Recent Diagnosis

[misskay]

First off, let me start by saying a big thank you to Andrew for getting me fixed up so I can post.

My name is Stacey, I'm a 44 year old Law Enforcement Officer (well, I was until they tried to fire me due to absenteeism before my diagnosis. I got mad and quit instead... dumb move looking back) I was hospiatlized in Mid May 2010 for cavity pneumonia. They had no idea what was happening. After 6 days of IV antibiotics and a needle biopsy of a lung that showed lesions and nodules... they still had no idea. A pulmonolgist came to see me and quietly mentioned Wegener's.

2 weeks later the same doc had me admitted yet again for an open lung biopsy and more testing. Lemme just say chest tubes are NOT fun... a couple of days in ICU and then a couple days in a regular room... then home.

Long story short, I got my 'official' diagnosis in June. It is mainly effecting my lungs and sinuses as well as horrible joint pain, blue/black fingers and toes, scalp tenderness, exhausted all the time. I'm currently on 60mg a day of Prednisone (we tried to back off but the pain was unbearable) Cytoxan, Bactrim double strength. I've only been on the Cytoxan for 3 days now (taken daily). We're going to see how the oral dosage works and switch to IV if needed.

Am a little worried about hair loss, but figure if I start to look too mangey I'll just shave it off. Did wake up this morning to discover that I suddenly have no eyelashes on my right eye. Left eye looks thinner, but right eye... nekid.

I'm sure I'll have lots of questions down the line, but right now I'm having a bit of a hard time getting my thought organized...

Anyway... looking forward to getting to know everyone and to being able to talk to people about what this is all really like. People just have no idea that when you say your joints hurt, just how badly you really do hurt. Or if you say you're too tired to do something, you aren't being lazy you just honest to gosh cannot function.

Thanks for reading my ramble

[Sangye]

Hi Stacey, nice to meet you. It's great that you got dx'ed so quickly and found this group quickly, too.

I just posted recommendations for getting a proper Wegs doc here: Coping in AZ

I sure know the joint pain... I was completely crippled by it for about 8 months before diagnosis. It's a symptom of active Wegs and will diminish as the treatment works. (And if it doesn't, that's a sign that the treatment needs to be changed)

I'm wondering why they've waited so long to start you on cytoxan (ctx) if you were dx'ed in June. That's why you can't lower the pred yet without terrible pain. Basically they need 2 drugs: immunosuppressant (ctx in this case) and pred. The immunosuppressant acts like the main engine to get the disease under control. Pred is secondary, knocking down the inflammation so the main engine can work. It takes ctx about a month to start working and about 3-4 months to really kick in. Their delay in starting you on ctx is not good because of that lag time.

Oral ctx works better than IV. You can take it in 2-3 doses throughout the day if it bothers your stomach. Do you know about bladder precautions?

I've never heard of someone losing their eyelashes on these doses of ctx. What dose are you taking?

[Jack]

Hi Stacey, sorry that you had to come to find us.

As Sangye has already said, your symptoms should calm down with treatment and if they don't seem to be going, you need more or different drugs.
The ctx is a highly toxic drug that will harm your bladder long term if you don't drink plenty and visit the bathroom regularly, but most people don't find hair loss to be a major side effect. You could also do with taking something to protect your stomach (a proton-pump inhibitor like Lansoprazole, not an over-the-counter remedy) and also Calcium and Vit D to ward off bone damage caused by the steroids.

This is a very supportive community so please as any questions you like or feel free just to vent your feelings. It all takes a lot of coming to terms with.

[DEE]

I've never heard of someone losing their eyelashes on these doses of ctx. What dose are you taking?

