Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

[HopeinTN]

I will email my doc tonight. After an hour it almost went away entirely. So weird. I can't wait to get passed the feeling of I'm being a nag, driving my doc crazy and fear of hospitals. I know it's gets easier.

You can't keep a good gal down.

Thanks!

[Al]

I will email my doc tonight. After an hour it almost went away entirely. So weird. I can't wait to get passed the feeling of I'm being a nag, driving my doc crazy and fear of hospitals. I know it's gets easier.

You can't keep a good gal down.

At issue is how to keep a good gal up. Don't worry about driving the docs crazy; they get paid well to listen to sick people, so let 'em earn their keep. You are right to mistrust hospitals; they are, as the saying goes, no places for sick people. Still, the best way to avoid patronizing them is to not let things go too far. So nag away! Even as we nag you!

[Sangye]

HopeinTN, I agree with Al. It's important to tell your doc anyway. When I've had lung issues the symptoms sometimes come and go even while the Wegs activity is increasing.

Why did they keep you at such a low dose of ctx for 4 weeks? That isn't the norm. They usually start you at 50 mg, then increase to 100 and 150 mg by the end of 2 weeks. I'm going to nag you to get a Wegs specialist involved. If you can't travel to one, then at least consider getting a VF doc to consult with your doc, okay?

[HopeinTN]

I think they wanted to make sure that I could tolerate the CTX and gave it 4 weeks. The labs confirmed that I can tolerate it so it was increased. I mentioned the pain in my lung and they said to just keep a close eye on it. We know what it is but if it gets to a point where it effects my breathing or too painful to go to the ER. A new Dr. from Vanderbilt was brought in Tuesday and he went over everything with me thoroughly. I will look into contacting a Dr. from the VF list and make sure he agrees with everythng.

I hope you all are enjoying yoru Thanksgiving day and continue to have many things to be thankful for. For me, the one thing that comes to mind (aside from family...) is that I'm so thankful to have found this site!

Thanks again guys and gals!

[HopeinTN]

One thing my doc said at my last appointment is that she thinks the pain in my legs and knees could be osteoarthitis. Really? I think it's just the meds. I'm not sure I'm on board with her opinion on this as it just started after I started treatment. Hmmm. It really hurts my knees to walk up or down steps. Also, I'm kind of worried that they will be checking my labs every 4 weeks rather than 2. Is that normal?

The two docs I have at Vandy seem to be on top of this but I can't help but wonder.

[Sangye]

If your symptoms began after Wegs treatment then it is not osteoarthritis. That's just ridiculous. OA takes years to develop. OA pain and stiffness come on gradually, and generally do not affect both hips or both knees at the same time. It's quite common for MDs to tell patients that their symptoms are from arthritis or old age, without doing anything to really check it out. With Wegs you cannot let a doctor make that mistake. Joint pain is often a sign of severe disease activity, especially if it's worsening.

[HopeinTN]

I was kind of thinking that same thing. I'm only 39. Should I confer with the one Wegs specialist that is in Nashville from the VF website? I wasnt to keep my Rheumatologist but I guess I can have both.

[Dirty Don]

You can have both, more brains in the game, the easier it is to play! Sincerely, try to get the best, to the best, as much as you can. When I went into my internist cuz I wasn't feeling well, he tried his best...later after all this crap had subsided a bit, he admitted he had no idea what WG is, he'd only heard of it in medical articles and studies, never seen nor treated the reality. So, get the best you can...it's imperative...best of luck!

[Al]

One thing my doc said at my last appointment is that she thinks the pain in my legs and knees could be osteoarthitis. Really? I think it's just the meds. I'm not sure I'm on board with her opinion on this as it just started after I started treatment. Hmmm. It really hurts my knees to walk up or down steps. Also, I'm kind of worried that they will be checking my labs every 4 weeks rather than 2. Is that normal?

The two docs I have at Vandy seem to be on top of this but I can't help but wonder.

Checking labs every four weeks is about right for remission; if there is an active flare, I'd go for some higher frequency.

Once you have GPA or a similar disease, you cannot let the doctor blow you off with a vague, guess-y extra diagnosis. The pains you describe are known to be associated with your disease and some of its meds, so these should be the first suspicions of the doctor; anything else would need to be specifically proven! So nail that doctor, HK!

Al

[HopeinTN]

I think I'll give a call to the VF dr. tomorrow and just see if I can get in for a consult. If it's meds, I get that but is it doing damage or just normal side effects. If it's Wegs, then does the meds just take longer to work?

Thanks All!