uveitis roller coaster

[eyeballs]

hi everyone i just wanted to check in and send an update... i'm on the uveitis roller coaster. it has been 8 months and i still can't seem to get a handle on this crazy disease. i thought i was doing better and dr. samson started me on a 2 drop per day taper. it was okay (still there but not as bad) for about 2 weeks and then baaam, it got worse again. is this how it works? i'm up to 3 drops a day again and i am so sad about it. i thought i was starting to come out of it. it does not help that we are moving to philadelphia in 2 weeks, getting married in 5 weeks and i'm trying to get a grip on the craziness of life. with the uveitis it is so much harder. i am still sad but i'm trying to be as positive as i can but it's hard to be excited about my wedding when i don't know what each day will bring. some days i wake up in pain and sometimes the pain starts later. i have an appt with dr. samson on tuesday and i am going to ask him -- what's next? i need a next step because i feel like i can't live like this forever!

i also have an appointment with dr. foster in boston in two weeks and i hope he may be able to give me some insight.

are there any choices and next steps that i don't know about? i've been told about prednisone and methotrexate.... how long can people be on drops for? it seems like it is a permanent part of my life now.

a question ---- does uveitis get worse when you fly?

mary, how are you doing? i have been thinking of you.

i hope everyone is having a good saturday morning... it's cloudy here in new york city but it's going to be a nice weekend...

[Mike Bartolatz]

you have one heck of allot going on, planning a wedding, a move to philly AND uveitis that most of us have flare up or worsen when we are under allot of STRESS..
as a next step, usually an NSAID would be added such as Celebrex or Dolobid but if you can't take NSAIDs then something like Methotrexate MIGHT be in the offing.
DR's Samson in NYC and Foster in Boston/Cambridge are Fantastic ocular Immunoloogists. together they can figure out what meds will work for you to get you to REMISSION and hopefully years of cell free life.

Wish you the very best,
Mike

[eyeballs]

hi mike,

are NSAIDs usually the second step in treating uveitis?

thank you for your kind words. i know i have a lot going on and i'm sure that the stress of everything isn't helping. i am trying my best to not get stressed or worry about most things but i think there is an underlying stress just from the busyness of everything.

do you know of any dangers of flying with uveitis?

there has been a lot of info in the news about sarcoidosis because of the passing of bernie mac. have you heard of many people with uveitis that turns out to be sarcoidosis?

a friend of mine told me that marijuana may help. i am not a smoker but have you heard anything about this helping with uveitis?

at this point, i am beginning to explore other treatments. my uncle has lyme disease and he takes many herbal supplements and concoctions after trying the conventional medications. any thoughts about this for uveitis?

i know... so many questions for a sunday night. i hope you had a good weekend.

[mtbargeman]

Eyeballs-

Sorry everything is in such an uproar. I know exactly how stressful that can be, with so many changes in your life going on at once. Mine has been a long journey with this disease. Not as long as some folks here- Mike has had Uveitis since he was 16; I have only had it since 2004. Luckily, you caught your disease early , and you will have good care. I was diagnosed by a doctor who did not know much about this disease, and so was treated with only steroid drops, and then only for a short time. I was fighting for Social Security Disability at the time, due to a few other issues, and whilr inundating the SSA with paperwork, I stumbled across Mike. I thank the Powers that Be for that. Mike, in his wisdom, helped me learn about my disease, and how to get care. But I did not find him til 2005, and it was another six months before I found the eye guy I see now. Chronic inflammation and drops combined to give me cataracts at the age of 32. Flares from the stress of surgery caused me to develop subcapsular cataracts. I can't see any better now than when I went in for surgery .

These are the risks we take with these OID's. when we go for surgery. I knew that going in. Since my vision was so bad it was off the chart- I count fingers, I don't read the chart- I figured it couldn't make worse enough to matter. It did not get worse, but neither did it get better. Mine is an intractable case, it seems, but yours does not have to be this way. YOu found us here quickly, and you have good care, and an appointment to see the foremost expert in the world, Dr. Foster. Try not to stress too much about this disease. It will only cause it to be worse. Go ahead and be excited about your upcoming wedding. Not allowing ourselves that joy and wonder , and feeling down, letting that uncertainty and fear take hold, will only bring you to despair. OUr lives are meant to be lived with happiness and with gladness, even in spite of ourselves and our conditions. A life lived in fear and worry and sadness is no life- it is merely an existence. That is not how you want to go into your marriage, I am sure. So BE HAPPY ANYWAY. Anything less is not an acceptable arrangement. I have faith that you will kick this disease, and go on to do great things. In fact, I expect it.
And there is no reason not to fly that I am aware of with this disease. Many of our members travel long distances to receive care. I am certain they aren't sailing over to see Dr. FOster, and very few are taking the bus.

