Finally getting off cytoxan ! and lowering preds

[elephant]

Wish you the best Dee, and hoping the Imuran works for you. Hope the frog leaves you soon in the middle of the night.

[maryann]

I was recently diagnosed with WG last may and went on treatment or cyclophosphomide and prednisone. Ended up tapering down on both but flared up again last week. How they found my diagnosis was it was affecting my kidney function. Im being treated by a nephrologist and was wondering if i should ask about a rheumatiologist? If anyone else has been affected this way what kind of meds are they on and have you had many flare ups? Are you able to work everyday? My job is very physically demanding and find myself exhausted everyday. With this flare up it really scared me and was wondering if any others had flare ups and they do okay after them, when the start to treat it more aggressive. Any information would be helpful as i have a DR appointment tomorrow and was wondering what questions to ask. Thanks again and good luck to all

[Sangye]

Hi Maryann, welcome to the group. Yes, you definitely need a rheumatologist overseeing your care. Very rarely other specialists can provide proper care as the main doctor. Here's info for you, even though you aren't newly diagnosed. http://www.wegeners-granulomatosis.c...need-know.html

The way Wegs and flares affects us is very different. I haven't been able to return to work for over 4 years.

[elephant]

I agree with Sangye. Maryann, feel free to ask us any questions...hope all goes well tomorrow!

[Jack]

Hi Maryann,
The specialist for Wegener's is usually a Rhumatologist, but there are sometimes specialists from other areas. In my own case I had renal failure and was moved from the care of Rhumatology to Nephrology, but the two departments co-operated in vasculitis research so I had the best of both worlds.

Flares during the early stages of treatment are very common indeed and do not act as a predictor to how well you are going to do long term. It took me 4 years to reach remission, but then had 20 years without a Wegener's flare and was able to taper off onto less toxic treatment. Many manage to reach the stage where they can go without any drugs at all although there is still no permanent cure as such.

A common drug regimen is Cyclophosphamide and Prednisolone to start with until some sort of remission is obtained. This can then be changed to something less toxic such as Azathioprine and Pred or Cellcept and Pred. There are various alternatives to these depending on how well you respond, but Cyclophosphamide should not be continued for more than 6 months (12 month maximum) and you MUST drink lots of water with it.

Most people also take a cocktail of other stuff mainly to combat side effects. Let us know what you are on.

[Fran]

Hello Dee - How are things with you - haven't see you update lately - hope that means you are doing ok

[DEE]

Hello Dee - How are things with you - haven't see you update lately - hope that means you are doing ok

hi Fran
still taking Imuran doing better than when on Cellcept just not sure about symptoms im having just now
as i only been on drug for three weeks . Having full bloods done monday pm
had INR done thurs and got results fri now on 9mg warfarin more than when i left hospital !!
hot sweats and not sleeping back to dont know if this is because lowered pred 2,5 mg too
But main issue at the moment is getting my eyes sorted went shopping with hubby saturday ,when we got to the till he asked why i bought three bags off potatoes , i had not two were potatoe the other was suppose to be red onions
the reason keeping to myself is ive taken the last three years on the chin stood up and kept going but not finding it easy at the moment maybe just a blip my time to feel sorry for myself
dont worry will bounce back sooner or later
hope your taking care of yourself DEE x

[elephant]

Dee, hope your eye get taken care of soon. It went really smooth with me getting those cataracts out. LOL about the potato and onion mix up!

[Sangye]

Aww Dee, I've been having a rough time lately, too. I know how it is to just feel beaten down by this mess. Please take care of yourself.

Regarding the warfarin, something is wrong. You'd have to be drinking many glasses of green juice every day to need 9mg warfarin. I suggest you switch to brand name (coumadin). This is one drug where generic is not an acceptable trade-off.

[elephant]

Dee, I agree with Sangye.