blurry vision

[elephant]

I have noticed that my vision has gotten worse in the last 6 weeks. More blurry when I look far. I can see up close, I do wear glasses in my vision is pretty bad. I was told I have cataracts in the left eye, I am wondering if the cataracts got worse. I will call my eye doctor tomorrow.

[Doug]

Better than nagging, you are showing us by good example! Especially with eye issues, I can't agree with you more: Make the appointment. Now! Like elephant did.

[Sangye]

I hope it goes well, Elephant. Good for you for acting on it. :)

[drz]

I have noticed that my vision has gotten worse in the last 6 weeks. More blurry when I look far. I can see up close, I do wear glasses in my vision is pretty bad. I was told I have cataracts in the left eye, I am wondering if the cataracts got worse. I will call my eye doctor tomorrow.

I noticed the same thing today and figure it is cataracts getting worse and also due to prednisone since I read that it can also cause blurry vision. I also get blurry visionwhen BG has rapid changes which is also a factor with prednisone. i have regular appointments set up with eye doctors and arrangements for them to see me on an emergency basis if I notice anything real suggestive of any eye problem. it seems eye problems are a little easier to diagnose and treat than hearing problems.

[elephant]

I will call in the morning and hopefully get in tomorrow.

[Jack]

Sounds like cataracts to me - if you have an operation to remove them, don't worry about it too much. Although the prospect may sound horrendous the operation is a breeze - pain free and very short recovery time.

[elephant]

I see my eye dr friday morning. So I will let you all know.

[Lightwarrior]

I have noticed that my vision has gotten worse in the last 6 weeks. More blurry when I look far. I can see up close, I do wear glasses in my vision is pretty bad. I was told I have cataracts in the left eye, I am wondering if the cataracts got worse. I will call my eye doctor tomorrow.

My vision has been blurry and cloudy the last few days. I just got out of the hospital today after a 3 day stay for a left kidney ureter stent placement for an obstructing stone. So far so good, just hoping that the invasive surgery will not set off a wegeners flare. The hospitalist in charge of my care thought it riduclous that I was taking Bactrim every other day, refused to update my med list so wanted to take me from 15 of pred to 40, said I didn't need Calcium with 600 of Vitamin D, stopped my beta blocker and put me back on lisonpril. I had took my beta blocker and bactrim from home and refused 25mg of pred every day. Thank goodness he has no control over my care other than in the hospital. If I'm ever admitted again I will refuse him and request another hospitalist, my primary doc is a Nurse Practitioner and our hospital doesn't allow them admitting priveleges, since she has saved my life several times when the "boys" couldn't agree on my Wegs treatment I'm not willing to change providers for primary.

[pberggren1]

I don't blame you Lightwarrior! Some docs can seem to arrogant!

[Jack]

I recently had a similar experience when admitted to a different hospital. I had to be quite assertive and tell the docs what medication I would and would not accept. At the end of the day, they can not force treatment onto you against your wishes. The situation was only resolved after I insisted that they consult with my usual Wegs specialists.

[elephant]

How are you today LIghtwarrior, that doctor is not thinking...Hello of course you need Bactrim.....to increase your prednisone that high without him talking to your Rhuematologist. Another "Hello!"
Usually when I am admitted at the hospital...I felt like I was running the "show." There was one doctor at the hospital that had a clue, she was a hospitalist....thank goodness I felt comfortable with her because I was a mess.....when your that sick you want someone else to be on top of " medical stuff"

[Sangye]

I hope you're doing okay, LightWarrior. Every time I'm hospitalized (no matter which hospital) I have to be on guard like that. I won't even describe my recent hospitalization at a local death trap.

[Lightwarrior]

I hope you're doing okay, LightWarrior. Every time I'm hospitalized (no matter which hospital) I have to be on guard like that. I won't even describe my recent hospitalization at a local death trap.

Sangye, This is the hospital where I work and if it weren't for the nurses I am fearful for John Q public. I had a couple of the docs I work with review the CT "off the record" to make sure the surgery was medically needed, since I was worried about the whole inflammatory process causing a flare. I felt better that they both agreed that it was urgent. I couldn't tell anyone they helped because it would have been "stepping on toes". Elephant, I understand what you mean when you say you have to run the show. I was always a strong patient safety advocate but this experience has strengthed my resolve and made it a mission for me to improve safety and care. Jack, I couldn't get them to get my medication reconcilliation right, which is required by law much less consult one of the docs dealing with me. I made all of those phone calls myself. The people we should feel the safest with can be our worst enemies.

I do feel much better today, I went ahead and took off today and tommorrow and will return to work on Monday. I'm trying to be smart and not push so that I have better long term outcomes.

[Sangye]

Glad you're doing better today, Light. :) I can't imagine how much harder it is in many ways for you being in your own hospital!

At times my friends who visit me in the hospital remark that I'm being a control freak. I check every drug, read all my own lab reports, CT reports, etc.... I'd never stayed in this local hospital before. The vertigo required me to have someone with me every second, so our sangha took shifts 24-7 the whole week. Within the first day, they had seen so many errors (and I was struggling so much to advocate for myself) they decided to keep a notebook listing every interaction, every drug given, etc... The "Advocate Book" got passed to the next person. After a couple days of seeing for themselves the huge number of errors that had been made or almost made, I don't think they'll ever bug me about being on top of things again.

