Problems with Cyclophosphamide

[Dave_Buzzey_B]

I have had four infusions of Cyclo plus two infusions of mezine to help control my wergeners but each time I have had each infusion I have been very ill indeed feeling dizzy and sick as well as having absolutely no strength whatsoever this last for about four days, I also end up on the loo for number twos about ten times daily. I was put on Azathioprine but had severe reactions to it.So am now running out of options for treatment. Has anyone else had similar problems ? and what did you do. My consultant is absolutely brilliant but is also scratching his head, I was also put on another form of tablets but can't for the life of me remember what they were called these tablets put me in hospital for a week after a very severe reaction.

[Jean9618]

I used to take the anti sickness tablets for about three days after each infusion. They used to knock me out, but it's better to sleep than be sick. Also, I used to vomit when on Azathiaprine, but I found that when I split the dose (one in the morning and the other in the evening) I was fine.

[jeang]

Hi. Poor you, I know exactly how you feel. I too was very ill for a few days after cyclo but my Doctor prescribed Kytril tablets which are an anti sickness tablet and they did help a little - still felt awful though. Then was constipated with the tablets.Life is great isn't it. I now take Mycophenolate Mofetil (Cellcept) three times daily and feel fine.

Good luck and I really hope you feel better soon.

[vivdunstan Volunteer]

I was very ill for a week each time after Cyclophosphamide. I was prescribed strong anti nausea pills from the hospital, but only for the day of the infusion and the day after. I was sickest 2 days after each infusion. Once I was sick 20 times over a 12 hour period. I was glued to my bowl. We had to get the district nurse out several times to give me an anti sickness injection, although even that wasn't always effective. I'd have put up with all this if the Cyclophosphamide was effective, but for me it wasn't. My blood inflammation markers reached new record levels on it, and it failed to adequately control my disease.

There are very few things left for me to try. I have tried an awful lot of treatments over many years: Azathioprine, Ciclosporin, Mycophenolate Mofetil, Methotrexate, Thalidomide. My form of vasculitis is not one where Rituximab is effective, so we are struggling to find other options. I am now waiting for an urgent referral to a rheumatologist to approve a new biologic therapy.

The other drugs may work for you though. Ask your consultant about Mycophenolate Mofetil at least. All the drugs gave me bad nausea, vomiting, hair loss and diarrhoea. But permanent anti nausea pills helped with the nausea (apart from Cyclophosphamide, which was just too sicky for them) and also permanent anti diarrhoea pills. The hair loss, well, I have to cope. And I've been taking these drugs since the age of 25, and am still relatively young.

[2534 in reply to vivdunstan]

I wonder what your form of vasculitis is for Rituximab not to be considered effective? I am anca-negative and was constantly told by good specialists that the NHS would not prescribe RTX. I have since found out that is not true and had my first infusion of RTX on the NHS last month. let me know anyone if your are anca-negative and been refused RTX and I will give you the details. Cheers

2534

[vivdunstan Volunteer in reply to 2534]

Primary cerebral/CNS vasculitis. There simply isn't the research there to fund it, and I have been told that it isn't an option. Also I know a few people with my form who have tried it - usually outside the UK - and often it doesn't help them

What form of vasculitis do you have, because you can be ANCA-negative, but still have an ANCA-associated vasculitis which has been researched?

My form of vasculitis is not ANCA-associated, and doesn't get much research at all as a result.

But I am doing much better post Cyclophosphamide, so don't need Ritxumab at the moment.

[2534 in reply to vivdunstan]

I have anca-negative nerve vasculitis

[2534 in reply to vivdunstan]

I had the same response that anca-negative nerve (or CNS) vasculitis is too small a group to enable research but that is not relevant. It was contacting Dr David Jayne at Addenbrooke's that informed me and my then consultant. He was happy to receive a question from me direct but your consultant should do this on your behalf as mentioned below. I actually have the scientific and commissioning reasoning somewhere if you need it. Whether it will 'work' or not is a different matter . I wait to see!

