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JennyT
05-07-2009, 06:42 AM
Hi
I am sure someone has experience this before wonder if you could tell me what's going on
It usually disappears after one or two hours and its mostly after I had my sleep
Had my bone marrow done today and have to wait two weeks for the results.

keep you posted.

Jenny T

jola57
05-09-2009, 12:42 PM
yup, that is one of our new normals when on pred, for me its all thru the day, just a little better or worse

Cindy M
05-12-2009, 09:27 AM
The blurry vision and teary eyes, is this caused by preds or weg's?

Sangye
05-12-2009, 11:36 AM
I don't remember teary eyes, but the blurred vision on pred was a huge problem for me.

Derek
05-12-2009, 07:01 PM
Hi Jenny
When I get tired I start to yawn a lot which brings on the tears and blured vision.
I am not on pred at the moment and have assumed that perhaps it is due to the Wegener's.
Hope your results are OK.

Derek

jola57
05-13-2009, 09:12 AM
I have both and it is the predinsone that tears up my eyes and makes them blurry

coffeelover
05-16-2009, 01:13 PM
Good question. I was just thinking today how good my vision is compared to lately. My blurry vision was not a problem until after I was on the pred.

Cindy M
05-21-2009, 04:59 PM
I went to see my Rhuematologist today. My blood work is looking better. My white blood cell count is still off but the rest is pretty normal. I am still struggling with my runny eyes and the mass behind the right eye and pain, sinus problems and pain. She thinks that maybe some of this could be from the preds. She has decreased my preds from 10 per day to 9, then 2 weeks later down to 8 and so on. I have also been on cyclophosphamide since Mar 27th at 125 mg per day. She is hoping that the dropping of the preds will decrease some of the puffiness which could be causing some of the stuffiness and swelling by my eyes and that the cyclo has had time to kick in and work. I am so praying that this works, really hate the preds.

coffeelover
05-22-2009, 06:19 AM
Cindy,

My eyes get puffy too on the pred. I found that getting somewhat active helps in the inflamation from the pred. Not always possible, but it does help when I can.

I agree....I hate the pred too.
Lisa coffeelover

Sangye
05-22-2009, 06:36 AM
Quick poll : Who hates the pred? (All hands shoot up...)

JennyT
05-22-2009, 11:40 AM
me too and the cyclo too

DEE
10-28-2010, 04:47 AM
ok guys finally went to eye hospital about cataracts !! three hour session
ending in im having first eye done 3RD DEC:thumbsup::thumbsup:
depending on healing second one about a month later :biggrin1:

Jack
10-28-2010, 05:33 AM
It's an easy operation DEE. Hope you enjoy your new eyes. :biggrin1:

DEE
10-28-2010, 05:48 AM
thanks Jack maybe i be able to see the drugs i take or maybe i will be able to see my hubby:flapper:

Doug
10-28-2010, 05:49 AM
thanks Jack maybe i be able to see the drugs i take or maybe i will be able to see my hubby:flapper:

I hope he still looks as good to you as he did when you first married him, Dee!

DEE
10-28-2010, 06:04 AM
hope so been married for thirty five years on 6th Dec and together for 37 years dont suppose i casn change him now :biggrin1:

marta
10-28-2010, 10:43 AM
Cool Dee, You'll just have your new eye for three days on your anniversarry. I'm sure he'll look as good as ever all things considered... 35th is coral or jade for a gift.... get him to take you on an island vacation and then he'll look super great :w00t:

DEE
10-28-2010, 03:57 PM
I have two hospital appointment on our anniversary :rolleyes1:

jola57
10-28-2010, 05:14 PM
Then have a wonderful dinner for two after. :love:

DEE
11-30-2010, 11:02 PM
Just started anti b eye drops ready for cataract op friday pm
can wait just hope we dont get snowed in :rolleyes1:
atleast i will be able hopefully to se better with one eye for christmas , hopeing the second on wont be to long after

Sangye
12-01-2010, 12:56 AM
I'll be thinking of you, Dee. I'm sure it'll go well.

Did your doc give you instructions about the coumadin? A relative took daily aspirin and it slipped by his doctor. It caused his eye to bleed inside (not sure how or what) and was a problem for a few days. It's easy for docs to miss simple things like that.

