It's back!?!

[Tammie]

Hi Mike!
I haven't been on in awhile. You helped me a lot through my last flare from Feb to May of 08. I started Methotrexate and did not tolerate it very well. So that was d/c'd and I started Imuran in July. I did well on this tx and made it until the end of November without any flares!! But the my 'ol friend raised it's ugly head again! It didn't start out as severe (2+ cells present) but has been very persistent in trying to get under control this time. I have been on Pred drops every hours for a couple of weeks and have also been started on oral Prednisone. I had my first "quiet" day 2 weeks ago Monday and the doc started to taper me off the orals. I was seen again this last Monday and had trace cells back again (despite hourly Pred drops and down to 5mg oral Prednisone) The doc put me back up to 15mg of oral Pred and hourly Pred Forte and will see me again this Monday. I saw my Rheumatologist today and he is going to consult with my Opthamolgist about staring me on Humira. I think I remember reading about this as a good drug for Iritis. Just wanting to check in with you, Mike, to see if you have any suggestions... it's nice to know that this site is here. It brings me comfort to know that I can find support here. Thanks for all you do. By the way, isn't Humira pretty pricey???
Tammie

[Mike Bartolatz]

yes humira is VERY pricey so I hope you have insurance. if you do you may have to fight to get it covered. if you don't have insurance, there is a program that will help pay through the drug manufacturer. each manufacturer is different in this however but your doctors should have the forms to fill out. even people with income of up to about $60,000 a year can get help. there is a link to this in our announcements section and perhaps in the MEDICAL INFORMATION forum of this site. I have place information on Remicade and Humira in the Medical information forum too. also read about the Biolotical Response modifying drugs. there is risk of causing Lupus like side effects and well as increased risk of getting fungal infections with all BRM's. the risks are very low but you asked and I have to tell you this if the doctors didn't. the BRM's can lose effectiveness over time. often best results with uveitis is in conjunction with other drugs. the goal is OFF ALL STEROIDS WITHOUT INFLAMMATON, then the 2 year clock starts ticking with the DMARD and other drugs used to retrain your immune system to stop attacking your eyes. often rheumatologists will try to stop them much sooner but in the experience of DR Foster at the Ocular immunology and Uveitis Foundation http://www.uveitis.org the 2 year period is a must to get you to durable remission from Uveitis

another way to go is for you to take Imuran (cellcept) and cyclosporine A. if you can tolerate the cellcept (part of your post is overwritten so I can't tell all of what you have posted) this combination works in many individuals
I can't recall if you have more than just iritis going on. Please fill me in.

Wishing you quiet eyes,
Mike

[Tammie]

Thanks for your quick response! What are Lupus like side effects? The doctor did warn me about the risk of infection associated with Humira and advised that I have TB test, check for valley fever, and chest x-ray before starting treatment. I also am being treated for hypothyroidism and suspect more going on than just my ocular problem as I have severe fatigue, headaches, flu-like achiness, stiffness, and insomnia. I don't know if this is a side effect of Imuran or something else... I've tried working out to help with the fatigue but sometimes it makes me feel worse the next day... Our family has a health savings account with an umbrella insurance carrier, so we pretty much pay all medical bills out of our HSA and once we meet the yearly deductible the umbrella carrier covers the rest. My husbands company usually changes insurance companies every year in February to get a competive rate... The doctor did give me a brochure today about a copay program offered through Humira. I don't know if we qualify. I do want to do what is best to get this under control. I hope that when my rheumatologist and opthamologist can come up with a good tx plan. If not I will have to follow up with the doc that you told me about it Salt Lake. I can feel that power that this has and I want to do the best to stop that damage that is going to do!! Thanks again, Mike. Hope you had a great holiday and are settling in a healthy and happy New Year!
Tammie

[Mike Bartolatz]

Systemic lupus erythematosus is a very complex disease process. it can be linked to uveitis but sometimes people who use the BRM's have various complaints please see the information SLE in our related conditions forums.
are you positive for any condition related to iritis such as HLA B27 or have a history of autoimmune disease or have a family history of autoimmune disease? I just cannot recall your story.

