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Home | News | Links | How to Help | Contact Us | Search Patient Information: Support Group: Online Support: Conversations about Uveitis: Who's Who? Brief Member ProfilesThese member profiles are abstracted from conversations on Uveitis SupportI.
Alyse . . . any and all sight I have now is a blessing. I love nature and birding and I can see all of this, but it is a frustrating disease.The first indication that something was wrong with my left eye and got my attention was "floaters". So I had my eyes checked with an ophthalmologist, about 4 years ago. His diagnosis was "take care of your right eye so nothing happens to it cause your left eye has limited seeing abilities", floaters. After a few months went by and my eye was getting worse, while going outdoors in the sunlight my left eye bothered me because of the brightness. I knew something was not right so I started to search for another eye specialist. There I found out what my real problem was, uveitis, uvei what? and I had a cataract. I've had in the past year, treatment with prednisolone (steroid) drops a few times a day, plus voltaren (nonsteroidal anti-inflammatory eye drops) and one other kind I don't recall. Eye chart exam showed no improvement, frustration set in. Time for some pictures of the eye. An injection of dye in my arm and then bright lights and click a snap shot of the inside of the eye and blood vessels, this was not much fun. I had this done 3 times. I also had a few blood tests and a chest x-ray, all were normal. I, however, do suffer from Fibromyalgia (has nothing to do with my eye problems). Some improvement, but not much, came after the 3 injections of prednisone (steroid). I could read a little farther down on the eye chart, that was good news. Now I'm off of the prednisone injections and my right eye has started to get inflamed, so I have been putting prednisolone (steroid) drops in my right 4 times a day for about 2 months or so and now I'm being weaned off of that. The next step is a recommendation to a specialist at
USC Doheney Eye Institute in L.A. on March 6th.
I would like to say that any and all sight I have now is a
blessing. I love nature and birding and I can see all of this, but it is a
frustrating disease, there are good days and not so good days. Most are
good. I am anxious to find out more from this new eye institute and dig
deeper into what can be done and what is causing my eye problems.
Denny has had pars planitis since he was 6 years old. He is 26 now, legally blind, and wants to be able to go back to work.Hello, Just thought I would write this so that you all could learn a little about me. I am a 26 year old who has been diagnosed with pars planitis for 20 years, since I was six. For the better part of that time the disease was controlled by cortizone injections, at least until I was 18. Then I was put on pretnosone and scyclesporin and have been on them off and on since then. After I turned 18 I went through a cataract surgery in my right eye where they put a lens implant in. I also had several laser treatments, Cryo treatments, and membrane peals done to my right eye about this same time. Right afterwards I went back for two different glaucoma surgeries and ended up loosing my sight in my right eye. Then back in 97 I started having major problems with my left eye. So since then I have been up to the Mayo Clinic in Rochester MN almost every week. The major difficulty with my eye now seems to be that the inflammation is causing abnormal blood vessels to develop inside the eye. Because these blood vessels are so immature they break open quiet easily, or at least that has been my experience. The doctors have me on a no activity lifestyle, where I can not exercise or do anything strenuous for fear of breaking open these blood vessels. When a blood vessel leaks my vision gets very hazy. To make this worse the fluid producing part of the eye is surrounded in scar tissue so that there is very little chance of the eye clearing the blood out itself. Also the abnormal blood vessels are blocking the area where the fluid would flow out of the eye. We have done several surgeries to try and fix these things: A surgery where they exchanged the fluid in my eye to give me clearer vision. They also did some cryo treatment and several other things at this time. A cataract surgery where they did not put an implant in. A surgery where they put a Ahmed valve in because the pressure was too high. Another surgery where they exchanged the fluid in my eye for clearer vision. They also did some laser treatment for the retina and some cryo on the abnormal blood vessels. This surgery was done a week ago this last Friday and has improved my vision significantly. Right now I haven't worked since September 21, 2000 because I have been legally blind since that time. That was when the worst of the problems happened. But as of this last Friday I was able to see 20/100 on the eye chart when I went for my appointment. After that appointment I was able to talk my doctor into seeing if I can go back to work when I see him again in two weeks. The doc is still a little iffy he believes that I will most likely have another bleed so he wants to wait the two weeks to be sure. But he does say that my eye is looking a lot better than he thought it would. This last little while has been pretty good news wise for me. Sitting at home and doing