Diagnosed last month

[Stephene]

Hello everyone.I am finally able to join and be a part of the group.I was diagnosed last month but have been having symptoms since early September,2012.I am 41 with 7 children and married for 25 yrs to a wonderful man.I have a daughter who is 20 and was diagnosed with Microscopic Polyarterits nadosa when she was 10 yrs old.I knew as soon as I developed the vasculitis rash that I was either going to be traveling her journey or the Wegeners journey both of which are almost the same.Unfortunatly I knew what was happening but my Dr thought contact dermatitis.UGHH.Took 3 months before I was able to get back in to see a dr and by then my lungs were already damaged from the vasculitis.I cough up plugs daily.Bladder pads are a must now with the harsh coughing to get those up.the coughing up blood has diminished with the prednisone.I am on 60mg oral daily and I am schedualed for my 3rd weekly Rituxin tomorow. I also get 125 methylprednisone and Benedryl and Tylenol before the Rituxin.So far I have seen no improvements.May be its too early but I know with the experience with my daughter that the prednisone should be helping me more than it is.I started having the most awful joint pains yesterday.Hydrocone 10 mg along with 800mg ibuprofrin and tramadol has done little to help that pain.I am scared with the new joint pain.Not sure if this is side effects or the disease progressing.I am just getting scared with each new symptom considering I am on the best of medications.I am so happy to have found this wonderful site.I have never posted in a forum before so I apologise if this is long.I am grateful to find information from others like the coughing up of plugs.Couldnt find anything online til i got here. I will be actively using this site.Nice to meet u all.hugssss.

[Pete]

Hi Stephene,

Welcome to the forum. I feel bad that you had to find us. We're a learning community that shares experiences, knowledge, and a bit of fun when we can. There are several forum users from Washington that post here, so maybe you'll have an opportunity to mrrt face-to-face.

Hope your symptoms subside soon.

[drz]

Welcome Stephanie: sorry you had to join us but glad you found us if you need us.

[Stephene]

Thank you for the warm welcome. Its great to have found this forum.I felt like I was driving my family crazy taking about all my problems every day and they really are trying but dont really understand. So its nice to have a support group to turn to .As I said in my first post my daughter has went thru the last 10 yrs of fighting MPA. So I am able to talk to her as well but don't want her stressing over me with her pregnancy right now. She has also went thru 6 infusions of Rituxin and was able to have remission long enough to get pregnant.She is 6 months as of yesterday and is relapsing.We both see the same rhumatologist. It is extremely rare to have 2 family members effected.My 9 yr old son had a swollen red wrist last week with a "spot".Dr said any symptoms from other family needs to be considered for vasculitis. Am praying he is only having a spider bite.Diff doctor gave him cortosteroid cream and it helped. The soil where I live is heavily contaminated with arsenic!! The school across the street had to be resoiled due to high levels.Just so so sad.We live around and on old apple orchards.Wondering if this is the culprit.

[andrew]

Hi there and welcome :)
Is there any reason you're on Rituxan rather than something like Cytoxan (Cyclophosphamide)? Normally Cytoxan is the sledgehammer of choice when dealing with the newly diagnosed unless there's an issue with bad reactions. Related post here: http://www.wegeners-granulomatosis.com/forum/medication/1443-cytoxan-rituximab.html

Also, are you seeing a Doctor that's experienced in treating Wegs? That can make a lot of difference to treatment and as a result, how you feel.

[annekat]

Welcome, Stephene! I'm from Olympia, quite a drive to Omak, but you never know. Your case has some similarities to mine and probably everyone's on here. I'm sorry you had to get Wegener's. But since you did, this is the greatest place in the world to be. The people on this forum are the best. It is alarming that your daughter has a similar disease, also about the arsenic contamination in your neighborhood! I hope your son ends up being OK and not having one of these things.

The plugs and coughing are oh, so familiar, and even without the plugs, the coughing persists, and I also need bladder control pads. I don't know much about RTX and how long it takes to work, but I think all the drugs take some time. I've done pretty well on CTX, and now MTX, although I did have a minor flare this winter which I'm now just about done with. Everyone's case is a little different.

Don't worry about posting too much, the more the better, and your post was not too long! You can also search the archives and post private messages, and check out the Weggie Map at top of page. I'm looking forward to hearing more from you, and ask any questions at all, people will usually chime in with replies. Good luck and feel better soon!

