Me too - New GPA diagnosis. High Anca titer

[Gab122]

Hi everyone,
Here's my quick story.
In May 2016 I started having ear problems... Saw pcp, then ENT - no one could figure out what was causing so much fluid and pain. They tried antibiotics, yeast meds, ear tubes, even prednisone (which helped a bit) / 3 months later blood tests showed high inflammation. Further blood tests tested positive for ANCA.
A week ago, on Aug 1 I saw Mass General rheumatology dr's - leading experts an hour from my home! Thk you God!
They started me on 60 mg prednisone that day. ran ct scans, more blood and urine tests. My kidneys are not affected or damaged. But I have 5 granulomas in my lungs. and by Friday Aug 5 I was having a lung biopsy. my Anca titer came in over 1100! (Also 1:80) they told me I have extremely active disease but I'm limited GPA and an early diagnosis. Yesterday Monday Aug 8 I had my first Rituxan infusion. All within 1 week of diagnosis. I've lost some hearing and have some breathing problems, and am short of breath/ tired/ sweaty just folding laundry.
Anyone else have high Anca Titers like that. They said over 20 is positive for active disease. I have over 1100! I feel like I'm in excellent medical hands though and so happy to have a diagnosis that is treatable. Im glad I wasn't born 50 years earlier. Crazy different outcomes back then!
My faith and family are great support... Anxiety meds helping too. :) Rituxan infusion went well. Next one is Aug 25. MGH (mass genl Hosp) in Boston has been awesome in pushing for my speedy treatment.
Just wanted to reach out and learn more from everyone who's been on this journey for more than a week. I'm happy to answer any questions about my case.
God Bless,
Gab

[mishb]

Hi Gab and welcome to the forum. The best place for you to learn all about your GPA diagnosis.
I'm so sorry that you have to be here but glad you found us.

Sounds like your specialists know exactly what to do.

We don't really like the term limited. GPA is GPA, you either have it or you don't.
They use the term limited if the GPA is limited to just your respiratory system and nothing else, unfortunately it doesn't mean that it is any less of a problem than those with Kidney or Liver, Stomach, Brain etc.

In the search box at the top of the screen you can place a word (ie. rituxan) and you will find all threads that have this word in it.

Welcome again.
Take care of yourself and .........

[Pete]

Hello Gab!!

Your presentation sounds a lot like mine. I had an ear infection that wouldn't respond to the usual treatment. Had the eardrum lanced twice with no good result. Felt like crap. Tired all the time. Lost my appetite (and 25 pounds). After a week in the hospital, I was also diagnosed with "limited Wegener's" affecting my ears and lungs.

Finding a specialist at Cleveland Clinic was a godsend to me. She got me into remission and has kept me there for nearly four years.

I'm fortunate. I'm leading my pre-wegs life in retirement. I do all the things I need to do and almost all of what I want to do.

Hope you're as fortunate as I. Good luck!!

[drz]

This case might interest you:

A YOUNG LADY PRESENTED WITH LIMITED PULMONARY WEGENER'S GRANULOMATOSIS (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3019346/)

Over six years ago I had extremely high ANCA scores according to Mayo clinic. Like way off the charts I guess.

[Middlesista]

Hi Gab! I have also seen docs at MGH - we must not be too far from each other! sounds like you are in good hands. My hearing, vision and lungs are affected First diagnosed in Nov of 2015 but hearing issues started 3 years prior but no diagnosis made at that time. My CANCA and inflammatory markers were up there - progress with Rituxin and Prednisone.

Life goes on, things will improve as everyone has said- make yourself and your health a priority as much as possible.

[Gab122]

Hi middlesista, and everyone who wrote! I'm in southern NH - about an hour north of Boston. My care/treatment decisions are under MGH rheumatology but I've seen Dr. Niles office (MGH nephrology for infusion) and Dr. de Venicia at Mass Eye Ear too. My symptoms are experienced in tight breathing/cough, ear pain, fullness and hearing loss, sinus drainage, and easily breathless with minimal exertion. I also sweat extra/easily... Is that GPA, or maybe because I'm perimenopausal?
Have most of you experienced some improvements within a couple weeks of treatment with pred and ritux? I'm hoping. Dr. Niles thought my hearing would take longer to return/respond than my lungs. Any info is appreciated. What dosage of pred did you start on? I'm on 60 but wondering if higher would be more helpful.
Thx
Gabrielle

[Gab122]

Hi Pete, I've read some helpful info on the Cleveland clinic website, figured they must be leaders in this "industry". How quickly after treatment did you feel better? Were you on pred and ritux? How much pred? I'm on 60 daily and wondering if more would help me feel better. I almost was in the clinical study (shorter pred / more ritux) but because ER had started me on pred before I started with MGH (back to back dosages) I didn't qualify.
I'm so happy to hear you feel pre-weg mostly! I hope for that. I have a 12 year old that needs more than I currently have to give. My hub and daughter (and extended fam) have been great but I want to contribute more than I am.
How quickly did meds get you back to normal? Also how often do you have blood work to watch the disease activity?
Thx
Gabrielle (so NH)

[Dirty Don]

Gabrielle, don't be in a hurry for a quick fix. This process takes time & patience. Most of us, including most docs, work on a time line of about 5-6 weeks for the drugs of use to take full effects. Your pred will reduce and so will the effects of it. Your strength will return slowly...exercise such as what Pete recommends works well...just gotta do it. This disease does NOT go away...but it can be dealt with effectively returning our bodies to pre-WG status, mostly! Best to you.

[renidrag]

Welcome Gab, I'm from South of Boston but have Doctors at Boston Medical Center / BU. I was diagnosed in 09 and treated aggressively with Cytoxin back then for nine months and was declared in remission on June 30, 2010 by Dr. Stone at MGH. I remain there with only a little scare flare in 2014. Dr. Stone I have been told has gone full time into research. Hang in there, life will get better. Its getting to the point now where we have enough Weggies in New England to have a convention. Maybe someday. Best to you,
Dale

[Gab122]

Hi Don,
I'll try to be patient.
Btw- you said "exercise such as what Pete recommends works well...just gotta do it.". I reread Petes post and he didn't mention exercise. Shd I be exercising? I thought working out would be more draining than helpful. Maybe you meant an 'exercise' in patience? Gab

[drz]

Hi Don,
I'll try to be patient.
Btw- you said "exercise such as what Pete recommends works well...just gotta do it.". I reread Petes post and he didn't mention exercise. Shd I be exercising? I thought working out would be more draining than helpful. Maybe you meant an 'exercise' in patience? Gab

Depends upon how ill you are now. Some times getting out of bed is more exercise than we can handle. Ask your physicians what you can do safely and what you should be doing? Try to preserve what ever function you can as it aids in your recovery.

