Diagnosed a year and a half ago

[Jack]

We see the Rheum. in 2 wks. so she will be only on steroids(60mg) until then.

Although her dose may change, she will still have to take steroids for the time being.


I was made sterile by the ctx, but for me it worked quickly in knocking out the disease and I had no ill effects from it at all. At that time, there was no alternative so this was just as well! For many, there is no real choice of drug used for treatment and it is often a case of what can be tolerated and what works. Every case is different.

[andrew]

Your take is very interesting, and I will only add this about your daughter and the forum. When I was first diagnosed and found this forum (keep in mind I'm 45), I had friends ask me whether I thought it was "good for my mental health" to hang out on line with a bunch of people who were sick and saw the worst of this disease. Some people thought that it would "interfere with the positive mental attitude" that I needed to "fight and win my battle against WG."

Later, I had friends even say that maybe I shouldn't tell people (this was funny because it was in the context of one telling me that people around were asking her if I was ill -- I had been shedding weight -- and her assuring me that she wouldn't reveal my secret.") Even later, I had people strongly advise me against going to the Vasculitis Symposium (held about 7 months after my dx) because it would be too stressful.

It may be that your daughter is the kind of person who would not communicate on a forum, but I would encourage you to let her know that we are here for her (and you as well of course). I am so fortunate to have found such a wonderful group of friends, and it has meant so much to me even though I appear "well" and can continue to participate in many of the activities I was involved in before diagnosis. I loved going to the symposium and meeting others just like me (and because WG initially severely impaired my mobility, it was nice to not be the only 'young' person in a room without a limp and cane).

There may be also things that she doesn't want to share with you as her mom that she would want to share here. I in fact won't let my mom or husband come on her (although he could find it easily enough; she never could) because I want to be able to vent without worrying them.

This post is a response from Joy

Jan-thankyou! I definately plan to give her the info as she learns more abt. living w/ Wg. I will phase out & it can be her place to find friends & support. This is a gradual acceptance process for her & there will be a time that she will be here. I agree that she could be worried abt. sharing everything w/ her mom - right now this is still so new to her & it is her treatment that we are focusing on. I am glad you are here! I read your symposium info- that was very helpful. it def. sounded like a good thing that you went. I do think she would communicate on the forum as time goes on. Thanks again for your input.

[Sangye]

Mel, It was so good to hear from you! Your situation sounds very similar to my daughter. Your protocol is what the pulm. told her - IV CTx w/ pred. then MTX w/ pred tapering ,( the lupron was an interesting addition we need to ask abt.) only the timeline is longer than what we were imagining. I think we only heard what we wanted to hear, all the shortest timelines.... Like you, my daughter has a very positive attitude. She is still naive concerning the reality of living w/ this disease. That is why I have not told her yet abt. this forum, I worry it will knock her for a loop as it did me. The info I have gathered from everyone has beeen invaluable, the more I learn the more questions I have. I hope it is not wrong to keep her in the dark for now but a little at a time to face as she grows into the full realizations is where we are now. She met w/ the oncologist yesterday who has now rec. the oral over the IV CTX. due to doseage control. I know some of you were concerned abt. the initial plan for the IV for that very reason. The Rheum. @ Duke has emailed her abt. the RTX as a strong poss. The onc. yesterday also supports that as a poss. What are RTX side effects? The onc. talked abt. all the things it did not do - is the only neg. that it has not been studied as long? We are totally confused....the info I have gathered here helped me write up questions she asked along w/ hers yesterday. We see the Rheum. in 2 wks. so she will be only on steroids(60mg) until then. This concerns me....she is to ck. w/ her ins. co. today abt the RTX. So, Sangye I would greatly appreciate any suggestions on that front-her fertility issues are a main concern of hers at this time. W/ that in mind she is very interested in RTX. Thanks to all of you & your help, support, knowledge. Mel I wish you continued sucess w/ your treatment- thankyou so much!!! Joy

Each time I've had rtx I've been totally wiped out by it. It makes me feel like I've had a reverse blood transfusion, and each weekly infusion leaves me weaker. By the end of the month I'm barely functioning. However, I have no idea if this is due to the rtx or the 100mg IV solumedrol given at each infusion. I'm very sensitive to pred and I wouldn't be surprised if that's what is causing it. There's no way around it if is-- pred is necessary to prevent allergic reaction.

It seems people either react like I do or they don't notice anything at all. Within 2 weeks of the last infusion I start to recover and feel the benefits of the rtx.

As far as insurance goes, you can be 99% sure that they will not have rtx on their list of automatically approved drugs. Her doc will have to do a prior authorization to get it and send documentation of why she should have it, in addition to references to the studies of its efficacy.

The 3 ways insurance companies like to deny rtx are:
1) They call it an experimental drug. It is not an experimental drug.
2) They say it's not FDA-approved for Wegs. This is true, but there is no drug that is, including ctx or even pred, which they will happily cover.
3) They require that you "fail" on ctx first. This is the only one that might be impossible to get around. They are heartless and don't really care if young people become infertile. Fight as hard as you can, and if this is the only reason for their denial then you are probably stuck with ctx.