Hammy8241
12-01-2010, 01:07 AM
Just started anti b eye drops ready for cataract op friday pm
can wait just hope we dont get snowed in :rolleyes1:
atleast i will be able hopefully to se better with one eye for christmas , hopeing the second on wont be to long after

Fingers crossed for you Dee. It's just a shame that the Xmas TV schedule is not worth watching. lol

DEE
12-01-2010, 01:58 AM
Did your doc give you instructions about the coumadin?

thanks for asking Sangye , the aneathatis (sp) rang me about my medication, said to carry on taking warfarin and he would be able to add to local ansethetic (sp) to make sure im safe
but will check when i have admission talkng with him
thanks agsin DEEx
ps INR been done yesterday so i get up todate results and they want them to write down any extra drugs they give other than my regular ones

DEE
12-01-2010, 02:01 AM
thanks Hammy .
hubby has got the jelly babies at the ready :tongue1: that will have to do for now :thumbsup:

Sangye
12-01-2010, 02:04 AM
Good to know, Dee. I'm glad you're getting proper care.

elephant
12-01-2010, 02:25 AM
Your on your way to one good eye Dee!

julia
12-01-2010, 06:51 AM
When I was on coudadin and had a procedure (bone marrow biopsy). they had me stop the coumadin for a few days. I thought it was because of the chance of bleeding.

hope all goes well.

Sangye
12-01-2010, 09:03 AM
Yes, it is because of that, Julia. They have to stop coumadin for any surgery. It's risky, because you need the coumadin for a reason, and also you can't just stop and start it without the INR going out of range. So there are several days without being anti-coagulated.

janNaz
12-01-2010, 10:35 AM
ok guys finally went to eye hospital about cataracts !! three hour session
ending in im having first eye done 3RD DEC:thumbsup::thumbsup:
depending on healing second one about a month later :biggrin1:

Wishing you well, Dee!

marta
12-01-2010, 11:38 AM
All the best DEE. Here's to 20/20 in no time.

DEE
12-01-2010, 05:05 PM
the coagulation rang today about warfarin so i checked about still taking it , they said that a cataract op is classed as a bloodless op therefore they will treat as such !!

pberggren1
12-01-2010, 05:12 PM
the coagulation rang today about warfarin so i checked about still taking it , they said that a cataract op is classed as a bloodless op therefore they will treat as such !!

I have never had part of my blood call me before.:wink1::laugh:

DEE
12-01-2010, 05:18 PM
Phil they call me because i have my INR done at my gp s and i send my record book with it
they send it back by post but if i need to change the dose the same day as test results they ring
which is good thing as you get a chance to ask questions about the result if needed
i hope that makes sense

Sangye
12-02-2010, 12:42 AM
the coagulation rang today about warfarin so i checked about still taking it , they said that a cataract op is classed as a bloodless op therefore they will treat as such !!
Maybe they're doing it differently than with the relative who had bleeding just from being on aspirin therapy. That surgery was at least 10 years ago-- maybe it's a whole different thing now.

DEE
12-02-2010, 12:46 AM
will give you full update when ive had in done , keep expecting the phone to go and say its cancelled as main route to hospital has been blocked the last two mornings :ohmy:

Sangye
12-02-2010, 12:51 AM
For those who like to see research, this is a good study by JHU about warfarin and cataract surgery. It concludes what you've been told, Dee-- no problem with staying on warfarin for the surgery. It also makes a point of saying how extremely safe cataract surgery is, which I thought might be comforting for you to hear!

http://www.hopkinsmedicine.org/bin/a/r/risks_benefits_anticoagulant_antiplatelet_cataract .pdf

Sangye
12-02-2010, 01:06 AM
Something funny for you, Dee. Big enough to see it, too. :laugh::thumbsup:

http://icanhascheezburger.files.wordpress.com/2010/11/d1ea8bb9-a6aa-47cb-80b6-1a24c17902f6.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

DEE
12-02-2010, 03:58 AM
Thanks Sangye just finished reading report.
The rabbit is ace:biggrin1::thumbsup:

Jack
12-02-2010, 04:01 AM
The cataract surgeries that I have had have not involved any bleeding so I can't see this being a problem.

DEE
12-02-2010, 04:12 AM
not bothered about surgery just about been able to get there because of snow
as would be so dissappointed if i cant

DEE
12-03-2010, 02:35 AM
the phone rang early today thought it was the hospital ringing to cancel :w00t: its ok dentist csancelling hubby appointment today:biggrin1:
its stopped snowing so fingers crossed roll on 8am tomorrow :thumbsup:

elephant
12-03-2010, 01:24 PM
Yahoo Dee, you will be able to see immediatly!

DEE
12-04-2010, 03:18 AM
one eye done :thumbsup::thumbsup: very tired will catch up l\ater

Sangye
12-04-2010, 03:33 AM
Yay Dee!! So glad you're halfway there! :w00t:

Hammy8241
12-04-2010, 03:37 AM
one eye done :thumbsup::thumbsup: very tired will catch up l\ater

I see...... hope you can too. :thumbup:

Sangye
12-04-2010, 03:39 AM
How are you doing, Hammy?