[Middlesista]

Gab - I am north of Boston on the coast and have family in southern NH.

I started with IV Solumedrol and went to 80mg Prednisone along with 4 Rituxin Treatments. Titrated down to 5 mg Prednisone slowly over about 8 months but am at 10mg now since CRP started to creep up, also on Methotrexate 15mg weekly. My PR3 and CANCA have been negative since about February and I so hope they stay negative and my CRP creeps back down,

I had some complications due to a mishap during a lung biopsy so was on home O2 for awhile but fought back and was able to return to work ( on a reduced schedule) within 3 months. I did walk my treadmill to build up my endurance slowly and that was a good plan since walking outdoors in the winter did not make sense - hard to lug the oxygen at that point. I started to feel better other than fatigue within a month of completing Rituxin doses but like I mentioned most of my issues were related to lung mishap and everyone is different and some folks feel better sooner. I do tire more easily still and have various aches and pains (but had those for years and relate to wear and tear on the body over the years) but otherwise back to working full time and just keep on keeping on as much as I can. I try to be vigilant with waching symptoms and keep in touch with my docs. Think a lot of issues can be related to medications for me - necessary at this point but would so love to be off some of them - esp prednisone.

The lesions in my lungs started to improve after the first 2 Rituxin treatments, my vision also improved quickly. Hearing did not since it had been 3 years, if they caught it earlier the outcome might have been different - hopefully you have reason to be optimistic with your hearing since you started treatment so quickly

The optholmologist I saw at MEEI was not very helpful and actually knew little about GPA - I understood I would be seeing someone who was well versed and will not go back to him. The RA I saw at MGH was great and confirmed that the care I am receiving is on target. I will continua to follow up with him along with my RA who helped make my diagnosis. I had also gone to MEEI when I lost my hearing 3 years ago for a second opinion and mentioned that all my inflammatory markers were up and he never made a connection with GPA or suggested testing with a CANCA

I had so many of the same questions that you have when this all started and the folks on the forum have been so helpful, kind and supportive - it stinks to have this disease but is comforting to know you are truly not in it alone. Best wishes and take care

[Dirty Don]

LOL...sorry Gab...my bad...Pete has a thread on exercise & I had just read it again. But, mild exercise such as walking, stretching, swimming, & low impact stuff will help your condition & attitude. Makes one feel better & feel useful too. Once the effects such as lethargy, pain, etc. start to go away, exercise becomes more palatable...you'll get there..honest! Take care & keep at it!

[annekat]

Welcome, Gab! Everyone has pretty much said it all, but just wanted to add that I'm another one who started with a giant, antibiotic-resistant ear infection and was ultimately, after 2.5 years, diagnosed with W in my sinuses and lungs. You are very lucky to get such an early dx and treatment, and to live in an area with such good doctors. I did lose most of my hearing; one ear got better but still needs a hearing aid. The other got even better and then went downhill due to a recurring infection and erosion of the ear drum and tiny bones behind it, and now can't even hear well enough to use the aid that once worked fine for it. But with your early dx, it is much more likely that your hearing will return. My lungs did clear up pretty fast with treatment, though there is still some scarring and reduced lung capacity. The bony structures of my sinuses and nasal cavity have been largely eroded away, and the worst result from this is a collapsed nasal bridge (saddle nose), which my glasses hide pretty well. My vision and sense have balance have been affected by all this, too, but I'm still in much better shape than some people. Again, your relatively early dx and treatment by great specialists will likely mean you can avoid most of the permanent damage that I've sustained. Best wishes, and keep us posted!

[Gab122]

Thank you Drz - Can you tell me how your scores responded to treatment? Can you tell me more about your GPA journey and how you are now? Did you find that the high anca scores played a role in your treatment in anyway? Thanks Gab

[Gab122]

Thank you AnneKat! It is really helpful to me to hear other's stories like you shared in yours! Thank you!!!! It's like I want to hear more so I can get a glimpse at what the 'typical' scenario might be (if there is one)... esp for people similar to me. thanks!

[Gab122]

Middlesista, Thank you for sharing your journey, It really is helpful to me! I'm sorry you went to MEEI and mentioned your inflammation markers 3 years ago and no one did anything! That's crazy! :( The Dr. I saw at MEEI was deVenicia - he seemed to know a lot about GPA. He is an Ear doc though.. Not eye dr. so I'm guessing it's not the same guy you saw. He does think my hearing will come back but I've heard from a few drs that it will probably be last to be restored. I can still hear - lost about 30% though.
Great news about your PR3 and C-anca scores! Hopefully CRP comes down too! So were you diagnosed with GPA 8 months ago? I was trying to figure it out from your post. I wish you the best and a full recovery someday! :)

[drz]

Thank you Drz - Can you tell me how your scores responded to treatment? Can you tell me more about your GPA journey and how you are now? Did you find that the high anca scores played a role in your treatment in anyway? Thanks Gab

My ANCa scores are generally in negative range when I am considered in good drug induced remission. Some times they increase to mild or borderline range when my residual symptoms like joint pain, nasal bleeding are present. This usually happens when I have infected sinuses or bronchitis or other infections.

I have several threads that tell about my history with Wegs that you can find with a search.

[annekat]

Thank you AnneKat! It is really helpful to me to hear other's stories like you shared in yours! Thank you!!!! It's like I want to hear more so I can get a glimpse at what the 'typical' scenario might be (if there is one)... esp for people similar to me. thanks! Also, forgot to tell you, my ANCA titer was really low, so low that my doc dismissed the possibility of my having WG/GPA, obviously not a specialist, since it's a known fact that ANCA is not a reliable indicator and some of us actually test negative for it. But your number was really high! Just another example of how every case is a little different.

[Alysia]

Welcome to the family, Gabrielle.

It sounds like you are in good hands and getting the right and best treatment possible. For some of us rtx works fast. For others it takes more time. But it works great anyway. 60mg pred sounds enough unless you are a very big lady.

Sweats can be wg symptom. C-anca of 1100 is indeed the highest I ever heard about.

Hang in there. The beginning is tough. It should get better. Sending prayers.........

