Daughter recently diagnosed-see specialist in 3 days

[Joy]

Hello all, I have been following this site for abt 3 wks. now after my daughters diagnosis in Nov. This is not my 1st post . I told a bit of her story in early Dec. on Mel's intro post. I decided to go ahead & enter here after reading Jeff's story tonight. His wife is the same age as my daughter & my daughter wants to connect w/ other women who are concerned w/ fertility. That was my initial reason for writing Mel. Since then you have all given me so much helpful advice& support in many areas. I am learning so much but have so much more to learn. I will go ahead & retell her story.
Our daughter is 26 yrs. old & had been dealing w/what she thought was sinus , drainage & thick mucous in her chest for at least 3 yrs. She has been married 2 1/2 yrs. & they were planning to begin a family soon. In early Oct she noticed that she was very tired, just did not feel right & began having intermittant chest pains. She had moved to a new town & started working on her Masters in Aug. The pain increased & she wound up in the emergency room early one morn. By late that afternoon they had mentioned the possibility of Sarcoidosis or Wegners. Her drs. have been great! Then the waiting began , the bronchioscope was inconclusive & she had to wait for a lung biopsy for a confirmation. Once it was determined she had WG(2wks. later) the 60 mg pred was started. This was early Nov. Her lungs were full of granulomas & very inflamed. There seems to be no other involvement so her pulm. says she has limited WG. They would wait for her to heal b/f b/g the cytoxin.
After learning the effects of CTX we began calling Drs. we knew back home abt. harvesting eggs. They decided not to follow through w/ that but to look at other protocol options & to find a specialist nearby. That is where we are now. She has met w/ a local oncologist who w/ her pulm. were ready to b/g the oral CTX. After talking they decided to wait for the specialist's recommendation. She meets w/ her on Tues. Her rheum(WG specialist) was 1 of the presentors of the new trial on RTX. We are very interested in that possibility. Some of you weighed in on that earlier, thanks! She called her ins. & was told they would cover RTX. I am afraid to believe it. We are also in the process of making an appt @ Cleveland Clinic. She has been emailing the rheum. abt. her concerns & we now get the impression that a lessor treatment such as MTX or Imuran may be tried 1st. We are so confused...once we go to Duke & meet w/ Dr. Allen we hope their decision will be clear.
I have read w/ interest your comments on activity. Even though she does not feel herself she is still active-ice skating, tubing , walking. With that being said she still gets winded walking up the stairs. She went off oxygen completely after T-giving. She still has a positive outlook & is beginning to learn more abt. Wg & the diverse symptoms & treatment. She is also realizing that she does want to go to the specialist & Cl.Clinic. She is getting past hurting her Dr's. feelings. Although I think he is absolutely fine w/ her going. He has been really on top of things but has not see Wg that often. He diagnosed her quickly & we feel blessed to have been somewhere that she was diagnosed so quickly. Reading so many stories have helped me realize how lucky she was that her dr(pulm) had experience w/ WG. Thanks again to all of you for such a great forum!

[elephant]

I am so happy to hear that she is going to Cleveland Clinic, I go there too. I know it is uncomfortable at first to tell your doctor you want a second opinion, but we only have one life to live and this disease is nasty. Getting proper treatment in the beginning will save her from damage that WG can inflict. Wishing your daughter all the best!

[Sangye]

It sounds like she's on a good track.

I got a little confused with all the docs.... What's the name of her rheumy who was involved with rtx? Is s/he at Duke? Is that the rheumy she's emailing?

I doubt that someone whose lungs were full of granulomas would only be treated with mtx or imuran. Those are not nearly strong enough. If CC tells her that, then I'd believe it.

[Joy]

Sangye, we are going to Duke to (Rheumy) Dr. Nancy Allen this week. My daughter emailed her 2 wks. ago after meeting w/ the oncologist & asked her if she could get the ball rolling to see if she would qualify for RTX. Dr. Allen replied that she wanted to see her 1st & study her case. She also talked abt the poss. of treating her w/ MTX. We originally got Dr. Allen's name off the Vasculitis website. She is listed on the article abt. RTX.
The Cl. Cl. is processing ins. They may not take her ins. & will not make an appt. until they clear that. We are also going to look into the other centers & try to figure out what to do. We will follow Dr. Allen's rec at this time but plan to establish a relationship w/ a center. Thanks for the advice...

[Joy]

Thanks Elephant! Before moving to NC my daughter lived in Greenville. I remember reading somewhere that is where you are. I am in Anderson, so we are neighbors. We are still waiting for acceptance to Cl. Cl. They would not make an appt. until Ins. cleared. We are traveling to Duke to meet w/ rheumy Dr. Nancy Allen this week. Hope to get many questions answered & b/g treatment.

[Sangye]

That's a great plan, Joy.

[elephant]

Yes, I live in Greenville and I heard about Dr Allen too, but I wanted to get to a Weg specialist who saw many Weggies like us. Hope your insurance covers Cleveland CLinic! Glad you meet you neighbor!

[Palmyra]

Hi Joy,

It sounds like you and daughter have done a great job on learning about Weg, in a very short period of time. Knowledge is power with this disease, so the more you know, the better.

Very glad she is off to the Cleveland Clinic. Many on this site strongly advocate going to one of the major vasculitis centers for treatment (including me).

My daughter (soon to be 25yrs old) was diagnosed 4+years ago, and has never had to take cytoxin. She briefly tried Prednisone and methotrexate, but when that obviously failed, her specialist (at mayo) started her on Rituxin. She has had 3 rounds of RTX in the past 4 years, and is due for another in approx'ly one month.

She and her husband would also like to have children, so we are hopefull that this line of treatment has left that as an option.

Best wishes to your daughter, and pls keep us posted re: her progress.

[Joy]

Thanks so much for your encouragement, I was curious -is your daughter doing the 4 or 2 treatments in a round of the rtx? I read w/ interest when Sangye reported on those 2 protocols. I also wondered when she started @ Mayo. Our daughter is starting @ Duke but we are working on getting her to Cl. Cl. When you say she is due for another rd of rtx do you mean she has gone out of remission? Sorry so many questions-I just am so concerned abt the treatment decision that will be made tomorrow for our daughter & I want to be as informed as I can be...It sounds as though your daughter has done well-has she been on anything else? Thanks !

[jola57]

Hello Joy, I am glad that your daughter will get proper weg's doctors treating her. I am sure that she will be well on her way to remission soon. I do not take rtx but was on cyclo and now on mtx. I believe the rtx is taken a few times before it starts to work,