nothing isn't really for me. Like I said, I just thought I should introduce myself a little here. Denny Frances wrote . . . "I read your post and think to myself that you are headed down the same road I was" (in a reply to another member on 1/6/2001)My name is Frances and I am 35 years old now. I have had uveitis related to JRA for 25 years. I am near blind in one eye from it and thanks to Dr. Foster and immunomodulators like methotrexate I have 20/20 vision in my other eye. If I didn't listen to Dr. Foster, I would be blind right now and as it is I suffer from continued problems because I was allowed to live with inflammation for so long. I read your posts and think to myself that you are headed down that same road and I hope you read my story and that it helps you to make the right decisions and do the treatment that provides complete resolution of your inflammation. We all know that chronic steroids are not the route to take because they cause damage in and of themselves. You see I was first diagnosed in the 70s and my mother took me to an ophthalmologist who was affiliated with the MEEI, but didn't realize that he didn't specialize in Uveitis. He had a backwards way of thinking and allowed low level inflammation to exist in my eyes and treated me for 13 years with steroids. It wasn't until I was about 24 and working as a nurse that I started to think something was wrong. My vision was declining and I was seeing lots of floaters and was looking through a haze. I then asked for another referral. He sent me to a retina doctor who was absolutely astonished at the damage to my only seeing eye and the cataract that was forming in it. She was the first one to alert me to the cataract and the blinding nature of the disease. I was told it would "burn out", but what I was not told by my first doctor was that it would burn out after I was blind. The retina specialist thankfully sent me to Dr. Foster. On my first or second visit to him, he said if I continue on the chronic steroids and have persistent flares, I would be blind in a few years. I didn't want to believe him and was really angry. It took another year of flare ups and steroids to finally see the light. I went on the next step of treatment, which is the immunomodulators, and after a year or so of treatment I have been in complete remission since 1992. Unfortunately, because I let the inflammation go so long, I have glaucoma. I have had a valve placed to control it as medications didn't work any longer. However, because of the glaucoma and inflammation I now have a badly damaged optic nerve. Despite a low pressure, I recently suffered more damage to the nerve and now have a blind spot in my only one remaining eye. When I read your posts I think, Why would you want to be like me. Massive irreparable damage from prolonged inflammation and chronic steroid use that continues to haunt me with problems. The damage to my optic nerve is not treatable and I am a walking time bomb not knowing if it will produce more blindness. I wished I had someone tell me when I was a lot younger that I would go blind and not that it would be burn out. I also have had bilateral cataracts removed. I am not a candidate for implants and dealing with contacts to see anything and glasses isn't fun, plus your own lens is much better than a replacement as I have lots of glare since having cataracts removed. I don't speak about my left eye because it was finished by the time I was diagnosed. The inflammation caused macular edema and I have no central vision because it was never treated and not having my inflammation properly treated when my cataract was removed has left me with poor vision that isn't retractable. I hope my story helps you to make the right decisions about your treatment. Good luck. Frances Diagnosed with Uveitis at Age 11 and How that has Effected My Life My biggest problem is that this has been happening with my eyes a week before my period for over four years. Both flare-ups happened at that same familiar time. I am just starting to realize how serious this is. I feel like a sitting Duck. What if I don't feel it coming on?Hello my name is Holly. I would like to thank all of you for sharing from your hearts about your personal experiences. I had my first flare up in march 2000. One Saturday night as I was getting ready for bed I noticed my eyes were slightly sensitive to the light and I had a bad headache right where people complain about having a sinus headache. The next morning I felt like I was in a vampire movie and I was the vampire. I finally went to the emergency room sun night. I was told that I had pinkeye by the doctor. I was told to see an eye doctor I might need glasses. I convinced her to take another look. Still she found nothing but decided to do a cat scan since I was blurry in both eyes. She made an appointment with an ophthalmologist for the next morning. I did the whole Iritis what thing. My pupils were funny shaped. I was told to use dilation drops along with prednisolone every hour. He said I would get use to it in a day or two and be able to drive. Three days latter he reduced me to every three hours. All the adhesion were gone except one and I had developed astigmatism I don't recall if they went away but I also had wrinkled corneas and could not see. I just recently found out that I was 4+ but in less then three week no cells or flair. By April 25 I was weaned off all medication