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drz
02-10-2011, 02:33 PM
I was diagnosed 10 months ago today. I saw my rheumatologist today and the news was all good. For the first time both inflammation markers were in normal range, just barely but best numbers in past 10 months. Blood work indicates I am tolerating azathioprine well and will continue on the therapaeutic level of 150 mg the experts recommend for me. The plan is to start tapering prednisone again from 10 mg a day by 1 mg every month and see what happens. The lab work along with absence of any strong Wegener's disease symptoms suggest I may have reached a drug induced remission.

Sangye
02-10-2011, 03:05 PM
That's fantastic news, drz. I'm so happy for you! :w00t::thumbsup:

DEE
02-10-2011, 04:38 PM
Brilliant news drz :thumbsup::thumbsup:

Jack
02-10-2011, 08:40 PM
It is always good to hear of people doing well as it gives a little more balance to the reporting of the disease. The forum tends to contain a lot of reports of people having problems which is the reason for them posting, but in fact there is a lot of good news out there too. It is easy to forget that most patients achieve quite a reasonable standard of life. Some near normal! :biggrin1:

Hope the progress continues drz.

Geoff
02-10-2011, 11:50 PM
I agree totally with Jack's comments. I find it so uplifting to receive good news like this. Thanks for the great news drz and long may it continue!

NicShaf
02-11-2011, 03:19 AM
Great news drz! Ditto for the comments above, it is always nice to start the morning off with good news, thanks for the lift in spirits today:biggrin1:

swhenry01
02-11-2011, 03:47 AM
My 17 year old daughter Megan just started taking azathioprine. Did it cause any side effects for you ??

Jack
02-11-2011, 03:57 AM
I think that most get on OK with Aza. I never had any problems with it.

Daggar
02-11-2011, 04:05 AM
Good news DRZ... hope to hear more of this!

One question for all of you -- The word "remission" has me confused. Holly's nephrologist told us that after 2 months of treatment she was in what he called "remission". There were no active signs of the disease but there were the tell-tale signs of "damages" from WG. Her ANCA is in the normal range and the c-reactive protein levels have been flatlining at 0 for quite some time now. Yet, the doctors are staying the course with the cyclo and prednisone (oral) and are now giving her extra treatments of the iv metylyprednisolone montly until June. Are these precautionary measures on there part or is there something they're not telling us? And, how do they determine "remission" -- I've never gotten the same answer twice when asking this question.

Jack
02-11-2011, 04:12 AM
The subject has been discussed several times on the Forum and it seems that Remission can mean anything you want! :wink1:
People's understanding of the meaning seems to stretch from "drug and symptom free" all the way through to "taking lots of pills and not really very well, but not showing Wegener's symptoms" (that's me!).

Brooke
02-11-2011, 04:18 AM
Great news Drz!! I hope you stay in remission forever!! :thumbsup::cool1::hug3::smile1:

freakyschizogirl
02-11-2011, 06:00 AM
Fantastic new drz, long may you be in remission. :thumbsup:

drz
02-11-2011, 07:34 AM
My 17 year old daughter Megan just started taking azathioprine. Did it cause any side effects for you ??

Not yet. I had the enzyme test to check if it was safe for me but started the drug at low dosage before those results came in. I have been on it about three weeks now. Azathioprine might be tad better than MTX in preventing relapses according to latest research.

marta
02-11-2011, 09:30 AM
Woooo hoooo drz. Best news all day.

Stay true and remission till you're too old to care - i.e. over 120 years old:w00t:

NicShaf
02-11-2011, 09:43 AM
Daggar,
I was diagnosed in December 2010, I am not too far behind your daughter. I have asked my doctors the same question. The answer I received was that remission to them is symptom and drug free with an ANCA level below 1:40. I am on a current plan of Cytoxan and Preds, both oral, for at least 6 months. My understanding with the 6 month minimum is that they want your body and immune system to adjust, and if they take you off the medication too soon, you're likely to flare (or your daughter is, in your case). My ANCA's have dropped to 1:40, and most of my symptoms have gone too, and I'm only about 6 weeks into treatment, but still they are looking at having me on Cytoxan until about June, I'm tapering my Preds already.
I hope this helps with your question a little. You've found a great site, I hope you find it as helpful as I have. Best of luck to you and your Daughter.

Sangye
02-12-2011, 02:41 AM
Good news DRZ... hope to hear more of this!

