IV Cyclophosphamide

[Bloom]

Hello everyone, I haven't posted on here before, despite registering some time ago. I have had lots of investigations over the last 18 months, the first diagnosis was thyroid and lung cancer, then after wedge resection of a mass in my lung, I was told I might have vasculitis because I had a positive ANCA and the lesion looked like an inflammatory process, the surgeon said Wegener's but no one else did, I was seeing a chest physician and then referred to the vasculitis team.

The vasculitis team said my blood tests were negative and they didn't want to start treatment until there was something more positive because the treatment was too drastic.

I had two needle biopsies of lung masses and evidence of lots of new things on my lungs on CT scans and almost always had haemoptysis, runny sore nose, earache , fatigue and also was said to have pneumonia on one occasion.

In desperation I saw a specialist privately who reviewed the scans, biopsies and blood tests and said I had Churg Strauss probably because of my long term asthma. He started treatment, prednisolone, the same day I saw him.

I started IV Cytoxan over a week ago and didn't feel too bad straight away, but it seems to be making the peripheral neuropathy, which started at the end of last year, worse also I feel a bit more fatigued, unsteady and have slight difficulties with co-ordination. The Dr is great and this is not a criticism/complaint about my current treatment. At my last appointment the Dr said sometimes you don't fit neatly into one category of vasculitis and there is a spectrum and that I am more likely at the Wegener's end.

I would really appreciate others' experiences of IV cytoxan and whether this is just something I should expect!

mb

[Pete]

Some people do experience fatigue while on cytoxan. Also, you'll need to stay well-hydrated to flush the metabolates from your system. You should also urinate when you feel the urge. Cytoxan is hard on the bladder. One of cytoxan's side effects is bladder cancer. You'll need to watch for blood in the urine.

Good luck and better health!!

[Bloom]

Thanks Pete, I know I've got to drink more!

[me2]

I didn't feel good while doing IV Cytoxan either. It would be good if you could be getting Mesna at the same time. This won't make you feel better but it does an amazing job of protecting your bladder from the toxic effects of the Cytoxan metabolites.
I have a very long story about this I will try and make short. I originally took Cytoxan orally 30 some years ago. I had to quit taking it after almost two years on it because of blood in my urine. 20 some years later I tried taking it again and suffered horrific bladder pain after just a couple of days of oral Cytoxan.

It was decided to switch me to IV Cytoxan and give me Mesna. I was so terrified I talked to everyone I could find - especially the infusion clinic nurses. I could not believe that something would protect me from the horrible pain that i got from just a small dose of Cytoxan and now they wanted to give me a huge dose.

Well, I did it and the Mesna was miraculous. I felt zero pain. It is not a pain medicine it works by not exposing your bladder to the toxic metabolites. It binds with them before they get to your bladder.

Cytoxan works relatively quickly (compared to Rituxan) I hope you start to feel better soon.

What kind of specialist do you have and how did you find them? This is often a great challenge for those of us with related conditions.

[mrtmeo]

The main difference between other vasculitides and Churg Strauss Syndrome (CSS) is that with CSS the patient has a high eosinophils.
I hope the ctx helps you feel better soon.

Did the lung biopsy tissue show vasculitis activity?
Have they checked your inflammation factors, such as c-reactive protein, rheumatoid factor, erythrocyte sediment rate and ANA?
Have they checked your immunoglobulins?

Some people are ANCA negative and still suffer from the disease.

[Bloom]

Hi me2, thanks for your helpful reply. Apparently I don't need Mesna because I am having under a gram of Cytoxan, weight and height related apparently.

My daughter found the Dr online, he is a specialist in interstitial lung diseases, including Wegener's. I do not have any kidney invovement. I started taking milk thistle because I read it can be helpful when you have chemo drugs but I 'm not sure if I'm doing the right thing.

