Update on Holly

[Daggar]

Holly had her last iv methylpred last Thursday but will continue to stay put at 10mg of oral/day.

She was checked over carefully while receiving the treatment and they did discover a small sore in her nostril. Kind of scared us a bit when they first noticed it but Rheumy told us that since Holly had a bit of a head cold the week before (making the rounds at home and school) she isn't too concerned but will keep a close eye on it. No joint or muscle pain to speak of during the days leading up to the treatment since she stopped doing the heavy bag. Appears that she was aggravating that by doing too much.

According to the Neph who has been at Holly's side since the beginning, sinus issues will continue to pop up at times (especially during colds/viral infections) and does not necessarily mean WG is back. Her nasal sore has healed mostly since restarting the polysporin/vaseline mix and there were no signs of blood at any point.

Question: How can you tell the difference between ongoing sinus issues and a possible flare-up?

Her bloodwork was fine and I guess that may answer my question?

[Sangye]

That's great news, Daggar. It's understandable to have a lot of apprehension right now. Some of the others with sinus involvement can give you better info about how to distinguish baseline symptoms from Wegs.

[pberggren1]

I have found it very hard to distinguish normal nose and sinus stuff like infections from Wegs.

As soon as I start getting worse in the nose and sinus area, like increases soreness in nose, more mucus and blood, sinus headaches, etc, I immediately have all my blood work done to see where the WBC, ESR, CRP, and ANCA are at. This gives me a better idea of what is going on. And of course I see my doc right away as well. My ENT also comes to town once a week and can get in to see him with no appointment.

Over time you will learn what is damage from Wegs, infections, and Wegs activity itself.

[Daggar]

Sangye, with all that you have had you've never had sinus involvement?

[Sangye]

LOL Very minimal, nothing really.

It's taken me awhile (and plenty of talks with Dr Seo) to realize that I actually don't have that much Wegs involvement. The problem is that it's been refractory to most treatments and the form it takes every time (ie alveolar hemorrhage) is severe disease activity. My body doesn't just flare a little, it goes right into lung hemorrhaging every time.

Other than that, most of the problems I've had/ still have are secondary to Wegs-- drug reactions, damage from Wegs or the drugs, conditions caused by Wegs or the drugs, etc.... The only actual Wegs involvement I have is lungs, joints, skin (rashes and ulcers--none of that for awhile now) and very minimal nose involvement. There are many people with far more involvement but far fewer complications!

[Daggar]

Don't get me wrong - I love your avatar... but it may be time to use that "new book for understanding WG" that I just posted in "funny stuff".... this is very complicated!!

[Sangye]

Don't get me wrong - I love your avatar... but it may be time to use that "new book for understanding WG" that I just posted in "funny stuff".... this is very complicated!!

LOL love that picture!

Look at it this way: If one car repeatedly blows head gaskets (not realistic, but use your imagination) but has no other problems, and another car has a lot of problems that are easily fixed with general maintenance, which car is in better shape?

[Jack]

I've had a lot of sinus involvement and the difference between infection and Wegener's for me was that the infections were mainly identified by sinus pain, but Wegener's flares caused a lot of nasal crusting and bleeding.

[NicShaf]

Dagger,
That is great to hear that Holly is doing so well!

[Daggar]

Thanks Nicole.

Do the pred headaches go away with the taper or does that take more time?

[freakyschizogirl]

For me the first thing that went away with treatment was the nose bleeds. Secondly the crusting has eased up but still likes to remind me its there from time to time. And lastly no more sinus headaches that would put me to bed for a day a time. I still do get some tenderness around my sinuses and ocassional pain but thats normall cos i've been naughty and not irrigated or douched my nose for a few days :blushing:

[Chris G]

It's great to hear that Holly is doing so well!