Take Care and Good Luck in your new life!

Mary

[Mike Bartolatz]

there is no reason to worry about flying, it cannot cause your uveitis to flare up or to worsen.
MJ has not benefit for Uveitis whatsoever nor do herbal meds that I am aware of.
MJ has no benefit for Glaucoma either, this is an old wives tale without scientific fact.

Yes, NSAIDS are most often the second line of defense with autoimmune related uveitis. as long as your uveitis is not granulomatus or related to a virus, bacteria or other cause.

Lyme disease can cause uveitis by the way. so can Whipples disease and many other critters. Doctor Foster can answer your questions and get you to remission if at all possible. HE IS THE BEST!

Sarcoidosis can cause uveitis. it is of the granulomatus type and your doctors can tell you if this is a possibility.

if sarcoidosis runs in your family, make sure you list it on the questionaire regarding your Medical history as well as any childhood diseases, recent illnesses and your IMMEDIATE family medical history.

try to relax, see dr Foster and know that things will get better soon, maybe not next week or next month but catching this early on and getting to a REAL specialiust allows the best outcomes.

Wish you the very best,
Mike

[eyeballs]

hi mary and mike,

thank you so much for everything. you both bring some calmness to my crazy world. thank you for gently answering all of my questions and giving me some support to keep fighting this unknown and scary disease. i am trying to stay positive and be happy for all of the days ahead in my life (the wedding, moving, hopefully someday having a baby) but it's still a battle for me every minute.

i am going to see dr. samson today so maybe i'll know more. i will be sure to keep you posted.

have a good day and be sure to enjoy the little things. i'm thinking of you both and sending some extra smiles.

[Mike Bartolatz]

yes this can be a rollercoaster ride but hopefully your doctors can get a next step going soon for you. it may continue to be such a ride for a few more months however and keeping a positive attitude will help you throught this. Depression often occurs (I speak from my own experience here) and there are meds that can deal with this. usually your GP will either suggest counseling or give meds to deal with this. sometimes just anxiety meds will do the trick because you are under so much 'stress' at this time. at least talk to your doctors about this occuring and they will interact with your GP to get something done. I know Dr Foster will send reports to your GP or other specialists as to your care and diagnosis.

often this is the only outlet for our members to get rid of the inner turmoil as most people just don't get it and don't know how to deal with others with problems such as yours.
I know that Mary would be posting more if she could see to respond too. please know that we do care and will listen and try to teach you about your condition(s) as time moves forward.

you are one of the lucky ones with access to some of the very best doctors in the World to help you through this unlike many of our members.

continue to let off steam, ask questions and I as well as hopefully others will get you through this.

Wishing you the very best,
Mike Bartolatz

[Mike Bartolatz]

http://www.uveitis.org/patient/articles ... s/rev.html

above is the health review Questionaire that Dr Foster uses, if you don't already have it, print it and fill it our for your appointments with him and for dr Samson.
take some time with family members to discuss immediate family heath history too as well as that of yourself as a child.
nothing is too trivial to list and you can do that on a separate sheet of paper or if you have a medical health journal that you are keeping, take that along to refresh your mind since we get frustrated and forget things to mention or ask of our doctors.

wish you the best,
Mike

[mtbargeman]

I know exactly what kind of roller coaster this disease can be. Fortunately, you do NOT have to compromise your vision due to lack of knowlegable care the way some of us have done. Please, see that you don't.

Mike is correct- if I could see any better I WOULD post alot more. He is also right to let you know that for many of us, this is the only place to vent about our complete and utter weirdness. I NEVER get a cold or the flu, almost, but if it;s something off the wall like this, it sure will find me. Gee. He is also correct in saying that most people do not understand our disease at all. They accuse us of faking our blindness because our vision fluctuates, sometimes day to day, and even minute to minute, or hour to hour. It can be the single most frustrating, irritating, pissy little disease ever. And even tho it is the third leading cause of PREVENTABLE blindness in the industrialised world, most docs still have never heard of it. And many of them are not willing to learn. Easy math- a Doctor has a thousand patients in his practice. ONE comes up with this disease he does not understand. So he cares for the 999 he understands and pushes the Uveitic patient to the back burner because he probably will never have another patient with this disease. Not that he doesn't care- but he may insulate himself from the patient because he knows he cannot care for them properly, but does not know where to send them for treatment. Luckily, you don't have that problem.

Fill out the questionare, asking parents or other family members to help you with questions about childhood diseases. For example, I was 31 before I ever knew I had the three-day measles. I caught them when I was about two years old, and in the hospital for pneumonia.