Hammy8241
12-04-2010, 04:05 AM
How are you doing, Hammy?

Not too bad thanks Sangye. Was feeling great a few weeks ago and thought I'd turned a corner but then got a cold which put me back. On the 3rd day of a pred reduction and the withdrawal effects are just kicking in!!!

Generally can't complain though as work and life generally OK.

As I'm sure you will have noticed I keep lurking but not posting much.... not a lot to say...... however....

I've got a silhouette of a man and am marking off each injury Jack has to see when he has damaged every limb/body part.:crying:

I'm thinking of writing to Dee to tell her i don't want her babies any more as I have found another.... (Mince pies!). Hope Dee will let me off til the new year.:crying:

Keep looking for streaker reports in the newspapers, to see if Geoff is still up to his old tricks:rolleyes1:

trying to keep up with Martas energy and scribing something for her book

I have to google all the conditions/meds that Phil is on which is so overwhelming. He's a fighter.
and i read with interest and concern all the problems that continually hit you.... do you ever get a rest?

and reading the wonderful stories of human achievement over WG despite what can seem to be , overwhelming odds.

I have got away lightly so far.

Anyway.. you asked!! thank you.

Sangye
12-04-2010, 04:15 AM
LOL That was a great update!

What pred dose are you on, and what side effects are hitting?

pberggren1
12-04-2010, 04:57 AM
Thanks Hammy. That was a great post. I am for sure having a very difficult time dealing with all of this. I am greatly fatigued most of the time and have trouble breathing because of the mucus blocking the airway and have wierd headaches most of the time again as well. I try to fight on but it is getting me down. I find myself getting quite depressed lately.

Hammy8241
12-04-2010, 05:11 AM
LOL That was a great update!

What pred dose are you on, and what side effects are hitting?

I try:flapper:

Just dropped from 15 to 12.5. SE: headaches, pressure in the eyes, general weariness and just a tad 'snappy'. Want to make something of it!!:predrage:

Usually go away in a day or two. If they continue past a week then I go back up again, wait a while and try again.

DEE
12-04-2010, 06:08 AM
thanks guys its like someone has switched the light on :thumbup:
hammy will:flapper: let you off until 1st jan 2011

Sangye
12-04-2010, 07:09 AM
Thanks Hammy. That was a great post. I am for sure having a very difficult time dealing with all of this. I am greatly fatigued most of the time and have trouble breathing because of the mucus blocking the airway and have wierd headaches most of the time again as well. I try to fight on but it is getting me down. I find myself getting quite depressed lately.
Aww Phil, hang in there. The drugs you're on are so powerful, it's amazing that you're coping as well as you are. You hear people talk about how lousy a regular antibiotic makes them feel (which is true) and then I think of you on multiple powerful antibiotics at once-- I don't know how you're managing.

Don't let it get you down for too long, okay? Find something funny to read or watch on tv, or do something that distracts you. Maybe see if you can help other people or animals online in some way that isn't too tiring. That always makes me feel better. The group Amnesty International is having a letter-writing campaign now to write letters of support to prisoners around the world. Maybe you could do a few? (I honestly don't know if AI would be considered a political group, so I hope my suggestion doesn't offend anyone if it is.)

Hugs to you :hug2:

Sangye
12-04-2010, 07:15 AM
I try:flapper:

Just dropped from 15 to 12.5. SE: headaches, pressure in the eyes, general weariness and just a tad 'snappy'. Want to make something of it!!:predrage:

Usually go away in a day or two. If they continue past a week then I go back up again, wait a while and try again.
Oh man, I hate those symptoms. I get similar ones when increasing pred! Sounds like you're doing a good job of evaluating whether you need to increase or keep tapering. Hoping that some of your tapers will be symptom-free. That's been true for me.

Psyborg
12-04-2010, 07:17 AM
I seem to have some issues for the first 3-5 days after a taper (was way worse when I was on CTX), but things then seem to resolve. Down to 15 mg now and crossing my fingers when they don't hurt :)

Geoff
12-04-2010, 08:26 AM
Keep looking for streaker reports in the newspapers, to see if Geoff is still up to his old tricks:rolleyes1:

In this weather!!!!!! (well not in any weather come to think of it)
Hope this snow and ice is not affecting you too much Hammy work wise, it took me 5 hours instead of 1 to get to work this week, Yuck!!

DEE: Glad you managed to battle thru the drifts etc to get your operation done, you've copped it bad of late with the snow, when do you go for your next op?

pberggren1
12-04-2010, 08:30 AM
Thanks Sangye for your support and suggestions.

Hammy: I am having those same symptoms now most of the time.

DEE I am happy to hear that the operation was a success and hope you can get the other eye done soon.

