Methotrexate - Treatment Review
Starting at my most memorable treatment, I decided to begin with
Methotrexate.
*Facts
Methotrexate, also known as Trexall and Rheumatrex, is used to treat
immune diseases (that’s us) and Cancer. Yep, you read that right.
MTX is a chemotherapy agent, and immune system suppressant, and it works
for us because it slows down the growth of cells in the body that are growing
faster than they should. For us it is our skin, for cancer sufferers, it is,
well.. Cancer.
For the treatment of Psoriasis, it can be given in tablet form, or in
injection form. Throughout my fact checking I discovered in the US/ UK it is
also available in a PFP (Pre-filled pen)
In Aus, if you are lucky enough to qualify for the PBS, the most you
will pay for this is currently $37.80, however costs if paying privately are a
bit more at around $49 dose depending.
It is safe to assume that a drug used to treat cancer is going to give
you side effects, and while offered to us in lower dosages, we are usually on
it for a much longer time. This makes those side effects feel almost permanent.
A quick run down of the "listed" common side effects are;
- Nausea/ Vomiting
- Tiredness
- Increased risk of infections
- Low white blood cell count
- Mouth ulcers (due to the breakdown of the skin inside the
mouth)
- Headaches / Dizziness
- Blurred Vision
There are many more depending on where you look, but they seem to be the
key common ones. There are also many listed as "seek urgent treatment if
you are:" however, I’m going to leave those to your medical professionals
to share with you upon recommendation/ commencement of this treatment option
for you.
*My Experience
**Trigger warning**
This is a scary drug. With a quick Google one could easily be led to
believe you are looking at chemo, you'd be right.
And you know what? Up until last night, while google-ing for this post I
had no idea. However, it does explain to me why I was so sick. Why I had so
many side effects and why my mind has been made up for years, that I would
rather suffer with the pain of my conditions, than ever be in the room with
that drug again.
I mentioned in my "My history Pt #1" post that it is a
necessary evil, and sadly it is. It is a gatekeeper to all the good drugs. But
sadly for me, it turned me off seeking help for my condition for a very long
time, because I couldn’t go through anything like that again.
For me, it started out ok. I previously mentioned that my regular
specialist "Dr Derm" referred me on to another doctor for the use of
the treatment, as he himself did not want to be responsible for giving it to a
child. This is a big red flag my family missed.
I remember the first tablet I took, at around 10. I took it my shoving it in a piece of sausage. After a few months of taking it, I’d had minimal improvement, however it was enough to encourage all the surrounding adults to have me continue taking it. When the side effects started, it was nausea, followed by constant illness. Common colds lasting months and turning into chest infections or pneumonia. I remember always having tonsillitis. I was rapidly going off some of my favourite foods with huge texture, scent and temperature issues. If my meal sat for more than a minute and any of my food (esp cooked veggies) got cold - I couldn’t get or keep it down.
I remember the first tablet I took, at around 10. I took it my shoving it in a piece of sausage. After a few months of taking it, I’d had minimal improvement, however it was enough to encourage all the surrounding adults to have me continue taking it. When the side effects started, it was nausea, followed by constant illness. Common colds lasting months and turning into chest infections or pneumonia. I remember always having tonsillitis. I was rapidly going off some of my favourite foods with huge texture, scent and temperature issues. If my meal sat for more than a minute and any of my food (esp cooked veggies) got cold - I couldn’t get or keep it down.
I got bullied at school by kids who thought I was bulimic (ironically, the same ones who bullied me for my skin too..), and I guess I
kinda was, just not on purpose. I had to eat veggies raw, potatoes were boiled,
but not mashed with loads of butter to make them tolerable, and I loved cold
cooked cauliflower which pretty much went against all the other rules. I still don’t
really know why. I lost a lot of weight from this, and I was a kid who didn’t
really have spare weight to lose. That added to my already useless immune
system and I was always ill.
After this, I was switched to injections. This was all the same issues,
with the added bonus of being injected by a pissed off mum because every time
she did it I would be sick and waste what little dinner I got down. The smell
of alcohol wipes would set off my stomach and so I started using a towel to
cover my face. Then the smell of the towel would set me off.. And so on, and so
on until it felt like I couldn’t handle the smell of my own house.
Luckily for me, soon after that we started travelling around mainland
Aus. This meant that I could spend all day out playing until as late as
possible, and by the time showering etc was all done, my folks were too tired
to fight with me over getting the injection done. After this, they gave up
trying to force me and I gave up on trying new things. I've always accepted
this as my life, so my thoughts were why bother?!
After 2 years on MTX, it only ever cleared a few small patches. It was
always still itchy, and sore, and there. The first time I spoke to Dr Derm
after this was when I was 18. He mentioned going back on it and I said "if
that is what you have to offer, then there is the door".
14 years on, and I believe I still have long term issues from this drug.
We struggled with infertility for years. I have had multiple ovarian cysts,
several of which have burst. I will always be at higher risk of cancers, and
other potentially fatal organ issues, just from exposure to this drug. Looking
back, I wish I’d never had to touch it.
I know for a lot of people it eases their symptoms, and with very few
side effects! For them, that is amazing! But knowing now what comes very close
after it, you have everything to gain from asking what would be next and if
there might be a better fit for you. Don’t be scared to tell your doctor if you
don’t think the positives outweigh the negatives, because if I had done that,
who knows how much sooner I could have found what actually did help me!
I was pushed past the point of caring to help myself, mostly out of fear
caused by this drug. Dr's tend to keep you on ok until you push for great, and
I know now that it is always worth pushing.
Thank you so much for reading!
If you have any experience with this and would like to share, please leave a comment down below, and as always if you have any questions, I am always willing to answer!
If you have any experience with this and would like to share, please leave a comment down below, and as always if you have any questions, I am always willing to answer!
Much love,
Millz
Millz
xx
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