Microscopic polyangitis : Hi I’ve just... - Vasculitis UK

Vasculitis UK

7,864 members6,893 posts

Microscopic polyangitis

8 Replies

Hi

I’ve just received 3 infusions of cyclophosphamide at 3 week intervals for microscopic polyangitis for which I’ve had 2.5 years.

Since my first infusion I’ve had a constant dull ache pain in both my liver and spleen, I’ve also had 2 months of severe nausea/ sickness.

I’m currently on my 5th sickness tablets called domperidone which you can only take for 7 days.

On top of that this infusion seems to have flared 4or5 of my pre existing conditions. I either need shooting or some of you have some sound advice/guidance. Sorry for droning on.

Johnny

8 Replies
Mooka profile image
Mooka

I think you need to be telling your consultant you are getting these side effects. Maybe it’s not the right solution for you. Please don’t apologise for droning on, we understand what you are going through.

in reply toMooka

Thanks mooka. I’m hoping to see another professional for more advice, got a cold on top haha and had to re home my dog this morning as I can’t look after him properly 😭

Mooka profile image
Mooka in reply to

I’m so sorry to hear about your dog. I can imagine what a wrench that was. It is tough going through this. I went onto rituximab a few months after finishing the cyclo and found that easier to tolerate. If you have a cold be careful that doesn’t turn into a chest infection as your immune system will be lower.

in reply toMooka

Thank you Mooka 👍🏼

michichgo profile image
michichgo

Hi Johnny,I hope you're feeling less pain and nausea. As Mooka said, there is no need to apologize. This disease and its treatment are difficult to navigate.

I'm an MPA patient, diagnosed in 2013. I was initially treated with Cyclophosphamide in tablet form and I was prescribed Zofran and Reglan for treatment of nausea. (I'm in the U.S., for what it's worth). Try to stay as hydrated as possible, as dehydration worsens nausea.

You should absolutely reach out to your treating physician to discuss the nausea and pain. I can't speak to the pain as you described but please relay that information to your doctor.

Sending healthy and good vibes your way.

Michele

in reply tomichichgo

Thanks for the reply michi, vasculitis Uk have given me some good advice, for some reason other pre existing conditions are flaring. Any ideas ?

michichgo profile image
michichgo

Your body is undergoing a great deal of stress with the Cyclo infusions, so it's not entirely surprising that previous conditions are becoming problematic again. Again, advise your physicians.

I struggled with some random aches-and-pains (sometimes significant) while I was on Cyclo. I can attribute the issues to the Cyclo as the pain stopped once the treatment ended. I used to jot down a note or two about the pain, for example, severity on a 1-10 scale, sharp, dull, achy, length of time (one day, one week), etc.

Have you had lab work performed recently? It might give you some peace of mind to have that done, especially since vital organs are involved.

It's not an easy path but you have support from around the world (thanks to the Internet) and you can and should seek medical comfort and assistance as needed.

You got this, Johnny.

in reply tomichichgo

I’m waiting for ANCA and bone to come back michi, I’ve been feeling like this for two months since the start of my first infusion in the beginning of December 🙈🙈

Not what you're looking for?

You may also like...

Microscopic Polyangiitis

My mum was diagnosed with Microscopic Polyangiitis in May 2014 and initially was treated with high...
SandraMic profile image

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

Just an update on my previous post. Had my first Cyclophosphamide infusion on Monday, 4 days ago....
HappyLung profile image

Newly diagnosed Wegners with Polyangitis

Hello I am a 55 years old and in October was put on a ventilator for damage to lungs and sinuses...

Microscopic Polyangiitis

I was diagnosed with MPA in 2007. You have to experience its symptoms to understand just how...

Dad Microscopic Polyangiitis

Hi Everyone Dad has just finished his sixth course of Cyclophosphamide and has been told he will...

Moderation team

See all
Suzi70 profile image
Suzi70Administrator
JaneLE profile image
JaneLEAdministrator
Charlie_Harper profile image
Charlie_HarperAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.