DEE
12-04-2010, 07:03 PM
thanks Phil please take care of you x :hug1:

DEE
12-05-2010, 12:56 AM
hi guys
hubby says he s taking me back to hospiyal !! now i can see things more clearly i keep telling him about things that needs doing around the house :flapper:
keep telling him having second one done soon :thumbup:

Sangye
12-05-2010, 09:50 AM
LOL Tell him "I'm keeping an eye on you!" Now he knows you mean it!

elephant
12-05-2010, 09:52 AM
Dee I was so happy to have the one eye done. But you will do a happy dance once the other eye is done.

DEE
12-05-2010, 07:19 PM
irs like been a kid in a sweet shop :rolleyes1:

DEE
12-06-2010, 03:02 AM
Elephant did you dave sedation when you had your eyes done, they did not offer me any oniy the `older ladies :unsure:

Jack
12-06-2010, 03:25 AM
No sedation here, just a talking to by the nurse telling me to get a grip and not go for the general anaesthetic option.

Sangye
12-06-2010, 04:12 AM
LOL "Get a grip." I'd be the same way, though. I think everyone freaks out at the thought of being awake for eye surgery.

DEE
12-06-2010, 05:08 AM
my consult kept saying relax :w00t: i freak out a normal eye test usually kept thinking of things i needed to do when i got home
get a grip i sure did grabbed onto my blanket as though mt life depended on it
the nurse kept telling me i was doing well :ohmy: dont know if i said sge was a friend of my daughter when they were younger
it was good to hear a voice say how are you doing DEE as i was wheeled into the thearter (sp)
but im going to be big and braxe bring on the next one

Jack
12-06-2010, 05:19 AM
So would you agree that the op is not too bad as these things go? No pain or anything.

DEE
12-06-2010, 06:23 AM
would have my other eye done tomorrow if i could no pain just slight brusing ,
even managing eye deops myself :thumbsup:

elephant
12-06-2010, 06:41 AM
Dee, they gave me light sedation and that was nice. I didn't feel a thing when I had the first eye done, the second eye I felt a little pressure.

DEE
12-06-2010, 07:15 AM
its ok i got new super wellies for been brave :thumbsup: 35th anniversary tommorrow !!!
not exchanging him now i can see him :ohmy:
but have realised how much our other halves have to put up with on our journney of wg
for that i thank him for helping along the bumpy road for making me stronger making me kaugh when i want to cry

DEE
12-06-2010, 07:19 AM
THANKS GUYS FOR YOUR SUPPORT TOO :thumbsup::hug1::hug1:

Sangye
12-19-2010, 02:55 AM
How are you doing, Dee? We haven't heard from you in a few days. Just checking on you! :smile1:

DEE
12-19-2010, 03:26 AM
Im doing ok just needed some time out , to much going on at the moment still messing with warfarin
two hospital appoint this week and one WED THURS FRI the following week plus bloods :w00t:
dont feel much fiuther forward than last year !
so when i feel like this its best i keep myself to myself
going to pantomine tonight things wikk be better then
have been reading posts thinking of you all DEE x

Hammy8241
12-19-2010, 03:49 AM
[QUOTE=DEE;31495so when i feel like this its best i keep myself to myself

going to pantomine tonight [/QUOTE]


Ohhhhhhhh nooooooo it not:biggrin1:!!

(one for the brits:rolleyes1:)

Enjoy Dee. I love them.

Sangye
12-19-2010, 03:54 AM
What is that?

Hammy8241
12-19-2010, 04:15 AM
What is that?

A pantomine?
Tradtitional christmas british play/farce where men play female parts and visa versa. Sounda a little weird but great fun and a chance for grown men and women to join in childish fun. To be recommended to all.
Pantomime - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Pantomime)

"He's behind you"
"Ohhhhh no it not"
"Ohhhh yes it is"
"Look out"

are some of the audience interactions.

DEE
12-19-2010, 04:28 AM
after working in school for eighteen years this is the first christmas tve missed the plays and parties with the children and staff:mellow:
SO OH YES I WILL !!!! enjoy PETER PAN s Christmas this year popcorn and crisps at the ready :thumbsup:
ps saving the jslly babies for christmas

DEE
12-19-2010, 09:18 AM
oh yes im back !!!!!!!!!!!! ribs hurting laughed so much it was brilliant :biggrin1:

elephant
12-19-2010, 10:26 AM
Dee, glad you had fun. I am thinking about you too !

