Please check in
We have allot of members who haven't checked in in quite some time and it would be wonderful if we could get updates on how they are doing. How can we help?
I just checked in with a question about sunglasses--thanks again for the advice. I've had no flare up of uveitis since the Fall. I feel very fortunate. However, I feel as though I do have some sort of auto-immune condition, perhaps related to the hla b27+ gene. The biggest symptoms are pain and fatigue. The most challenging thing is I never know how much energy I will have, so I'm working a lot less than I wish I could be. This is hard and I'm finally trying to come out of denial about this. When I feel fine I want to believe I'll never have these flare ups again. When I saw a rheumatologist I was tested for lots of various things and x rayed and nothing conclusive. But really, I'm doing ok, it could be worse.
Janine
Re: Please check in
Janine,
I hope you NEVER get an autoimmune disease process associated with the HLA B27 gene besides uveitis.
lest also hope that your fatigue will go away in time once your immune system recovers from your last bout of uveitis.
some of us get chronic fatigue syndrome and Fibromyalgia syndrome. they aren't linked to uveitis but many of our past members have had one or both of them.
Re: Please check in
Hi Mike,
Wow, what you've said has actually given me a ray of hope. Do some people have these kinds of symptoms of pain and fatigue after a flare up of uveitis, even when their eyes are all better? It would make sense that the immune system needs time to get back on track. I did have what seemed like the start of a flare up of uveitis during the winter, which never manifested.
I do fit a lot of the features of the Ankylosing Spondylitis type conditions, though, which does concern me. But, so far, so good!
Thanks Mike!
Janine
Re: Please check in
When the immune sytem goes into overdrive fighting an autoimmune disease, fatigue is commonly associated with it.
you might get blood cell counts to make sure you aren't anemic however or have allot of white blood cells in your system which can also cause fatigue. then have XRAY taken of your spine or joints to see if you have arthritis starting which could also explain fatigue.
one can have fibro along with forms of arthritis. the doctor can do a tender point evaluation to see if you might have Fibromyalgia. meds are available to treat the fatigue and pain associated with fibro and Chronic fAtigue syndrome.
Pain/Fatigue
I've had knee pain on and off for many years. Initially, it was the result of an injury. I've noticed a definite correlation between knee pain and uveitis. Luckily, the Celebrex I take for my eye helps with the knee pain, too.
Re: Please check in
Hey Janine, I'm also concerned about AS-like symptoms this year... have x-rays and a stack more blood tests lined up for early May. Like you, it's also just as I feel the eyes are under control!
One day at a time - this is forcing me to finally be more serious about exercise though, which I suppose can't be a bad thing!
Re: Please check in
Anke,
good luck with the upcoming tests which I hope are NOT signs of Ankylosing Spondylitis etc.
getting extra pounds off is really difficult as we age. I know how hard it is to accomplish this but I have to because my blood glucose is out of whack again.
fat over the abodomen acutal allow an inflammatory compound to be let off from adipose tissue called adipokines. when the fat cells are lean, they don't give off this inflammatory substance. there is an article in my Learning about ocular immunololgy forum if you are interested, just another reason to try to become lean and mean.
Re: Please check in
Hi, All ... finally checking in. My story is too long to write, for me at the moment, anyway. The short version is, I was finally started on mtx in February. Hope that will help. Makes me sick, but I'm always sick and extremely fatigued anyway, so no biggy, I guess. Eye pressure in right eye went up, don't know if it's because of the 360 synechia or the steroid use. Maybe I already wrote all this? So I'm on Alphagan, still on PredForte in both eyes ... been on them four and a half years with zero break in right eye. Left eye just joined in in January, as I wrote. That flare took forever to go down, and I still have a big spider floater and lots of little pepper floaters in left. Dr. Vitale thinks it was just a really bad flare, not that it was pan uveitis in the left. It was really weird, such dark vision, but hope he's right.
I checked in with him in March and will return every six weeks. Hope liver enzymes don't go up so I can stay on mtx, if it works.
