eyes, DRy mouth and it can have thrush because of this. SLE overlaps with Sjogren's syndrome through antibody markers such as the ANTI RO52 (SSA) and ANTI LA (SSB) antibodies. if kidney disease is present, then the SMith antibody and SCL70 antibodies need to be tested for. Sarcoidosis can also have severe dry mouth and dry eyes associated with it and Thrush frequently occurs.
Behecet's disease is another vascular disease which also has mouth sores associated with it.
reactive arthritis also has mouth sores.
the gritty sensation you are feeling is from a thickened lubricant part of the tear film because you don't have enough fluid being produced to mix with it because of Lacrimal gland inflammation. intitial treatment for this is to instil a drop of Lubricating eyedrop in the eye, then use a solution of very warm water mixed with BABY Shampoo and then gently massage along the eyelash line where the meibomian glands are located that secrete the lubricant part of the tear film. you use a drop of lubricating eyedrop so that the secretion from the meibomian glands has something to mix with. it is very important to keep the eye well lubricated to prevent errosion of the conjunctiva, the membrane that covers the surface of the eye. it keeps bacteria and viruses from entering the cornea and sclera (the white part of the eye). the opthalmologist can test for dry spots by putting a drop of dye into the eye and then he looks through his slit lamp microscope for areas of dryness. he can also measure fluid output from the meibomian glands with a piece of litmus paper placed into the corner of the eye and they reading how far up the paper the water goes in a measured peroiod of time. the lower the reading the worse the dryness.
for mouth dryness they take a sample of tissue from your lower lip to biopsy to look for what type of inflammation is present. this is important because if it is related to Sarcoidosis, the treatment is different than other causes as this requires the drug Methotrexate to treat.
they can implant plugs into the drains of the eye to keep what fluid comes out of the eye itself on the surface of the eye longer. I have these plugs called Punctal Plugs implanted into the Upper drains of my eyes. I also use Refresh Liquidgel eyedrops at night to keep my upper eyelids from sticking to my eyeballs because of dryness. I also use periodic drops of Theratears lubricating eydrops during the day,
I am also using Restasis, a prescription eyedrop made from the DMARD drug cyclosporine. this is helping my lacrimal glands to once again produce fluid.
iritis that is recrurrent or chronic is often related to an autoimmune disease or pathogen. it has to be treated systemically to eliminate the underlhing cause. if it is autoimmune as with the HLA B27 gene or some of the diseases mentioned above but NOT BACTERIA OR VIRUSES, then one could try a course of NSAID taken at prescription strength for a few months to see if you can get to 'off all steroids without inflammation'. if yes, then you would stay on the NSAID for TWO YEARS but if you flare up with iritis, then you would have to move on to a DMARD drug such as methotrexate to get you 'off all steroid without inflammaton' once again the TREATMENT IS FOR TWO YEARS once the OFF ALL STEROIDS WITHOUT INFLAMMATION goal is achieved.
needless to say, DMARD drugs cannot be taken if there is a chance that you would become pregnant. I think you can't take NSAIDS either which would limit your choice to steroid eyedrops or injection to tissue SURROUNDING The eye, not into the eye.
I have had many injections which caused pressure to go up in my eyes. along with oral steroids, they caused damage to my optic nerves which is a form of glaucoma. oral steoids can also cause bone density loss and type II diabetes to occur so should you require oral steroids, make sure you get this stuff tested for periodically while on oral steroids.
steroids of any type can also cause cataracts and glaucoma to occur. they also weaken blood vessels and they can cause tissue death (necrosis) to occur.

I hope this helps,
Mike

[Nearlyabride]

Many thanks for all your information. Well I was back at hospital today. Inflammation has gone down so stopping dilating but continue with pred with slow reduction. Nothing has come up on bloods. X ray is not showing anything that they would really link to iritis but is showing some abnormalities and referred to wear and tear. They are sending results to my GP and have said I will have to go back to him so he can consider more tests etc. Eye feels much better although overall vision does feel worse and the vision in my unaffected eye has reduced which is exactly how I feel. Back pain still no better, if not worse. Still finding that sitting, lying, resting make it much worse and when I am standing or moving around it gets much better. Burning sensation in base of spine which radiates to hips and down legs although right side much worse. Both feet will often feel like ice. Right hand occasionally changing colour. Is it just a coincidence they have flared up together? Didn't have back problems last time I had iritis. Should I be asking something else? Many thanks for any advise .

