"All good news"

[Pete]

I had my periodic appointment with Dr Villa Forte at Cleveland Clinic today. She said my most recent flare that began in August is almost a thing of the past. My labs are either normal or trending toward normal. My lungs are clear and vitals are good. My ears and sinuses are stable. The blood in the urine, after microscopic examination, shows that the cells are "shells" indicating the flare is in the past. Rituximab rocks!

I asked her what indicators she was zeroing in on in my case. Creatinine, eGFR (measure of kidney filtration effectiveness), sed rate, and C-RP. She said that because these indicators are either normal or trending that way, the flare is pretty much over, and I'm trending toward remission.

I asked about the bloody crusting and nosebleeds. She said the inside of my nose shows damage from GPA. It's also very dry, so she prescribed the Clinic's proprietary nasal ointment (no antibiotic in it) and use of a neti-pot rinse daily.

The pred taper will continue at 5 mg/wk down to 20 (2 more weeks to there), then 2.5 mg/wk down to 10. Once I'm at 10, we'll discuss the rate from there on down.

My doctor, my wife, and I are very pleased with my progress. I'm blessed!

[NikkiNicole]

Good news ... that is great news!!! I wish I could give you a big ol' hug! Keep going in the right direction!

[Dirty Don]

I'd hug ya too, but it wouldn't be the same I guess! EXCELLENTE Senor!!!!

[Sjap0655]

That's great news!!!! We are on the same taper schedule and I go back to CCF in Janurary. I pray I have the same results as you!

Butwhat a great way to spend these cold winter days/nights....worry free. Enjoy time with your family and keep us posted on your progress!


Sheila
fellow ohio WG

[rebekah]

This is wonderful news!! So glad to hear Rituxan is doing it's job and things are going well! :)

[Debbie C]

Great to hear Pete.Hope you have a wonderful holiday with that little baby and the rest of your family:hug3:

[annekat]

Hugs from me, too! I'm so glad things are going the way we all hope for, for all of us!

[Alysia]

going for hugs is great in those cold days :hug1::hug2::hug3:
great news :thumbup: rtx is a miracle. I hope that you will continue your improvement....

[windchime]

What a wonderful Christmas present Pete. What better way to spend the holiday. :thumbsup:

[renidrag]

Great news Pete, enjoy your holidays.
Dale

[gilders]

Great news Pete!
I'm still in a bit of a rut. My relapse symptoms have worsened, especially this last week. All my bloods are coming back good, in fact my ANCA has just gone negative for the first time in 14 months (goes to show you can't rely on ANCA). My nephrologist, who deals with my WG, is now quite concerned as it's been over 2 months on high dose Pred and Aza. This has always knocked my relapses back into remmission, but it doesn't seem to be working this time. He's giving me to the beginning of January and if no improvement I'll be on something stronger.
It will have to be RTX as I previously couldn't tolerate Cyclo and MTX isn't suitable due to kidney failure. He mentioned Mycophenolate but from what I've read it doesn't seem much more powerful than the pred/AZA combo I'm already on.
There is still some issues with obtaining RTX on the NHS, but I'm hopeful I can get it AND tolerate it, otherwise there's no other treatment I'm aware of.
I'm at the cardiologist next week as the heart issue is getting worse every day. My nephrologist has aid he will also get a rheumatologist involved if I need stronger drugs in January.

I really need to be much better by May as we have a holiday to Cyprus booked. I couldn't get insurance for it as I booked when my ANCA was positive, so if we miss the holiday we won't be able to claim any of the money back.

[Debbie C]

Gilders.I am sorry to hear you are not getting any better. I don't understand, if your blood and anca are coming back good. What is the matter. Are they saying your kidneys getting worse from a urinalysis?
And what it the matter with your heart ??? I was out to dinner last night and ran into a cardiologist I used to worked for and as we were talking my wegeners came up and he said he just had a patient last week with wg where her heart was enlarged and she had fluid around her heart...but they changed some of her meds and she is doing fine now.He gave me the phone where he is working at now and said he would be happy to take me as a patient. So I'm going to call on Mon. Maybe that is what you need is a change on your meds. I hope it all works out well soon ,I know how much you are looking forward to your holiday. I will keep you in my prayers

[pberggren1]

I'm so sorry gilders. Heart involvement sounds so scary.

[annekat]

I'm so sorry gilders. Heart involvement sounds so scary. Me, too, Gilders. I hope that they can figure out what this is and that it turns out not to be WG affecting your heart, and/or some sort of med adjustment could make a difference. I hope and pray for a turnaround in your condition, and that you can go on that holiday as planned. We would love to see pics from Cyprus.

