Im New here "Limited WG"

[vincelv]

:unsure:im new too this..i just started cytoxan..im on 60mg of pred..went through alot to get diagnosed..lost the vision in the right eye but they say that my eye is healing.but my vision is black exept in the furthest right corner..the docs thought it was nodular scleritis and found out wrong when the bumped pred up too 100mg and it made it worse..cuz blood test came back neg. for infection..so they hit me with every anti bio,viral,anti fungal i was in hospital for a month..finally they can treat the WG..i dont have too much probs with prednisone..but i dont like being chained down too it."dependency"they said my threshhold is 30mg..that was at the hospital..but my WG specialist i guess he is the best in the western U.S. for treating WG he said he will beable too taper me within a six month period..so i hope its not hot air...lol as for the cytoxan and methotrexate or whatever i am scared about infection..the docs told me not to worry..but i work at walmart on the front end..i start working again tommarrow...my WG is mostly eye and nasel involvment..guess i got lucky...well im probly going to be asking for alot of advice and things.. i was going to see if i could get into voc rehab to find a job thats less strianing on my left eye and to get away from the public to aviod the colds and germs cuz i dont think my vision in the right eye will come back..and i dont really know how long ill be on immuno suppressants:glare:

[pberggren1]

Vince, I am sorry to hear that you have to deal with this aweful disease like the rest of us on here. But at least you have come to the right place. We are on big family here. Feel free to vent and rant and ask any questions you like. There are no stupid questions when it comes to Wegs. It must be very difficult dealing with you left eye with so little vision in it. I can't imagine what you are going through. Though I am almost deaf myself. So I can relate in the sense of losing a sense. Glad to hear that you have a Wegs Specialist. If I remember correctly it was not too long ago that a New Vasculitis Clinic was set up in Salt Lake City. So you are in the right place for propper care. As far as work goes if you are able to work then do it, but voc rehab is a very good idea at getting a better job, getting away from the public, and less stressful. Because the main thing with Wegs it seems is stress. I don't agree with the docs saying not to worry about infection. Take every precaution you can like: no shaking hands, washing hands frequently, using hand sanitizer when you can't wash, maybe even wearing a mask, etc. Have you been on the Pred longer than the Cytoxan? I think that within the first 2 to 3 months you should be down to at least 20 mg of Pred, that is if things are going good and you are responding well to treatment. I'm not to sure what else to tell you right now but I know other members on here with have more advice and questions. There is a thread on here called: What the newly diagnosed need to know. I would check that thread out for sure. Otherwise please keep us posted as to what is going on.

Phil Berggren

[drz]

:unsure:im new too this..i just started cytoxan..im on 60mg of pred..went through alot to get diagnosed..lost the vision in the right eye but they say that my eye is healing.but my vision is black exept in the furthest right corner..the docs thought it was nodular scleritis and found out wrong when the bumped pred up too 100mg and it made it worse..cuz blood test came back neg. for infection..so they hit me with every anti bio,viral,anti fungal i was in hospital for a month..finally they can treat the WG..i dont have too much probs with prednisone..but i dont like being chained down too it."dependency"they said my threshhold is 30mg..that was at the hospital..but my WG specialist i guess he is the best in the western U.S. for treating WG he said he will beable too taper me within a six month period..so i hope its not hot air...lol as for the cytoxan and methotrexate or whatever i am scared about infection..the docs told me not to worry..but i work at walmart on the front end..i start working again tommarrow...my WG is mostly eye and nasel involvment..guess i got lucky...well im probly going to be asking for alot of advice and things.. i was going to see if i could get into voc rehab to find a job thats less strianing on my left eye and to get away from the public to aviod the colds and germs cuz i dont think my vision in the right eye will come back..and i dont really know how long ill be on immuno suppressants:glare:

How vulnerable you are to infection will vary according to dosage of the immnunosuppressant and your response to it. The weekly labs or whatever your doctor thinks is needed will help monitor how vulnerable you are to infection. Working with the public though at a place like Walmart is going to be a lot more high risk situation than working alone in a small office some where.

[vincelv]

I have been on prednisone for almost a year..its been up and down..i had scleritis which they didnt know the underlying cause..so typical treatment was pred drops and pred pills and nsaids..but it got bad the last few months...luckly im in the right place for the eyes and for WG ..and the doc thats the head of the vasculitus center is my doc.. dr. curry koening.. i see him next month.. when i was at the hospital i seen him every other day..he would visit me..i had teams of docs..just cuz of my eye case..because the infection strian that i had couldnt be identified..and symptoms were so weird..but we got that settled no WG treatment..blaa another immuno suppressent..atleast the side effect dont make me feel like the anti bio,viral,fungals they had me on..my pottasuem and magnieseum bottomed out..my blood platlets were low..then the lack of sleep..one day i had nurses putting 4 different dropps in my right eye every hr for three days..lol i was so tired..i just would take my 45 min naps..haha and watch tv..and listen too my iv beep every hr or 2....:laugh:

[vincelv]

im on 175mg of cytoxan 60pred.. every other day is bactrim..then all of my drops..and vitamins an so on..imma keep clean..hopefully i do good

[elephant]

You lucky that you don't have no kidney or lung involvement at this time. Just stay on top of your symtoms and report them to your Rheumy or primary doctor.