Mb

[Bloom]

Hi mrtmeo,

Yes , I 've always had a raised oesinophil count but this was said to be because of my asthma, although my new Dr said it's vasculitis. Sometimes my ESR and CRP are raised.
The histopathology of my lung mass and my needle biopsies showed granulomatous inflammation and necrotic tissue. I haven't been good about asking about blood test results because I think I've been in denial as much as they seemed to be. I just wanted it not to be happenIng.

mb

[lag713]

Welcome MB! I wish I could give you some advice regarding cytoxan but I've only been on methotrexate. I'm sorry that you've been through so much and don't have a clear diagnosis yet. I hope the cytoxan treatment works well for you.

I think your doctor might be right regarding not fitting neatly into one category of vasculitis and there being more of a spectrum. My ENT recently cast doubt over my Wegener's dx and thought it might be Churg Strauss because of my late occurring asthma (key feature for Churg Strauss). I've read quite a few journal articles trying to differentiate between the ANCA-associated vasculitides and it seems like there isn't a good set of criteria out there for that purpose. I'll be seeing a new rheumatologist specializing in vasculitis to confirm the diagnosis soon.

I know exactly what you mean when you say you haven't been good about asking about blood test results because of denial. You will get there in time. It's part of the process. I have trouble with it sometimes and I've been diagnosed for over a year.

[LisaMac]

Yiiiiikes, I've had a pretty fair amount of IV Cytoxan, 750 mg once a month, and never even heard of them NOT starting with Mesna. I think they mixed some in with the Cytoxan as well. This drug is so toxic to our bladders that many people survive Wegener's only to lose their battle to bladder cancer. Please, at least ask about it. I was always infused with Mesna about 30 minutes prior to Cytoxan.

[mrtmeo]

Hi mrtmeo,

Yes , I 've always had a raised oesinophil count but this was said to be because of my asthma, although my new Dr said it's vasculitis. Sometimes my ESR and CRP are raised.
The histopathology of my lung mass and my needle biopsies showed granulomatous inflammation and necrotic tissue. I haven't been good about asking about blood test results because I think I've been in denial as much as they seemed to be. I just wanted it not to be happenIng.

mb

Hi mb,
I think most of us have lived in denial of this horrible disease and am sorry mind over matter didn't get rid of it.
It sure sounds like CSS from your description.
I wish I would have paid more attention to the CSS part in the studies I have researched.
However, I know that the quicker you get it treated the better.
Finding a dr in your corner that can act quickly when something shows up is key.
Praying that remission comes quickly!

[dawncelest]

I did a 6 month round of cytoxin from 10/13 to 4/14 for relapsing polycondritus with overlapping lupus. . It really helped my lung /airway function ,calming down the vasculits in my lung tissue . I was actually able to almost lay flat to sleep it was great but it wasn't enough to stop the inflammation /destruction of my cartilage and now i have developed vasculits in my left sinuse .. my pulmonologist, rheumatologist and now ENT sinuse specialist all agree i have ANCA negitive Wagners and will start a course of RITUXAN next week. . i guess cytoxin is the first line of defense? ? I was on the strongest dose advised for autoimmune diseases ,definitely felt pretty sick, tired and mild headache for about a week. Didn't really loose any hair just didn't seem like it grew as fast. . Hope you're treatment will be successful and ya feel better soon! Xo

[mrtmeo]

Hi Dawn,
Keep us updated on how well your rituxan works and I pray it goes really well.

[lag713]

Welcome Dawn! I recommend introducing yourself and sharing your story in "New Member Introductions" so the welcome wagon can greet you.

[Bloom]

Thanks Lisamac, I will ask next time because my consultant said I would have it every time. The nurse though said I didn't need it because I was only having 900mgs.
mb.

[mishb]

Hi mb (bloom) and welcome to the forum.

I'm glad you decided to write and let us know what is happening.

I have not been on Cytoxan so cannot advise but from what I have read on here over the years, it's a good WG hitter but not for long term use.
I would go with what Lisamac has said. Hopefully the nurse was correct, but no harm in asking again.

[Bloom]

Hi everyone, thanks for all your helpful responses. I have just had my 5th dose of IV cyclo and the side effects get worse with each one! They did start giving me mesna after the 2nd one, because it seems to affect my urinary output for a few days afterwards.
My lung symptoms are hugely improved but I still get painful earache and I still have a runny nose, does that ever go?