[Lightwarrior]

Mistakes can happen even at the best hospitals. I encourage you all to take a look at the video and/or read the transcript from the Josie King story, her mother Sorrell King has made a huge difference in hospitals perception of their own mistakes, and yet we still make them. You have to have someone advocating for you. Here is the link

Institute for Healthcare Improvement: What Happened to Josie (http://ihi.org/IHI/Programs/IHIOpenSchool/WhatHappenedtoJosieKing.htm?tabId=3)

[elephant]

Got back from the eye doctors....yes my cataracts are much worse and need cataract surgery in both eyes in the fall. The only do one eye at a time. Oh well, least it's not my glaucoma acting up!

[Palmyra]

Mistakes can happen even at the best hospitals. I encourage you all to take a look at the video and/or read the transcript from the Josie King story, her mother Sorrell King has made a huge difference in hospitals perception of their own mistakes, and yet we still make them. You have to have someone advocating for you. Here is the link

Institute for Healthcare Improvement: What Happened to Josie (http://ihi.org/IHI/Programs/IHIOpenSchool/WhatHappenedtoJosieKing.htm?tabId=3)

Hey Lightwarrior,
That's why I am here...a registared member of this site. I don't have WG, but my daughter does. I feel that my participation in her care has minimized the impact of this dasterdly disease for her. I have no problem speaking up, asking questions, reading meds or charts. Most hospitals and nurses are not used to that kind of involvement. Over the years I have tried not to be reactive, but still assertive. Kind but close, with questions being the best way to shed light on something I think may be suspect.

I really appreciate the maturity and focus the members of this forum have on advocating for themselves. Here, here, cheers to good people with sharp minds!:)

[Jack]

The hospitals I have been in have not had any problem with me keeping and dispensing my own medication. The last one just stipulated that I sign a waiver and they provided a locking cabinet to keep them in. At drug round time, they just run through the meds and get me to confirm that I have taken them. I must say that I've never seen anyone else doing this, but there does seem to be provision for it.

[DEE]

it must maybe be a UK thing as i did the same as Jack on my last admission its also a way of been able to take them at your usaual time as very often drugs round time can depend on how busy the nurses are
ive just remembered a pharmasit came to check the doses with me and she signed a form to say it was ok DEEx

[Sangye]

Got back from the eye doctors....yes my cataracts are much worse and need cataract surgery in both eyes in the fall. The only do one eye at a time. Oh well, least it's not my glaucoma acting up!
I'm so glad you got checked, Elephant. Thank goodness it's something that can be easily fixed.

[Carly Hedge]

Got back from the eye doctors....yes my cataracts are much worse and need cataract surgery in both eyes in the fall. The only do one eye at a time. Oh well, least it's not my glaucoma acting up!.

Glad to hear. I have also noticed a change in my vision recently. I have an appt with the eye Dr. in Aug. soonest they can get me in. At least its before our travels in Sept.
I am far sighted and noticed on my way down to visit family that the road signs that I could normally see from a far were blurry. It's mostly at dusk but I should get myself checked since all the meds and my condition. :)

[ian anderson]

I have noticed that my vision has gotten worse in the last 6 weeks. More blurry when I look far. I can see up close, I do wear glasses in my vision is pretty bad. I was told I have cataracts in the left eye, I am wondering if the cataracts got worse. I will call my eye doctor tomorrow.try not to worry too much if your on preds thats the answer i could see england from my highland home now i need telescope to read newspaperall down to those wonderful steroids take care Ian

[elephant]

I am having surgery in the fall, but not to worried the eye doctor said he did over 10,000 cataract surgeries.
Carly, sounds like it could be cataracts, that is exactly what I noticed too and got me to the doctor quickly.
Ian, the doctor said it was from the prednisone, it just happened so fast....but I have been on prednisone on/off for 30 years.

[Sangye]

For new members: High dose pred causes blurry vision that gradually resolves as the pred is lowered. However, if you have to stay on pred for years or often repeat high doses, you can develop the common side effect of cataracts.

Since Wegs can affect the eyes and surrounding tissues, it's a good idea for every newly dx'ed Weggie to get a baseline eye exam by an opthalmologist (ie, not an optometrist, who just works with vision testing for glasses).

[Doug]

The hospitals I have been in have not had any problem with me keeping and dispensing my own medication. The last one just stipulated that I sign a waiver and they provided a locking cabinet to keep them in. At drug round time, they just run through the meds and get me to confirm that I have taken them. I must say that I've never seen anyone else doing this, but there does seem to be provision for it.

This must be a UK thing. If you bring your own medications into the hospital, they confiscate them (if they know about it, by hook or by crook), discard them, and (in one instance of my own experience) even toss the seven-day pill organizer you brought them in away. Ha! The bastards.

[Lightwarrior]

This must be a UK thing. If you bring your own medications into the hospital, they confiscate them (if they know about it, by hook or by crook), discard them, and (in one instance of my own experience) even toss the seven-day pill organizer you brought them in away. Ha! The bastards.

They shouldn't consficate them, but you have to have your doctor write an order, "may take home meds"

[Doug]

That's helpful top know. Thanks, Lightwarrior. I was very miffed when that happened!

[pberggren1]

Doug, that is aweful they took your own meds away from you.

Whenever I have been in the hospital I just keep my meds in my bedside table and they supply all meds while I am there.