[Gab122]

Thk you alysia, I appreciate your prayers! 🙏🏼 feeling a bit down about dx of GPA - reality sinking in. Questions and uncertainty arising. I follow up at MGH (mass gen'l) rheum on wed.

[im so blessed]

Hi Gabrielle, I keep coming across ur post, and i just wanted to say hi and hang in there. I am 32, and was dxed at age 16. I have 2 children ages 10 and 6. They are my inspiration as is my wonderful husband. But having a disease like this can feel sometimes just too much when i think about what it mite do to my kids when im not here anymore. I use to pray that i just stay here long enough that they will remember me. Then when i past that i changed it to-just til they are old enough to handle it...i dont know if that time ever comes, but you know what-i dont worry about it as much anymore. I just try to make the time we have together count...after all who knows, maybe we will be here longer than we think! Im glad you have good docs! If you have any questions im here. Ive loved having this forum to come to. I didnt find it until i had wegeners 13 years already...its been so great hearing others victories, and there are some great encouragers on here !

[Gab122]

Thank you ImSoBlessed! I love your forum name :) I'm really trying to hang onto my Faith and trust in God's love and Perfect plan for me (and His perfect plan my hubby and daughter) you have had this disease a long time! Are you generally in remission? When you are in remission do you almost feel normal? Well normal for a busy wife /mom. 😊 I felt better yesterday than today. Today my breathing was never free and easy. I have 3 granulomas (3+cm sizes) and 2 nodules in my lungs. Hopefully already starting to shrink. My ears (the first symptoms I had) no longer are painful. Just feels like they are inflamed and stuffed up. And I have runny nose/sore throat. So my breathing is the thing that bothers me the most now. I'm puffy from the prednisone but amazingly not crazy moody this last week even tho I'm at 60 mg. right now. My nearsighted eyesight isn't what it was a couple months ago but not enough to change glasses Rx yet. I guess I'm both thankful to finally get a diagnosis and the reality of this is starting to sink in now too. :(
What I know to be most true tho is God is Love.
Thx again for reaching out to me.
Gab

[im so blessed]

Hi Gab, I feel like i am very blessed...my gpa was very bad and life threatening in the beginning. I had kidney involvement plus the sinus and ALOT of joint pain. But after my initial treatment of cytoxen and 60 of pred for several months, I have never had it as serious.When im in remission, yes, i feel i live mostly normal...more fatigued than my friends, but im able to keep up mostly. I would say at that point it depends how much pred u have to take(i have been off between flares) because the side effects of that med can make life feel not normal. I was so young when i was dxed and very nieve. I dont remember being scared, because i had no idea what we were actually dealing with. I think it was another blessing for me to be so young...its just part of me now and i didnt have to readjust my adult life to handle gpa. It sounds like you have a Rock to hold on to...and i believe you will be just fine too. When you feel you cannot take one more day, just look back to the time when you got dxed, and all you have gotten thru since, you will realize then you can make it another day. I love chatting with you. Praying for you too, God will give you peace.

[Gab122]

Not sure if I told you all, the lung biopsy was positive for GPA. No surprise there based on all othe symptoms and tests... But I guess it's 100% dx (rather than 99.9).

[MikeG-2012]

I guess I'm both thankful to finally get a diagnosis and the reality of this is starting to sink in now too. :(

I believe that most of us said what you just did at one point or another--especially those of us who went for months/years without a diagnosis!

[Middlesista]

Gab - diagnosed in November 2015 but as I mentioned this probably began 3 years ago with hearing loss and vision loss occurred in October of last year.

I read you are going to MGH on Wednesday (tomorrow) - I am heading in to MGH today - we miss each other by one day! I hope all is going as well as it can be - take care.

[Gab122]

We Shd plan infusions together if the time tables coordinate. I'm thinking of asking to get infused with a bit of sweet, sexy and smart... Along with my retux when I go back for 2nd inf on 8/25. LOL. Wouldn't that be nice?! I am getting it done at MGH dr. Niles office even tho I'm an MGH rheumatology pt. technically. That's who had space for me to get in right away last time. It's nice there- spa like - what's the infusion center like at MGH rheum?

[MikeG-2012]

I'm thinking of asking to get infused with a bit of sweet, sexy and smart... Along with my retux when I go back for 2nd inf on 8/25. LOL. Wouldn't that be nice?!

I tried that already, that is one of the listed side-effects of RTX--you know the treatment consent for you sign. (-8 --"...no other add-ons, neither expressed or implied..." I was going for smart, funny and healthy, but alas...

Thanks for the smile today Gab! I needed that!

[Middlesista]

Gabrielle - my main RA is out of Lahey so had infusions out of there. I see RA from MGH as second opinion and because MGH is listed as vasculitis speciality center. I want to make sure both RAs are on "same page" as far as rx. Lahey was were I was diagnosed

Right Mike - hope for side effect from RTX for all = HEALTHY!!!

[Gab122]

@mike - glad I could help! 😊
@ Michelle - do you find lahey and MGH generally agree on treatment plans? I found out at my first infusion that MGH nephrology does "2nd round" 4 months after first and that MGH rheum does "2nd round" 6 months after first. Gonna discuss that at appt tomorrow. Find out pros and cons.
What do most dr's recommend for "2nd Round" of infusions? Then I heard there are the 4 infusions one week apart plans...
I want to be somewhat aggressive in knocking this disease down....

[Gab122]

Today's appts:

I had Excellent appts today. I'm feeling happy, peaceful and like I am in very safe hands.

Mass Eye & Ear (MEEI) Appt.:
~ Otologist: Ear drum, canals, ear inflammation, fluid and hearing are all much improved. There is NO organ damage to my ears. I'm following up with them/plus hearing test in 3 months.

Mass Genl (MGH) Rheumatology appt.:
~ Rheum dr said Rituxan is VERY safe AND effective in knocking down GPA disease's activity. Said I shd live a long relatively normal life with this chronic condition. GPA would not be my demise. I asked if I had another 50 years and he asked how old my grandparents were when they passed 👍 (Nana was 99!)

But he is ALSO erring on safe side by having me seen by mass eye & ear (MEEI) Eye dr to assess eyes (some degradation in sight noticed when I went back to work this week and couldn't see as well as I could when there last -a month ago. And sending me to pulmonary dr to assess status of my lung granulomas/lung function, And to urology (weird but true) to assess "fatty mass" found on my kidney during CT scan. ~ Just to determine for sure that it's harmless (note: Kidneys are fully functioning - they do not have any GPA disease effects) And Rheum Dr wants to see me back again in 2-3 weeks to plan subsequent Ritux (either 4 mos or 6 mos from next infusion on Aug 25) and see how I'm doing on high meds ~ and follow up on lungs - I was at 94% O2 today and still have cough with some mucous.