[vivdunstan Volunteer in reply to 2534]

Many thanks. I'll bear it in mind, if I have a relapse and need further hefty treatment. But for now as I said I'm doing good, post my Cyclophosphamide infusions in 2012. With a longer-term view it looks as though that treatment was effective for me after all, and I've been able to drop many of my immunosuppression drugs, and lower my steroids. So doing good right now. Good luck to you too!

[SusanCh]

I had bad reactions to Cyclo every time, sick and feeling awful for days after. Azathioprine also didn't suit me. I had Rituximab and was fine after having that and it brought me into remission and enable me to come off steroids.I have it every 6 months.

Good luck.

[Hidden]

In view of the fact that you're clearly not tolerating cyclophosphamide, I'd be asking whether the chemotherapy is in fact showing any signs of bringing your disease under control. Either way, I'd certainly ask your consultant for a switch to Rituximab although I'm slightly concerned he's scratching his head and never mentioned the drug. If he hasn't any experience of the drug then I'd certainly be looking for an alternative consultant or at the very least, put him/her in touch with Dr David Jayne at Addenbrookes Hospital in Cambridge who will work with your clinician.

Hope you get some relief soon.

Healthy wishes.

[2534 in reply to Hidden]

Good advice!

[Derek]

Hi, without knowing otherwise I'm assuming that all replies to Dave are from patients with WG. Though I have CSS and had 6 mths course of Cyclo with Mezna protection then Azathiaprine maintenance tablets post diagnosis. I didn't have any bad reaction to any of these but after 18 mths I noticed my legs became weaker more quickly when standing. At my next consultation I mentioned this but my bloods were okay. However, the 3 mthly blood test at 21 months showed the Cyclo' wasn't working and my legs much weaker, I had relapsed. Another 6 mths on Cyclo/Mezna then Mycophenolate maintenance tablets, which I'm still on after 24 mths. No ill efects though currently I feel that I'm taking longer to recover after several fairly busy days, particularly my legs. The muscles seem weaker with more joint discomfort.

Without knowing which type of vasculitis folk have I feel I should include my experiences on the same treatment anyway. I think Martin's reply sums up your next course of action Dave.

[vivdunstan Volunteer in reply to Derek]

No, I have cerebral vasculitis.

[gsmith]

hi dave,ftve and a half years ago i tolerated cyclophossimid reasonably well but this time i fee fine for the first two days and then queasy tummy, headaches,weak, off balance,confused, really poorly,sweaty...the other morning as i got up i wonderd if death would be a better alternative. i dont think i can take another 6 months of it so i am going to push for rituximab, not hopeful though......georgia

[gsmith]

oh .and the number 2 problem plus an irritable bladder

[Jools52 in reply to gsmith]

I am starting the cyclophosphamide next month and the stories of multiple bowel movements fill me with dread as I already have Crohn's & have just come out of hospital after another episode and the dual antibiotics have left me housebound due to needing to be close to a loo as possible.

I don't know whether it's an irrational fear but by gut feel tells me not to have the cyclophosphamide. Thing is I don't think I have any choice now as my quality of life is so very poor and the emergency hospital admissions are getting to be often now. I've also had thoughts that death would be better. My GP says if you really feel this way then why not try to cyclophosphamide as it may just give me some real quality of life back.

The thing is that my vasculitis is not always there. It comes and goes or waxes and wanes. This is what is making the diagnosis so hard and also the fact that I've had UC then that diagnosis was changed to Crohn's and so the treatment for that is near enough exactly the same as for Wegeners/GPA that it may have masked my symptoms for some 9-10 years.

I've never been so conflicted in what I should do in my life. It's my lungs that are affected and my heart just suddenly started to beat at 100bpm around 7 years ago but echo and other cardiac tests have shown no damage....... yet. Just my heart beats faster than it used to.

It's so hard to know what to do and also if you have no family left. I've never felt so alone as in not having anyone to discuss this with.

[2534]

I had atrial fibrillation every second/third day after Cyclophosphamide infusions, never having had them before. Azathioprine sent my liver counts sky high. I tolerated mycophenylate mofetil (3g) for over a year and then nerve conduction studies (I have nerve vasculitis) showed substantial deterioration during this period. Am now on Rituximab despite having been told by good consultants that I could not have this on the NHS because I am anca-negative. This is untrue and I can provide more info if you need it.