[Dirty Don]

Welcome to THE group on WG, Stephene. Lots of experience and expertise here for you to sample, digest, and use accordingly! It does sound like your doc may be overdoing it inasmuch as I agree with Andrew's suggestion. Just because your daughter responded well to the doc's ideas in no way guarantees success for you...as you will see each case on here is different and we all have responded differently. Also, a biopsy is the only definitive dx for WG...not an educated guess. Keep searching for the right answers for YOU!

[Stephene]

Thank you all so much! Tomorow is my 3rd of 4 weekly infusion so I am off to bed early I hope.Usually the anxiety keeps me awake all nite and not even the benadryl will help put me to sleep during the infusion.I was awake over 40 hrs last week.I think that big dose of steroids they give me wires me out really bad.Hope everyone has a pleasant evening.Until my next time here I will sign off with a big hug to everyone.Gnite :)

[andrew]

Oh yeah I remember that :) I couldn't sleep much when I was on Pred either.

[Dirty Don]

High doses of pred can certainly keep one wired...I used to argue over absolutely nothing...just got wound up and couldn't quit, not my personality! Also, I am on Lexapro with Xanax backup (a sleep inducing drug) that helped me sleep better during the high pred times, but the dreams were pretty vivid anyway! Yikes! Not recommending more drugs, but if they help during the tough times...

[pberggren1]

Welcome Stephene:

I think rtx is the first drug you want to try. If that does not work soon then your doc will have to think about using ctx as well. I hope the rtx works for you. You should be able to start tapering off the pred at a faster rate until you get down to 10mg. I'm sorry to hear your daughter also has MPA. As a caregiver you know how tough it is.

[mishb]

Hi Stephene and welcome

My daughters are so scared that they will also have an AI condition when they get older......they seem to get everything else I have.

My 24 yr old daughter has just started to get nose bleeds. She has never had them in her entire 24 years. My doctor wants to see her but she is too scared to go in.

I hope the RTX works for you soon and you can start reducing the pred

Take care and as always.........

[Alysia]

Hi stephene,
welcome to the best forum in the world.
sorry to hear about you and your daughter.
I never got ctx. I tried imuran but vomit it and then MTX & pred.
now when my symptoms became worse my WG doc ordered RTX. he said that for women my age (45) it is better than CTX. maybe your doc has the same rational.
i got my second RTX two days ago and Im waiting for it to start working.
I wonder, how much time it takes to the RTX to start working ?

[Stephene]

Rituxun was cancelled due to infection in sinus.Started on bactrim.Would love to see some positive changes.Had a couple good weeks with my lungs at the high prednisone levels but same dose and already my lungs just as bad as the start of it all.One positive thing is there has been no blood in over a week when i cough just pink plugs. I have a caring doctor for sure as I found out today...he is on vacation in Disneyland and took the time to have the nurse cancel the infusion and start the antibiotics.The other on call Rhuemy was gonna go ahead with the infusion. Crazy the differance of opinions.Glad my doctor cared enuogh to do it this way. Eases my mind as I am not too familiar with this doctor but all my doubts are no longer there.A big hug to all my new WG friends.Hope this day finds everyone in good spirits.

[pberggren1]

Seems odd they would not treat both at the same time.

[Barbara N]

I hate to say welcome to this group, because no one should be here, but I am new to the group and it has been such a help and everyone is so nice. I have really started to understand some of the things that happen to me and most of the information I have had from before is so out dated and misinformation that I am starting to get things straightened out. This is my first forum as well.

[Barbara N]

I loved your quote from Mark Twain about how you could die from a misprint. Could you put the whole quote back up please so I can get it right.

[Dirty Don]

I loved your quote from Mark Twain about how you could die from a misprint. Could you put the whole quote back up please so I can get it right.

Better yet, Google Mark Twain quotes...you'll get a few sites, pick one, look them over...the vast majority are priceless! Besides, he IS the conscience of the past and modern American society...just fun to see things haven't and don't change much in the human nature!! LOL! Still looking for my cup of coffee...what!!!!!

[greenjeep]

I too am new to the site. Haven't really used a forum before, but I too am eager to get involved. I don't have lung involvement with my condition yet (hopefully never) but the joint pain is one of my flags that a flare-up is looming. But it is odd, the steroids always seem to knock this down pretty quick.

Terry