So, I have many more appointments coming up than I anticipated but these appts are more to have baseline readings done and be cautionary than anything else. (I told them I want to be aggressive in my treatment and safety. )

I need to wash hands, and avoid very sick people if possible (esp these next 6 months while I have both Ritux suppression and high prednisone meds- they anticipate I will taper prednisone to a low dose after that.) I also need to report any illness/ symptoms/ or fever of 100.4 or more. Makes me feel a bit like a prima-donna or diva. 😏 But I really like how they are handling treatment and medical care.

All in all I feel like I'm being well cared for 😊👍🏼. I saw Dr Keller and Dr Choi at MGH. And Dr. deVenecia at MEEI. And last week at my MGH infusion appt (nephrology ctr) I saw Dr. Cortazar. All excellent dr's.

Edit: forgot to add they are keeping me at 60 mg pred til my next rheum appt in 2-3 weeks. Their scale said I lost 6 lbs since August 1. Mine is down 3-4 lbs. I'm trying to eat cleaner (less processed food) but am still getting munchies and eating in the middle of most nights even! I have some facial, belly and ankle water retention. I'm about 65-70 lbs over weight but they said they base pred on ideal weight. Not actual weight. Anyone else on 60 mgs of pred longer than a month? it'll be 5-6 weeks of 60 before they reevaluate level. My mood is pretty good despite the pred.
Also I have not had any joint pain since my hip pain that day. 👍

[MikeG-2012]

Today's appts: I had Excellent appts today. I'm feeling happy, peaceful and like I am in very safe hands.

That's very, very good to hear!! Glad you are on a good path and feel like you have a good team on your side. I believe that is the most important part of your health--comfortable with your health care providers.


Anyone else on 60 mgs of pred longer than a month? it'll be 5-6 weeks of 60 before they reevaluate level. My mood is pretty good despite the pred.
Also I have not had any joint pain since my hip pain that day. 

I was on a HUGE dose of pred back in 2013. 80mg for 6 weeks, 70, for 6 weeks...basically a 6-8 month journey to 10mg. That whole thing sucked, but in hindsight, it probably saved my lungs from further damage. During that awful time, I gained about 70 pounds. While on pred, I have ZERO self control over food intake. I feel like a starved wild animal when on any dose of pred, and those high doses were murder. I've managed to take off about 60 again, but that has been super slow going.

I wish you well. Eating healthy is really cool, and I am glad that you've been able to control the beast we love to hate--Prednisone!

Have a marvelous day!!

[Gab122]

Thx Mike! Don't credit me with too much self-control tho! 😏 I'm somewhat wondering if the weight loss is due more to GPA disease activity or sometimes my stomach feels "off" (meds?) and honestly if I fill up too much I have less room for breathing. But almost every night lately, I wake up and eat around 2-3 am. ??? I am trying to make some good choices but I'm not overcome with munchies constantly for some reason (thank you God) I almost think the munchies were stronger while on the 10 day pred taper prior to my dx of GPA. We'll see what happens. 😊

[Middlesista]

Gabrielle - Sounds like you are having all your bases covered! I was also on high doses of Prednisone for a while starting at 80mg after the 1000 mg IV doses I had while in hospital

please be sure to ask your RA to send you to an eye doc at MEEI that is familiar with GPA - as I mentioned I thought I was seeing someone that was well versed in GPA but he was not.

[Gab122]

Wow you guys have been on super high pred!

Middlesista, My MEEI otologist dr recommended an MEEI opthamologist (dr. Matthew Gardiner) - in fact my Oto dr goes to dr gardiner for eye exams.

I asked my RA to refer me to Gardiner or better - someone with GPA experience - looks like she picked Gardiner. Do you have feedback on him? Can you tell me who wasn't a knowledgable GPA opthamologist at MEEI?

Someone scheduled me with Dr. Gardiner for the end of Jan! That's longer than I want to wait so I'm going to call tomorrow and see who's available earlier.

If you have a good GPA opthamologist dr in mind please share the name. 😊

Thx
Gab

[Gab122]

Hi middlesista, I found out that most autoimmune patients see MEEI eye dr's that specialize in immunology - there are 4 of these dr's. Dr. Dana, Dr. Papaliodis, Dr. Sobrin and Dr Young - any info you can share is appreciated.
Thx Gab

[Middlesista]

Hi Gab - check messages. ☺️

[DWendy]

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.


Sent from my iPad using Tapatalk

[Gab122]

Hi Gab - check messages. [emoji5]

Hi Middlesista,
I didn't see any messages on the mobile version of the website so I downloaded the tapatalk app and only see my welcome to the forum message from Andrew. Can you tell me where to look for private messages?
Thx!
Gab


Sent from my iPhone using Tapatalk

[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. [emoji13]


Sent from my iPhone using Tapatalk

[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.


Sent from my iPad using Tapatalk

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


Sent from my iPhone using Tapatalk

[Gab122]

Hi Middlesista,

I did get your message!

Thank you for the info!!

Gab


Sent from my iPhone using Tapatalk

[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 [emoji4] 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 . [emoji57]

[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. [emoji1360]

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 [emoji1374] 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.

[im so blessed]

Hi Gab, about that 2nd rituxan infusion..I just had my 2nd on friday and guess what ! I felt amazing for 2 whole days !!! So i would say driving seems reasonable. How far do you have? I had 2 hours drive but my husband was with me. But we actually went shopping right after for about an hour. I am battling the fatigue again, now that the sulumedrol wore off. I still feel much better than my first infusion tho. Hope this helps-i know our bodies all respond differently...

[renidrag]

It is very common to have muscle cramping while on Pred.
Dale

[Pete]

I also had hand cramps while on higher doses of pred. I boosted my potassium intake with a daily banana (still do this), a 100 mg potassium supplement (no longer taking since pred is at 5 mg/day), and tonic water as needed. The quinine in tonic water is a natural anti-inflammatory. My rheumy suggested it. The bad thing about tonic waters are the other ingredients - especially the preservatives and sweeteners.

Since I started eating cleaner, I've had no problems with cramping unless I get too dehydrated.

[drz]

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.