[Doug]

That's what I did up till this last time (well, they were in my suitcase in a closet....technicality!), and the medications were from the hospital pharmacy. I guess I have no issue with the hospital supplying the medications (for liability, safety, and quality control reasons), but I was really ticked they threw out the pill organizer. How retarded!

[drz]

They shouldn't consficate them, but you have to have your doctor write an order, "may take home meds"

I have been told they can't or won't accept meds from home or even another facility because they can't vouch for their integrity and there is a liability issue if they give them to you. Even when another facility discharged me to their facility with several thousand dollars of expensive meds, they refused to use them, and insisted on re-ordering their own which I had to pay for again. I think part of it is a profit thing too since they make a lot on selling their own meds to you with the amazing markup included. Then some people wonder why our health care is so expensive with that kind of waste?

[Jack]

Sounds like a money making exercise to me. All they need do is ask you to sign a waiver.

[pberggren1]

That is retarded Doug that they would throw away your organizer.

[Doug]

@drz ~ Yeah, add pharmaceutical CEOs to the list of people buying those $1million cars Jack posted a picture of in another thread. As I recall, those hospital pills looked like they had an 18 carat gold outer shell. (If I remember which link, I'll try to find this one again to, erm, forget it! It's a n inside joke that you'll get once you stumble on it!)

[pberggren1]

I prefer the outside jokes myself!

[Lightwarrior]

I have been told they can't or won't accept meds from home or even another facility because they can't vouch for their integrity and there is a liability issue if they give them to you. Even when another facility discharged me to their facility with several thousand dollars of expensive meds, they refused to use them, and insisted on re-ordering their own which I had to pay for again. I think part of it is a profit thing too since they make a lot on selling their own meds to you with the amazing markup included. Then some people wonder why our health care is so expensive with that kind of waste?

Perhaps it depends on hospital policy. I know in the hospital I work in we have the Doctor write an order to allow patient to take home meds, the meds are sent to pharmacy, identified and then sent back up to the floor for nurses to dispense. When the patient leaves they leave with their home meds or what is left of them. The patients that ask for this option are usually those that have no insurance. The markup on meds is incredible.

[Doug]

"The patients that ask for this option are usually those that have no insurance."

...and those who have insurance, all concerned rationalize, don't care what their medication costs, so aren't told of this option! The high cost of medical care in this country is a pile of similar situations. No villians here, just poor management. (I'm not talking about those managers who drive 1 millian dollar cars here!)

[Sangye]

One of the meds I'm on is common in generic form but not in brand-name. I have to take the brand name because the generic doesn't come in a timed-release capsule. Even hospitals never have it in stock. Whenever I'm going in I bring my own bottle. They do like LightWarrior said-- pharmacy checks it, nurses dispense from my bottle, remainder given back at discharge.

[DEE]

SUFFERING FROM BLURRY VISION AGAIN ,DONT KNOW IF ITS TAPPERING PREDS OR WHAT
HAD CHECK UP WIYH GP THIS MORNING SAID NEED TO GET CHECK AND GET BACK TO HIM
AND YES MADE AN APPOINTMENT FOR FRIDAY PM
MAYBE THEN I WILL NOT HAVE TO SIT SO CLOSE TO THE SCREEN :) DEE x

[elephant]

Do you make one for the eye doctor, they can check real you out for cataracts/glaucoma.

[DEE]

yes as they told me last year i had the beginning of a cataract in left eye but gp concerned because of the length of time ive been on high preds ? will let you know how i get on DEE x

[Jack]

My cataract were due to taking Pred and progressed much more quickly than the type associated with old age.

[Doug]

Denver Health Medical Center: I put that name up as the villian in my tale!

They are set up for care of people with limited incomes, no health insurance, poor health insurance, in short people in financial need within the Denver city limits who need medical and dental care. I was an exception to their clientele in that I wasn't local and I had (and have) health insurance that covered all expenses after the first US$1500 each year.

There is a teaching offshoot for oral surgery associated with DHMC, and, because my dentist had me see an oral surgeon who felt the more specialized skillls at the teaching offshut of DMHC staff was called for (a dentist who knew an oral surgeon who recommended I see another oral surgeon so my rare - one in 40 documented cases between 1890-2007- herpes zoster-associated osteonecrotic mandible on the right side could be documented in a paper and baby oral surgeons could experience a patient with the condition...), they pulled strings to get me hospitalized at DHMC. The oral surgery was free, actually, because I was their guinea pig.

DHMC screwed up the billing, left me in an unheated (ice box) of a room for five hours the first day while they "prepared a room on the isolation floor", didn't feed me the first night (I'd gone to Denver knowing- I thought- I'd have surgery at ten AM, hadn't eaten, went through several preliminary tests and interviews by three different sets of doctors, put me in a room at 9:30 pm (I started the process at 1 pm), didn't feed me breakfast the next day (the day I actually had surgery), didn't let me take a shower (in medical isolatioon, good hygiene isn't an option!), didn't feed me lunch, didn't feed me supper (surgery had to be done after all the Denver patients were taken care of because I was the oral surgery teaching unit's guinea pig, their after hours science project: the time kept getting pushed back), finally performed the surgery around 8 pm, and, when I got back to my room, were abole to bring me a juice and half a sandwich to hold me until the next morning! The next morning, I still couldn't get a shower. When the head of the doctors running that floor came around, I unloaded. [This is a hospital that serves poor people, and there seems to be a "they will rob us blind if we don't watch them" attitude I don't care for.] Next thing I knew, they brought in not only enough gowns, towels and miscellaneous grooming aids for a shower and clean up that day, but enough to last me the rest of my stay!] The oral surgeons, on the other hand, were solicitous, great help, and very good.