Finally spent all my money on COBRA, so no more insurance and no money. Living with parents. Things are pretty grim.
My "issues" are basically the same as they've been for years ... extreme discomfort (gritty, itchy sensation) in the right eye. Cataract still not "mature", but sight very blurry because pupil no longer dilates to allow me to see around cataract. When second eye flared, I couldn't read for two months, only enlarging the type to the very largest on monitor. Dr. Vitale said cataract shouldn't come out for two years or more. I'm in no rush, I am afraid of IOLs, but I can't stand this discomfort and blurriness. My regular doctor said I might always have the discomfort, like someone has an ache from an injury in the leg forever.
Everyone tells me that a LOT of people who get iritis get posterior synechia, but I can't find anyone who has the same discomfort I have. I can't think of what else could be causing this constant discomfort. I am really afraid of the possibilities since it went 360 a year ago (it was 320 or 340 for a year before that, just aq small sliver moved, but I guess that was enough to not worry about glaucoma?). There has been a fingernail-like laceration around one quarter of the iris for many months that will not go away, and eye is always just slightly red.
I think I'm rambling here. No, I KNOW I'm rambling ... sorry! I have been putting off going to eye doctor because no insurance. I used to go whenever I felt the need. Sometimes it would be flaring, sometimes not. I'll just bite the bullet and try to get seen next week. But I have the discomfort all the time, for all these years ... and sometimes I'm flaring when I DON'T think I am, and am just there for a regular checkup!
I can't figure out how to reach Liz ... trying to email with the links in this site directs me through Mac mail, which I have not been able to activate, weird. I would really like to talk to someone about psych meds for depression and bi-polar. I have tried some, but they may have triggered or worsened this condition. My psychiatrist is sick of me because I'm afraid to try so many meds, but even some I've tried have had interactions with some of the other drugs I was on. I saw a new psych last week and he won't treat me because I won't try meds that might raise eye pressure.
I am so frustrated ... the psychiatrists don't know about the eye implications, the eye doctors don't know about the psych meds ... I need help. I am in complete despair and anxiety.
I am sorry if this is "WAY too much information" for the general board audience. But maybe someone can help me with these med concerns? If I could get a handle on this depression and stress, I might function better (?). I know meds aren't a cure-all, and I have a seriously bad attitude that needs adjusting, but I have a long history of depression and I really don't think, after going off everything, that I can do this without meds. I have gone completely over the edge since getting iritis and all the things I've lost since getting it.
And does ANYONE have this awful sticky/gritty/blurriness in their eyes even when not flaring, plus, I forgot to mention, headaches ALL the time. I think the headaches might just be from strain trying to see straight and, of course, tension.
Is it okay to put my email here? If not, erase it.
cecelia717@yahoo.com
Thanks for all the help and support you provide with this site. I still beat myself up for not getting involved with it until I'd had this thing almost two years. Maybe it wouldn't have made a difference, I don't know. Treatment these last three years hasn't stopped it, but it might have been worse.
Re: Please check in
Hi Sheila, sorry life is the pits for you right now.
headache can be related to arteritis and some of the things related to uveitis are vascular in nature. you might ask to be tested for anticaridolipin antibodies and Amyloidosis. if you are ANA positive, you might also ask for the SLE panel which includes Smith antibodies.
I can't comment on the psychiatric drugs.
did you apply for Social Security Disability? with your depression and 20/200 vision you would most likely qualify.
if you can get Medicade approved in the interim from your state it would help with all the doctor's appointments etc and you could also get supplemental income too.
Vision isn't 20/200 at the moment ... it changes a lot. I am appealing disability denial, but am quite certain I will keep getting denied ... I am not legally blind, even when flaring. Can't see worth a darn, but not blind. Visually impaired, in constant pain, and can't think straight at all, but I suppose I'm more mentally/emotionally impaired than anything else, and my psychiatrist won't go to bat for me.