One question for all of you -- The word "remission" has me confused. Holly's nephrologist told us that after 2 months of treatment she was in what he called "remission". There were no active signs of the disease but there were the tell-tale signs of "damages" from WG. Her ANCA is in the normal range and the c-reactive protein levels have been flatlining at 0 for quite some time now. Yet, the doctors are staying the course with the cyclo and prednisone (oral) and are now giving her extra treatments of the iv metylyprednisolone montly until June. Are these precautionary measures on there part or is there something they're not telling us? And, how do they determine "remission" -- I've never gotten the same answer twice when asking this question.
Assuming her docs know what they're doing, this is in line with what Dr Seo told me about Wegs treatment for kids. He said it's more intense, because it's harder to get the Wegs under control. They use a higher dose of pred, too.

drz
02-13-2011, 09:33 AM
I got some more good news from from endocrinologist yesterday. I had not seen him since Oct and he said I was much improved since my last visit. Most of my lab results were within normal limits and those that weren't had improved since last test. I was happy to hear my kidney function had rebounded back up to 51 GFRI or 1.73 m2 for those on metric system and my creat was down to 1.38. Last time these numbers were 41 GFRI and creatnine of 1.55.

This is a big deal to me since I had kidney damage before my Wegener's disease from decades of diabetes and my mother died from kidney failure from diabetes so this has been a big concern of mine in the past. My kidneys were damage more before diagnosis of Wegener's from CT scans they did trying to sort out why I had blood in my urine. I had been on Metformin and it doesn't go well with the dye these use in CT scans. Then Wegener's attacked my kidneys and it looked like I was headed for dialysis.

In an incident that seems humorous now I remember when a nephrologist came in to tell me my kidneys were failing rapidly. I remember being depressed about it at the time but I was too sick at the time from massive bleeding in my lungs, and probably too high on 1000 mg of solumedrol, and brain dead from my low hemoglobin (my brain does not work well when HGB is in single digits and I was down in the 5-7 range from the bleeding) to realize that he was essentially telling me i was going to die since i was too sick to consider dialysis at that time. He came back in five minutes all apologetic and flustered that he had his charts mixed up and I was actually responding to the aggressive treatment I was getting and my kidney function was improving and if I maintained it I would not need dialysis after all.

It is very difficult for me to think much about those low times last spring when my survival was either doubtful or at best very uncertain since the doctors described me as having an "extremely nasty version of Wegener's". I was not in great health before Wegener's due to complications from years of diabetes and already had neuropathy in my feet, glaucoma, cataracts, mild kidney damage, fatigue, and mild anemia from kidney damage so I was not a young strong healthy person with a good prognosis for recovery. I may have set some records for a Wegener patient, the kind you don't want, at the hospital for most amount blood products used for transfusions and plasma replacement and trips to ICU. But with the aggressive treatment i received of high steroids, Rituxan IV, numerous plasmapheris treatments, Cytoxan IV, oral Cytoxan, lots of antibiotics to treat infections, intubation and other procedures I had what is described as amazing recovery (some say miraculous). It has been a rough bumpy road and wild roller coaster ride but I now feel great that I have reached an improvement that may qualify, at least under the most generous definition, as a remission. Given my history I am hopeful I might even get better in the future and meet a more conservative defined remission. For family members of someone newly diagnosed I offer my record as encouragement that with proper treatment one can recover from even an "extremely nasty version of Wegener's granulomatosis" so keep the faith. Like one of my mentors told me, "if you can survive the treatment, it will get better" and it has.

chrisTIn@
02-14-2011, 01:00 AM
I had what is described as amazing recovery (some say miraculous). It has been a rough bumpy road and wild roller coaster ride but I now feel great that I have reached an improvement that may qualify, at least under the most generous definition, as a remission.

Wonderfull Drz, the story of your remission.
I hope your quality of life stays as good as you describe it here,
and will even improve over time.

This story sure is giving hope to everybody with WG.
It states that you can recover, even from an 'extremely nasty version of Wegeners' Granulomatosis'!

NicShaf
02-14-2011, 02:08 AM
More awesome news drz!

dunkie2202
02-14-2011, 02:26 AM
What an awesome story to read Drz.....made me feel all warm and fuzzy inside lol I'm soooooo happy that you have achieved remission.
My numbers are also looking very good....Kidneys are still at 17% ( no change in 4 mths ) but I think Weggie is sleeping.
I've just started taking Imuran 150mg ( one week ) the only side affect Ive had was nausea. So I now take them one x three times a day rather than all at once with breakfast...:thumbsup:

Sangye
02-14-2011, 02:39 AM
Dunkie, glad you're doing well. :smile1:

drz, that's a great story. I'm sure happy you're here to tell it. :thumbsup:

drz
02-14-2011, 05:36 AM
Thanks to every one for the well wishes. Hope we all can achieve even better health this year.

Jaha
02-14-2011, 07:11 AM
Very happy to hear your great news! After what you have been through, you are definitly in remission!
Jana