[NicShaf]

Mel & Joy,
I feel exactly what you (Mel) and your daughter (Joy) are going through. I was just diagnosed in December 2010, and I'll be 27 years old next week. My husband and I were married last March and trying to get pregnant when I was diagnosed. I am so sorry that you both have to go through this, I know first had how devastating a blow that can be.
The first appointment I made after leaving the hospital was with a fertility specialist. This is what I was told, about fertility and the treatments, I hope this is helpful.
I was told that the Cytoxan would most likely put me into early menopause, and there was a 50/50 chance that my cycles would return after treatment ended. If it returned, it is possible to try and get pregnant after two years of being "drug free" and in remission, but it would be a high risk pregnancy. My Rheumy didn’t like the idea of the infusion Cytoxan because the oral dose was shown to be more effective for WG.
We asked my Rheumy about luprin, and she gave me the option of taking it before starting cytoxan to preserve my ovaries, but I opted not to, I wanted to start treatment asap.
My Rheumy had not treated any WG's patients with Rituxan, and didn't feel it was the best course of treatment for me. I was also a little freaked out by the PML. But she did give me this option because it would not affect my future fertility.
My husband and I decided to go forth with the Oral Cytoxan, and see what the future brings.
I take the Cytoxan 150mg/day in the pill form along with the 60mg of Preds daily that I was put on shortly after getting out of the hospital (and bactrim, but this doesn't affect fertility that I know of).
I hope this is helpful for you both. I wish you both the best of luck and hope to hear good things for you.

[ScreaminMeanie]

Nic, how long have you been on the CTX now, and how is it making you feel? I've heard a few people say that it made them feel a little tired, but overall not that bad. In my case I was unable to work full time (honestly, it was all I could do to get out of bed in the mornings to TAKE the meds!), and I felt awful the whole time I was on it. I'm hoping if you have less severe other side effects, you may also not be subjected to early menopause. I don't know if any one person's side effects with any particular drug can be predicted, but it makes sense to me that if a drug really screws up one of your bodily systems, it is more likely to screw up all of them. I don't know if there's any data to support this, so basically figure I'm just rambling here and hoping things go as well as possible for you!

[NicShaf]

I've been on Cytoxan for about 3 weeks now, only one week at 150mg/day. The first two weeks were 100mg/day. So far, I feel a little tired, but not too bad. I have gone back to work full time, but I take a nap in my car for my lunch hour, this helps me get through the 8 hours of work. I have been feeling better and better every day since getting out of the hospital, I consider myself very lucky thus far. I hope that it won't change too much from here, but I'm prepared either way. Thanks for the positive thoughts.
I don't know if this has anything to do with it, but I adapted my diet to be “anti-inflammatory” also. I eat all whole grains, whole fruits and veggies and try to get as much lean protein as possible. I notice that days I steer away from these healthy choices are usually followed by a day that was not a good as the day before. I know there is no proof that diet can help WG, but I have found it to be helpful to me...whether it's all in my head or not, it can't hurt, right

[Mel]

Hi Nicole! I am sorry to hear about your recent diagnosis. The first few months were definitely the hardest for me. The shock of the disease and the recovery from being hospitalized were almost too much to handle. As I said in one of my first posts, I knew that I wanted to get pregnant one day and the doctors had told me that the IV route was the best way to go, so that is what I did for 3 months. After that point I switched to methotrexate and prednisone. I was able to taper off the meds until I was only taking 2.5 mg of prednisone. I lost all of the weight and was feeling amazing. Unfortunately, this past December (about 18 months after I was first diagnosed) I flared up again. I had to go back on higher doses of prednisone and methotrexate. My doctor was thinking of putting me on rituxin but decided against it for now. He wants to see if I will go back into remission on the prednisone and methotrexate. I am seeing him on Tuesday so hopefully I will find out more then. For now, I'm not feeling too bad. Some days are better than others. I try to stay strong and positive and live my life without focusing on my illness all the time. That seems to be the best right now. I wish you all the best and hope that you achieve remission soon. Stay strong!

[NicShaf]

Mel, I appreciate your kind words of understanding b/c I know you understand exactly what I'm going through. The first couple weeks were really hard for me to cope with the magnitude of everything; not knowing much about the disease, finding out about my fertility, but every day is a little better than the day before, but hopefully not as good as tomorrow...this has become my motto lately
I wish you all the best in your new treatment, I hope they find something that works for you and that you can still achieve your dreams of a family. As for me, I think about adoption more and more every day, and become more happy about this prospect in my future.
Please keep me posted on how you're doing. It is nice to connect with someone my age who wants a family and is dealing with Wegs. As understanding and supportive as my husband and family have been, the understanding you get from someone going through it is much different
All the best to you!