Jack
12-19-2010, 11:44 PM
it was brilliant :biggrin1:
Oh no it .............!
800

DEE
12-19-2010, 11:55 PM
oh yes it was ,,,,,,,,,,, a great stress buster slept from 11pm till 11am never been know for months :tongue1:

DEE
12-22-2010, 04:34 PM
hi guys just to say my eye continues to improve and the other good news
went to see ENT and he is really pleased with everything and given me an six month appointment unless i need him before
AND i get to stop taking warfarin !!!!!!!!
maybe things are starting to look upwards for a change:thumbup:

jola57
12-22-2010, 05:10 PM
yeay dee, that is super news

Minneapolismark
12-22-2010, 05:24 PM
I developed teary and blurry eyes from the wegs. Tear ducts are supposed to be one-way valves, so to speak. Somehow the wegs has rendered them bi-directional, so if I put on glasses and blow my nose my eyes will spatter my glasses with tear-spray. It also means that my eyes sometimes have a great deal of fluid in them. Kind of a hassle.

jola57
12-22-2010, 05:33 PM
Yeah, for the first couple of years I couldn't get used to it and now I just use glassess when needed,

elephant
12-23-2010, 12:25 AM
The WG attacked my eyes and caused dry eye syndrome, pain and my tear ducts were inflammed. I was put on restasis ( cyclosporine an immunosuppresant) eye drops and that seemed to help the eye, but it came back once I stoped. But now that I am in remission my eyes aren't dry , just little pain because of my sinuses.

Sangye
12-23-2010, 01:21 AM
That's great news, Dee. I'm so glad you're off warfarin.

Brooke
12-23-2010, 01:26 AM
I didn't read through all of the posts on here but I was having a little bit of blurry vision off and on for the past couple of months. I told the doc at Mayo that and she thinks it was due to my sinus infection. I agree because now that I am on an antibiotic it has improved.

Minneapolismark
12-23-2010, 01:59 AM
Ya know, a lot about wegs is kinda gross.

Minneapolismark
12-23-2010, 02:19 AM
By the way... this is approximately what my blurry vision looks like...

OOOOPSSSSSSS I didn't realize that the photo had the "f' word!!!! My apologies. I feel just awful about it.:crying:

DEE
01-01-2011, 03:08 AM
JUST GOT BACK FROM HAVING FIRST EYE CHECKED ALL OK:thumbsup:
AND HAVE A DATE FOR RIGHT EYE OP 4TH FEBUARAY BEST NEWS EVER
CANT WAIT TO GET IT DONE WAS EXPECTING IT TO BE MUCH LATER ALTHOUGH THEY DID LOOKED SURPRISED WHEN I TOLD THEM I CAN SEE THE FIRST LETTER ON THE EYE CHART:w00t:
GOING TO CET READY FOR NEW YEAR DRINKS WITH FRIENDS
TO MY SPECIAL FRIENDS
THANKS FOR ALL YOUR SUPPORT THROUGH THE LAST YEAR ESPECIALLY THE EYE PROBLEM IVE HAD DEE X

Sangye
01-01-2011, 03:18 AM
What wonderful news! Feb 4 will be here sooner than you know. Have a great celebration tonight. :hug3: :w00t:

Jack
01-01-2011, 03:50 AM
Good news DEE! That will be another step towards normality.

elephant
01-01-2011, 05:18 PM
Congrats Dee, can't wait!

Sangye
01-02-2011, 03:02 AM
Dee is gonna See! :w00t:

Lightwarrior
01-05-2011, 08:04 AM
JUST GOT BACK FROM HAVING FIRST EYE CHECKED ALL OK:thumbsup:
AND HAVE A DATE FOR RIGHT EYE OP 4TH FEBUARAY BEST NEWS EVER
CANT WAIT TO GET IT DONE WAS EXPECTING IT TO BE MUCH LATER ALTHOUGH THEY DID LOOKED SURPRISED WHEN I TOLD THEM I CAN SEE THE FIRST LETTER ON THE EYE CHART:w00t:
GOING TO CET READY FOR NEW YEAR DRINKS WITH FRIENDS
TO MY SPECIAL FRIENDS
THANKS FOR ALL YOUR SUPPORT THROUGH THE LAST YEAR ESPECIALLY THE EYE PROBLEM IVE HAD DEE X

Dee, What great news, I am so happy for you. Hope you had a great new years drink with your friends.

DEE
01-05-2011, 04:23 PM
thanks Lightwarrior how are you doing now ?

Lightwarrior
01-06-2011, 04:39 AM
thanks Lightwarrior how are you doing now ?

Overall pretty good. Blurry vision, had a scare last week, achey, coughing turned out to be a virus. Any change in my energy level and I panic that I'm having a Weg flare. I'm trying hard to keep that dog asleep, at least long enough to build back up time off. (no actually keep it asleep long term). Had to cut my Methotrexate again from 25 mg to 15 and now to 10mg a week. I will be through teaching by end of this month and will have more time to keep up with all of you. I miss the interactions.