In the additional Reading section, I believe I have an article posted about grief. You will greive, whether you admit it to yourself or not, because there have been so many negative changes in your life in such a short time. But so will your family. This is important. I certainly suggest reading the article, if you can bring yourself to do so. I know you may be very light sensitive. I am. Extre,e;y so.

Feel free to vent here, feel free to share with us the good and the bad. We will help you through it as much as we can.

Mary

[Biggs]

HI eye balls.

Uveitis is a crazy disease and really does effect your life style. I have had it for nearly 18 years now.

From my experience, I can safely say just putting you on drops and tapering off will not be that effective. Like you are saying as you get to the end of your course they will start to flare again, It happens with drop and tablets. I know that its hard coping with this and living your normal lift, but don't let it hold you back. The more active and fitter you are the better the disease is to handle, it doesn't stop it but i have found its definitely decreases the amount of flare up i used to have.

I'm glad you are going to see Dr. Foster, he is the best man for the job and put you on the right track. Please don't just keep going back to your other doctor and taking drops after drops, if your not happy i advise you to do as much as possible.

I think Dr Foster will suggest some kind of Immunosuppressants such as Methotrexate.

From my experience this is the only way forward. At one stage kept my eyes quiet for a year, but due to me being young, i stopped taking to tablets because they made me feel really ill, i started to get back onto that slippery slope. Now i am back on a different type of Immunosuppressants and everything is under control and has been for three months.

I'm not sure what type of eye drops you are on, but some of the eyedrops used for Uveitis has quite bad side effect on the eyes if used for a long period of time i.r can cause cataract. It still really confuses me why doctors persist to use this when they have side effects on the eyes.

Your trip to Dr.Foster, im pretty sure everything will become more clear for you and you will be able to start to lead a easier life.

I hope everything goes well

[Mike Bartolatz]

Biggs,
thank you for reaching out to this person.

As an aside, I am thinking about a thread for those in the UK to talk about how they got to Mr Ayliffe and other specialists as the NHS hospitals are crap shoot so to speak as you never knowwho you will see from week to week. you could tell your story and how you finally got the care you deserve.

did your mom or dad contact me several years ago about specialists in the UK as well as contact information for DR Foster in Cambridge/Boston MA?? your case sounds familiar to me.

do you have Juvenile Ideopthic Arthritis, a common cause of uveitis in kids?
( this was formerly called Juvenile Rheumatoid Arthritis)

Wish you the best,
Mike

[Mike Bartolatz]

Mary,
did you ever get the YAG laser surgery to blast a hole in your lens capsule to create a pin hole that you could see through?

for others, mary had allot of inflammation after cataract surgery to implant an Intra Ocular Lens. (common in uveitis patients)

wish you the best,
Mike

[mtbargeman]

No, I have not yet had that done, my doc is waiting to see how thick it will be, and if I form one in the other eye. He said I had a higher chance of getting one in the other eye, since I got one with the first one due to severe inflammation. I am rather disgusted right now. I will discuss this with him when I go back for my next checkup.

I do have one little question, tho. On my birthday, I'm having surgery to repair my deviated septum. I broke my nose when I was 19- I'll be 33 very soon. Since the nasal cavities and sinuses are so close to the eyes, what do you think the chances are of another nasty flare up??? Because if the chances are high, I' going to choose vision over breathing thru both nostrils. My poor beleagered family will just have to put up with my snoring. Forever. Or at least until I am black out blind like they think I'll be, 'cause then it won't matter.

Keep Laughing,
Mary

[specedteacher]

Eyeballs,

You are in the right place here. I started on the roller coaster about 3 years ago. I'd never heard of Iritis and my friends and family never had. I was thinking, I am just one of those weired people with something almost no one else has, untill I found this place and learned a lot of people have it. Since then I have been dropping by here to ask questions and vent when I get frusterated.

MIke, Mary, and the rest of the group here are awesome. There is no better place to ask questions, vent, or just check in and help others out. The acceptance here is total and the support is awesome.

I'm nearing the end of my taper, then it's finger crossing time. I will be seeing Dr. Gross in 3 months if all stays clear, which is our goal. Of course with the crazy iritis/ulvitis coaster you never know what lies ahead.

At least with people like Mike, Mary, and Biggs, we don't ride alone.

Good luck with the wedding.

Brian

[Biggs]

did your mom or dad contact me several years ago about specialists in the UK as well as contact information for DR Foster in Cambridge/Boston MA?? your case sounds familiar to me.

do you have Juvenile Ideopthic Arthritis, a common cause of uveitis in kids?
( this was formerly called Juvenile Rheumatoid Arthritis)

Wish you the best,
Mike

Yes, my dad probabaly did

Yes, is do have Juvenile Ideopthic Arthritis so it probably is me, if it was about 3 years ago.

Haha what a small world it is