[pberggren1]

The trouble with Cytoxan(ctx) is that it can lower your WBC to very low levels. If your level gets to 4 or below, then it is critical time and possibly have to go off the ctx.

[vincelv]

my doc thinks ill only need three to six month but he said probly 4 months on cytoxan then he thinks ill probly beable to switch to the metho med.. i still think ive had other involvement.i told my rheumy about it..cuz ive had a weird cough since i was in highschool..and the worste was when it felt like i couldnt breath and i could only take short breaths and that lasted months at a time..the doc when i was in highschool..wasnt sure what it was just gave me a shot of anti biotic..but it never went away so i dealt with it..and it eventually went away after like a year..but the cough would come back and more frequent every year and this last year my nasels got bad and thought i had a sinus headache then my eye got red then it just spiraled down hill..now im where im at now..im just glad its figured out cuz i felt sick alot and nothing worked for me..and if this works im all for it..exept infection..lol but ill deal with that as it comes along

[Sangye]

Vince, I also think a job at Walmart is not such a good idea for an immune-compromised person, especially in winter! If I need to go to a big crowded store like Walmart I go in the middle of a weekday, when it's the least crowded. I'm in and out as fast as the electric cart allows. And when I get in my car I blow my nose hard several times to clear out any bugs I've inhaled. All that in addition to hand sanitizer of course. I'm a little paranoid about germs but it's paid off. In 4.5 yrs since dx, I've only had 2 colds. :rolleyes1:

[elephant]

Smart Sangye, never thought of blowing my nose after going into a crowded place.

[JanW]

Welcome Vince -- it's great you have Dr. Koenig -- he just set up the center out there.

[LisaMarie]

welcome Vince....this is a great place for information and a place to vent rant and yes rage....they are a great bunch of knowledgable people that at times are like family...

[vincelv]

so far so good..i havent gotten sick yet on the cytoxan..keeping clean an sanitized at work helps alot..crossing the fingers..:)

[Sangye]

Great to hear that, Vince. I never got sick while on ctx either. Just continue to be diligent and you'll be okay.

[stikker]

I was worried about being immunosuppresed at first. I have not noticed any difference. I got a cold and seemed to kick it at the same as when healthy. I don't seem to get more colds either.

[Sangye]

Just make sure you don't get complacent about hand sanitizers, etc... The only 2 times I did that (Oct and Dec last year) I got sick right away and it was pretty bad. One time I got lazy about using hand sanitizer while eating at our community lunch. We serve ourselves at a buffet and I always sanitize my hands after touching the serving spoons that everyone's used.

[patricia]

hang in there you'll be fine, we are all just a big loving family here:thumbsup:

[vincelv]

still hanging in there..i feel im beating this sickness..but i wake up with the reminder of my eye..and just think..dont get too cocky cuz if i let myself slip..that wont be good..

[Gator]

Just make sure you don't get complacent about hand sanitizers, etc... The only 2 times I did that (Oct and Dec last year) I got sick right away and it was pretty bad. One time I got lazy about using hand sanitizer while eating at our community lunch. We serve ourselves at a buffet and I always sanitize my hands after touching the serving spoons that everyone's used.
Agreed. Be careful or do some research. I'd ask your dr if I were you, if those sanitizers are a good idea or not.

[pberggren1]

I'm going to ask my doc what his opinion is on using hand sanitizers as well when hand washing is not an option.

[vdub]

Dr. Koening is my doc as well. I had my first appt with him last Feb and he confirmed wegs. My next appt is in June. I will be seeing him every 3 months for a while so maybe we can get togeather sometime. We usually bring our RV and stay at Hill.

[delorisdoe]

I worked in a very public place and counted a lot of dirty money and roll up tabs-ew. For the two years I was on cytoxan pred. and bactrim I never had any significant illnesses worth remembering. Maybe it was the pred or bactrm? My cell count did get dangerously low, so low that I had to have 3 ivig treatments for two weeks.

[vincelv]

i been seeing him evry three months also..lol he gets kinda mad because im not on the blood test every week..but i get it done when i can..but everytime it comes up good..im hopeing i can get off the pred so maybe i can go back too vegas..so i can be around my grandma brother and more of my friends..so im hoping he can refer me to a good doc out there

[drz]

I'm going to ask my doc what his opinion is on using hand sanitizers as well when hand washing is not an option.

I was told to use them whenever washing is not an option but washing was his first choice.