Sangye
01-06-2011, 06:00 AM
We need a lullaby for the Wegs dog.

BrianR
01-06-2011, 06:04 AM
We need a lullaby for the Wegs dog.

If an effective lullaby is found, I'll volunteer to sing it to all of you day and night long.

elephant
01-06-2011, 10:23 AM
Sing it BrianR!

dunkie2202
01-10-2011, 07:27 AM
I don't have a lullaby but I came up with a prayer... ( SORT OF )

NOW I LAY WEGS DOWN TO SLEEP
A DISEASE THAT NONE OF US WANT TO KEEP
PLEASE KEEP THE SICKNESS AWAY FROM US
SEND IT SOMEWHERE ON A BIG RED BUS
AMEN

elephant
01-10-2011, 08:31 AM
I love it this lullaby! LOL!

DEE
01-21-2011, 05:00 AM
Its nearly time , eye hospital rang to confirm op on 4th Feb cant wait
Just have to have full bloods on Monday. feeling better today so hoping to stay that way !!

Hammy8241
01-21-2011, 05:33 AM
Coming up fast Dee - don't blink or you'll miss it!
or
I see - so will you soon

fingers... no, eyes crossed for you

Being a woman, i presume the ones in the back of your head are fine?:rolleyes1:

Sangye
01-21-2011, 06:58 AM
LOL Hammy you always know just what to say...

Dee, I'm so happy for you. That's gonna be a big week for both of us. I sing the Wegs dog back to sleep on Feb 2 (via rtx) and you get your other eye back on the 4th! :thumbsup:

DEE
01-21-2011, 07:11 AM
Hammy eyes in the back of my head working fine :flapper:
Sangye Im happy for you too, maybe this is our year to get sorted along with a few others :thumbsup:

DEE
02-01-2011, 02:28 AM
OK GUYS NEARLY THERE 4th of feb eye op :thumbsup:
thinking of you to Sangye hope everything goes well on the 2nd :thumbsup: DEEx

Sangye
02-01-2011, 03:05 AM
Thanks! I'm looking forward to feeling better but I'm really dreading how much worse rtx makes me feel before that happens.

drz
02-01-2011, 11:13 AM
Thanks! I'm looking forward to feeling better but I'm really dreading how much worse rtx makes me feel before that happens.

It probably won't happen this time. You have already been there and done that and don't need to do it again so it should go fine this time.:hug1:

elephant
02-01-2011, 01:26 PM
Sangye, I am looking forward to this!

Sangye
02-01-2011, 02:12 PM
It probably won't happen this time. You have already been there and done that and don't need to do it again so it should go fine this time.:hug1:
The second round was much worse than the first. I hope that trend doesn't continue. I had a panic attack the other night thinking about it. Unless you've gone through something like that it's hard to explain. My level of function is so low, and it's hard to walk in the room knowing that I won't even be able to walk out, and it'll be awful for weeks. Even though that's true, I'm trying to leave some space in my mind to just "delete" the past and go in without hopes or fears.

Fran
02-04-2011, 02:47 AM
Hi Dee - Don't come on very often but wanted to wish you ALL THE BEST for tomorrow http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)


Fran

Sangye
02-04-2011, 02:52 AM
Me, too! Got you on my mind, Dee. :smile1:

DEE
02-04-2011, 03:44 AM
Thanks Fran and Sangye alittle scared but i know it will ok. Sangye take care off you ,will post when its done .
Fran good to hear from you hope things are ok with you at the moment DEE x :hug1:

ScreaminMeanie
02-04-2011, 04:47 AM
Thinking about you, Dee, and sending you good surgery vibes!

DEE
02-04-2011, 05:04 AM
Thinking about you, Dee, and sending you good surgery vibes! Thanks DEEx

Widthofacircle
02-04-2011, 10:18 AM
The luck of the Irish with you Dee

Carol
02-04-2011, 02:16 PM
Sometimes you just have to think of pred as your friend. I knew that at some stage I would be off it( and I am) I allways blessed my medication, feeling grateful that it was available to me and the good it was doing. Regards Carol

DEE
02-05-2011, 03:49 AM
ALL DONE MUCH BETTER THIS TIME !!!! TAKING PATCH OFF IN A FEW MINS .THEN I CAN WATCH ENGLAND PLAY RUGBY :thumbsup::biggrin1::thumbsup::biggrin1:

Sangye
02-05-2011, 03:51 AM
WHOOYAAAA!! Oh Dee, I am SO happy for you! Enjoy looking at everything-- you sure deserve it. :hug3::thumbsup::w00t:

DEE
02-05-2011, 04:03 AM
will do .might start spelling things right consult said he has put in lifetime long distance lens in both eyes so will only nrrd glasses for reading :w00t::ohmy::thumbsup:

Jack
02-05-2011, 04:11 AM
Great news DEE. Just need to get the glasses sorted now and you can put this one behind you.