[Alysia]

Great news Pete!
I'm still in a bit of a rut. My relapse symptoms have worsened, especially this last week. All my bloods are coming back good, in fact my ANCA has just gone negative for the first time in 14 months (goes to show you can't rely on ANCA). My nephrologist, who deals with my WG, is now quite concerned as it's been over 2 months on high dose Pred and Aza. This has always knocked my relapses back into remmission, but it doesn't seem to be working this time. He's giving me to the beginning of January and if no improvement I'll be on something stronger.
It will have to be RTX as I previously couldn't tolerate Cyclo and MTX isn't suitable due to kidney failure. He mentioned Mycophenolate but from what I've read it doesn't seem much more powerful than the pred/AZA combo I'm already on.
There is still some issues with obtaining RTX on the NHS, but I'm hopeful I can get it AND tolerate it, otherwise there's no other treatment I'm aware of.
I'm at the cardiologist next week as the heart issue is getting worse every day. My nephrologist has aid he will also get a rheumatologist involved if I need stronger drugs in January.

I really need to be much better by May as we have a holiday to Cyprus booked. I couldn't get insurance for it as I booked when my ANCA was positive, so if we miss the holiday we won't be able to claim any of the money back.

Hi Pete,
I am sorry that you are not getting better. are you not getting the rtx yet because it is not approved yet for you ? maybe you need to insist more on it ?
I am sending you warm hug :hug2:
take care and update us.

[gilders]

Thank you all for your kind words. I don't want to hijack Pete's good news thread with my not so good news, so I'll find one of my old posts to update about myself and explain how my relapse is worsening, even though ANCA is improving.

[mishb]

Pete, that is fantastic news about your bloods.

Look out 2014 :thumbsup:


Other Pete (gilders), it's just one thing after another. I'm sorry that you are still struggling.

[Pete]

Gilders,

I sure do hope you can find a way to good health so you can enjoy your trip to Cyprus. Illegitimus non carborundum est (Don't let the bastard grind you down)!

[Pete]

I had my periodic appointment with Dr. Villa Forte on Monday. My lab work has all been within the normal range for the past two months now. We discussed future treatment plans. She does not contemplate prescribing any more rtx unless I show symptoms. She is unsure about the long-term effects of rtx in treating GPA. I'm OK with that knowing that it's there if needed. We also talked about my fatigue the day after I take my mtx (20 mg/wk). She suggested trying 17.5 mg/wk to see if that side-effect lessens. I tried it this week and felt a little better today than usual. I'll see how it goes for a couple of weeks. If the fatigue continues, she said I could go down to 15 mg/wk, but no lower. I'm also tapering pred. Now down to 6 mg/day. Since I'm recovering from a cold, she said not to drop down to 5 mg/day unless I was symptom free. Once that's the case (probably this weekend), I'll continue the taper at 1 mg less every four weeks. If symptoms arise, I'm to call her for guidance.

My hearing seems to be deteriorating. Going to see the audiologist next week for a hearing test and hearing aid adjustment (if needed). If the test shows actual deterioration, I'll call Dr. Villa Forte and see what she suggests. I think my ENT has left OSU, so I may need to find another one.

I've been a bit of a slug lately as far as working out is concerned. Just haven't had the energy since I had the tooth pulled and the cold. Now that the weather is breaking, I'll make time to get back out and start walking the neighborhood loops tomorrow. My wife and I have been watching the grandkids a couple days a week while their mom recovers from having her gall bladder removed. I get my exercise those days chasing the one-year old around and lifting her up to point her in a new direction. It's fun, but they do wear us out. (Now I understand why parenting is for the young!!)

[Alysia]

Hi Pete,
thanks for sharing. you were relatively "quiet" around here, so I was wondering how are you.... I am glad that you are busy with your sweet grandkids.
I wonder about the rtx: as far as I know, and this is what my wg-doc is telling me: I need to get it every 6 month, 1000mg (2000mg is for flaring).
but maybe you don't need more because you are "covered" by Imuran or MTX ? (they didn't work for me)
I am sorry to hear about your hearing. I hope it is not serious. please update us.
sending you lots of hugs :hug1:

[windchime]

Pete,

Glad things are looking up, although the hearing loss is difficult I'm sure. I agree that parenting is the for the young. Small doses so you can recover between visits. Enjoy them though as much as you can.

[Pete]

Met with my audiologist today. Hearing test was virtually unchanged from last September and the year before that. She re-programmed my hearing aids, and I'm now hearing much better - especially in the frequency range of my wife's voice. ;)

[pberggren1]

Ya, wives voices do change a lot.....lol

[MikeG-2012]

Met with my audiologist today. Hearing test was virtually unchanged from last September and the year before that. She re-programmed my hearing aids, and I'm now hearing much better - especially in the frequency range of my wife's voice. ;)

So how much did your Mrs. pay the audiologist to make that adjustment Pete? LOL!!

So glad everything went well for you!!!

[Pete]

Had an appt with my audiologist and a new (to me) ENT today. Hearing has actually improved a bit in the lower frequency range. I briefed the ENT and the accompanying resident briefly about GPA/Wegener's. They both said the left ear looked perfect. The right eardrum still shows the scars I earned at disease onset, but nothing else noteworthy. The sinuses looked good. The damage to my septum that Dr Villa Forte saw last month was of no concern. Will go back next year just to make sure nothing sneaks out of normal.

[Psyborg]

Good news Pete :)