I had that but attributed it to my Dupytrens contractures. I had the cords cut at Mayo before the Wegs but symptoms came back some after Weg treatment. The cramps might relate to pred meds or others I guess since cramps were real common a while back but not so much now.

[Middlesista]

Gabrielle - I was pretty tired after Rituxin from the Benadryl so had someone drive me home but everyone is different in how they respond and how long the infusion takes. The Benadryl might wear off by the time tHe infusion is completed for some . Be sure to hydrate so they can find a vein quickly!

Have also had the hand cramping but had this before GPA even diagnosed and thought it was related to arthritis or some such thing since both my Mom and one of my sisters had the same issue and it usually happened if using hands too much like when mixing dough for cookies or chopping vegetables. Good arguement for not cooking or baking and going out to eat. ☺️

[annekat]

Gabrielle - I was pretty tired after Rituxin from the Benadryl so had someone drive me home but everyone is different in how they respond and how long the infusion takes. The Benadryl might wear off by the time tHe infusion is completed for some . Be sure to hydrate so they can find a vein quickly!

Have also had the hand cramping but had this before GPA even diagnosed and thought it was related to arthritis or some such thing since both my Mom and one of my sisters had the same issue and it usually happened if using hands too much like when mixing dough for cookies or chopping vegetables. Good arguement for not cooking or baking and going out to eat. ☺️
I started getting the hand cramping before dx, too, and have talked to non-weggies who've gotten it around middle age, too. But I think you are younger, so it might be the wegs or the pred. Since dx, I also get cramping in my feet and calves, and have found that taking at least 500mg of magnesium a day helps, in addition to getting enough potassium, as Pete mentioned. I haven't tried the quinine water. Also running hot water over them or soaking in it can help, as can massage.

Sent from my MotoE2(4G-LTE) using Tapatalk

[Gab122]

Thank you all! I will make sure I take my calc/ Vit d, mag supplement. (I had forgotten it a couple days. tho otherwise have remembered) I Will have a daily banana too for potassium and try tonic water if needed. Plus stay more hydrated! All great suggestions thx!

Anne, I'm 49 (50 in Jan! [emoji15]) so am definitely middle age but thx for thinking me younger. [emoji8]

Have a great day everyone. I'll report back after my infusion today.

Gab

[annekat]

BTW, our daily potassium need is something like 4500mg, so a banana and a 100mg pill won't add a lot, but they can't hurt. You probably get most of what you need from other foods you eat, and there are lists of these on the web, with how much potassium they contain, so you can check and make sure.

Sent from my MotoE2(4G-LTE) using Tapatalk

[Gab122]

Thx for info! I'll definitely check with Dr. today about taking a potassium supplement.

I'm here now, all hooked up getting my infusion. And they serve food here. Today's offering incl strawberry shortcake. I feel spoiled. Going well so far!

[annekat]

Thx for info! I'll definitely check with Dr. today about taking a potassium supplement.

I've heard and read that the potassium pills in excess of 100mg. are hard on your stomach or otherwise not good. So better to get it from food. Perhaps your doc can confirm that. I'm glad the infusion is going well. You look happy!

[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.com/forum/random-off-topic-discussion/4238-pberggren-memorial-thread-15.html

[Gab122]

Hi All!

Infusion went great - feeling good - home again. [emoji1360] 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. [emoji177][emoji1374][emoji4]. 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 [emoji4]

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. [emoji4]

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 [emoji592]... 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. [emoji847] 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!
[emoji4]
Gabrielle

[Gab122]

Friday's chest ct showed granulomas significantly smaller. [emoji106][emoji106][emoji106][emoji106]

[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. [emoji106][emoji106][emoji106][emoji106]


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.

[Gab122]

So my heart rate got up to 139 last night with Blood pressure at 159/98. I called my pcp and spoke with a nurse. She thought I Shd go back to ER or call MGH RA.

I spoke to MGH. They said all my symptoms can be explained by high pred. He said anxiety, increased heart rate etc is extremely common on high pred. My BP did drop to 139/83 soon after I sat down. By 11 pm it was 111/84. With 87 heart rate - I am skipping all caffeine today and my BP this morning was 120/84. My HR is in the 90s. Fasting Blood sugar 88/ and after bfast 112. So despite all of that being fine I feel a bit shaky and light headed. I guess that's the prednisone?

I do have follow up to ER visit with my pcp today.

MGH RA doc thought I Shd have an anxiety med on hand like Xanax. Do any of you use that? I'm a bit hesitant. I've been pretty calm since my 8/1/16 GPA diagnosis despite all the craziness. Could I suddenly become anxious due to pred 6 weeks in?
Gab

[Dirty Don]

I carry Xanax with me at all times...and I take Lexapro daily. Neither interfered with my other meds. Pred can escalate a tendency to anxiety, but doesn't cause it. If you're gonna be 'anxious', it will happen & one can't control it until diagnosed. Relaxxxxxxxx!

[Gab122]

Thx Don!
But easy said than done.
[emoji57] I will try tho.

[DWendy]

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. [emoji13]


Sent from my iPhone using Tapatalk

As long as the prednisone is doing it's job then I guess the full moon face and weight gain are a small price to pay. I will keep my fingers crossed for you.


Sent from my iPad using Tapatalk

[blm]

Probably just water weight. Mine has been fluctuating some too. Goes up, then down, then up then down. Just like our new lives.
Hang in there!

[Gab122]

Thanks blm and wendy!

[Alysia]

maybe I am writing too late... only now back on the forum. I think that the drop from 60 to 40 mg of pred was too big. you needed to do it in smaller steps. it explain the shaky feeling. at least for me.
as for psych meds, I suggest to be careful. some have long term bad side effects. better to go to psychotherapy, to pray, to try relaxations methods, to listen to music, to drink camomile tea and to come to the forum :)

[annekat]

maybe I am writing too late... only now back on the forum. I think that the drop from 60 to 40 mg of pred was too big. you needed to do it in smaller steps. it explain the shaky feeling. at least for me.
as for psych meds, I suggest to be careful. some have long term bad side effects. better to go to psychotherapy, to pray, to try relaxations methods, to listen to music, to drink camomile tea and to come to the forum :) I agree, no reason not to go a little slower on the pred drop. Can't say for sure what is causing your specific issues, but at your stage, being conservative about changes is a good approach, I think.

[Gab122]

Thanks Alysia and Anne!