recently some new genes have been found. please see the article I posted in an announcement at the top of this forum, # genes $ major disorders. the link autoimmune thyroid disease, and other conditions seen with uveitis. your rheumatologist and opthalmologist may NOT KNOW about these genes. if you do have them, Zenepax may be a better choice of medication as it acts on TH 17 an inflammatory cytokine found in these diseases and also seen in uveitis. Humira acts on TNF A which can appear along with TH 17 but it is felt that suppression of TH 17 might lessen the TNF A load and thus it would be a better target for drugs to stop the inflammatory process. even simvastatin used to control Cholesterol seems to lower
TH 17 levels.
often when one has Lupus, one gets butterfly rash on the face, has problems with sunlight causing rash, has lung and other organ involvement such as Kidney problems and what is known as clotting factor problems. frequently Bruising appears with minimal contact or pressure. amyloidosis, cardiolipin Antibodies of various types and what is known as Lupus coagulent appear in the blood. vascular problems and heart and anuerism problems can occur. there can be overlap with other connective tissue disease processes such as sjogren's syndrome which presents with severe dry eyes, dry mouth, skin dryness and in women vaginal dryness. mouth sores can occur too. lung involvement and central nervous system involvement similar to Multiple sclerosis can occur, in the eye, uveitis, keratoconjunctivitis, optic neuritis, vascular changes to the retina can occur too. Scleritis and episcleritis are sometimes seen as well as with SLE etc.
rauynads symptom of the hands and feet. ( hands are very sensative to cold cause pain and redness) occurs.
there are other problems seen with Systemic Sclerosis (scleroderma) on occasion too. Rarely TAkayatsu's Arteritis can occur and temporal arteritis. severe pain is associated with this.

too much information but you asked,

Wish you the best,
Mike

[Tammie]

Much information is greatly accepted, Mike. I don't expect you to remember my history with the number of cases you have been involved with. My initial flare occured in
February of 2007. It was pretty severe with 4+cells present, with fine whitish KP's adherent to corneal endothelium, and full 360 degree posterior synechiae with lenticular fibrotic tissue on the anterior surface of the right eye. It took several months to get this under control with dilating drops, Pred Forte, and Xybrom. And then I went on to develop a flare every couple of months with a few weeks to a month between flares. I am a married 33 year old woman with 3 children ages 2, 5, and 8. And it would be an understatement to say that this has "rocked our world." My husband is amazingly supportive and I have great kids so I am very lucky in that regard. Following my initial flare I was seen by my endocrinologist, whom I was currently seeing for hypothyroidism, and she did initial blood work to find I had a Positive ANA. I was referred to a rheumatologist who followed up with more blood work: sed rate of 6, CRP 1.0, Thyroid Antibody Profile >1000 (H), Rheumatoid Factor 7, ANA positve, ANA Pattern homogeneous, Sjogren's Antibodies neg, C3 Complement Component 130, C4 Complement Component 26, DsDNA Index 7.1, Histone Antibodies 4.3 (H), and the kicker... HLA-B27 PRESENT. So at first, the rheumatologist said that the results weren't conclusive and he would just observe me to see what happened. Then I started having more iritis flares and I visited a new rheumatologist who started me on methotrexate, which I tolerated miserably, and then as of late azathioprine (Imuran) for about 6 months now. I went the longest I had gone between flares (about 6 months) in the last couple of years on the Imuran, however have had a quite persistent case of iritis since November and have had to, like I said, resort to oral prednisone, which as you know, I am not enjoying... So, that's me in a nutshell right now. My question for today is... I am waiting for a call from my rheumatologist who was going to consult with my opthamologist regarding initiating Humira and I was going to fax his office some of the information that you have given me, both in the post from yesterday and in the medical section of this site. Do you think this is a good idea? I really want to become involved in making sure that I recieve the best care and fight this thing in the best way!
Thanks, Mike!
Tammie

