Me too - New GPA diagnosis. High Anca titer

[Middlesista]

I sent again - I did not send correctly first time. Hopefully this time I did it correctly.

[Gab122]

Got on the scale today. Up 5 lbs since Wednesday?!?! My face is also starting to show that full "moon" look. Guess prednisone gain has started.


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[Gab122]

Hi! I am a newly diagnosed "Weggie" and am still in the early stages of investigation. I had my first appointment with 'my' Rheumatologist a couple of weeks ago and am now anxiously awaiting the results of blood tests which will determine my particular course of therapy. I was happy to stumble upon this forum as I no longer feel alone.


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Hi wendy!
Sorry you are facing this disease but I'm glad you found us! I'm new too! Only diagnosed a few weeks ago.
This is s great place to bring all your questions - many much more experienced members here are extremely helpful!
You are most definitely not alone!
(((Hugs)))
Gab


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[Gab122]

Hi Middlesista,

I did get your message!

Thank you for the info!!

Gab


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[Hope003]

Hiya Gab!

I just read your story and I'm sorry for all you're going through and have gone through. I'm glad you have a diagnosis and that the Rituxan is working for you. I see you are on Pred too. Hey, I've been to Mass General too, for my heart. I didn't know they had Wegs specialist there! Good to know. I hope and pray you continue to feel better with the medications. Thank you again for all your encouraging words! You're a blessing to me!

[Gab122]

Hi Hope! Thank you for your kind words in this post and in your own post you are a blessing to me too! So glad we can all support each other!

Does it seem like only nice smart helpful people get GPA?! It doesn't seem like a true sampling of society - I haven't come across anyone except to find out they were brilliant encouraging and genuinely kind-hearted .

[Gab122]

Hi everyone,

I had another Dr. Appt today. I went to mass genl (MGH) Allergy/ asthma near Boston. My RA sent me. My goal was to get tested for food allergies so I could avoid foods that caused any additional inflammation.

What I discovered tho is that when B cells get wiped out with ritux, the allergy memory gets wiped out for the most part too, so testing isn't very helpful.

But it turned out to be a helpful appointment anyway!

First, this allergy asthma dr was very knowledgable about GPA and its treatment! I didn't expect that from this specialty.

Long story short, my pulmonary function test today shows very little asthma or inflammation tho she can hear the mucus in my lungs. I'd been using my albuterol inhaler because of the coughing and the mucus. Turns out it's not really helping me. She believes the high dose of pred has brought down any inflammation I had in my lungs. She wants to rule out allergic reaction causing the sinus/lung mucus so I'm starting on Zyrtec.

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?

I have my 2nd Rituxan infusion Thursday and I now have a MGH pulmonary appt on Friday.

My 02 level was 97% at today's appt. so that's up.

I cough almost constantly though and still bring up mucus. Do you think that is GPA or perhaps allergies. I was never one to cough this much though before GPA except with an occasional head chest/cold. It's August tho. Not really allergy time yet ?? Could GPA suddenly make me more allergic to my environment?

I guess I'm doubtful that my sinus drainage and chest mucus is allergies. But taking the allergy meds will help us rule that out (or possibly stop the drainage and mucus and cough). Doesn't hurt to try.

I'm hoping that the pulmonary appt on Friday brings useful info too.

Prayers for a good infusion Thursday are welcomed! 10 am Boston time is when the magic starts. Mom brought me last time (my first time) but the clinic didn't think I'd need a ride this time. Do you all agree? I probably could have driven myself last time in fact. Tho I was pretty pumped up on pred.

Take care,
Gab

[drz]

Wegs usually causes damage to the sinuses which often results in excess mucous dripping down the back of the throat. This post nasal drip often causes coughing and can irritate the vocal cords and also build up to cause bronchitis. A generic Muccinex to help thin the mucous can help some as does frequent rinsing of sinuses. It helps also to stay well hydrated by drinking lots of liquids.

[Gab122]

Thank you Drz!
You must have been a fly on the wall as today's doc did recommend all 3 of those options as well! (Mucinex, sinus rinsing and staying hydrated!) Good confirmation!
Looking forward to the dripping stopping soon hopefully, if it is wegs related!

[Gab122]

Forgot to mention in my update...
My hand muscles have been sort of tightening occasionally lately and today my hand sort of locked for a moment in a contracted position (claw like) I pushed it open with my other hand and felt the muscles relax. It lasted all of 2 seconds. Is that from the prednisone? I've felt the muscles twinge (sort of) before, but this was the most dramatic.