[hayaam]

Just chiming in to say that the symptoms you describe sound a lot like Ankylosing Spondylitis - which I was diagnosed with about a year ago, after 2 episodes of iritis. I have had 4 episodes of iritis in all now, all in the last 2 years. It took the iritis, a positive test for HLA-B27, and a good rheumatologist who asked lots of questions to make the move toward a diagnosis. I remember having what I thought was sciatic pain on and off for the last 5 years or so, but I always associated it with overdoing it, or with pregnancies. My dr. wouldn't dismiss it as sciatic pain, and insisted on an MRI of my sacroiliac? joints (where the back meets the pelvis) and did indeed find inflammation there. I don't always get back pain/inflammation with the iritis - right now I'm having my fourth bout of iritis and no back/joint pain whatsoever. However, I've had a rash on my leg for 5 years that would never go away, and my rheum. thinks this might be psoriasis. I've found it is always very inflamed during iritis.
I'm still working on finding a treatment to prevent future episodes of iritis. For me, Naproxen alone does not work, and I've tried Methotrexate but went off of it after only 4 months due to side effects. I may be forced to give it another try. Right now I'm on the PredForte drops and oral Prednisone for this episode. I, too, have very poor vision in the affected eye.
All this is pretty scary - I totally understand what you're going through. I'm only 34, have 3 school age children...I really don't want to be dealing with this for the rest of my life. I would ask for an MRI of your SI joints...it could be the key to making a diagnosis.
Wishing you the best,
Jill

[Mike Bartolatz]

Jill, talk to your doctor about trying cellcept since you can't take the mtx. then other drugs might help if he can confirm the psoriasis/psoriatic arthritis possibility. can you describe the rash a bit better? Erythema nodosum is one thing that can present on the legs which is a granulomatus disease. sometimes found in Crohn's disease. another is Balanitis linked to reactive arthritis. then there is psoriasis which looks different. all three things are linked to the HLA B27 diseases.
Remicade or Humira could be added to the cellcept if required. usually Remicade works the best in uveitis patients but I know several people who take a low dose of humira to control psoriatic arthritis and uveitis. ..
take care,
mike

[Nearlyabride]

Many thanks Jill. It's nice to hear other people's views. I have today been advised arthritis is in lower part of back but they have said mild at this stage. I'm just on pret now and hope to come off that in about five weeks now. Back did feel a little better over weekend although still waking every night with back, hip and legs but today I have the burning sensation when I'm seating/resting again! I see my Dr on friday to discuss results so don't know if he will consider referring to specialist? It seems strange how this has all flared up at same time yet eye hospital say they don't think it's connected? I guess only time will tell but dread thought of repeated episodes of iritis

[Mike Bartolatz]

it is connected through inflammation. as long as you have inflammation somewhere in your body, you will not be able to get to durable remission and the iritis will be recurrent or chronic in nature.
you need a real expert in this stuff. your local doctors are not well versed in this. you also need a steroid sparing approach to treatment to keep from haveing complications to your eyes from them as they CAUSE cataracts and frequently Glaucoma. two things that require surgery to correct and this sets of major inflammation inside the eye that can be almost impossible to treat and which can lead to other vision robing changes inside the eye, Please do whatever is required to get to an Ocular immunologist to prevent vision loss and to also help prevent complications to arthritis that is allowed to smolder and cause joint damage, pain and perhaps life altering situations to occur.

mike

[Nearlyabride]

I had my appointment with my Dr today to discuss results of blood tests and X-ray. He is referring me to a rheumatologist for further investigations. He has given me anti-inflammatories and wants me to take these until I am seen. The results show anti-nuclear antibodies positive to a titre of 1:160 but all others seem ok so this is why hospital are saying they think iritis and back are not connected. He has given me copies and from what I can see it looks like there was a sample error with the HLAB27? I'm not sure I quite understand it all but the antibodies can show a positive without there maybe being anything significant? And as my other bloods don't show anything they draw this conclusion? Do I have that right?

[Mike Bartolatz]

What 'pattern' are the ANA?
if you are taking steroids orally or inhaled they can impact ANA lowering the number. the drug is doing it's job supressing the immune system.
this is true with DMARD drugs as well. then when inflammation returns, the ANA numbers go back up.
it can take a decade or more for syptoms to directly correspond with ANA numbers often showing Negative for a long time.

get the HLA B27 redone if there was an error. it sounds like they didn't test for specific antibodies. ask to have anti RO (SSA) anti LA (SSB) anti SM and SCL 70 done. these are for Sjogrn's syndrome, Systemic Lupus Erythematosus and systemic sclerosis (scleroderma).
ask for an ACE test too as Sarcoidosis sometimes has a positive ACE test along with ANA positive in a speckled pattern if I recall correctly.
with Sarcoidosis related to uveitis, heerfordts disease is the name without lung involvement. if the NOD2 gene is present, Blau syndrome is present.

Take care,
mike