Still with me? Gad! What a glutton for punishment!

THIS is the hospital, DHMC, that took my pills, not to verify they matched what I said I was prescribed at that moment so they could dole them out to me until I left, but, rather, to discard everything, pillbox and all.

Plus side- I always try to find a positive in a negative: Denver Health Medical Center was remodelling floor by floor, and I was in a newly-remodelled (floor open just days earlier) private room on the ninth floor that had a panoramic window and a US$1000000 view of downtown Denver and the Rocky Mountains! As always, the nurses, while very caring and compoetent, were working in an environment where they were severely understaffed during my stay because of rampant flu among their ranks!

[DEE]

still having problems with blurry vision which is not helped by sinus been swollen to , spoke to wg consult said to put up preds again :( going to review all test and get back to me fri am
also managed to get appointment for eye examination fri pm DEEx

[Sangye]

Dee, what dose of pred are you on?

Have you had your vision checked by an opthalmologist lately? Blurry vision might be a side effect of the pred, but it could be other things. One thing an opthalmologist can rule out is increased pressure in the brain, which is often triggered by drops in pred. It's a dangerous condition.

[DEE]

hi Sangye i moved down from 22.5mg to 20mg preds seems when i try to go down less than 20mg thinhgs start to happen
spoke wg consult he waiting for blood cultures to get me off cxt
not had vision checked latelt but they are going to se me fri pm they did mention last time i had the start ot cataract in the eye im having problems with
also hubby and son keep going on about how close i sit to screen even with my glasses on :)
will tell you what happens after appointment plus wg consult ringing me back am fri after hes checked all results of x rays blood test before he goes on holiday for two weeks
he also asked permisssion to use my case for a conference hes lecturing at at the end of the month with the patholigist who found wg in biopsy said go for it the more people that know the better thats for caring hope u are doind better DEEx

[DEE]

ps everyone kept telling me i looked well at the bbq which makes me warey as it usually means something happening to me

Jack dont worry not going to let it get me down just a little step backwards i hope ! DEEx

[Sangye]

Dee, I'm glad you're getting your eyes checked this week. It may be something as simple as the cataract. (Though if I had one I'd be freaking out. I'm squeamish about eye stuff)

[DEE]

me too Sangye i hate anybody going near or putting things in my eyes DEEx :)

[Sangye]

When I was a kid my dad wore hard contact lenses. That was back in the 60's when contacts were new and very problematic. They were always popping out of his eyes. He got scratches and eye infections all the time. I have intense "eye sympathy" and when I see someone with watery eyes or redness mine start to tear up, too. So half my childhood memories are about searching for contact lenses in deep pile carpeting with tears streaming down my face. :D

[elephant]

I use to wear hard contacts back in the days but stopped and yes I was bending down often to find them and so was everyone else. "Everyone stop, don't move...I just lost my contact!"

[elephant]

Dee hope it is just something not so serious with your eyes. I am having cataract surgery in Sept and I am nervous, but I want to see!
Keep us posted!

[Jack]

When I had my cataract surgery I opted to have general anaesthetic because I was so nervous about having an operation on my eye. However, the nurse in charge shamed me into having local anaesthetic by pointing out all the old people around me who were going to have the operation this way and I'm glad that she did. :)

The operation was quick and painless with hardly any recovery time required. I could not see anything other than the bright lights and there were no nasty sounds or other sensations. The first op I had required an injection close to the eye, but a later one used only eye drops.

It is not something I would be concerned about should I have to go through it again.

[DEE]

in the first few days after dxt i had to see eye consult as my eye was nearly closed and head swolien and sinius full
so you can imagine how i felt the thought of anyone touching me freaked me out but the consult could not see this and went on to tell me off for not sitting still while he blow air into my eye and do the pressure test
i tried to explian how i felt and hubby thought i was going to get up and waik out which i nearly did
needlessly to say never saw him again but as you can imagine does not instill conferdence in going for eye test BUT i ll be brave and go :) DEE x

[pberggren1]

I am also a little scary of eye problems. But then again who isn't?

I saw an opthamologist back in 2004 I think and he said I had slight cataract in left eye. That freaked me out. I didn't notice a change in my vision. But in 2008 I noticed a change in my vision. I play a lot of pool, or at least I used to. And good crisp vision is essential to playing pool well. My vision became a little blurry when I would focus in the the balls that were farther away. The opthatmologist in town here said my eyes were good and that the pred was probably causing a slight imbalance. So one night at pool league I decided to be funny and try on everyones glasses and one pair made such a huge difference in my game that I said to the guy, "You are not getting them back." He said, "No problem, You can keep them. I have another pair." I said thanks. My vision has improved a bit since then and I no longer wear them while playing pool.

Thanks Jack for relating your experience with cataract surgery.

[Sangye]

Thanks for the heads up, Phil. If we ever meet in person I'll be sure to hide my glasses. :D

[elephant]

Thanks Jack, I feel better knowing that the cataract surgery will be fine.
Phil, by the time I meet you I will hopefully not be wearing glasses! :0

[drz]

My cataract were due to taking Pred and progressed much more quickly than the type associated with old age.

