Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

[drz]

welcome this forum has been great for me. my husband dx aug 2011. unfortunatly ctx didnt help my husband but he start rtx 2 weeks ago, soo far hes only symptom is muscle weakness which has effected hes back which was already troublesome due to a injury 30 years ago dennis is 50 yrs old. he gets very low at times feels he is a burden on the family but i try all the time to reassure him how much we all love him. unfortunately we have not been given much support we only have this forum and the internet for information . dennis has sinus and lung involvement crissie

Sorry to hear that. Most of us have experience the losses that bring on many negative feelings. Many do recover enough to get much or most of previous life back. The rest of us learn to adjust to our new limitations and down sizing or downgrading of our life style. Some times treatment for depression is needed and very helpful in this process of accepting our losses. For many of the regular users on here this forum is a primary source of support and information. Only a few of us have regular access to a recognized expert in treating our GPA disease but most find a doctor or doctors that seem to have adequate experience and skill in treating us. Very few have access to any face to face support groups that meet regularly. I don't know of any active members here who say they attend such groups. Many of us here can identify with your and your husband's plight. Glad this forum is helpful and that you found us.

[Lightwarrior]

Sorry to hear that. Most of us have experience the losses that bring on many negative feelings. Many do recover enough to get much or most of previous life back. The rest of us learn to adjust to our new limitations and down sizing or downgrading of our life style. Some times treatment for depression is needed and very helpful in this process of accepting our losses. For many of the regular users on here this forum is a primary source of support and information. Only a few of us have regular access to a recognized expert in treating our GPA disease but most find a doctor or doctors that seem to have adequate experience and skill in treating us. Very few have access to any face to face support groups that meet regularly. I don't know of any active members here who say they attend such groups. Many of us here can identify with your and your husband's plight. Glad this forum is helpful and that you found us.

Good advice and I am so glad that you found us. I can honestly day that this forum has saved my life and sanity on more than one occasion. Are you seeing a Wegs specialist??

[HopeinTN]

Crissie- I hope Dennis is getting the help he needs and glad you have this forum. Do you know what lead his doctor to determine that the Cytoxan was not working and to try another med? Thanks!

[HopeinTN]

I miss Al, and not getting to share thsi with him...

My rheumy appoint went great today. Still no change in nodules in lungs, and this means it’s not getting worse. Staying on the CTX for now and will re-evaluate in December. Depending on how my ENT appointment goes next month, I may get to slowly get away from the CTX and move towards a maintenance plan. Meaning, that my nose bleeds and other issues are not Wegs related. She was adamant that we could not stop the CTX anytime soon. You can blame a gal for trying. Even though I’ve been on it for one year next month, some people just need it longer than others.

At my urology appointment today, she saw no signs of Wegs on my CT scan of the kidneys (only scarring from past kidney stones) and the cystoscopy shows that my bladder is ok. The bleeding is nothing to worry about and some people will always have blood in the urine. Also, no bladder cancer!

All in all it was a great day and my mom drove down from KY and kept me company. Let’s hope the good role continues next month!

[drz]

My doctors used to tell me during some of my worst times that if i wasn't getting worse, I was getting better. I think they meant the bad stuff had slowed down so now things could turn around and improvement would follow. It helped cheer me up during those low times. Nice to hear the bladder still looks OK from CTX meds and no apparent new damage to kidneys.

[annekat]

After being on 100mg. CTX for I guess about 9 months, my doc lowered the dose to 75mg for a few months, and then, I think, to 50mg. for a short time. I seemed to improve under that taper, with pred going from 30 to 20 to 15 to 12.5 to 10mg., which I'm on now. I expressed doubt that the 50mg. CTX was going to do much of anything, and around that time, he took me off CTX and started me on MTX. Just sharing that as a possible scenario, though our cases are different..... your lung involvement lasted longer and left more damage, it sounds like, while I have had significant sinus and ear issues, and they are still lingering, while you apparently don't.

[drz]

After being on 100mg. CTX for I guess about 9 months, my doc lowered the dose to 75mg for a few months, and then, I think, to 50mg. for a short time. I seemed to improve under that taper, with pred going from 30 to 20 to 15 to 12.5 to 10mg., which I'm on now. I expressed doubt that the 50mg. CTX was going to do much of anything, and around that time, he took me off CTX and started me on MTX. Just sharing that as a possible scenario, though our cases are different..... your lung involvement lasted longer and left more damage, it sounds like, while I have had significant sinus and ear issues, and they are still lingering, while you apparently don't.