Trying for Medicaid, though I know I'll be denied that, too. I can't even keep straight all the forms I'm having to fill out, documents I need to find and can't. Same goes for subsidized housing, I've been denied by HUD and don't know why. Another place is taking my application, but HUD will probably deny that, too. If not for my parents, I would be on the street, seriously.
I am meeting with a vocational rehab guy who is legally blind (retinal something ... rats, should have written it down) in 10 days ... to discuss low vision tools and also just to try to get my sense that I can function again back. He's already warned me jobs are tough to get here. I know that. It's tough here even if you're a charging ahead at 200% type of healthy person. There are hardly any job openings in anything right now.
Re: Please check in
Hi Anke,
thanks for your response and have you had your testing done? Let me know, ok?
When I saw the rheumatologist he ordered lots of x rays and lots of labs but nothing was conclusive.
Janine
Re: Please check in
Hi Sheila, I'm sorry to hear about what you are going through. I hope brighter days are ahead!
Janine
Edited by: Janine at: 5/5/09 9:39 pm
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Hi Janine, thanks. I had my x-rays done earlier this week, blood tests are tomorrow.. and then probably a two week wait before I can get any results...
Sheila - I hope your next appointment goes well and things start looking up!
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Hi all. Just checking in! I am happy to report that my "ggod" eye is now seeing 20/20 and my "bad" eye is at 20/80 from 20/200. My Dr. does not think that eye will improve much more as I have scar tissue in my eye from not knowing I had Uveitis for 2 years before I finally got diagnosed so it cause some permanent vision loss in that eye so as long as my good eye stays healthy, I am happy. I am starting my 4th month of MTX. I cannot believe it has been that long! My eyes are responding well to 10 mg so I was not raised yesterday when I saw my Rheumy. My migraines have stopped, the nausea is gone and the fatigue has gotten better but by about 3:00pm the day after I dose (I dose the night before when I go to bed) I can feel the tiredness kicking in. I did start to lose quite a few strands of hair and 2 weeks ago cut 10 inches off and donated it to "Locks of Love." I have a great new haircut and I don't have any strands coming out now. All in all, I am happy and I pray it all stays quiet.
Re: Please check in
Kristy,
sounds like a GREAT report and thanks for updating us on your present condition. if the 'scaring' is an epiretinal membrane, they can actually diminish in size over time ( this has happened to one in my right eye, the left remains the same with allot of distortion) so my vision has improved in my good eye over the past few years.
are you off all steroids now without inflammation so that the clock can start ticking toward the two years on MTX alone?
are you taking an iron supplement along with the MTX to help with the side effects?
Re: Please check in
Hi Mike!!
I will have to ask my Dr. about the scarring again. He never mentioned it going away but then again I did not ask. I am only taking MTX. I am allergic to steroids. I do take Folic Acid every day but not iron. I will ask my Rheumy about that. I just had blood work done on Thursday so I will find out sometime next week if all is ok with that when they call and find out about the iron pills then. Thanks for the info! I would love for my 20/80 eye to see better!!
Checking in
Hi Everyone,
Just giving an update – I’m now on Cellcept and it’s working (Praise GOD). My doctor is now taking me off Pred Forte drops; I’m now down to one drop in left eye and 2 in the right. I’m getting pain in my left eye so, I taking advil which is helping. I did 2 Pred Forte drops in the left, which really helped. Is this a normal thing to have pain when being taking off of Pred Forte? Thanks, Kim
Re: Checking in
no, pain of any kind is NOT NORMAL, please bring this to the attention of your opthalmologist. if an NSAID is to be considered in conjunction with the Cellcept, perhaps other types could be used. often Dr Foster adds Celebrex to the mix to quell inflammation. others used are Difusinal and Naprosyn both available as generic but taken at prescription dose with periodic blood tests to make sure all systems are ok.
Checking int
Thanks Mike, I go to the Dr this Thursday and you're right I woke up this morning and it's like I'm starting over again with my right eye. I'm back on the drops. I will ask him about the Celebrex, too. I did have an eye exam and my glasses are 20/40 which is great since I have been on Cellcept.
Thanks, Kim
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