Ditto what the others have said.......since my rtx treatment, the nose bleeds were the first thing to clear up. Nasal crusting is decreasing daily. Sinus headaches are a thing of the past! Sinuses are much less stuffy (this is especially noticeable when I wake up without my sinuses being completely closed!!), and my nose is running less. Big red flags for me when determining a cold from wg........nose bleed (wg), crusting (wg), stuffy runny nose without nose bleed or crusting (cold), sore throat (big indicator of a cold).

[Deb Roy]

Dagger, That is great news!

[Cindy]

Dagger, Excellent news about Holly :)

BTW: I had a lot of sinus involvement - but it's better now.

:lol: And I just looked at "thos" pictures in Funny Stuff - - - - :blushing:

[jeriorleans]

Thats great news! A.J. still occassionally gets very small nose bleeds. (only one or two in the last 6 months. He still wakes up with a stuffy nose and its clears up in an hour or so. The ENT says that is becasue there is so much scar tissue in his nose. No more crusting.

[Daggar]

Hello Eveyrone! It's been a while and I've received a few p.m.'s about Holly's status. She has done the switch to Imuran -- only 50mg/day for the first two-three weeks to make sure there are no adverse reactions. Her lab work last week has shown continued improvement in all areas although her kidneys are still functioning at about 75-80%. She is still on 10mg/day of oral pred and they plan on keeping her there until they can find the right dosage for the Imuran. The goal is to use the Imuran as the maintenance drug and try to taper the pred down to 0 in the future. She still has the ill effects of being on pred but the weight and moon face have decreased significantly over the past month since stopping the iv pred treatments. Her CRP is at 0 and has been for a long time -- her PR3 has been in the normal range for the past 3 months (2.5).

I'm finding it difficult to keep up with her lately as she is going through an "experience everything now" stage. Totally understandable considering how sick she was 6-7 months ago and although it is hard not to worry I've come to the conclusion that if she's feeling well enough to do it and she suffers no ill effects afterward I'm going to let her be as active as possible.

I hope everyone is doing well and enjoying the summer -- I think of you guys/gals quite a bit!! Take care!

[Sangye]

What great news! This made my day. :w00t::thumbsup::hug3:

[Cindy]

Daggar - Thanks for the update and glad to hear the good news. Go Holly!

[Brooke]

Glad she is feeling great!!:thumbsup:

[jeriorleans]

Daggar, you should have Holly's doctor recommend her for a "Make a Wish". i think there is a similar organization in Canada. To qualify you have to have a "life threatening disease". A.J.'s doctor nominated him and we just got back from a week long, all expense paid trip to Maui. It was much needed and A.J. so enjoyed it. It gave us time not to think about medicine and lab tests and doctor's appointments.

[Chris G]

That's such great news! I think the simple fact that she has the energy to do the things she wants is a great sign too!

[DEE]

Thats fantastic news about Holly . :thumbup:

[watersedge]

So happy that your daughter Holly is doing well Daggar. However difficult it is for an adult to feel sick and deal with w.g. it must be awful to have to see your own child go through it. I hope Holly enjoys the rest of her summer full of sunshine, activities, good health and of course a bit of mischievousness thrown in.

[Psyborg]

This is great news I hope Holly continues to get improvement.

[Daggar]

Holly is doing well and has made great strides in her recovery. The Neph's are very surprised that she has recovered as much kidney function as she has so we're hoping she can at least maintain that for a very long time!

She has been on 125mg/day of Imuran and 5mg/day of pred for awhile now and she seems to be doing okay. We have a clinic in late November to determine what the next step is -- hopefully she can get off the pred slowly but surely.

She has a number of tests this month (1st year anniversary since diagnosis) to make sure the drugs/disease hasn't caused more damage than known.

Sure sorry to hear about Jack -- hope everyone else is doing well or on the road to doing well!

[pberggren1]

Good to hear Holly is doing well.

I will be in Calgary next week for a doc appointment and bronchoscopy. I will be seeing Dr. David Stather, a pulmonologist.

Let me know if you want to meet.

[norcalian]

Hey Daggar - good to hear from you. Glad to hear that Holly is doing so well. I hope her tests go well and that she has a long remission. Take care!