hi from MA

[D.B.]

hello everyone. thank you for letting me introduce myself and participating in this community. i have already learned a few ythings since arriving here and its greatly appreciated.
i'm Dina. D.B. is just acronymn ( lol like we need anymore of those) for nickname given to me by awesome friend who i met around the same time as i started presenting symptoms (2005). i was diagnosed w GPA a few weeks ago at mass general hospital boston. currently o60 mg prednisone aiting for insurance to approve rtx infusions. this disease is so exhausting and challenging. new really i feel like its full time job res earching and educating myself. so grateful to find SO much vvaluable info here.
in october i decided to consult w facial plastic surgeon to reconstruct my nose. its very messed up and besides being upsetting to look at i am getting nervous its just going to collapse. surgeon says ok if i get rheumy clearance, which i didnt think would b an issue. but no! new rheumy sats i do have Wegs even though old rheumy said i didnt in 2010. so more waiting. TG i am patient by nature. well i am when not hopped up on prednisone and manic moody pod person lolc
latest labs have pANCA around 1,600 (mpo). reading that wegs more % for cANCA w pr3. also now finding blood in urine. we are "keeping an eye on it"
having dealt w health issues for such a while without knowing whats wrong w me has changed me in some ways, but i still am outgoing and love to laugh. total foodie and hate when i go for long periods of time not being able to taste food. ben really trying to step it up in the nutritional area w lots of new recipes.
just a couple more things to know about me...major NE/boston sports fan. ya WS champs :) Brady & Bruins! and i LOVE my pampered cat. hes been there for me when i was feeling my worst and would just lay next to me and make things a litle better. i

[Alysia]

Hi Dina,
you finally did it and write your introduction. welcome to the forum :cool1:

if your nose is a saddle nose, I think it is undoubtly wg.
how old are you ? are you only on pred ?
if you think that rtx can help you and you dont have the way to pay for it, there was here a link considering such cases. if you want, i will search where we wrote it.
good luck and continue to write.

[D.B.]

hi Alysia. yup got intro done lol now i guess will work on my story. its long. i am 46. prednisone, fosamax, bactrim. thank u for offer to research but hopeful for insurance approval so hold off on that. i did 1 year on plaquinel, then mtx for a few to control arthritis. wegs was considered but biopsy was inconclusive. i was up front w drs about prior use of recreational drugs fearing i had made myself sick but most drs agreed it was not source of what was going on w nasal destruction. its been difficult dealing w med professionals who labeled me and put in a "box" anc made it more difficult to get diagnosed.
did i read that you are clinical physcologist?

[Alysia]

Hi Dina,
yes, I work as clinical psychologist. Alysia is my weggie name. I don't want my patients to know about me.
I had 2 biopsies from the nose. both were false negative. I def have wg. so don't built on biopsies.
I hope you can get the rtx. It is helping me like a miracle. no med stopped deterioraion I had but rtx.
take care and continue writing.

[annekat]

Welcome to the forum, Dina. It is really the best place to be for anyone with WG... you will get a ton of support, info, friendship, and a place to vent, where no one will mind if you tell your story in a lot of detail. I don't know how I would live without it. I know I would feel a lot more alone and confused and would know very little about WG and its treatment. Reading the experiences of others can be very enlightening, and there is always someone there to address whatever concern you have. Good luck with the RTX, and keep us updated.

[D.B.]

im analytical chemist so its been hard trying to figure out this whacky disease which is far from exact science. false pos, cANCA vs pANCA. very encouraged though by the prospect of rtx. good to hear its working for you.

[D.B.]

Welcome to the forum, Dina. It is really the best place to be for anyone with WG... you will get a ton of support, info, friendship, and a place to vent, where no one will mind if you tell your story in a lot of detail. I don't know how I would live without it. I know I would feel a lot more alone and confused and would know very little about WG and its treatment. Reading the experiences of others can be very enlightening, and there is always someone there to address whatever concern you have. Good luck with the RTX, and keep us updated.
hi annekat. beautiful state of Wa. are thosr blackberries in your puc? i make a lovely scallop dish w blackberries :) i have read alot so far and yes so much great firsthand knowledge here. been fortunate in a way til now w no renal involvement but finding blood in urine scaring me. cant share too much w BF cause it mskes me too sad to see him worry so much.

[Marius]

Hi Dina, welcome to the forum. I'm new myself and are still learning a lot from this forum. There is so much info here I think it will take me quite a while to go through all the the threads and stuff. But keep it up, this forum is the place to be.

[annekat]

hi annekat. beautiful state of Wa. are thosr blackberries in your puc? i make a lovely scallop dish w blackberries :) i have read alot so far and yes so much great firsthand knowledge here. been fortunate in a way til now w no renal involvement but finding blood in urine scaring me. cant share too much w BF cause it mskes me too sad to see him worry so much. Hi, Dina. Yes, that is a pic of our native wild "trailing" blackberries. They are smaller, more delicate in growth habit, and harder to find than the big, brambly ones we call Himalayans, which I think grow pretty much all over the US along ditches and rivers. They are somewhat tart by comparison, but have more of a real blackberry flavor, so they are prized for use in pies and jams. I'm sure they would be great in your scallop dish if you could pick out the ripest ones to minimize tartness. I figure there must be other special varieties of native blackberries around the US, as well. But these are extra special to me because of memories of picking them with my grandma since age 5 or so and then getting to help her make pies and eat them.