My treatment was similar but I was switched to azathioprine since I had kidney damage and couldn't do MTX. The CTX also seemed to quit working for me about that time too and the generic Imuran seemed to work well for me. I am still on it 20 months later and down to 5 mg of pred. The CTX kept wiping out my WBC too and creating other problems too for me but it did help get the Wegs dog quieted down.

[annekat]

My treatment was similar but I was switched to azathioprine since I had kidney damage and couldn't do MTX. The CTX also seemed to quit working for me about that time too and the generic Imuran seemed to work well for me. I am still on it 20 months later and down to 5 mg of pred. The CTX kept wiping out my WBC too and creating other problems too for me but it did help get the Wegs dog quieted down.

I can't really say that the CTX quit working for me at 50mg. But then I'm a small person, as my doc keeps reminding me even tho I'm a bit overweight for my height. My memory is hazy, but I think he may have actually suggested either going to 25mg. CTX or starting on 10mg. MTX. Then I really did question whether the CTX would do anything at that low dose. We both wanted to get me off CTX, so I started taking the 10mg. MTX, at first along with 25 or 50mg. MTX, I forget which, and then the MTX alone. When I first started the MTX, I got a small Wegs rash on my forearm, which went away pretty soon. Since then, I seem to be doing pretty well on the 10mg. MTX, 10mg. pred, and Bactrim 3X/wk. He talks like he wants to take me off Bactrim pretty soon and start tapering the MTX. But 10mg. is already a low dose, right? It's getting to the point where I might need a second opinion on some of this stuff, as he is by no means a Wegs specialist. Having said that, I'm happy that I've done this well under his treatment. But I just think managing the drugs will get a lot trickier from now on, as I start going into remission. I know I've talked about this before, and the fact that there aren't any real Wegs specialists around here.

[drz]

I can't really say that the CTX quit working for me at 50mg. But then I'm a small person, as my doc keeps reminding me even tho I'm a bit overweight for my height. My memory is hazy, but I think he may have actually suggested either going to 25mg. CTX or starting on 10mg. MTX. Then I really did question whether the CTX would do anything at that low dose. We both wanted to get me off CTX, so I started taking the 10mg. MTX, at first along with 25 or 50mg. MTX, I forget which, and then the MTX alone. When I first started the MTX, I got a small Wegs rash on my forearm, which went away pretty soon. Since then, I seem to be doing pretty well on the 10mg. MTX, 10mg. pred, and Bactrim 3X/wk. He talks like he wants to take me off Bactrim pretty soon and start tapering the MTX. But 10mg. is already a low dose, right? It's getting to the point where I might need a second opinion on some of this stuff, as he is by no means a Wegs specialist. Having said that, I'm happy that I've done this well under his treatment. But I just think managing the drugs will get a lot trickier from now on, as I start going into remission. I know I've talked about this before, and the fact that there aren't any real Wegs specialists around here.

Tapering off the maintenance meds will be up for discussion at my next review. Some experts argue for continuing them on a longer term basis since the evidence suggests it does reduce the risk of a flare. The risk of damage from a big flare needs to be weighed against the benefits of getting off the maintenance meds. I have lost most of my kidney function from the Wegs and diabetes so tapering off could be dangerous for me and great source of anxiety if we decide to try it. I barely survived my initial treatment when finally diagnosed and it is very doubtful I could survive a big flare that severe again. A real slow taper and close monitoring can reduce the risks somewhat but I don't know what my experts will recommend. And I wonder if they will have a consensus about what to do next and how much input I will get into the decision. It was hard enough to get into a drug induce remission and trying for a drug free one will most likely be equally or more difficult. It would be nice though to get one if one can keep it long term. But I am doing pretty good now on current maintenance dosage and willing to continue taking maintenance meds for a much longer term too if that is their recommendation.

Anne, you should be able to do a case review and consultation with one of the experts listed on Vasculitis Foundation. They can send your case summary and do it over phone or internet I think. My first one was done that way.

[HopeinTN]

Great info to have. I'm really excited to get off the CTX or at least decrease it as soon as possible. Another question, what is Hemolysis? Side effect of treatment or disease activity? Thanks!