An Update on my previous post. Just started Cyclophosphamide infusions.

[HappyLung]

Just an update on my previous post. Had my first Cyclophosphamide infusion on Monday, 4 days ago. First 2 days felt OK, just a little quizy at times, they give you anti sickness pills in case you need them. Metoclopramide. Last couple of days felt very tired and breathless, some stomach ache and acute anxiety. Been resting most of the time. Will it get worse with subsequent infusions or will my body get used to it? Thank you for baby comments.

[vivdunstan Volunteer]

I had 6 Cyclophosphamide infusions a decade ago, long into my cerebral disease story, but a treatment that had been ruled out before for various reasons. I found it really tough and was very sick. The sickness and other treatment side effect symptoms didn't ease for me. But then again didn't get tougher. I think you just have to take each infusion as it comes, and allow your body the rest it needs.

Metoclopramide is a good anti nausea drug, that I've been on twice daily permanently since 2006 to cope with how nauseous and sick the immunosuppression drugs make me. But it's not the strongest. There are stronger options, in particular Ondansetron that I was given during my infusions. It's more costly, so medics can be reluctant to use it. But if you find you are still feeling sick tell them in case they might change your anti nausea cocktail.

All the best. Although as I said the infusions were gruelling for me they stabilised my too active and progressive cerebral vasculitis like nothing else had. I am managing on a much lower cocktail of drugs since. I'd do it again in a heartbeat.

[HappyLung in reply to vivdunstan]

Thank you Viv. The first couple of days weren’t too bad, just náuseas for a while until I took a pill. Now day 5 , been very lethargic, slight tummy pains , yesterday again a little náuseas until I took a pill. Thank you for sharing and wish you the best.

[eh66]

I have had two Cyclophosphamide combined with Rituximab, and since the Rituximab alone. The only issue I had with the combined transfusion was constipation which I didn't get with the solo transfusion.

[HappyLung in reply to eh66]

Thank you, has the treatment worked for you?

[eh66 in reply to HappyLung]

I am currently pretty stable. I haven't had Rituximab since last December. I had mild side affects from that last time when my blood pressure dropped a bit. Whilst I am not vegetarian I try to eat a pretty healthy diet (aiming for 30 different veggies per week) avoiding a lot of fast and ultra-processed food, and do as much exercise as my body will let me.

[HappyLung in reply to eh66]

Thank you. You seemed to have achieved remission pretty quickly, Well done. Are you on any medication at all now, or just relying on 6 monthly Rituximab infusions? How are you feeling? Are you able to return to your normal activities? Best wishes

[eh66 in reply to HappyLung]

I take a low level antibiotic for sinus damage plus a Statin and Blood Pressure med which the consultant said have useful characteristics for Vasculitis. He reckons life style does play some part in my progress. I have pretty much returned to normal life; I guess some joint and circulation issues in fingers and toes. I am not sure when I get another transfusion.I watch my resting heart rate like a hawk, as with hindsight this was an early indicator of the onset of my Vasculitis condition. It went from mid fifties to nearly 90 last time.

[HappyLung in reply to eh66]

Thank you. That is very interesting, my current resting rate is in the 90s , like yours it used to be in early 60s. I have put it down to the Prednisolone making me anxious. I am seeing my consultant this afternoon, I shall ask him what he thinks. Take care.

[Mooka]

Were you given steroids as well? I found these lifted me as I recovered from the cyclophosphamide. You should let your specialist know if it’s making you feel really ill. I hope you feel better soon.

[HappyLung in reply to Mooka]

Thank you, yes I am on Prednisolone 10mg daily plus Co- trimoxizole daily. The worse thing about Prednisolone is the anxiety, I seem to be on edge all the time. Hopefully I will be reducing soon. Best wishes

[lovenothate]

Just to add that cyclizine is a much better anti-sickness than metoclopromide but also that ondansetron is better still. Ondansetron is what you should be given as standard when on Cyclophosphamide. That’s my experience anyway.

[HappyLung in reply to lovenothate]

Thank you, so far, 6 days into my first infusion, I am feeling not too bad, mostly tired and only a little nauseas, just a couple of times. Thanks for sharing and good wishes.

[Chris-Bromsgrove]

Like Viv, my ten infusions were 10 years ago so my memory is a little hazy. For me it was very much take every one as it comes. Side effects didn't get progressively worse or better, just variable. I was only actually sick on one occasion. I'm pleased to say I've not had any long term effects. Chris

[HappyLung in reply to Chris-Bromsgrove]

Thank you. 6 days following my first infusion of cyclophosphamide and not feeling too bad. Very tired and a little nauseas, just a couple of times. Thank you for sharing. Best wishes.

[Tiredtim]

Had six infusions last year no problems at all . Only side effects was that it made my hair curl 😊 18 months later not being happy with my consultant I had a private consultation with a specialist . He said I was prescribed drugs measured for somebody half my size and queried why I was still on steroids after two and a half years. When I asked my consultant to look at the specialist recommendations I was ignored. I have now asked to be discharged and waiting to see a NHS specialist recommended by John (thank you John) fingers crossed🤞

[HappyLung in reply to Tiredtim]

Oh dear, another delay to sort out your treatment. Let us know here how you get on . Best wishes