I'm inclined to agree that it was too big a jump - but I've made the jump for a week now and don't want to go back up.... I will ask to have a smaller taper down next time. The shaky feeling has lessened a bit so i'm hoping it will continue to lessen. I'm not sure if it's the prednisone or the tapering down of the prednisone (or the fact that I did it on the weekend of 9/11, that date always makes me a bit anxious) but I did get very anxious right then and I did start to feel shaky right then. In anycase a smaller taper would probably be better.

to update you all....
I went to have the mass on my kidney evaluated further this week and because they can not clearly see where the mass is growing out of/ the point where it is attached to, I have to have a kidney biopsy which I've scheduled for this coming Wednesday. They still think it is a benign angiomyolipoma (AML) (which was just incidentally found when they were checking my kidney's for GPA) but because they are not 100% sure, we have to do a biopsy. It's a large mass (7cm x 5cm x 4.7cm) and it's sort of located in the middle of my kidney which is a bit of an unusual location for an AML. If it is an AML, they will probably do an embolization of it because of it's size. Which would be another procedure. **Sigh** But that would be a good problem compared to the other option of it not being a benign AML. It's all perspective right!

For those of you who had kidney biopsy's what was the recovery like the next day?

Have any of you had an Angiomyolipoma or had an embolization?

Would love any info...
thanks
Gab

[Aneinu]

all caught up here now.
Hope it goes well with the kidney.

We are praying for you and all.

[Alysia]

Sending prayers for an easy procedure, speedy recovery & best results.

[LisaD1]

kidney biopsy was a piece of cake for me. Just some normal bleeding in urine for less than 24 hours but no tiredness or anything. mine done by cat scan imaging without any meds at all. You could feel a punch like pressure but didn't hurt.

[Gab122]

Thx Aneinu!
Biopsy went great. Hopefully will find out results next week.
Feeling peaceful :)

[annekat]

Glad it went well. Hope the results are good. Re: the pred taper, most likely you will be asked to go from 40 to 30mg. That is only a 25% drop, where going from 60 to 40mg. was a 33% drop, which I'm sure you handled just fine despite what we said. I've never heard of anyone with Wegs going from 40 to 20mg. I could be wrong. But that would be a 50% drop. Generally, the lower you go, the less percentage the drop should be. From 30 to 20mg. would once again be a 33% drop. so maybe they would have you go from 30 to 25mg., which would be a 17% drop. then from 25 to 20mg. would be a 20% drop, so I'm not sure what would happen then. I think I am being way too analytical about this! I don't even remember how it all went with me. I just know that after 20mg. you have to really slow down and be careful, and even more so after 10mg. I am not a doctor, and I would encourage you to trust what your doctors say, though this might give you a little backup if you really think they are trying to make you go too fast. I'm not sure if Weggies are a little more sensitive to pred drops than anyone else, or if so, whether docs know it. A lot depends on how long you have been on it and whether your adrenal function has shut down and might have trouble starting up again. There are tests for adrenal function, though I don't think many of us have gotten them. Good luck!

[Gab122]

@annekat Wow! Thank you for all that good info Anne! I appreciate it! I feel more prepared now when next taper happens. [emoji106] Gab

[Gab122]

So I got great news yesterday - my kidney biopsy shows the mass is a benign angiomyolipoma. Just as the dr had predicted all along. The next step is an embolization but he thinks the chance of it bleeding or causing any concerns in the next year is in the "single digit range" - still I know that I want to get rid of it because if it did bleed it could be a life-threatening situation. It's 7 cm x 5 cm x 4.7 cm size and the protocol is to remove or embolize anything above 3 cm in size. He said it can't be surgicially removed because it is right in the center of my kidney and I'd likely lose the whole kidney if they tried surgery. But I have concerns about embolization too since that means going at it through my blood vessels and I know vasculitis can make blood vessels inflamed and more fragile. So my next step is to meet w/ the interventional radiation doc to get more info about embolization of a vasculitis patient.

The other good news is that my chest Ct scan came back looking great according to the pulmonary dr. What I don't understand though is why I still feel shortness of breath. I'm wondering if it could be airway stenosis. My voice is slightly off. I understand shortness of breath could be from the prednisone too. But the dr didn't think the shortness of breath was from the granulomas themselves as they have continued to considerably shrink. She said there are only 2 visible on the Ct scan now. My oxygen was 92-95 during the kidney biopsy last week. So I'm glad my ct scan looks great but i'd love to not feel short of breath. Exertion makes it worse.

Also - The reality of this disease has set in as the 'novelty' of having a rare disease has worn off. It's been bringing me down the last few days when I think about all the organ systems that are involved or could become involved. All the things I have to learn about and make complicated decisions about and feel poorly from... breathing issues, eye site decline, and the last week my hearing is a bit off again with a strange sensation in my ears. It may be that I'm fighting a cold, or could it be that my prednisone taper has set it off. I'm hungry all the time, eating a lot, gaining weight and feeling sorry for myself. I could go on complaining but I know I'm preaching to the choir. I also know that I have it pretty good compared to many on this forum who suffer from so much more than me. It's can be kind of depressing and anxiety producing to have this disease. I read about all the symptoms you all have and wonder will that happen to me? As pathetic as it sounds, at first there was a bit of excitement and feelings of uniqueness mixed in with the fear... but now I'd just prefer to not have it. Can I take it off now, like a coat? wouldn't that be nice. I'm grieving my pre-weg life.

[Aneinu]

So I got great news yesterday - my kidney biopsy shows the mass is a benign angiomyolipoma. Just as the dr had predicted all along. The next step is an embolization but he thinks the chance of it bleeding or causing any concerns in the next year is in the "single digit range" - still I know that I want to get rid of it because if it did bleed it could be a life-threatening situation. It's 7 cm x 5 cm x 4.7 cm size and the protocol is to remove or embolize anything above 3 cm in size. He said it can't be surgicially removed because it is right in the center of my kidney and I'd likely lose the whole kidney if they tried surgery. But I have concerns about embolization too since that means going at it through my blood vessels and I know vasculitis can make blood vessels inflamed and more fragile. So my next step is to meet w/ the interventional radiation doc to get more info about embolization of a vasculitis patient.

The other good news is that my chest Ct scan came back looking great according to the pulmonary dr. What I don't understand though is why I still feel shortness of breath. I'm wondering if it could be airway stenosis. My voice is slightly off. I understand shortness of breath could be from the prednisone too. But the dr didn't think the shortness of breath was from the granulomas themselves as they have continued to considerably shrink. She said there are only 2 visible on the Ct scan now. My oxygen was 92-95 during the kidney biopsy last week. So I'm glad my ct scan looks great but i'd love to not feel short of breath. Exertion makes it worse.