but by May 9 2+ in one eye and 1+ in another. I was put on three times a day and weaned to one drop every other day. I had to switch doctor because of insurance has changed at my husbands work. This doctor took me off and it has been five weeks no flair but one scare. Thursday night I was slightly blurry with same headache. My biggest problem is that this has been happening with my eyes a week before my period for over four years. Both flare-ups happened at that same familiar time. I have had all the blood tests twice now nothing conclusive. Also a colonoscopie because my grandmother had crones. I am 38 and a mother of four I don't spend much time on myself I don't have it. Though I have had to slow down. I am just starting to realize how serious this is. I feel like a sitting Duck. What if I don't feel it coming on? Is that possible. Most of the time I am In good spirits. It has really helped knowing that there are others who understand how I feel. If anyone knows of a specialist in the NJ area I would like it just in case. Have a Happy Day, Holly Liz - I have inflammation WHERE?Click here to link to Liz's story which was published in the Uveitis Support Group Newsletter. "My son has uveitis & scleritis. What do I do now?"Click here to ready Mary and her son's story which was published in the Uveitis Support Group Newsletter. Ramona's experience with blinding, Bells' Palsey-related uveitisMy name is Ramona and I am 27 living in Indiana. I have been suffering with uveitis for going on 3 years now. I lost my right eye to the disease in March of 2000 and now am going though this again in my left eye. I am just totally devastated by this. It's bad enough being blind in one eye and now having to go through maybe losing another one to this. Nothing that the doctors do for me really help either. I am not responding to treatment very well. My thoughts are kinda scattered right now, so please forgive me. I guess I could start out and tell you my story. I'm sure you are all familiar with everything that happens when you go through this, though. But, bear with me. In February of 1998, I contracted Bell's Palsy. This is paralysis mainly on the face. At least it's where I had mine at. It was located on the right side of my face. My mouth would slant to one side, I couldn't close my right eye at all, everything just seemed to droop and was very numb. This lasted for about a month. My brother gets the same sort of thing about every 2-3 years, so I knew what I was going through when it happened to me. Within two weeks of getting over that, I came down with Strep throat. Really bad. To the point that I couldn't even hardly breathe for a severely swollen throat. This lasted about a week and a half. Then I went through the normal spring time bout of colds, head and chest. Never thought anything about it. Never even gave it a second thought. I thought that this was just my time to get sick. In June of 1998, I noticed my right eye was getting kinda foggy like. I couldn't really see out of it all that well. It was like a permanent shadow over the right side of my vision field. I just thought that I was extremely tired. Where I work, we had just installed a new computer software system that was going haywire and I had been working 12-14 hour days for weeks trying to get the system up and running by then. I was a first time contact wearer at that time, so I thought that maybe I just needed a break from them, so I quit wearing them and started wearing my glasses again. Well, it just kept getting worse and worse. I didn't know what was going on. I even went as far as getting a new prescription for my glasses. Nothing helped. One day, I noticed my eye was really scratchy. Like something was in it. I always kept eye drops in my desk. Working like I had been, my eyes would start hurting really bad and I would use those. Well, this time when I did, I mean, talk about incredible pain. My right eye went completely blood red, I was totally sensitive to light, couldn't stand my computer screen even on the lowest possible brightness, and got an immediate headache. And I got scared then. I didn't have a clue about what was going on with me. I made a doctor's appointment for that day after work. I just went to my family doctor. I had no clue it was this serious. And he didn't make it seem like it was really serious either. He gave me Gentimiacin drops and Econopred drops and told me to use them twice a day. I will never forget that. Twice a day! He said that it was an inflammation and that it would clear up in a couple of weeks. Well, after a month of severe pain, light sensitivity, headaches, things like that, things wasn't getting any better. In fact, I was a lot worse. I couldn't even hardly work. Sunglasses and Tylenol became my new best friends. So, he sent me to an ophthalmologist. Now, I am not here to bash doctors. I really do believe that they have a God-given gift for healing within science, so don't take me wrong or think bad of me after I say these next few sentences. Anyway, my family doctor sent me to an ophthalmologist. His family has national name recognition in the field of ophthalmology, so I thought, hey, he's sending me to the best. Well, come to find out, it's his FATHER that has the name, not the son, which is who I saw. In two months time, 16 appointments, I hadn't gotten any better. I was really bad. So bad, to the point that it felt like there was so