I, too, am lucky to have no renal involvement. I can understand your BF being upset about this, but there is still a lot of life after WG dx, and being here on the forum will give you lots of knowledge and confidence that you can use to make him and yourself feel better!

[renidrag]

Hey Dina, welcome to the group. As Don would say, sorry you had to find us. I too am from Ma., just south of Boston and was seen at MGH by Dr. Stone. He was not the diagnosing physician, although he agreed I may be in remission in June of 2010 and I still am. (knock on wood). I am currently being seen at Boston University every six months for blood and all. Stay on top of your symptoms and don't be afraid to talk to all of us here. I don't say much but I do read a lot on the site. Take care,
Dale

[D.B.]

anne, picking berries memories made me smile. i look forward every year to picking blue and strawberries w BF. its just so calming to be out in field surrounded ny natures beauty. and then there are the cheesecakes lol i serve scallops w vanilla beurre which tames the tartness.

marius...hello and thank you.

[D.B.]

Hey Dina, welcome to the group. As Don would say, sorry you had to find us. I too am from Ma., just south of Boston and was seen at MGH by Dr. Stone. He was not the diagnosing physician, although he agreed I may be in remission in June of 2010 and I still am. (knock on wood). I am currently being seen at Boston University every six months for blood and all. Stay on top of your symptoms and don't be afraid to talk to all of us here. I don't say much but I do read a lot on the site. Take care,
Dale

pleasure to meet you Dale. im from western mass and finally had to make trip to boston. my first ENT flat out told me nothing he could do for me go to boston. initially talked w dr stones office, but they gor me in touch w dr lindsay at MEEI. then ovet to MGH and dr fisher who diagnosed. after consulting w dr fisher, i read that BU has internationally recognized vasculitis treatment center.

[Debbie C]

Hi D.B. and Dale an welcome to our "family" We all have become so close on here,sharing just about everything that we are more like a family than just people talking back and forth. My husband (who drown about 5 years ago ) and by best friend that I used to work at the airlines with and traveled everywhere with were both from Boston. I have been there several times and love the city (hate the traffic ) Would go to Faneuil Hall or have lobster rolls at the Cape. Was glad to see the Red Socks win also !!! Hope you both are seeing good specilist that really know W.G. and D.B hope you can get your rtx soon. Keep us posted and both of you take care !

[Poppy64]

Hi Dina and Dale, I'm also from Boston (Winthrop). I was diagnosed late August and I see Dr. Niles at MGH. Just finished my last round of Cyclosophomide and takin 12.5 MSG of pred, omperzole and Bactrim. Going for my 3rd RTX infusion soon. Also just started a high blood pressure pill. This forum is great, the people are awesome and know there stuff!

[Alysia]

My husband (who drown about 5 years ago ) and by best friend that I used to work at the airlines with and traveled everywhere with were both from Boston.
Hi Debra, I am sorry. I didn't know that and I couldn't ignore it. sending you a hug :hug1:

[annekat]

Hi Debra, I am sorry. I didn't know that and I couldn't ignore it. sending you a hug :hug1: Me, too, Deb. I know you have a BF now, but that would be a wound that would never completely heal. My heart goes out to you and his friends and family.

[D.B.]

Hi D.B. and Dale an welcome to our "family" We all have become so close on here,sharing just about everything that we are more like a family than just people talking back and forth. My husband (who drown about 5 years ago ) and by best friend that I used to work at the airlines with and traveled everywhere with were both from Boston. I have been there several times and love the city (hate the traffic ) Would go to Faneuil Hall or have lobster rolls at the Cape. Was glad to see the Red Socks win also !!! Hope you both are seeing good specilist that really know W.G. and D.B hope you can get your rtx soon. Keep us posted and both of you take care !

hi deb. my sympathies to you on such sad loss. ita boston great city just crazy w traffic. we go fanueil hall too and go to cape alot too. its my fav place to be.
love your pic!

[D.B.]

Hi Dina and Dale, I'm also from Boston (Winthrop). I was diagnosed late August and I see Dr. Niles at MGH. Just finished my last round of Cyclosophomide and takin 12.5 MSG of pred, omperzole and Bactrim. Going for my 3rd RTX infusion soon. Also just started a high blood pressure pill. This forum is great, the people are awesome and know there stuff!

hi poppy. wondering if u had improvement right away after first infusion?

[KimH]

Hi DB, I am from NW CT. I go to Great Barrington to shop and to the outlets in Lee. Are you close by?

[D.B.]

Hi DB, I am from NW CT. I go to Great Barrington to shop and to the outlets in Lee. Are you close by?

hi kim. im about about 1 hr east of that area (in northampton area). worked near suffield ct for a while. but I LOVE to shop. was just at evergreen shops

[annekat]

hi kim. im about about 1 hr east of that area (in northampton area). worked near suffield ct for a while. but I LOVE to shop. was just at evergreen shops Sounds like you two need to schedule a shopping event some day!

[Poppy64]

I have tracheal stenosis so I've had a couple of bronchoscopies. So what I thought was asthma isn't. I feel great after all my treatments however you need to be really diligent with purelling and trying to avoid sick people. After my last treatment I caught what I thought was a cold, then we thought it was the flu but it has turned out to be pneumonia. I think Dr. Phil told me to wear masks because I take the T every day. I just said to myself that's not gonna help. Well Phil, I will send you a picture of me on the T Monday wearing a mask!

[D.B.]

i've always been bit of a germophobe. esp in public places. T would freak me out...