Skip to main content
Tag

vasculitis

Vasculitis Treatment: Rituximab

By HealthNo Comments

The Vasculitis flare ups had been getting more and more frequent. More painful. So when my blood test results can back abnormal, I can’t say that I was surprised.

In the next month, I’ll be having two infusions of Rituximab, two weeks apart.

Let’s be clear about the aim of this treatment:

It’s to try to slow down the progress of the Vasculitis. Not to treat it or cure it. Just to slow it down.

What is Rituximab?
Rituximab is a drug that essentially kills certain white blood cells that make up the immune system.

Side Effects of Rituximab Treatment Include:

  • Fatigue
  • Nausea / Vomiting
  • Gastro Issues – loose bowels or constipation
  • Rashes / Hives
  • Hair Loss
  • Headaches
  • Swelling caused by a build up of fluid
  • Allergic Reaction – causing a high temperature and potentially difficulty in breathing
  • Weight loss
  • High blood sugars
  • Anxiety / Agitation
  • Dizziness
  • Mouth Ulcers
  • Sweating

But the big one is an increased risk of getting an infection. Infections that the body would usually be able to fight off, it won’t be able to. This means that any infection could become quickly life threatening and potentially kill me (if not treated promptly or if I am just unlucky).

It’s a scary time. But whatever I think and feel about it, its got to be done.

Hopefully write soon,

Antony

Share on Social Media:

Morris the Mould

By HealthNo Comments

Let me introduce you to Morris the Mould:

This last week I’ve seen Max Fax about the hole in the roof of my mouth. Their immediate fix is Morris. He reminds me of a retainer brace I once had when I was in my teens.I’m thinking about getting him googly eyes and a wig.

But seriously, although currently uncomfortable he covers the hole allowing me to eat and drink without things coming out of my nose.

But it doesn’t seal the hole by sitting flat against it as I hoped. This means my ability to talk and be understood is still impaired.

They are looking to surgically fix the hole and potentially rebuild my septum in my nose in January. Providing that:

  1. The hole doesn’t get any worse in the meantime – not something I really have control over.
  2. That I remain smoke-free.
  3. That I manage to improve my blood sugar readings to reduce the risk of surgical complications. I’m going on an insulin pump soon, which should help with this.

I’m disappointed that Morris doesn’t sit tight against the roof of my mouth, essentially blocking the hole so that I can speak normally. In every conversation, I am struggling to be understood. For someone that’s always relied on verbal communication this is heartbreaking.

My mood is low and I feel like Vascuilitis is winning.

Take care,

Antony

mental-health-wisdom-banner
Share on Social Media:

Health Update: Problems With Speaking & Being Understood

By HealthNo Comments

In a month, the hole in the roof of my mouth has doubled in size. The NHS has lost my Max Fax referral and it is now affecting my ability to speak and in being understood.

It has already affected my diet and fluid intake, causing me to loose weight.

So I had no choice but to go to my local A&E Department and request another Max Fax referral. It was so fustrating the staff not understanding me when I tried to explain myself. The only way I can be understood clearly is with yes and no answers.

Vasculitis continues to get me down and I’m still waiting to start on the treatment fot it.

Blog soon,

Antony

Share on Social Media:
×