Here I go again…
No I’m not referring to the classic Whitesnake song of the 1980’s 🙂
Boy am I showing my age or what!
I’m referring to my latest Health update (Health Update #7) ‐ as I sit here and relax @ Hutt Hospital getting the latest treatment for Scleroderma and Interstitial Lung Disease (SSc‐ILD).
What better way to welcome in Scleroderma Awareness month by having an infusion at the Medical Day Centre.
About 15 months ago I finished a course of 6, monthly cyclophosphamide (chemo) infusions to try and get on top of my health condition (predominately the Scleroderma). It seemed to work for a few months, before my breathing became a bit of an issue and bouts of fatigue started to really knock me about a bit.
I was placed on high doses of prednisone initially which helped for a while with the breathing, but as I started to wean of that medication the breathing issues would be exasperated. This has meant that I’ve had to stay on a mid-dose of prednisone to keep things in check.
Apparently the long-term side effects of prednisone are not overly beneficial for people and the specialists generally don’t want patients to be on it for the long haul unless absolutely necessary.
So for the past six months we, along with our respiratory specialist, have been exploring other options.
Unfortunately, due to insufficient funding for alternative drugs for my condition this has meant that we’ve had to source medications ourselves and fund them.
Also due to the complications that Covid could have on my system and any other cold & flu, respiratory and RSV’s that may be circulating at this time of year as we approach the winter season here in NZ this has had to be weighed up carefully, assessing the pro’s and con’s of what is out there.
Thankfully, our local pharmacist was able to source a generic brand of rituximab which should, all going well, last for 6-12 months and have a better chance of assisting with the ILD as chemo does.
Although this does come at quite a substantial cost. As if the price of cheese wasn’t bad enough at the moment 🙂
So today I am again hooked up and subjecting myself to having to be pumped full of medicine which may, or not work – But as I’ve said before we will give anything a go if it means I have a chance at a better quality of life.
Interestingly, many of the side effects of taking rituximab; back and body aches or pain, bloating or swelling of the face / arms / hands / lower legs / or feet, chest pain or tightness, and difficulty with breathing I already experience. Hopefully some of the others I won’t have to experience though.
It will however mean that for the next few months I will need to continue remaining extremely vigilant and careful about being in group settings and ensuring (as much as possible) that I don’t catch a cold, get sick or catch an infection, or anything of the like, as my immune system is in effect being wiped out and reset.
More tests will follow in 3 months to assess how things are progressing and to check if the medications have done what they need to do. If they haven’t we do have an additional more expensive option nintedanib. But I may need a small loan to access it as again this is not funded in New Zealand for people with my condition, even though it is used to slow the rate of decline in lung function in people with systemic sclerosis-associated interstitial lung disease.
I’m extremely grateful for the specialists and other health services that have been working with us as we navigate what we can do to ensure a better quality of life for me in this time and space.
It can be quite draining mentally, physically and emotionally as one becomes familiar with a whole new vocabulary and navigating a health system that at times can get confusing. Especially when one has to also adapt to doing things differently to what they are used to – I can also understand why some people get to the point of giving up.
Today I’m also especially thankful for the team @ Hutt Hospital Medical Day Centre that continue to look after me as I go through the process of having these infusions – you are legendary 🙂
The life and times of Perry... 