Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

[annekat]

Thanks, drz. Given your history, tapering drugs does sound riskier. But I haven't been on MTX that long and don't feel ready to taper it, plus I don't think quitting Bactrim is a good idea. The doc says he wants me on "as little drugs as possible" and acts like that is his motivation for wanting me to start reducing them. I'll see him in November.

Working with a specialist long distance could be an option. I am unclear on whether I could do this on my own or whether my doctor would have to agree to it, and who should initiate it.

[drz]

Thanks, drz. Given your history, tapering drugs does sound riskier. But I haven't been on MTX that long and don't feel ready to taper it, plus I don't think quitting Bactrim is a good idea. The doc says he wants me on "as little drugs as possible" and acts like that is his motivation for wanting me to start reducing them. I'll see him in November.

Working with a specialist long distance could be an option. I am unclear on whether I could do this on my own or whether my doctor would have to agree to it, and who should initiate it.

You can probably initiate it but check with Vasculitis Foundation and ask them. My treating doctor initiated my case consultations to be sure he was giving me best treatment. Your treating doctor has to agree to at least consider the recommendations and discuss it with you or it wouldn't accomplish much. i think any good doctor would jump at the chance to get a good case consultation about treating a GPA case unless they are a recognized expert too. I now see my main consultant quarterly and he sends a summary of his assessment and recommendations to my treating doctor and my local internist along with results of all the lab work I have done at Mayo for those visits.

[annekat]

You can probably initiate it but check with Vasculitis Foundation and ask them. My treating doctor initiated my case consultations to be sure he was giving me best treatment. Your treating doctor has to agree to at least consider the recommendations and discuss it with you or it wouldn't accomplish much. i think any good doctor would jump at the chance to get a good case consultation about treating a GPA case unless they are a recognized expert too. I now see my main consultant quarterly and he sends a summary of his assessment and recommendations to my treating doctor and my local internist along with results of all the lab work I have done at Mayo for those visits.

Thanks again, drz. I agree with you that a doc who is not an expert should jump at the chance to consult with one, for free. This is a serious disease we are dealing with and people's egos have no place in the treatment. I can't be sure that was the problem, but when I mentioned it early in my treatment, he didn't think it was necessary. I feel I will need it more as future adjustment of the drugs will be a more intricate and somewhat intuitive process. Thanks for the pep talk.

[drz]

Thanks again, drz. I agree with you that a doc who is not an expert should jump at the chance to consult with one, for free. This is a serious disease we are dealing with and people's egos have no place in the treatment. I can't be sure that was the problem, but when I mentioned it early in my treatment, he didn't think it was necessary. I feel I will need it more as future adjustment of the drugs will be a more intricate and somewhat intuitive process. Thanks for the pep talk.

He may have delusions of adequacy for managing your GPA and not feel the need for any consultation. If so, it may help to emphasize that YOU NEED ONE for your concerns and anxiety about YOUR treatment so you feel more comfortable with your over all treatment plan. After all the focus of the treatment should be on you and your needs, right? I feel comfortable with my treating doctor because he has reviewed my treatment with two of the experts often mentioned on this forum site and one of them is meeting with me quarterly to monitor my treatment. I would feel much more anxious about my treatment if this were not the case. After all the local doctors who saw me for years almost killed me before i was finally diagnosed correctly and referred to someone who knew how to treat my GPA who is my current treating doctor. My wife would have also died from her lymphoma if she had stayed with local oncologists and not sought out consultation with experts at Mayo. The local doctors may be OK for most routine care but I think many often fail to recognize the limits of their skill and experience and are not up to date on the latest research and treatment techniques. Good luck with getting the reassurance you desire from a case consultation. It may even pay to make a trip to one of the recognized experts to be sure you get a good review.

[annekat]

Thanks, drz. Of course, you are right.

[Sangye]

What drz said.

[HopeinTN]

In addition to my dr. saying that my Wegs is under control, I found out today that my labs form that appointment show that my SED rate is up to 20 (not bad, but it has been low for most of my treatment) and my CRP is up to 14.2 (which has also been down). Could this have anything to do with the nose bleeds? As I mentioned before, I will see an ENT later this month to get my sinuses checked out.

I’m just not convinced that this treatment is working if there is no change in my lungs from the CT (but, not getting worse). I’ve also started to have pain again in both lungs, similar to what started this. What do they look for in labs that would tell them that the treatment is working? I’m sure I’ve asked this before but I wanted to see what you guys thought before I emailed my dr. with questions.

Thanks!

[gunnyl]

When I made the switch from CTX to MTX my Doctor started me slowly on the MTX while still taking the CTX since it takes about 3 weeks for MTX to enter your system. At about the 3 week mark she brought me up to 20mg of MTX and stopped the CTX. I am currently on 25mg MTX although my pharmacy seems to be having a hard time getting the MTX these days. Anybody else seeing the MTX supplies drying up in their area?
GL

[annekat]

When I made the switch from CTX to MTX my Doctor started me slowly on the MTX while still taking the CTX since it takes about 3 weeks for MTX to enter your system. At about the 3 week mark she brought me up to 20mg of MTX and stopped the CTX. I am currently on 25mg MTX although my pharmacy seems to be having a hard time getting the MTX these days. Anybody else seeing the MTX supplies drying up in their area?
GL

Not yet, but I'm due for a refill, so I'd better find out! I do remember something on the news a few months back about a shortage of MTX in IV or injection form in the amounts needed for children with cancer, or something along those lines. Someone else will have a better memory of that and knowledge of whether that affects us.

[HopeinTN]

At my appointment today I was really thinking that the Cytoxan (after 14 months) would be a thing of the past. Not so fast. It looks like I'll have it around until at least June. Yuck! However, I can start alternating between 100 and 5mg after the first of the year. Plan on starting Imuran in June.

Not exactly what I wanted to hear, but it's a start.

I hope all is well with for my fellow Weggies! Happy holidays!