It took me a while to get the right combination of glasses to suit me, but now have bifocal long distance / reading glasses with only a very small area for reading. Then I also have my "office" glasses which are varifocal with reading distance at the bottom and computer screen distance at the top. Most people seem to manage with just reading glasses, but it is worth having a good think about it before you decide. The opticians also seem to be quite willing to make changes if you don't get what you want first time.

ScreaminMeanie
02-05-2011, 04:26 AM
Wonderful news, Dee!!!!

DEE
02-05-2011, 04:35 AM
Great news DEE. Just need to get the glasses sorted now and you can put this one behind you.

It took me a while to get the right combination of glasses to suit me, but now have bifocal long distance / reading glasses with only a very small area for reading. Then I also have my "office" glasses which are varifocal with reading distance at the bottom and computer screen distance at the top. Most people seem to manage with just reading glasses, but it is worth having a good think about it before you decide. The opticians also seem to be quite willing to make changes if you don't get what you want first time.

Thanks Jack im going back to see consult on 25th feb then i8 can be tested for glasses :thumbup: then will focus on getting teeth sorted :rolleyes1:

DEE
02-05-2011, 04:36 AM
Great news DEE. Just need to get the glasses sorted now and you can put this one behind you.

It took me a while to get the right combination of glasses to suit me, but now have bifocal long distance / reading glasses with only a very small area for reading. Then I also have my "office" glasses which are varifocal with reading distance at the bottom and computer screen distance at the top. Most people seem to manage with just reading glasses, but it is worth having a good think about it before you decide. The opticians also seem to be quite willing to make changes if you don't get what you want first time.

Thanks Jack im going back to see consult on 25th feb then i8 can be tested for glasses :thumbup: then will focus on getting teeth sorted :rolleyes1:

elephant
02-05-2011, 05:57 AM
Dee so happy your eyes are done! Hope you enjoy the rugby game. I use reading glasses, no big deal.

DEE
02-05-2011, 06:20 AM
Thanks Elephant looking forward to getting glasses sorted this time before op my glasses use to cost £350 :w00t: hopimg reading glasses going to be cheaper:thumbup:
Hope you are doing ok DEE x

Hammy8241
02-05-2011, 07:33 AM
Great news Dee.

DEE
02-05-2011, 08:50 AM
Hammy attachment made me laugh when they assessed me this morning i could not see the A at the top and it was infront of me :flapper:
proves eyes work watched England win the rugby tonight :biggrin1:

marta
02-06-2011, 07:19 AM
Yeah Dee!!! I'm so happy that another hurdle has been jumped. It feels like a communal success when I read these posts. I'm so stoked for you!

Geoff
02-07-2011, 07:27 PM
Great uplifting news DEE and just in time to witness an exciting game...'Swing Low Sweet Chariot'..... Bring on the World Cup!!

DEE
02-08-2011, 12:19 AM
Thanks Marta and Geff another step forward :cool1:

DEE
02-09-2011, 03:41 AM
Would you believe it just been to opticians with hubby has just been told he has cataract in one eye and mascular degentive diesase in the other :w00t: cost of the day 316 pounds :ohmy: and they say dont get stressed it makes wg worse !!!!!
my eyes doing fine :rolleyes1:

elephant
02-09-2011, 04:26 AM
Oh no, so sorry to hear that. He needs to see a really good eye dr! Glad your eyes are fine!

DEE
03-06-2011, 02:06 AM
GOOD NEWS FOR A CHANGE !!!! :thumbsup:Just got back from the opticians after having second op test ,he said consult had done a brill job he kept re checking as there was such a great difference one eye had gone from a reading of 18 to 2,5 and the other 16 to 1.75
the lady who helpt me sort my READING GLASSES ONLY Have worn glasses all the time since been six years old said in all the time she has work in her job she has never seen such a great improvemnt
I told her people with WG always like to be different:flapper: so one more week and we should be all systems go
thanks for all your support during this journey no more eye drops ,check up every six months:biggrin1::biggrin1:

Sangye
03-06-2011, 02:23 AM
Wow, that's terrific! :hug3:

elephant
03-06-2011, 03:42 PM
That is wonderful Dee, I know how important it is too see!

DEE
03-06-2011, 10:36 PM
Thanks Sangye and Elephant now just to sort out the dentist and preds reduction , spoke to gp he wants me to stay on 12mg until i see wg consult on 24 th march !