[Mike Bartolatz]

the information on the recently discovered genes, IL23RN, ARTS1 and IL1RN with subtypes discovered in Edmonton Alberta, CAnada might be shared with your opthalmologist and your Rheumatologist. the other stuff they probalby know but is good information to share with your Primary Care physician and Endocrinologist.
I say this because the genes above are linked to ankylosing spondylitis AND autoimmune thyroid disease. until now these things seemed to occur together in some individuals but they we're considered to be related. Uveitis wasn't considered to be related to autoimmune thyroid disease either. If you have one of them, the articles indicate that treatment can be more difficult.
Humira is a TNF alpha inhibitor. THF A causes inflammatory responseto occur in some people. it is present in a SMALL amount in some with uveitis. the genes above interact with another form of inflammatory system setting off TH 17 production. using a medication that suppresses this could be of benefit. indirectly, Zenepax (dacluzimubab) might help in that it can suppress TH 17 production.
if you have high cholesterol, there is an article at the bottom of the same topic about the new genes that indicates that Simvastatin helps to lower TH 17 too and would explain its benefit in atherosclerosis.

of the TNF A inhibitors, Humira seems to help some people with Uveitis and related autoimmune disease I know a doctor with psoriatic arthritis now on it who once was on both Enbrel (no use for uveitis) and Remicade. over time they lost affectiveness.

make sure you ask to have all forms of cardolipin antibodies, anti SMith antibody, anti Neuro Myelitis Optica IgG looked into as well. this can appear in ANA postive as well as individuals with ankylosing spondylitis as Amloidosis can sometimes occur.
easy to bruise skin is a sign of some of this which shouldn't be overlooked. Treatment is available for ALL of these things.

one thing I should mention. Uveitis is sometimes caused by the Herpes Sx virus. it causes KP's such as you mention and the 360 deg synechiae which can lead to very low intra ocular pressures, Hypotony. herpes Sx can cause keratoconjunctivitis and it can cause the lacrimal gland to stop producing fluid, thus severe dry eyes. it can cause uveitis as mentioned but it can rarely enter the posterior chamber and this would be VERY SERIOUS. Anti viral medications are used to stop this form of uveitis and the keratoconjunctivitis associated with it.

as with any of this stuff, should your vision deteriorate rapidy you need to get in RIGHT AWAY to an opthalmologist.
if large floaters start appearing, this could indicate intermediate uveitis or posterior uveitis and again, call and get into your opthalmologist right away. should you start seeing rainbows, double vision etc, get in for a pressure check and exam right away as well. Flashes of light in the peripheral vision would also need to be seen right away. Very rarely should you develop intermediate or posterior uveitis, the vitreous membrane can detach or tug on the retina which causes the flashes of light or stars in your vision. rarely bleeding can occur so a very large solid black dot or even a 'black out' of your vision could indicate bleeding or detachment of the retina or along the pars plana just behind the iris and cilary body.
I also know people who swear by remicade. IT works very well for Crohn's as does humira. Humira is made from Human monoclonal antibodies to TNF A. Remicade is made from Mouse monoclonal antibodies. some feel Humira is superior because of this as there might be less likelihood of immune respone negating the means of the Remicade to work ( Ihope that makes sense).
sometimes antibodies specific for Sjogren's wait a decade or more to appear as is the case with Systemic Lupus Erythematosus and other Mixed Connective Tissue Disease processes.

all of the numbers you have when put together may be significant to an Ocular Immunologist in determining what is going on with you systemically.

Wish you the very best,
Mike

PS: are you under the Care of an OCULAR IMMUNOLOGIST? and if so who is it?

[Tammie]

Thanks Mike, for the info. I am sending a fax to my rheumatologist. I have experienced floaters to differing degrees ever since my inital flare. And, I did experience the flashes of light in the periphery of my right eye during this current flare. It was more like drops of light "dripping" down from the top down to the bottom of my peripheral field in the right eye. I went directly to the opthamologist when this happened and he did a thorough exam that was quite uncomfortable, if I might add, and found that I did have an old retinal tear that had "luckily" healed itself. But, he saw nothing else that looked concerning "back" there at that time. And the flashes have since subsided. I don't know what was causing the flashes... maybe the inflammation?!?

I have not seen an occular immunolgist... however, I'm starting to think that it might be a good idea. I was considering it last summer before I started the methotrexate. There is no iritis specialist in Arizona, so I was thinking about visiting Dr. Vitale in SLC, Utah. It was either there or California. Then, after reading your post today, I looked in your specialist forum and discovered a Dr. Mandi Conway with the Associated Retina Consultants in Phoenix. What do you think? Should I try the doc that is local or visit the specialist that is a state away?