much pressure on my eye and that part of my head, that it was going to explode. By this time, I was off of work, living in a room with all of my windows covered with dark paper. I didn't watch TV anymore. The light hurt too much. All I did was sit there. At this time, I still didn't know what I was dealing with. No one had given me a name for this. They just kept telling me that it was an inflammation in the eye. I remember the day that my dad took me to the hospital finally. He had watched me suffer with this and getting steadily worse for going on four months now. I couldn't sleep that day. The pain was so bad, every time I would lay down, there was just so much pressure there. I would try to turn over on my stomach for some relief and nothing. I was up all night and all day like this. My dad came home from work that evening and my eye was almost totally swollen shut. That's when he packed me up in the car and took me to the hospital. And this is when I found out just how bad I really was and how far gone I really was. When the ER doctor examined me, he was in total amazement. He couldn't believe that I had been under a doctor's care now for 3 months. I had ulcers all throughout my iris, my retina was just a big blob, all swollen and puckered, I had one of the worst cataracts he had ever seen on a person my age, I was a mess. He called in another ophthalmologist from the area. I didn't get to hear all that was being said, but he was furious. That's when I found out that this was called Uveitis and that in my case, I was legally and permanently blind in my right eye. I was devastated and can honestly say here that for the first time in my life, I had thought about suicide. I had always been in perfect health. My whole family is. And now, I'm sitting in this hospital and someone is telling me that this is it. There was no help. The ophthalmologist sent me on to another ophthalmologist that specialized in Uveitis. From there, I went through the Vitrectomy, I went through the numerous steroid shots, the countless appointments. I can say that Dr. Walker did everything in his power to save my eye. I knew going into this that this was all that could be done. He didn't want me to lose the whole eye. And we failed. The last surgery I went through was injecting silicone oil into the eye. I wasn't holding a pressure at all. Normal is roughly in-between a 12-24. I was holding a 2. So, we did the oil shots. That worked and I held a good pressure for about 9 months. Then my eye became once again very red, very painful, swollen, and I was sensitive to light again. I kept thinking, what else is going to happen? Come to find out, my eye decided to go ahead and start making pressure on it's own coupled with the oil that we already had in there and I had severe glaucoma. I was at a 46 pressure in two days time. In a matter of a month, my eye had become as Dr. Walker described it "an 8 ball". There was no iris left. Just one big black dot in the center of my eye. It was at this point that I had had enough. And I made the decision to have it removed. On March 21, 2000, I was wheeled into the operating room, had it removed, and then had a ball of coral implanted. This way, when I would get my prostheses, it would move. I thought that the nightmare was finally over. I was wrong. Like I said in the beginning, I am now in my 2nd month of having it in my left eye now and it's fast becoming a harrowing experience. I'm 27 years old and I have to wear bi-focals now. Pred-Forte and Homatropine are my constant companions now. Prednisone at 60 mgs. daily are getting more and more easier to take, even with the bitterness. Pharmacists know me by name now. I'm getting used to my heart seeming to beat out of my chest because of the pills. Sleepless nights are great to catch up on things. I know. It sounds like I am whining. I am really trying to be strong and brave through this, but it's getting so hard. I see what my family is going through with me. They have had to completely rearrange their lives around me now just to help me make it through my days. I have a beautiful car sitting out front of my house that I can't even drive anymore. I have a cat that I can't even tell by looking at her if she's even breathing or not when she's asleep. When is this going to end? How much more am I going to have to take? I see that people on other boards have gone through this for years upon years. I don't know if I can take that. These past three years have been a living hell for me as it is. I can't handle the thought of having to go through this another 10. Anyone out there have any pearls of wisdom or advice for me to try and live on? Ramona joined Uveitis Support-MEEI on 11/26/2000 Brian's Story, submitted by Mom (Kelli)
Brian's story begins at the age of 7, when we realized he was not
seeing from a distance. He has an older sister who was found to be
nearsighted at this age, so I told him he would get to pick out some
glasses the day I took him to our ophthalmologist. When we went to the pediatric ophthalmologist they did an exam and partial ERG, but only got results on the rods, which were functioning normally. Brian couldn't tolerate the device any longer, so we never found our about his cone function. The only conclusion they came to was that he had one form or another of a genetic degenerative disease. They said to come back when he was 10 and they could probably get better data.