Sangye
03-07-2011, 01:35 AM
Dee, I wonder if your dental problems are irritating your immune system so much that it's keeping the Wegs awake. I hope that when you get them resolved your Wegs dog will decide it's safe to go to sleep.

DEE
03-07-2011, 02:42 AM
Im beginning to think on the same lines Sangye , my own dentist does not want to any of the work because of meds etc and reffered me to a special unit
I rang them last monday they said they would sort something told them was worrid about the infection side -no reply so will ring again on monday and also have a word with gp and wg consult when i see them next

Psyborg
03-08-2011, 12:55 AM
Dee, I wonder if your dental problems are irritating your immune system so much that it's keeping the Wegs awake. I hope that when you get them resolved your Wegs dog will decide it's safe to go to sleep.

You know...interesting that you say this. I never considered the correlation, but as soon as I got my two root canals I've felt significantly better since. I honestly hadn't linked the two in my head until I read your post.

Sangye
03-08-2011, 02:32 AM
Holistic docs believe that unresolved tooth infections can cause or exacerbate autoimmune diseases. Anything that grinds at the immune system can eventually cause it to dysregulate.

Palmyra
03-08-2011, 09:12 AM
Holistic docs believe that unresolved tooth infections can cause or exacerbate autoimmune diseases. Anything that grinds at the immune system can eventually cause it to dysregulate.

I will second that. In addition, include gum disease, which is a larger bacterial infection, that is usually asymptomatic.

drz
03-08-2011, 09:27 AM
You know...interesting that you say this. I never considered the correlation, but as soon as I got my two root canals I've felt significantly better since. I honestly hadn't linked the two in my head until I read your post.

Did your inflammation markers go down too?

Psyborg
03-09-2011, 04:57 AM
My inflammation markers have been completely controlled by my Prednisone. Went from a (almost literally) capped ESR and CRP to normal almost immediately with Pred. SO hard to say.

My dentist said my gums and teeth are looking great last time i was in. Had pain in the tooth that was the recipient of the root canal, but it turns out it was because there was so much filling that I was causing pain in the natural part of the tooth while biting down on things.

DEE
03-09-2011, 06:02 AM
Ok eventually got through to dentist that i have been referred too after been on the urgent list for weeks
I explianed what we have been talking about regards infection coming from damaged teeth and was told i was on the specialist list and she went of to talk to him
Came back and said end of MARCH possible April !! :w00t:
Ok told her that it was not good enough and could i speak to him after a moment she said the 23th March be ok :thumbup:
That will do me, hubby home then so he can go with and im seeing wg consult the next day so if things dont work out i will get him on the case

Sangye
03-09-2011, 09:36 AM
That's great, Dee. I'm relieved that you pushed for a faster appointment because we know how things can change with Wegs. Not to be pessimistic, but with Wegs you have to make hay while the sun shines. Even if the Wegs dog doesn't cause problems, a cold or something unrelated can easily prevent you from getting care.

DEE
03-09-2011, 03:54 PM
Thanks Sangye i know what you mean had a wipeout day yesterday dont know why but better today

DEE
03-13-2011, 12:00 AM
All systems go ,just picked up my new reading glasses :thumbsup: bought on the buy one get one free scheme
There is life after cataracts :smile1: now only have to wear glasses for reading after wearing glasses all the time for FIFTY YEARS :biggrin1: DEEx

Hammy8241
03-13-2011, 12:05 AM
All systems go ,just picked up my new reading glasses :thumbsup: bought on the buy one get one free scheme
There is life after cataracts :smile1: now only have to wear glasses for reading after wearing glasses all the time for FIFTY YEARS :biggrin1: DEEx

I thought you said you were only 21?

Be watching out for spelling mistakes now - end of a chapter Dee.:thumbup:

DEE
03-13-2011, 12:19 AM
Of course !!! Im 21 !!!! its the same every year I wish :flapper:

Sangye
03-13-2011, 03:15 AM
LOL Hammy! :lol::lol:

DEE
04-06-2011, 10:50 PM
Its a good job that I have not lose sense of humour to wg . I went to buy a good pair of sun glasses for one of our big chemist , there was rows of them .
to many to choose from I thought THEN I came upon a section just for weggies !!! the sign said FAT FACE FRAMES:rolleyes1: Specially sp made for moonface :flapper:

drz
04-07-2011, 08:05 AM
Its a good job that I have not lose sense of humour to wg . I went to buy a good pair of sun glasses for one of our big chemist , there was rows of them .
to many to choose from I thought THEN I came upon a section just for weggies !!! the sign said FAT FACE FRAMES:rolleyes1: Specially sp made for moonface :flapper:

They would need a different name in USA if they wanted to sell them. That would be like trying to sell clothes for "chubbies" today.