Also - The reality of this disease has set in as the 'novelty' of having a rare disease has worn off. It's been bringing me down the last few days when I think about all the organ systems that are involved or could become involved. All the things I have to learn about and make complicated decisions about and feel poorly from... breathing issues, eye site decline, and the last week my hearing is a bit off again with a strange sensation in my ears. It may be that I'm fighting a cold, or could it be that my prednisone taper has set it off. I'm hungry all the time, eating a lot, gaining weight and feeling sorry for myself. I could go on complaining but I know I'm preaching to the choir. I also know that I have it pretty good compared to many on this forum who suffer from so much more than me. It's can be kind of depressing and anxiety producing to have this disease. I read about all the symptoms you all have and wonder will that happen to me? As pathetic as it sounds, at first there was a bit of excitement and feelings of uniqueness mixed in with the fear... but now I'd just prefer to not have it. Can I take it off now, like a coat? wouldn't that be nice. I'm grieving my pre-weg life.
Thank you for all that good news.
It should only continue.
Sorry that you're feeling down.
It is well understood.
Stay strong.

Sent from my SM-G920V using Tapatalk

[blm]

Gab122 -

Glad for the good news.

And might I add that I share your feelings about longing for the Pre-WEGs life. I feel very lucky to have been diagnosed early. My symptoms were so light compared with what I see in the forum. I want to know what I'm dealing with, but at the same time I am afraid to think what might happen in the coming years.

Since you and I were diagnosed around the same time I wonder if we are not just processing our grief over our lost health. I just wanted you to know that I hear you. I get it. I hope you continue to get good news. You deserve it.

-Becky

[annekat]

Gab, I think you are still on enough pred that the puffiness is to be expected. You will likely start looking more like yourself at around 15-20mg., though that is just a guess, because everyone is a little different. Hang in there!😊

Sent from my MotoE2(4G-LTE) using Tapatalk

[Gab122]

Gab122 -

Glad for the good news.

And might I add that I share your feelings about longing for the Pre-WEGs life. I feel very lucky to have been diagnosed early. My symptoms were so light compared with what I see in the forum. I want to know what I'm dealing with, but at the same time I am afraid to think what might happen in the coming years.

Since you and I were diagnosed around the same time I wonder if we are not just processing our grief over our lost health. I just wanted you to know that I hear you. I get it. I hope you continue to get good news. You deserve it.

-Becky

Thanks Becky, yes I am sad. It all just sort of hit me this past week. Maybe too busy with the whirlwind of appts before for it to sink in. Sad is the exact right word for how I feel about having this disease. I'm sure it's a stage of grief and I'm sure I'll feel better as I progress on.... I have a few symptoms and I don't know if it's because the pred is lowered or cuz I have a head cold, but my ears feel funny/weird and my nose has never really stopped running but it's running more now and even tho my lungs look good, just walking leaves me short of breath and I wonder if it's actually airway stenosis. My eyesight continues to diminish tho I know that might be the prednisone. My A1c count is up making me pre diabetic (no doubt largely due to prednisone) I have to make decisions about my Angiomyolipoma and the list goes on. It's all just lousy. As you all know. And the reality of it is just sinking in.

Becky we'll be Weg GPA buddies traveling the road with the same start date.... Hugs.

Thank you Anne for your encouraging words, I know it's partly retained water weight in my face esp. But I don't like how I look. It's just a little thing that I Shd not mind. But the little things add up. Makes me want to get off pred quicker but I know that's not a great idea for other reasons. Someday it'll be my old face.... In the mean time I'll try to eat less salt and eat healthier and realize it's a stage. I think I'll get a haircut too. Was thinking of growing it out but I like the first "do" better. That might help me feel better.

Gab

[blm]

I had all of the same symptoms you are describing, funny feeling in ears, short of breath, feeling like I have low blood sugar. When I started tapering the prednisone they were reduced. I don't know if yours is related but it sure seemed like mine was. I am now down from 60 mg to 30 mg for the next few weeks. However, this morning my cheeks looked like apples!! And I have a lumpy neck!

I hope you can find some relief from your symptoms. Wishing you the best as you make your important decisions. I hope you have family to help you weigh all the options. If not, you know that we all will offer opinions - some more informed than others.

It takes time to process all of this. One step at a time. That's all we can handle.

--Becky

[Alysia]

You are beautiful Gab. You too Becky. No matter how your faces look like. Sending prayers & hugs & words of wisdom of my sweet dr. Phil. I hope its clear enough for reading.

2502

[Middlesista]

Gab - your feelings are well justified, you had the rug yanked out from under you and have had to endure testing, procedures, medications and the uncertainty that goes along with GPA. The physical changes effect each of us differently and may not help our sense of self. It su*ks and is our reality. With that said - like many folks here have said things do seem to improve. We learn to adapt, to be vigilant in monitoring our health and making sure our health care team knows their "stuff". Try not to be so hard on yourself Gab - regaining your health is the priority - the weight and the prednisone face will improve.

[Gab122]

Thanks Alysia and middlesista, I rejoined weight watchers today. I'm going to give it a try. Even if it helps me not gain further I suppose that's a victory.

[Gab122]

Feeling strong and confident and peaceful

[emoji4]

http://uploads.tapatalk-cdn.com/20161003/2741d6ce8ec39ca39f9da33718829de2.jpg

[Gab122]

crazy roller coaster week...

Hi all,

Recap: I had Kidney Biopsy on Wed 9/21/16 and Chest CT on Tues 9/27/16 and though I found out the (good) Chest CT results quickly, I had waited a week to find out the biopsy results... it was a very difficult wait by the end of the week but when the results came in they were good news - so that was good.

Then, last Sun, I was finally able to read the chest CT report in my online patient record. It says my Angiomyolipoma has grown since August.
"Incompletely imaged, at least 6.8 x 6.1 cm, hazy fatty lesion, filling and
splaying right renal sinus and displacing right renal vessels has enlarged since
8/2016, at which time it measured approximately 5.7 x 5.7 cm. This mass extends
upward into the right suprarenal space and medially displaces the right adrenal
gland. While this lesion could represent angiomyolipoma, its location and
behavior seems somewhat atypical. Possibility of a retroperitoneal liposarcoma
is raised. Consider diagnostic intervention."
The Pulm dr didn't mention that to me when she called to tell me the lungs looked great.
Also, the Abdominal CT from 8/3/16 lists the mass as 7x5x4.7 cm (not 5.7 x 5.7) So I don't really know what to think about whether or not it's grown. And it's clear that the Dr who wrote the CT report, that mentions possible liposarcoma, didn't realize a kidney biopsy was already performed and the mass was already confirmed angiomyolipoma. The whole report left me very unsettled and anxious about this mass that the Urologist had told me there was no rush to embolize.