My cataracts seem to be progressing rather quickly now after taking PREGNANTZONE for past four months. My rheumatologist decided to try cut current dosage from 60 mg day to 50 mg. He has beeen working on trying to find a dosage of Cytoxan that i can handle without knocking WBC too low. This keeps getting complicated by recurrent bladder infections which require antibiotics. The infection drives my WBC but then the antibiotic knocks this down again. The urologist made some changes that might help solve this problem which made me hopeful.

He believes that finally after four months of treatment i am finally making some progress in getting some control over Wegener's disease.

I can't have any surgery till off the Cytoxan and suspect this will be many months away. How bad can vision get from cataracts and glaucoma from Prednisone (Pregnantzone)? Are there other drugs that prevent you from having any surgery besides Cytoxan?

I had ultra sound to check out damage to kidney and bladder and we asked if the ulrtasound could tell us if it was a boy or girl due to pregnant look from Pregantzone dosage for past few months.

[pberggren1]

Oh, elephant and Sangye, you guys crack me up.

[beeinformed]

Hi!

I also have cataracts (although no blurry vision) and I was wondering if anyone experienced a loss of vision when looking directly at the sun? I also had a severe acute inflammatory attack in my eyes where I lost about seventy to eighty percent of my tear glands within a period of twenty four hours as well as two episodes of anterior uveitis. I'm not sure if the above eye conditions have contributed to this loss of vision when looking directly at sunlight but my eye doctor seems to think that the cataracts might be a major contributing factor.

Unfortunately, my vision is totally blocked (cannot see at all) when looking at direct sunlight and when I wear sunglasses it helps but I still have a problem and would appreciate hearing from anyone who has experienced this problem as well. Thanks. :)

[Jack]

My eyesight became very sensitive to light levels when I had cataracts and if you look at web pages on the subject it seems to be very common. Not sure what the exact mechanism is, it is just the nature of the beast.

[elephant]

When I look at any light there is a "Halo" around them. I am on several immunosuppressants and still will be having cataract surgery. But I will be on antibiotic eye drops a week before the surgery.

[Sangye]

My cataracts seem to be progressing rather quickly now after taking PREGNANTZONE for past four months. My rheumatologist decided to try cut current dosage from 60 mg day to 50 mg. He has beeen working on trying to find a dosage of Cytoxan that i can handle without knocking WBC too low. This keeps getting complicated by recurrent bladder infections which require antibiotics. The infection drives my WBC but then the antibiotic knocks this down again. The urologist made some changes that might help solve this problem which made me hopeful.

He believes that finally after four months of treatment i am finally making some progress in getting some control over Wegener's disease.

I can't have any surgery till off the Cytoxan and suspect this will be many months away. How bad can vision get from cataracts and glaucoma from Prednisone (Pregnantzone)? Are there other drugs that prevent you from having any surgery besides Cytoxan?

I had ultra sound to check out damage to kidney and bladder and we asked if the ulrtasound could tell us if it was a boy or girl due to pregnant look from Pregantzone dosage for past few months.
LOL drz, I know the feeling. I swear there's gotta be a human growing in this abdomen. Of course at this point it'd be a 4 yr old.... :D

Do you drink cranberry juice for your UTI's? You have to get the real stuff-- no sugar, no other juice added. Pure smack-your-lips-and-gag-it-down cranberry juice.

Also, do they know for sure that it's bacterial infections? Sometimes a yeast infection in the bladder gives the same symptoms.

I'm sure you already know all this, just thought I'd ask in case!

[DEE]

trying to stay up beat Jack but fed up now
been for eye test today results are left cataract significaly worse and have now got one in right and a spot ! on left retina
wg consult rang an hour before to say he was leaving for his holidays and to behave and stay well.
been fri pm could not contact his colleague but have put in for telephone call off gp mon am
optican said he did not think they would not do anything till off chemo does not thing adding to prescription of glasses will help so needs someone to contact ths specialist
he said he cant say wether wg or drugs or just something that was going to happen
wanted to scream lost hearing in left ear last month have two great big bruises through bumping into things due to warfarin ! what next DEEx

[Jack]

Yes, I know what you mean, I'm finding it all a bit of a strain myself just at the moment. Try not to worry about everything all at once and just concentrate on the moment and immediate problems.

Sorry, can't remember, are you still on Cyclophosphamide? I think I had moved on from this by the time I got cataracts. Not sure why it would delay surgery, but I agree that glasses probably won't help.

I'm covered in bruises and often tear the skin on my hands if I catch them on something. Both the warfarin and the Pred are the culprits. I even get spontaneous bruising when I have not even knocked myself.

Sorry to hear life is a bit crap for you at the moment. Hope things pick up soon for all of us. :)

[pberggren1]

I was always sensitive to the sunlight but when Wegeners came around it was magnified to the power of 10.

[DEE]

hi Jack
yes life is defiantely crap for a few at the moment hope your not feeling so battered and bruised tonight
yes still on cxt from oct hoprfully changing when consult comes back off his hols and when blood cultures come back
it was ENT who said he would not do any surgery until off cxt and blood clots clear aint life grand !!!!!
Jack please take care of you hope you have a more restful night and a better day tomorrow :) DEEx

[Lightwarrior]

Jack please take care of you hope you have a more restful night and a better day tomorrow :) DEEx

Dee, both you and Jack take care and here's to a more restful night for both of you and a better day tomorrow.

[Sangye]

Dee, did you see an opthalmologist who knows Wegs? I'm concerned about the spot on your retina--that can be Wegs. This is not something that can wait.

