Microscopic polyangitis

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

[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.

[Hidden in reply to Mooka]

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 in reply to Hidden]

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.

[Hidden in reply to Mooka]

Thank you Mooka 👍🏼

[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

[Hidden in reply to michichgo]

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]

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.

[Hidden in reply to michichgo]

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 🙈🙈