I sent the Urologist who ordered the kidney biopsy a message asking him to look at the Chest CT report and he replied that he looked at the images and it was "stable" - not growing.
So now I have conflicting info. :(

I've scheduled a consult now with Interventional radiology but won't see that Dr. til mid November. I do hope to go forward with the embolization of the angiomyolipoma before the year is out, even if there is "no rush" to do that. Even though he feels no rush, the Urologist's recommendation is to embolize it due to it's size and the fact that it's displacing parts of the kidney - and large angiomyolipomas have a greater chance of bleeding which could be life threatening. Honestly it kind of bother's me that he doesn't feel a rush to have the procedure done. He felt the chance of any problems arising in the next year were in the "single digits" but honestly, I don't want to risk it or spend any more time worrying about it. So all of that was troubling...

Then yesterday I went back to Boston for an Eye exam, Rheum follow up and Pulm Function test
It was my first eye exam done since Weg GPA dx. And it was awesome news that my eyes have no damage from this disease. They pressure in the eye is high (from prednisone) so he prescribed drops but there is no weg damage to the eye. YAY - great news.

Then I saw the Rheumy and she lowered my pred (tapering 5 mg each week til I go from 40 to 20) She thinks I've responded remarkably to treatment and that I'll be in remission as soon as she can taper me off Pred. She ordered labs as well - first time since the initial labs were done on 8/1/16. C-rp, Sed rate, CBC, Comprehensive Metabolic panel, C-Anca and Urinalysis.

Then I had a pulmonary function test done.

the Lab results are in except C-Anca.
C-rp went from 126 to 6!!!!
Sed went from 85 to 8!!!!
Both in the normal range now!
I'm EXTATIC about this! :)
Urine results, CBC and Comp Met Panel are all normal also!
Pulmonary Lung Function results look mostly normal after seeing the report (biggest exception is Expiratory reserve volume) but that doesn't seem to bother the Pulm dr as she said my PFT was normal and the report itself states in summary that my results are normal. I feel very short of breath in my lungs right now as I type though. Maybe its the prednisone? Maybe it's anxiety? I don't know...

So it's been a rollercoaster week... I'm very happy with the eye exam, kidney biopsy results, chest CT, lab results and that my pred is being further lowered, and at the same time I'm a bit anxious to see what the C-anca comes back at and I think I'll have to wait a week for those results. I was SUPER high at 1178 in august. I haven't had it checked since Aug 1. I'm kind of hopeful though that it will be much lower and I am aware that even if it's not lower it's not necessarily indicative of anything. And also I'm a bit anxious about getting rid of this angiomyolipoma as well. And I'm worried/hoping that the Pred taper doesn't bring back any GPA symptoms.

Soooo much going on in the last couple weeks/ months.
Just wanted to share with you all.

I hope you are all doing well.
- Gab

[drz]

Great Progress! :thumbsup::biggrin1::biggrin1::hug3:

[Gab122]

THanks Drz! Do you know... Do people ever test negative for c-ANCA after treatment? Or is it generally just a lower score?

[Middlesista]

Labs are going in the right direction for you - that is GREAT! My Pr3 went negative first and a while later my cANCA became negative but my CRP has been up and down.

I understand you wanting the embolization done - I would do the same

Take Care

[MikeG-2012]

Do people ever test negative for c-ANCA after treatment? Or is it generally just a lower score?

Can't help you with that one, mine has always been negative, but I still have the disease...

[drz]

THanks Drz! Do you know... Do people ever test negative for c-ANCA after treatment? Or is it generally just a lower score?
My ANCA scores slowly decreased to the normal range after treatment. And they increased some when my residual symptoms increased and then went back down to normal range as residual symptoms faded some.

[blm]

Wow! Glad you got some encouragement! That's a lot to take in. So much information! The doctor gauntlet is something we must become familiar with unfortunately. I see 3 more next week as well. Then I hope to return to work. So happy you're feeling better.

[Alysia]

THanks Drz! Do you know... Do people ever test negative for c-ANCA after treatment? Or is it generally just a lower score?
While in remission my C anca is negative and so is the PR3. You are doing great, Thanks God ♡

[Gab122]

Just got My ANCA score- it's 537. About half of what it was August 1. (1178) Negative ANCA would be under 20 I think. But I understand that research indicates that the anca score doesn't necessarily correlate with disease activity. So it's not necessarily bad news I guess, right?. Especially considering my inflammation blood tests (sed rate and c-rp) were so much improved. My sed rate is 8 - down from 85. And My c-rp is 6 - down from 126. I was hoping for negative results of under 20. But I am at peace because I know that it's not necessarily an issue at all. I was prepared for it possibly not changing in fact. I think I read that some patients have their ANCA go up when they're in disease activity and some patients have theirs just stay up all the time.
Thoughts?
Gab

[Gab122]

I asked for some input from the infusion center, where I got results. They just responded now.
This is what they said "ANCA levels take several months to drop dramatically - more than a few weeks. We will continue to watch your ANCA levels over the next several months but so far it's heading in a good direction and looks good. "

That makes me feel better. [emoji106][emoji4]

[Gab122]

My ANCA scores slowly decreased to the normal range after treatment. And they increased some when my residual symptoms increased and then went back down to normal range as residual symptoms faded some.

Hi Drz,
How slowly did it take to lower your ANCA scores? Many months? How high did you start.
Gab

[drz]

Hi Drz,
How slowly did it take to lower your ANCA scores? Many months? How high did you start.
Gab

Initially Mayo said it was off the charts. One of my doctors later told me he had never seen one that high. But a couple years later it was back with in normal range. It goes up some during infections or increases in my residual symptoms but then goes back to normal as my symptoms decrease. My doctors say I am one of the rare ones where my disease activity seems to correlate with my ANCA scores.

[Alysia]

Gab, my wg dr. always says to look at the "Graph" and if things are getting better, and they did because your C-anca is much lower, then your treatment is working well. It took years for my C-anca to become negative, and about a year after starting rtx (I didnt get rtx before 2013).