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Red
06-28-2011, 12:33 AM
Diagnosed Nov,2010 Still on I.V.cytox 30mg pred. Rhumy says blood is good but eye flair need more cytox:crying:. Have 1 st visit Mayo Rodchester DR Steven R. Ytterberg any advise on how it will go .:confused1:

Sangye
06-28-2011, 02:57 AM
I'm SO relieved you're going to Mayo, Red. They'll know exactly how to proceed. It seems to me that if the ctx hasn't gotten your Wegs completely under control by now it might be time to consider another drug. And being on 30mg (or higher) of pred all this time...definitely not good.

I suggest you start writing down your questions now and bring them with you. Mayo is an excellent center, and they will give you thorough explanations of your treatment options, the research and risks/benefits. I don't recognize that doctor's name-- is he in the Vasculitis Clinic?

Red
06-28-2011, 05:25 AM
yes, head Dr.

Hammy8241
06-28-2011, 05:45 AM
Being in the UK rather than over there, naturally I can't help you with your question specifically.

However, to reduce the stress levels before I go anywhere new I follow the following procedures:

Make sure I know how to get there, how long it takes, where the car parks are in relation to where i have to enter the building. In the UK we also need to have change for the car park!

I always take a book to read whilst I’m waiting, Find out where to get refreshments and the nearest toilets before i go the appointment. If i expect that I may have to go to other departments (ie x-ray) I also try to have an idea where they are in relation to my appointment.

With the pred I find my anxiety levels can be high and so whilst it may be a bit 'nerdy' I find the more knowledge of unfamiliar surrounding I have the more confident I am.

Oh yes ........Clean underwear is compulsory.... just in case:rolleyes1:

Hope you have a rewarding trip Red.:thumbup:

Sangye
06-28-2011, 05:55 AM
yes, head Dr.
LOL Whew! Just wanted to make sure you were in the right department!

drz
06-28-2011, 09:25 AM
Diagnosed Nov,2010 Still on I.V.cytox 30mg pred. Rhumy says blood is good but eye flair need more cytox:crying:. Have 1 st visit Mayo Rodchester DR Steven R. Ytterberg any advise on how it will go .:confused1:

As long as you have right doctor in right department everything should go fine. No place does as well as holding your hand and getting you through everything as the Mayo clinic. It is only place I know where they have never mispronounced my name since they take care to get all details correct. Often you are an exhibit there due to large number of residents who study there and one of them may do much of your history before you see the assigned doctor.

Check out prior posts here from MinneapolisMark who wrote extensively about his Mayo experience. They have some good eating places in the Clinic and nearby too.

Best wishes for a good trip.

Red
06-28-2011, 09:47 AM
Thankyou for all the advice it is 71.4 miles door to door via country roads packed and ready keep you posted,Thanks Brad

Red
06-29-2011, 08:24 AM
Well met Dr he did interview ordered chest x-ray,blood and urine did this last week except x-ray ,went to give blood room full 300 people 30 min wait not bad,x-ray 100 people 20 miin wait not bad.
Dr is booked for 3 weeks come back why did i drive to see him then treated like cattle.
See eye Dr if wegie is active in eye the switch to oral cytox or rxt,if not active then maintance drug. so so day i was expecting more

Palmyra
06-29-2011, 11:13 AM
Hey there Brad,

The Mayo Clinic is extremely efficient...sorry you felt like cattle, but I assure you, they know what they are doing when it comes to Vasculitis. And you are so very lucky to be within driving distance! We travel from Texas, via air and rental cars/hotels....you have a great facility in your back yard.

It sounds as if you are understandably overwhelmed with all of the implications of this diagnosis. Is it only your vision that is affected, or is there more to be investigated? The most brutal, awful time in my daughter's diagnosis was the shocking first few months....(to be honest, the first few years). There are many here to give you support and guidance. Hang in there, and know that you are at a good place, and we all wish you the best regarding peace and calm. Fear brings out the worst, but that, like all things will change with time. Keep us posted on your progress Red! (Really cute puppy, by the way!)

Red
07-23-2011, 12:06 PM
Well had follow up today, mayo eye dr says minor wg involvement in rt eye can be treated with drops ect, Mayo Rhumy says no more cytoxxxxxxxx yess my blood is good only thing was sed rate was 23 lower pred and go on maintance drug
this is only a 2nd opinion my main dr says 1 to 4 more iv cytox treatments and then see what happens to eye ,UofM eye dr days can be treated with drops ect . well i think ummmm well what if my eye flairs gets bad mayo rhumy says retuxatab
i dont no how to spell today had 2 beers for the first time in 9 months buzzed i dont no what to do that my up date .

Sangye
07-23-2011, 12:14 PM
I'd go with the Mayo doc's opinion if it were me. It doesn't make sense to keep you on ctx longer if the eye can be treated with drops.

elephant
07-24-2011, 10:11 PM
I agree with Sangye.