I'm on warfarin but I actually don't bruise so easily except for bad blood draws. Are you two staying in the proper INR range? You might need to add a little vitamin C to your nutrients, as that can worsen fragile skin and bruising.

[drz]

Dee, did you see an opthalmologist who knows Wegs? I'm concerned about the spot on your retina--that can be Wegs. This is not something that can wait.

I'm on warfarin but I actually don't bruise so easily except for bad blood draws. Are you two staying in the proper INR range? You might need to add a little vitamin C to your nutrients, as that can worsen fragile skin and bruising.

I was told the Pregnantzone made my skin tender. When i got a pedicure the pedicurist told me she had to careful not to tear my skin on my toes as it was a soft as baby skin.

it is hard to keep track of all the side effects from these meds plus the WG disease.

[elephant]

Be careful Drz about pedicures, because our immune systems are low we can easily get fungi and bacteria infections. I do my own pedicures now.

[Sangye]

LOL-- The only ones getting pedicures in my house are my dogs. :D

Yes, the pred makes your skin very soft and also makes it hard to heal wounds. Be especially careful with injuries to the legs-- can take forever to heal.

[DEE]

[QUOTE=Sangye;21138]Dee, did you see an opthalmologist who knows Wegs? I'm concerned about the spot on your retina-
Im concerned too but wg consult just gone on his holidays yesterday so going to speak to gp on monday morning for advice what to do
INR test have been very up and down recently but got result within top end of range this week range 2.6 -3,0 which means they dont have to go mining to get blood out for two weeks :) DERx

[DEE]

oops things are bad when you cant even spell your own name !!!! DEE x see above

[pberggren1]

Don't worry DEE we won't penalize you for that!

[elephant]

Dee, I am blessed to have spell check, I have poor grammar....but no one here is going to judge us for that....love this forum.

[DEE]

letters for my name on left side of the keyboard which does not help when cant see clearly through left eye thats my excuse and im sticking too it DEEx

[elephant]

I'm right behind you Dee!

[DEE]

i walked into outdoor tap which has been there for years got a mega bruise on left thigh and hubby said hes been saying that if i put my nose much closer tothe screen id be in it :) DEEx

[elephant]

Geez Dee, a big OUCH! Sorry to hear that, you don't need anymore ...Boo, BOO's!

[DEE]

Geez Dee, a big OUCH! Sorry to hear that, you don't need anymore ...Boo, BOO's!

at least i know now im not completely dippy when i trip over puppy and i say i didnt see him poor Benji even stood on his tail a couple of times !!and that i not making it up when i lose hubby in the crowd at car boot sale on asunday :) we he says you must of seen me i was just over there !
guess sanity still intact thank goodness DEEx

[Natalie]

hI dEE hope your eye is easy fixed , sounds like your having a bad run at the moment running into things and all . nat

[DEE]

not all negative bumpt into a clothes sale while out today ! :) which of course i had to buy something or it would have been sa waste of time :) DEEx

[Psyborg]

Hey all, I'm getting some issues with my right eye. Feels like I have pressure behind it with a headache and I see a weird "blob" in my vision (for lack of a better term). The blob is kind of similar to that afterimage you get with a flash from a camera. The eye has become super light sensitive and and very blurry, which is overall ruining my distance vision. I thought it was my astigmatism acting up, but even with a new set of glasses I'm having more issues as the last two weeks have progressed. I made an appointment for an ophthalmologist tomorrow, but I was wondering if this sounds WG related or if it's maybe the pred messing with my site?

[misskay]

psyborg, I'va had something that sounds almost exactly like what you described for several years pre-diagnosis. Had everything checked, and was told it was referred to as an 'aural migraine'. It was sometimes (but not always followed by a full-blown migraine.) But better to have it checked by your docs to be sure.

[elephant]

Psyborg how long have you been on prednisone. That sounds little like cataracts, glad your checking this out.

[Sangye]

Psyborg, that can be a number of things. It sounds to me like either Wegs or a complication of it. Wegs can form granulomas behind the eyes. You can also get something called pseudotumor orbiculi, which is NOT a tumor--nothing to do with cancer. It usually occurs in one eye at a time. It's not uncommon with Wegs.

I have a related condition called pseudotumor cerebri, which is elevated intracranial pressure. The pressure causes the optic nerves to swell. This is very rare with Wegs-- my docs have only heard of a couple cases. It can happen to anyone, Wegs or not.

I'm glad you're seeing a doc tomorrow. Your symptoms would be considered urgent. As your doc will tell you tomorrow, any time you have distance vision loss, it's much more serious than close vision loss. You'll likely have to do a brain MRI asap. Meanwhile, if it worsens tonight--vision, headache worsens and/or you start vomiting--get to an ER immediately.

[Psyborg]

Psyborg how long have you been on prednisone. That sounds little like cataracts, glad your checking this out.

I've been on Prednisone for about 2 months now. I'll make sure I mention that at the doctor's office.


Psyborg, that can be a number of things. It sounds to me like either Wegs or a complication of it. Wegs can form granulomas behind the eyes. You can also get something called pseudotumor orbiculi, which is NOT a tumor--nothing to do with cancer. It usually occurs in one eye at a time. It's not uncommon with Wegs.

I have a related condition called pseudotumor cerebri, which is elevated intracranial pressure. The pressure causes the optic nerves to swell. This is very rare with Wegs-- my docs have only heard of a couple cases. It can happen to anyone, Wegs or not.