I came home to begin my study about RP, Stargaardt's, cone-rod
dysfunction and all the rest. I had no idea what to do with a child with
low vision, but the public librarian sent me to the library for the
blind, who sent me to the department of human services, who sent me to
the public school vision teacher. (I home school Brian.) I began to read about
low vision and blindness. The vision teacher and I decided to
introduce Braille, believing he was destined to blindness.
Our ophthalmologist recommended a certain seasoned ophthalmologist in
a distant city to get a more definitive diagnosis. This doctor was the
first to find floaters. From the fluorescence angiogram, he
concluded that Brian probably did not have one of the degenerative
diseases. He sent us home to do a short course of prednasone.
This improved Brian's vision from 20/200
to 20/100 to 150. It wasn't much, but it did show that his condition
was inflammatory in nature and not genetic. Brian perceived a big
improvement in his vision. He was happy to have a name for his
disease, pars planitis!
After all the blood tests and chest X-ray, thankfully he fell in the
idiopathic category. We were happy to think he was not necessarily going
to be blind. The only prognosis we got was that the disease burns
out in adulthood, and were told that some people get improved vision and
some do not. This seemed so much better than what we had been thinking. Then
my study took a turn into uveitis, a whole new world! John got this when he was 12 and is now 16 he handles it very well and with glasses plays hockey as well as other sports but it is just the long term effect that constantly worries me.Liz Hi, I am giving you more detail than my last letter about my son John. I was first told he had pars planitis about 5 years ago. He was immediately put on Acular 4 times a day in both eyes, Trusopt twice a day and Timoptic twice a day and FML any where from 1 to 4 drops a day depending on the amount of inflammation and his pressure. His pressure at times has been as high as 32, but usually sits around 18 to 22. The doctor we go to in Oshawa, Ont. Canada is a retina specialist and seems very thorough with John and does not hesitate to get another opinion from others. We also went to Dr. Rabinovitch in Toronto twice. He idea in treatment was always the same as hers. Dr. Baziuk in Oshawa sent us to a Dr. in Montreal in Jan of this year. He put John on Vioxx at the time and took him off the FML (but left all the other drops as is) The Vioxx was given to see if it would get rid of the inflammation that is causing his retina to separate. John took that for about 2 months with no change. We were then sent to St. Michaels Hospital in Toronto, to a Rheumatologist ( not sure about the spelling) to make sure there were no underlying problems that have surfaced since being check for everything under the sun when he was 12. Nothing showed up other than good old Uveitis (chronic inflammation). At this time Dr. Baziuk decided to put John on 50 mg of prednisone for 5 weeks to see it that would get the inflammation to settle down along with his same eye drops. We go again tomorrow Wed March 28 to another Rheumatologist in Oshawa. I am not really sure but I think it is just to be check because of being on the prednisone. I am not to pleased about having to put John on this drug but this eye sight is very important and if that is what it takes I guess we have no choice. We go back to Dr. Bazik the second week on April. I pray when we go back that the prednisone has done its job and he can start to go off it. She did also mention she may add MTX to a lower dose of prednisone depending on what see finds when we go back to her. I hope this explains a little more the problems we have been having for the past 5 years . Thanks for your reply. Susan Chapman P.S. John got this when he was 12 and is now 16 he handles it very well and with glasses plays hockey as well as other sports but it is just the long term effect that constantly worries me. Pam has had symptoms since high school and wasn't told she had uveitis
Hello, my name is Pam and I've suffered off and on with uveitis
since '89.
My old ophthalmologist never caught it during my high school and
college days, although early-onset glaucoma runs in my family. My take is
that he either never caught it OR never bothered to tell me. I've had the
usual symptoms: photophobia, pain, throbbing, redness, blurry vision, loss of
acuity.