As always, your thoughts are much appreciated. Thanks for your support and dedication to this cause.
Tammie

[Mike Bartolatz]

I know that Dr Vitale is an Excellent doctor, I know nothing about the other doctor in you state just trying to provide SOMEONE who know a little bit about this stuff. it is a real crap shoot finding doctors who are worth a damn. who keep up on what's new and who are willing to learn how to treat this with stuff other than corticosteroids and who are will to go the 2 YEARS necessary to retrain the immune system. many people go, get some methotrexate and six months later the doctors start weaning them off QUICKLY. then the patient ends up with another flare up and they say 'you are a failure' so we have to try something else or there is 'nothing else' we can do for you which is a bunch of BS.

with your prior detachment of the retina, DR Narsing A RAo in LA MIGHT see you. usually the flashers are caused by cells settling out of the vitreous the weight on the bottom of the eye starts the vitreous tugging on the retina and then a tear occurs or a detachment of the vitreous begins or both. all of us have our vitreous membranes detach at about 60 years of age. it is so loose that it rarely tears and causes a bleed or detachment. in a younger individual it is not a usual thing nor is a retinal tear. to me it would seem that you have a history of uveitis, perhaps intermediate uveitis/pars planitis which can and most often appears in younger individuals starting in their youth or as young adults. this is an exudative form of uveitis along the pars plana, part of the cilary body. some people have NO SYMPTOMS except for an occasional floater which the GP tells them is NORMAL but this is not the case. anyone under about 20 years of age with allot of floaters should be seen by an opthalmologist, not an optometrist as they are NOT MEDICAL DOCTORS and do not have significant trainging to determine or treat this stuff using MODERN medicine.

sorry I got off on a tangent. make teh appointment and tell DR Vitale's office that the Uveitis Online support group affiliated with DR Foster's site has sent you to him. he co wrote the current textbook on Ocular Inflammatory disease with DR Foster. he has a support group in Salt Lake City too.

if you have never had a depressed scleral exam, ask for one. the doctor uses a small spoonlike instrument to press inward on the white part of your eye along the ring around your iris called the limbus. he looks through the slit lamp and holds a small prism to magnify this part of the eye to see along the pars plana. he will look up, down to the side etc while holding this lens. teh exudate can be in a small spot or in terrible cases (mine) it goes 360 DEG. or less (mine was about 200 deg.)

later on it can 'spill over' into the anterior chamber causing iritis and synechiae (me).
so it actually became more of a 'pan uveitis' as I developed cystoid macular Edema early on lots of debris floating in my vision, pars planitis and iritis with Keratic precipitates (KP's) on my cornea like you.

they have never determined an autoimmune disease connection. I have symptoms of MS and am on meds for Neurological pain. I have fibromyalgia, osteo arthritis, type II diabetes (runs in my family - my brother died from it) and high cholesterol.

once I started taking Simvastatin for my cholesterol, my pars planitis slowed down and went away. co incidence? I don't know but at 55 at the time it was a 40 year journey of allot of smashed fingers, twisted ankles from tripping over everything etc. I just recently learned of the simvastatin link to TH 17 control BTW.

the flashes I would see were kind of a green flash and then it too slid down in my outer peripheral vision. I also have a history of ocular Migrane or migrane with Aura. I only learned of the neuromyelitis optic stuff in the past year and sent the information on to DR Foster for consideration. he had diagnosed devic's but never new about the anti NMO IgG stuff or the new IL23RN, ARTS 1 or IL1RN connections.

Wish you the best,
Mike

[Tammie]

Hi Mike!

I visited my opthamologist today and my eye is quiet! He is going to start tapering me off the oral steroids again, and then, in a couple of weeks will check to see if there are still no cells present and then d/c orals and start tapering of the Pred Forte drops. I hope that the inflammation will stay at bay, the last time he started tapering off the oral Prednisone, I went back to the office with an achy eye and cells present once again. It is such a helpless feeling when your body is going to do something, like "attack itself" and you can try to rest and take care of yourself as best as possible, but it seems like it there is not much you can do to will it to STOP!

So thanks to your site and your recommendation, I talked with my opthamolgist today about sending my records to Dr. Vitale in SLC. He was very supportive of this decision, agreeing that there really are no "iritis specialists" here in Arizona. They were going to fax my chart today along with a note from my doc - I talked to a receptionist at Dr. Vitale's office and they said they would contact me to make an appointment when they received the records. I will check tomorrow and see if they received them.

