Me too - New GPA diagnosis. High Anca titer

[Alysia]

Sending prayers for easy IV & best results. Enjoy your strawberries

[Alysia]

She also mentioned that it's possible an immunoglobulin infusion might help me in the future due to the disease/treatment. Has anyone had that infusion or heard of it?


Gab

My beautiful Phil had 2 Ivig If you will need I can look back at the info that we have collected.
You will need to check your Igg in your blood tests. If it is under the norm, it means that you cant fight infection. Then it is an indication to get Ivig. It works very fast.

Post 143 of me2 is a very good one here http://www.wegeners-granulomatosis.c...thread-15.html

[Gab122]

Hi All!

Infusion went great - feeling good - home again. dr. Niles nephrology wants me to come back for next infusion in 4 months. But because I'm technically an RA dept patient they decide the call. They told me that when I see them again on 9/9/16 they will decide either 4 mos or 6 mos til my next infusion. They will decide then whether or not to start lowering the prednisone too.

The bigger news from this appt today is that the "benign" fatty mass (blood,muscle, fat) on my kidney is 4cm X 7 cm and its larger than allowed. It is not GPA related. It displaces my kidney and has potential for bleeding into my kidney. So they want me to see a urologist in the next 2 weeks and have further tests/scans. It will need to either be surgically removed or have a coil put in it to cut off its blood supply and shrink it. But they don't want to do that while I'm so immune suppressed. So it'll be at least a few months I believe. I'll know more when I see the urologist. It has not affected my kidney function thankfully.

I go back to Boston tomorrow (about 60-75 min drive depending on traffic) for a pulmonary appt. today's dr heard wheezing in my lungs today and my 02 ranged from 92-100 during my infusion. Blood pressure was great despite pred. Generally 110/70 range.


Alysia, Thank you for this link to your thread about Phil. I have read it start to finish already a week ago and saw how much you loved and cared for him and how much this whole community loved him.

When you mention post 143 are you referring to a particular page? It only seems to go up to page 44 in tapatalk. Shd I open on an Internet browser and reread a particular page? "Post 143 of me2 is a very good one here" I wish I had the chance to get to know your Phil but I look forward to meeting one day when there will be no sickness. . Perhaps you were referring to a page about his ig infusion? When I read your post I didn't know about ig infusions so I think I'll reread

Off to go to a "welcome" cookout tonight at my daughter's school.

I prayed for all of you today on my drive to Boston.

God bless,
Gabrielle

[Gab122]

Hi Alysia,

Ok so I just found post 143 on your thread by user me2. LOL boy was I confused about what you meant but I found it and it does have a ton of info about IVIG infusions. I did talk to the nephrology Dr. today at my infusion about IVIG and I think he said my IG level was normal and would not recommend it. Or my level had been normal prior to GPA treatments... So I'm not sure why the allergist recommended it - maybe she meant if my IG levels were low... So many appts and some of what the drs say doesn't sink in when I'm not familiar with what they are talking about... still on a steep learning curve.
thanks for the info tho!!

Gab

[Alysia]

I am glad that you have found the info. Thank you for your kind words. my beautiful dr. Phil continue to help us by the info that we have collected during his battle..... and he is our guardian from above. always.

you will need IVIG only if your IgG will be under the normal and you will get infections which you will not be able to fight.

I am sorry for the mass on your kidney. maybe it will turn out for good to wait with "cutting" it out (considering it as benign) because eventhough they say that it isnt wg related, it still might be. if I remember correctly, I think that we had somewhere around here cases of masses that disapeared after wg treatment....
so if it is wg related, it will shrink as your treatment will go on - after all rtx IV and reaching the full influence of rtx which is about 3 months after the IV.

hang in there. you are in good hands and in God's hands. "pray, hope & don't worry" !

[Gab122]

Hi All,

Just a quick update with great news,

I had 3 Boston appts this week- all went well, though I spent most of yest and all of today in boston or driving to/from ... Rituxan Infusion went great yesterday and I had a Pulmonary appt today.

Because my 02 levels were low today (89 when pulm had me walk around with her. ) and pulm could hear a little bit of wheezing they ordered a CT scan to check for infection and blood clot. (over zealous testing in my opinion) No blood clot and inconclusive about infection (she saw some ground glass opacities, haziness but said it could be because I had an infusion yesterday?) I have no other signs of infection, so she wants to watch and do f/u CT scan in a month unless symptoms improve or worsen (ie watch for fever, 02 rates, cough etc.)

*** The great news is that the CT today showed that my lung granulomas are Significantly smaller!! (in 3.5 weeks of treatment!) YEAH! The meds are working!***

Then to round out the next 2 weeks I am supposed to see urology and another follow up appt at MGH Rhuematology on 9/9/16. (so that means only 2 trips to boston in the next 2 weeks!)

I did find out today that my next spa day... er, I mean Ritux infusion, is in 4 months (mid Dec actually) At this infusion center, they set you up in this comfy recliner, feet up, heated blankets and they serve you homemade desserts with your choice of beverage. This week it was strawberry shortcake w/ whipped cream and chocolate brownies. mmmm. There is nothing to do but relax, nap, read a book, watch tv etc while people wait on you hand and foot. It's really pretty nice. I feel very spoiled there.

The only other thing to report is I've gained some weight on prednisone and am a bit puffy - blah - will be attempting to curb the cravings and make good choices... and I sometimes feel a bit cranky and less filtered. But small price to pay for effective treatment of disease!

Thank you all for your prayers, well wishes and advice!

Please continue - they are a great comfort to me and are very effective!

Gabrielle

[Gab122]

Friday's chest ct showed granulomas significantly smaller.

[MikeG-2012]

Friday's chest ct showed granulomas significantly smaller.

ALWAYS A GOOD THING!! I'm happy for you!

[Middlesista]

Friday's chest ct showed granulomas significantly smaller.

Wonderful!!! ☺️��☺️��

[Gab122]

Hi all, rough go lately.
Saw RA fri. Told me to taper from 60 to 40. Fri night I felt some numbness in my left arm. My heart rate had been slightly high most of the time even just sitting. Mid 90s+. Saturday evening I did a vagal maneuver that brought my heart rate down then about 30 min later I felt chest pain so I went to the ER.

EKG, labs, xray showed heart ok. Of course my heart rate was 80s lieing in bed at ER. 🙄

Today the least exertion has heart rate high. Standing doing dishes = 115. Lieing on couch 95.

Will be following up with my pcp tomorrow.

I wonder if it's overactive thyroid. I have many of the symptoms.

Could pred taper 60-40 cause this?

Apple cider vinegar cause this? I'm taking that to keep blood sugars lower.