I'm glad you're seeing a doc tomorrow. Your symptoms would be considered urgent. As your doc will tell you tomorrow, any time you have distance vision loss, it's much more serious than close vision loss. You'll likely have to do a brain MRI asap. Meanwhile, if it worsens tonight--vision, headache worsens and/or you start vomiting--get to an ER immediately.

I will mention that to the ophthalmologist today. My concern is that most likely this doctor will have never seen a case of WG before, but I need at least some of my doctors to be near my home :). I will see how it goes...they are supposed to be very good eye doctors anyway.

[Col 23]

Hi Psyborg, totally agree with Sangye. I was so close to going blind before diagnoses, cant muck around with the eyes, if it is wegs related things can deteriorate pretty fast.
It is urgent. Hope all goes well at the docs.
cheers Col 23

[Psyborg]

Saw the doctor today and he said everything looks ok. He's going to keep following up with me. I'm suspecting what I'm feeling is sinus and not eye related perhaps.

[DEE]

good news about your eyes Psyborg DEEx

[elephant]

Are you still having blurry vision? Diminished vision? I am the queen of sinus crap and you cannot have blurry vision from sinus infection or inflammation. I had them both severe! Yes you can have severe eye pain from sinus infection/ inflammation.

[Sangye]

LOL--listen to the Queen, Psyborg. Elephant knows sinuses!

I'm also skeptical. I think you should contact your CC doc and tell her about it. A brain MRI including orbits seems in good order.

When are you supposed to see the eye doctor again?

[Psyborg]

They want me to follow up in 6 months unless I have any new issues. It's weird I can see/feel that something isn't right, but everything looks ok. They did say that the lasik surgery I had 6 or so years ago wasn't done as good as it should have been and that was why I didn't have as good vision in the eye is I might want. Dunno what to think of doctors these days :)

[Sangye]

No, that doesn't sound right to me. The symptoms you described sound like Wegs or one of the pseudotumor types. Can you see another opthalmologist before the weekend? With Wegs I've learned to trust my sense that something is off more than any doctor-- including the Wegs docs.

[elephant]

Ditto to what Sangye said Phyborg. Need to go to another on tomorrow and call your WG specialist in the am. Trust your gut!

[Natalie]

They want me to follow up in 6 months unless I have any new issues. It's weird I can see/feel that something isn't right, but everything looks ok. They did say that the lasik surgery I had 6 or so years ago wasn't done as good as it should have been and that was why I didn't have as good vision in the eye is I might want. Dunno what to think of doctors these days :) Hi Psyborg just reading threw some postes and came across this one .. your symptoms are exacally the same as mine were before I lost sight in one eye , Please go back and tell them that 6 months isnt good enough ! and that your sight is at risk and you would like more tests done . If I could do it all again I would of yelled at the lot of them till tell found the issue . witch was granulomas putting pressure on my optic nerve which in time killed it sending me blind . Many Opthomoligests looked at my orbit scans and could see nothing wrong . Only one picked it up !. 2 months after I had totally lost sight . . High dosed of intraveinous steriods they gave me Did make a difference to my vision when It was still in the blotchy stage but it was too late for that to reverse the damage already done .. . I hope I havent scared you but Now is the time to stand up and use your voice not later when the horse has bolted so to speak. hope its something less and good luck .. Nat

[Psyborg]

Thanks all. I'm going to keep following up.

I think I'm going to try to get my doctor to order a CT scan of my head. At this point I have vertigo issues and fainting on occasion and I honestly feel like I'm having trouble getting anyone to take that part seriously. They can see the results of the trachea scope, so they believe me there, but when they look at my sinuses they look clear. At this point I've had nothing but an X-Ray of my head.

I mean I have symptoms here:
Dizziness/Vertigo
Faintness
Weird pressure feeling around right eye
Blurry vision issue

I just hope the doctor will actually agree with the CT scan idea rather than blowing me off.

[Sangye]

Psyborg, depending on what they're looking for, an MRI might be the preferred test for symptoms like yours. But absolutely-- you have to get something done asap. When did the fainting begin? Does your CC doc know about these symptoms? If not, you need to call first thing tomorrow morning.

[Psyborg]

The biggest issue is that my blood pressure was very low when the original faintness began. They assumed that was why...but now my blood pressure if very normal, but I still get dizzy spells and am on the verge of fainting if I get up from a sitting position too quick.

I did mention these symptoms to the doctors while getting initially worked up, but that was (of course) a resident I dealt with for that part, and I'm never sure that the stuff has been communicated on correctly. I probably don't help because I seem to downplay my symptoms if I think they might think I'm whining about stuff (I know stupid).

[elephant]

Psyborg, Ive done the same think "downplay my symtoms." You need to get a CT scan of your orbitals ( eyes area) and fainting is not good. Need to call the doctor at CC early in the am. Do you have a fever? chest pain? back pain? Short of breath? nausea? Just checking on you.

[Psyborg]

Nothing but the shortness of breath caused by the TS. The rest, not really. Just the weird feeling in my head. I do think I had attributed a bit of that to fatigue as well....that probably didn't help either.

[elephant]

When my eyes were hurting Dr Langford ordered the CT scan of my orbitals. Rest well tonight Psyborg and let us know about tomorrow.