During my visit today, the opthamologist told me that he had spoken with my rheumatologist last Friday about starting Humira. I have not heard from my rheumatologist yet, or his office!?! Anyways, he said that they had agreed that the Humira treatment should be started. So, I'm guessing that the rheumatologist will be contacting me sometime... I need to call his office tomorrow anyways and have them fax my records to Dr. Vitale's as well...

Do you think I should wait to see how long it takes to get to Salt Lake and see what Vitale says... or should I start the Humira in the meantime... or by the time they do the chest x-ray, tb test, and other labs and get the results I can get up there. Not sure what to do - kind of in limbo right now... I am looking forward to seeing someone that really knows there stuff in this specialty. I must admit that I feel a little guilty about "costing" so much to my family. I know that I need to take care of myself so that I can take care of them... but I'm starting to feel bad about the financial drain that my medical expenses are becoming. And now, I'm going to need to get airplane tickets and pay for another doctor. I'm not trying to complain... just waying a little heavy on my mind lately!

The flashes of light you were describing in your last post were exactly what I experienced. I also suffer with migraines. And I do expierence the "aura" that you talked about. They got really bad when I was in college - going through nursing school. After I got married I was worried about taking the beta blockers and different migraine meds when I was planning to get pregnant, but thankfully did not have to worry as I didn't take any of the meds and I did not experience any bad migraines while I was pregnant and had less occurences between pregnancies. In the last few years I have been having them more often and haven't even paid that much attention to them with everything else that has been going on. But it seems like there probably is a correlation between them and the eyes, I'm sure.

Hope you have a great night,
Tammie

[Mike Bartolatz]

Tammie,
get as many tests done as you can locally and take them with you to DR Vitale. I had assumed the the routine tests such as for TB and Venereal disease had already been accomplished. you might ask that test for ACE be done as well as the anti cardiolipin antibodies and for amyloidosis be done as they might explain the headaches that you get. I don't know your ancestry. some thing occur more frequently in individuals of asian, american indian and Hispanic ancestry. Sarcoidosis and Vogt Koyanagi Harada diseae are two examples. the ACE test is for Sarcoidosis. it doesn't appear in all cases of sarcoidosis. VKH would be a long shot if you aren't predisposed. uveitis is inflammation of the uveal tract with is part of the vasculature of the eye. many autoimmune diseases have a vascular component to them.
you might also see if you can thet the neuromyelitis optica antibody test done too. it is called the ANTI NMO IgG test.

you cannot worry about costs associated with this stuff. the long term consequences of under treated uveitis can be severe with permanent loss of vision. I might wait for imput on taking Humira because it is VERY costly. other drugs might work that are much less costly and all drugs have risk profiles, even humira. Dr Vitale is an expert and will work with your local doctors after he outlines a treatment plan for you.

all of the stress that this stuff brings on can be very taxing on one emotionally. Please know that we all understand what you are going through.

Wishing you the very best,
Mike

[Tammie]

Mike,
I am trying to get in touch with my rheumatologist today... his office is the WORST! The tests that I was referring to earlier (TB, Chest X-ray) were going to be done before starting the Humira because of the risk of infection. I can talk to the doctor to see if he can order some blood work before I go to Dr. Vitale. I am caucasian of swedish and english descent. I have no risk factors for venereal disease and have neg antibodies for such as with routine blood work when I was pregnant. I will follow up with the other tests that you recommended.

One more quick question regarding another symptom of been experiencing... very sore and sensitive gums - they feel very inflammed... is this inflammation associated with other autoimmunities?

Thanks, so very much!!