I finally got a new doctor in '92 and I haven't a serious
episode since. He put me on Prednisone and atropine, then on Flarex.
The latter was far more effective than the others, with fewer side
effects. Right now eyes are OK but I've lost visual acuity, esp. in the
left eye. My doctor has done all the usual underlying causes. Lupus,
rheumatoid arthritis, sickle cell, sarcoidosis, diabetes, lymphoma.
Everything keeps coming back clean. I haven't had MS screening, perhaps
because I don't WANT to test positive for MS.
But let me throw this at you. Tell me what you think. My attacks
flare up during the late winter and early spring, and then late summer. I
seldom have uveitis flare ups in winter or late fall. Could changes in light,
air pressure, humidity, air temperature, be factors that trigger the
symptoms? So far, the photophobia's been the most bothersome.
I'm back on Flarex for the next ten days until the symptoms
cease. BTW, my pupils have shrunk to the size of pin dots...They've
always been smaller than usual, but now they're really tiny, even in a darkened
room. I have them dilated occasionally but I really don't want to
depend on drops and steroids (which I really don't want to take because of
side effects). I've been looking into alternative
therapies. What about bilberry supplements? I know it's
effective for improving night vision but how is bilberry with other eye
ailments? Pam (4/6/2001) KimMy name is Kim, i'm 32 and live in WI. About 12 weeks ago I was
diagnosed with ulcerative colitis, after several years of denial of
symptoms. I am taking sulfasalazine and things are going pretty good.
Looking back in my medical history I have had UC for quite some time.
After a week he cut me down to every 3 hours and had me continue with
the dialting drops. He also had me start putting the pred in the
right eye. Things seemed to take a nose dive last week. The right eye
looked good, but the left was getting worse. He mentioned the injection
if it doesn't look any better on Wednesday. Kim A parent's perspective (Demi's dad)Click here to link to Glenn's description of he and his wife's search for care their little girl, Demi. Demi is 6 years old and travels regularly to Boston with her family for treatment of her JRA-associated uveitisClick here to link to Demi's story, told in pictures. And, for her parents' description, click here. Em - An adolescents experience with uveitis.Click here to link to Em's story, published originally in the Uveitis Support Group Newsletter. Brenda: I can't believe how much I have learned just from reading the posts on this site!Hello everyone. I know I just kinda jumped in when responding to Kristin's message about school, without properly introducing myself. I just really felt I knew where she was coming from. Anyway, my name is Brenda. Mike B and Jess S should know me from the PP Homepage. I actually had joined this group last summer but my computer crashed then I got into being a student and found I had no time for anything but school. I am 30 years old. I live in Edmonton, Alberta, Canada. I was diagnosed with Pars Planitis / Uveitis when I was 17. Actually, I didn't even know that PP was a form of uveitis until Mike
enlightened me. I can't believe how much I have learned and will learn
just from reading the posts on this site! Thanks to everyone! About
a month ago, i had a vitrectomy in my right eye. So far, so good, but I
still have no vision in the top of that eye. The doctor assured me it
would come back, but I'm wondering if it's a permanent blind spot. These are the kinds of questions, I guess, that I need to ask
him. I also have Fibromyalgia. (I know I'm starting to ramble here,
but it's nice to share!). I joined a FMS support group through Yahoo
groups last week and made a post. I have yet to here from anyone.
What I'm saying is I'm so impressed with the level of care and attention
that people receive at this website. It truly seems like you all are
friends and that is important. Also, I have learned more from Mike B about
Fibromyalgia than I have through the FMS support group. Now I'm rambling,
but anyway Mike, you know I appreciate all the information you pass on to
me. Thanks to all.