[Sangye]

Psyborg, feeling faint when standing up indicates that your adrenals are very stressed-- a given with pred. It can happen even without pred. The adrenals help control the blood pressure during positional changes. If they're healthy, then when you stand up your blood pressure should increase somewhat to get blood to the brain. If they're exhausted, the blood pressure will stay the same or even decrease. It takes about 10-30 seconds for the blood pressure to catch up and during that time you'd feel lightheaded, faint and often have a little difficulty hearing. A sensation like someone is pushing on your neck is normal, too.

However, the vision changes and other symptoms would indicate the need for a brain MRI. Wegs CNS involvement is rare, but it can happen.

[JanW]

Just a note about giving the information to a resident when at a clinic (which is common in all teaching hospitals, of course). In the panel that Dr. Langford was on (as well as a rheumy from UNC), she said that usually not only should the resident and attending be reviewing your information before the attending comes in to speak with you, but also, they should be doing it in front of you and you should never be afraid of correcting the resident right in front of their boss (apparently this fear is a common problem). They are human and make mistakes, and in fact the UNC doc wisecracked something like, "When you are a resident your whole life is about having people criticize your work at all times. So if you aren't sure if the resident has conveyed something -- ASK!

[Psyborg]

She did actually correct him on a few points during the report they did with me in the room. I don't remember if we hit ALL points or not though.

She did say she'd get me the CT Scan and was trying to set it up through my local doctors office so I didn't have to drive to Cleveland. If that doesn't work out then I'll just have my dad drive up with me.

[elephant]

Good Psyborg, glad to here that. How are feeling right now?

[Psyborg]

Honestly, not too bad. The eye is bugging me, and the issues with my head feeling groggy, but I'm certainly not down like I was in May and early June. I just don't know how much of that is the masking effect of the prednisone.

[elephant]

It is always to be safe than sorry and get thing checked out. Glad you are getting checked out though. We all respond differently with prednisone and so it is important to tell are docs if something is off. :)

[Psyborg]

Sorry I should have come back and posted something here yesterday. They did a CT scan and it didn't show anything. So now I'm wondering if it's just the different drugs combined with not enough sleep causing my weird vision/eye things. Starting to think I need to just back off a bit and stop over thinking everything. :)

[Lightwarrior]

Sorry I should have come back and posted something here yesterday. They did a CT scan and it didn't show anything. So now I'm wondering if it's just the different drugs combined with not enough sleep causing my weird vision/eye things. Starting to think I need to just back off a bit and stop over thinking everything. :)

My last CT of sinuses showed no eye involvment and the eye doc says that it is autoimmune dry eyes. It is very annoying to have blurry vision, and be unable to read words at times even with a magnifying glass. I don't think you are overthinking.

[Sangye]

Psyborg, if both your eyes had blurry vision I would say that is most likely the pred. It's famous for that. But the fact that you have the "blob" thing in one eye and the vision in that eye is strange is not consistent with a drug side effect. If it were me, I'd see another opthalmologist and I'd also ask my doc for a brain MRI. A CT will not show what a brain MRI will.

[MCC]

Hi Elephant, sorry to hear about your eyes. What did the doctor say?

[elephant]

I have cataracts in both eyes. Got worse with in 4 weeks. So I will have cataract surgery Sept 15! Wish me luck! Then three weeks after that the will do the right eye. I will be wearing goggles for six weeks. No sweat or water can get in my eyes....he doesn't want any infection brewing. So I will be taking eye drops too.

[DEE]

hi Elephant
i thought that it was in my head but said to hubby yesterday my cataracts getting worse , i have my nose to most things which made shopping interesting seeing rhmey consult tomorrow for full assessment tomorrow and then back to wg consult who does all my treatment on thurs pm hopefully with the news that i can come off cxt
you can be my guard when you get your eyes sorted!! as my doc says he is not sure when hey will be abke to do mine DEEx

[Greenkit]

Hi, I had the same problem made worse as i only see out of the one eye and the cataract decided to pick that one. I have wore glasses since the age of 3-4 and had high strength varifocals(8.75) after the op i no longer wear glasses only for reading/computer. So there has been a good thing to come out of having Weg's. The op was so easy and i could see straight away....it really was like a miracle.
I have just got rid of the latest outbreak of Weg's(9 months on steroids) but it has left me with a nose and chin full of spots that go then overnight they are back!!!!!!
Good luck for your op.

[elephant]

Dee, I am looking forward to having this surgery. My eyes are getting worse...I have to drive my kids to school. Thank goodness it is not far. So I need this surgery. I will let you all know in detail how it went.

[Psyborg]

I have to admit I'm kind of having trouble not giving up on this eye thing. I feel like something isn't right, but I'm up to three eye doctors, a CT scan, and a visit to the specialist and nobody sees anything wrong with it. I had lasik surgery a few years ago so needing glasses again was very depressing, even if really only for the one eye. But it's not just blurriness it also has everything a bit faded out/washed out color wise too. But man it's getting expensive to keep chasing something everyone is telling me is in my head.

[elephant]

Psyborg, I forgot but are you seeing an eye doctor that specializes in autoimmune disease's?

[Psyborg]

Can't really find any right around where i am. And they keep sending me places in Columbus rather than up at Cleveland Clinic.

[Sangye]

What kind of doctors were the eye doctors? All opthalmologists?

[Psyborg]

What kind of doctors were the eye doctors? All opthalmologists?

First was an optometrist, then two ophthalmologists.