Have a great day,
Tammie

[Mike Bartolatz]

if you have severe dry mouth, that can cause problems with your gums and cause cavities. this is common in individuals with Sjogren's sydnrome. a lip biopsy would confirm inflammation of the salivary glands which are attacked with Sjogren's syndome. do you get 'mouth sores' too? other dryness issues of dry eyes(lacrimal gland inflammation), vaginal dryness, skin dryness? parotid gland swelling? mandibular gland swelling? these things can overlap with Systemic Lupus erythematosis and other forms of connective tissue disease (rheumatoid arthritis, scleroderma etc). if you have dry mouth, there is no fluid to wash away bacteria causing gum disease and tooth decay. Some doctors will also do a test that measures secretion of fluid inside the mouth prior to doing a lip biopsy. if you have the antibodies SSA and SSB that might be enough if you have several of the symptoms of Sjogren's syndrome. Personally I would seek the latter route as the biopsy of the salivary glands can cause loss of sensation in the lower lip if they hit a nerve. the lip biopsy should be done by someone with ALLOT of experience, an Oral Surgeon: a DMD not a dentist. I mentioned the other tests, for anti cardiolipn antibodies and amyloidosis because they can appear in many of the connective tissue diseases and thing related such as thryoid disease and ankylosing spondylitis etc. these antibodies indicate risk for vascular disease. which can cause headache as well through temporal arteritis sometimes seen in conjunction with uveitis.
the NMO IgG antibody test is for optic neuritis and transverse myelitis also known as Devic's diseaese. optical spinal MS is another name all of which present with this antibody. sometimes seen in conjunction with SLE and Sjogren's patients.
you might print out articles from this site on NMO and tests in either the related conditions forum or the medical informatioin forum. I can't remember off hand where I put them.
the information on 3 genes 4 major disorders might also be printed out and given to your doctors as they may not be aware of this stuff.

Wish you the best,
Mike

[Tammie]

Hi Mike!

It's been a few crazy days around my household and I haven't had a chance to post! But, I wanted to let you know that I scheduled an appointment with Dr. Vitale for February 13th. (Friday the 13th - how's that for luck?) Regardless of the date I am very hopeful and excited to meet with a specialist who truly understands this disease! So I am in the midst of getting all of my other records from my rheumatologist and endocrinologist faxed up to his office and making travel arrangements. My husband's grandma lives in SLC so it will be nice to have a place to stay while we are there.

Today is my last day to take the oral prednisone and then I see the doctor next week and hopefully will get to taper off the pred forte drops and have my eye stay quiet. Did you or has anyone experienced feeling like your heart was really pounding while taking the oral steroids? I don't notice to much during the day but I really had a hard time trying to go to sleep last night because it felt like my heart was going to pound out of my chest. Maybe its anxiety or something endocrine related... not sure?

Happy Friday!
Tammie

[Mike Bartolatz]

I didn't have that kind of thing going on but CALL YOUR DOCTOR for guidance, he may want to taper off the oral steroids.

good luck with your appointmet in Salt Lake City. please don't expect immediate diagnosis from Dr Vitale. He may order additional tests etc when he sees you.

for some, 13 is a lucky number. lets hope that it is for you,

Wish you the very best,
mike

[Tammie]

Hi Mike,

I did go to an urgent care a couple of days ago regarding the "pounding heart" that I was experiencing. I really don't have a primary doc. I see too many "ologists" and haven't been to my old family practice doc for years! So, when I kept having this feeling, I got my older kids to school and had my mom watch my 2 year old while I went to an urgent care. They did a thorough check including EKG and labs. When I was undergoing my initial assessment I was certain that my blood pressure would be through the roof as that is how I felt, but it was 92/60... So, embarrasing as it is, they diagnosed the problem as anxiety. I do have a lot on my mind: worring about getting over this current flare, worried about getting another flare, worried about feeling good enough to take care of my family and my responsibilities, knowing that there are other things brewing in my body other than just my eyesthat are out of my control, worried about insurance/health care bills, and on and on... The doc prescribed Ativan but I did not fill it. Not sure I'm ready to go that route. I've been trying to simplify and am comforted to know that the symptoms that I am experiencing here and there are not cardiac related... although, I know stress isn't good for the ol' ticker either! So that's that.

As for my eye, I have been noticing that my right eye's (iritis eye) pupil is bigger than my left. I have been off of dilating drops for quite some time. Do you think this could be a sign of adhesion? It doesn't feel very uncomfortable, but still not normal. I don't have an appt to see the opthamologist until Monday, but I'll call them in the morning and try to get in.

It's late... I'm headed for bed. By the way, I've seen that it is quite cold up in your part of the country - I had to turn on the air conditioner to "cool" down the upstairs as it got quite warm today and there wasn't enough of a breeze to open the windows and cool it down before I put the kids to bed!

Hope you have a good night,
Tammie