Sincerely, Cheryl wrote . . . after a month or two, I had a terrible morning when I awoke with pain and redness so awful I wished for the sun to burn out right then and there!Hi, everyone. My name is Cheryl. I was diagnosed with iritis in the fall of 1998. I only had it in my left eye at the time, but six months later my right eye decided to join in on the "fun". My doctor first treated me with Pred Forte drops and Prednisone. He did a taper of both over the course of six months, and when all was said and done the iritis was not quite gone. The inflammation was very minimal, so he kept me on just drops. After a month or two, I had a terrible morning when I awoke with pain and redness so awful I wished for the sun to burn out right then and there! Of course, I had to drive myself to the doctors office (thankfully it's only a mile away). He put my eye drops back to every hour in both eyes, and told me I had scleritis along with my iritis, but only in my left eye. He treated my left eye much more aggressively than my right. After what seems like forever, the inflammation was down, but never completely gone. I've been on low doses of Prednisone for over a year: had three BAD flare ups over that time. Lucky for me the eyes don't stay bad for very long. At most, a day or two. My doctor has run every test he could possibly think of trying to find some hint of an underlying condition. Of course, like many of you, he has come up with nothing every time. I was on Methotrexate for about eight or nine months last year, and took myself off of it after I was seriously ill from the Methotrexate reacting with Bactrim that I was given bronchitis (I know...I know.....BAD move to quit the drug without doctor supervision, but lucky for me I was okay. No flare up after stopping it.) I still was not completely off the prednisone, nor have I been since before then (that was back in the early fall of 2000). In December 200 I had cataract surgery on my left eye (which is the one that has been predominantly the worst of the two). Surprising to my doctor, my inflammation stayed relatively quiet after the surgery. He had increased my prednisone to 60 mg a week beforehand, then did a quick taper afterward. Of course, no complete remission yet. In the meantime, the long term prednisone use has caused me every problem it possibly can: the bloating, mood swings, food cravings (which caused some big time weight gain, I might add), the high blood sugar, the achy joints when tapering, but worst of all are the muscle aches I get from it. Recently I was taking 25 mg Vioxx daily on top of my 5 mg of Prednisone and my drops 4x daily. I ran out of the Vioxx two weeks ago. Four days after I was out of the Vioxx, another flare up. I went back to see the doctor who said I should be back on 60 mg of Prednisone AGAIN, with more drops (hourly). Not a word about the Vioxx. Not being happy with the answer, I went to see my family doctor a few days later (Oh! I didn't take the Prednisone....instead I went home and took 400 mg of Motrin and felt pretty good an hour later!) My family doc has recommended a trip to the U of M hospital in Ann Arbor to see a different rheumatologist. He wants a muscle biopsy done to see if we can't find out more information on whatever underlying problem I may have. (I'm not completely convinced this is the right route, but.....). I am also scheduled to go see an allergist in the meantime. (I have found that my flare ups occur when the mold count is very high, or when I eat dairy products in large amounts, but because there is no research to back me up, my doctors don't think I'm correct on that note). Anyhow, I could go on and on....and there is much more to this story .... believe it or not! :) I am hoping that someone can direct me to a uveitis specialist in my area. Has anyone had any experience with any doctors in Michigan? I did see one doctor out of Henry Ford Hospital when this all began, but he has since moved to California. (By the way, his treatment was basically what you've read above, as my current doctor was consulting with him a few times regarding me.) I have read through part of "the drill", and have a question: once the inflammation is down and there is another flare up, do you start right away with the oral steroids and medications, or go through trying just drops at first??? Thanks for reading! Hoping for the best for all of us! Cheryl Natalie is 6 years old and has had JRA and severe chronic uveitis since she was 3 years oldWelcome to this wonderful site. My name is
Jane, I am from Sydney Australia
and I have little Natalie who is 6 years old - has had JRA and severe
chronic uveitis since she was three years old but I am confident that we
are