Sangye i lost most of my eyelashes in the first six weeks of taking 150mg cxt and 45mg preds ,thats why no longer put on mascara as i look like coco the clown
my hair very thin but only lost complety on back of head where i lay but a good hairdresser can sort that
another good think was i had eyebrows shaped just before i started taking cxt still got them and they have never needed re shaping since
so Stacey there is different side affects for us all but please remember to drink like Jack says as i have been on cxt several months and everyone i meet keeps asking if im drinking enough in fact when i visit work sometimes some always gets me a glass of water wether i ask for one or not !!!
you will not meet a more supportive group of peole anywhere they have seen me through some rough times
please take care of you DEEx

[misskay]

Thanks for the welcomes. I think it took so long to start the Cytoxan because there were some strange things in my initial bloodwork that said it may be a relative of Wegener's but not the disease itself. After draining me dry (lol) they finally got conclusive results along with the lung biospy results that made a difinitive diagnosis. I just started the Cytoxan, and am only on 50mg a day for the first 2 weeks, then we go to 100mg a day, with the goal to get me to 150mg a day. I have a great doc and he has warned me about the bladder issues. I have been drinking about 2 quarts of water a day since I got sick due to being thirsty all the time and was voiding my bladder at least once an hour. NOW... same amount of water, but only voiding a few times a day. No pain, pressuree or burning... just not going.

As for the Pred... like I said, we tried to back off the dosage (been on it since May) but it became too painful. The 60mg a day seemed to take away the worst of it for a bit, but for the past week it doesn't seem to be keeping up. The pain is gradually increasing again. I can barely walk some days due to the knee and ankle pain, and my elbows and hands are excruciating. Probably going to put a call into the doc on Monday to discuss. Also, with the Pred, I stay so edgy that I stopped sleeping. So now the doc has me taking 3mg of Lunesta every night. Worked great for the first few nights, but now it seems like it puts me to sleep, but doesn't keep me asleep. I've also gained some weight back. I lost 25 pounds, and have gained 6 pounds back. I do fear gaining too much... but geez, talk about being a caveman around food. Mention food and I go all Homer Simpson with the drool and everything.

Has anyone had much experience with the mouth sores? Mine flare up and then diminish... only to flare again for no apparent reason. I get these small blisters at the gumline, and toothaches. I had a dental exam about 2 months before I got sick and got a clean bill of health so I know everything WAS in good shape. I rinse my mouth with warm saltwater during the flares and have become a fanatic about oral hygiene. Any other suggestions?

I really appreciate the feedback, and as I said, I'm sure I'll have tons of questions in the future.

[Sangye]

I have been drinking about 2 quarts of water a day since I got sick due to being thirsty all the time and was voiding my bladder at least once an hour. NOW... same amount of water, but only voiding a few times a day. No pain, pressuree or burning... just not going.

That's very bad. When you're on ctx you need to empty the bladder whenever you have the slightest urge to go-- keep the chemo from sitting in there. It may be that the pred is causing you to retain the fluid. It's common to need a diuretic while on high-dose pred to keep releasing fluid. This is worth paging your doc on the weekend. You can't have ctx sitting in your bladder like that-- high risk of bladder hemorrhage now and bladder cancer in the future.

[Jack]

Mouth and gum problems can be a ctx side effect. Use a good mouthwash such as Corsodyl and brush teeth gently but frequently with a soft brush.

My own treatment when first diagnosed (25 years ago) was IV Cyclo and IV Pred to get things off to a quick start (I was dying!) and I was in hospital for a couple of months. This aggressive treatment acted within a few days, but can take its toll in side effects which is why treatment tends to be more conservative these days.

[eileenv]

Hi Stacey, Sorry to hear your having such a rough time of it, I'm waiting for my rheumy to comfirm wegs, but i do know what you mean about the jiont pains, simply awful. Hope you start to feel better really soon.

[Jack]

It may be that the pred is causing you to retain the fluid. It's common to need a diuretic while on high-dose pred to keep releasing fluid.

I agree. In fact, I've just made a similar comment in the Pred Side Effects thread.

[Lightwarrior]

I'm sure I'll have lots of questions down the line, but right now I'm having a bit of a hard time getting my thought organized...

Anyway... looking forward to getting to know everyone and to being able to talk to people about what this is all really like. People just have no idea that when you say your joints hurt, just how badly you really do hurt. Or if you say you're too tired to do something, you aren't being lazy you just honest to gosh cannot function.

Thanks for reading my ramble

Glad you found us. I totally understand and I know others also understand how bad your joints hurt. Joints hurting so bad I thought i was dying were not my first symptons, but they were what got me the rheumy consult, who ran the test that put us on the road to making a positive dx. I have been on cytoxan and pred for 8 months now. I am down to 15 of pred and life doesn't feel quite as harsh.