going to beat this. On 12/09/00 my son began a journey with panuveitisWe received a dx of "pink eye" but the eye did not respond to meds given. I have been a psoriatic arthritis pt. for many years, and having a "one-time flare of iritis" and raised the ? of iritis, based on sons level of sensitivity to light and pain. Although I was made to feel my reaction was "over concerned", my son was seen and dx with iritis. We began a ritual of pred. drops and drops to dialate the eye. Son appreared to get better....drops were decreased and then my son felt his other eye was becoming involved. Exam did prove that was true. At all points we asked questions....we were diligent with meds, and we received very little answers. "Everyone is allowed a case of iritis" was all that was given to us. After both of his eyes were involved, we pressed for labs, wondering if another dis. process was driving this iritis....after weeks we finally received the orders for labs to be drawn but only after our request for a pediat. rhuem. was honored. We were told all tests returned "normal" and that the drops were the course of treatment. We did not want something to be wrong with our child, but we had the "gut" instinct something was driving this.....months passed....drops weaned...flares ....drops often hourly....appointments with very, very little conversation from the Dr....even tho we tried to form that relationship. We asked about other treatment measures and were met with looks of indignation. Finally, in June, more than 6 months of treatment, my son flared again, both eyes still involved, flared without ever coming off the drops....just as the drops when decreasing. Dr did not even want to see him....only wanted drops increased again. My son was 12 years old at the time and his pain for six months was not addressed in any manner. He could not bear light in any form, reading was impossible and he missed so much school. Even thru all of this, he managed to do his work, when he could and made High Honors for the school year. He was active in sports and many community activities, before iritis. He struggled to stay involved, his eyes looked like hamburger alot of the time. Iritis impacted him at every level. Out of pure frustration, we took our son to a local "eye doc"....after the response we received from the "eye specialist"...we did not know what else to do...he saw a son immediately. At that point he alerted us to the possibility that our son's eyes were very serious. He saw him on a Wed. was out of town on Thurs, and wanted to see him again on Friday. At that point, he told us we needed special intervention and referred us to Barnes in St. Louis. Barnes made immediate arrangements to see us. And finally we received the verbal exchange we had been longing for. Dr. VanGelder informed us "Your son has very sick eyes." All threee levels of his eyes were involved, with punch out lesions. After much discussion the dis. was made to begin MTX,(15mg) with 1mg of folic acid. Also until the mtx began 65mg of oral pred. We also learned that he has a toxoplasmosis scar which occurred before he was born, this required 600mg of antibotic every day. Being on the mtx, might allow the toxo infection to become active again. We also learned that one lab test ran by the previous dr.(ACE) came back "high" and was never acted upon. Dr. at Barnes ran additional lab work. When we came home with the treatment plan, which included needed follow-ups with "specialist" we were seeing locally, he, at first set an appointment for two months later..we questioned shouldn't our son be seen sooner...and were given a firm no. Shortly after that, his nurse called to inform us the Dr was withdrawing from our sons care. After many phone calls, and another meeting with Ped. Rhuem. learned the local "specialist" did not agree with the treatment plan. Felt the continued use of drops would suffice. This left us with hard questions to ask ourselves....and left us with and uneasy feeling. I did what research I could do....but still was left with a feeling of why would a Dr. reject such a treatment. It was so reassuring to find this site two weeks ago. Although, I have complete confidence in Dr. VanGelder....there was just something here that addressed "that gut instinct" of a parent was correct. I know this is long, and apologize for that, venting....for the first time...no one understands was is going on, even tho they try. I have not read "everything" in your site, but from what I have, I believe we are on the right track....but I did not see Barnes listed in your referral. If I go on the "gut instinct", I feel Dr. VanGelder is the guy to go to. We are still battling! Son cleared completely, for two months, altho became cushnoid. Once steriods were attempted to weaned he flared again. Had considerable reaction to being withdrawn from the steriods....we have had to go so slow...and are are 4mg now. Upped the MTX two more pills and he began to have complete exhaustion. Stopped all activities, slept most of the time and became very depressed. He said it was worth it, if it was working, but it wasn't (Appointment 12/26) so he is coming off mtx. He just had an injection of kenalog in one eye. If pressure stays down, the other eye will be done....Dr. VanGelder mentioned that if son tolerates this well, there is a case study being done with a three-year dosing device....may not have the terminology right but is there a web site on that procedure, I could use to provide info? Thanks again for the time given to this disease. My anxiety level remains high. Cheryl Beethoven - "For six years I have been suffering an incurable affliction, aggravated by imprudent physicians. Year after year deceived by the hope of an improvement, [I am] finally forced to contemplate the prospect of a lasting illness, whose cure may take years or even be impossible." ¶ Ludwig van Beethoven, the "Heiligenstadt Testament"Click here here to read a fascinating account, written by a rheumatologist, of Beethoven's struggle with sarcoid-related uveitis and deafness. Beethoven is such an inspiration, that his story has been placed here as an honorary member. Liz H. - Very glad that I sought the advice of the Uveitis specialist right away Hello Everyone, Liz |
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