#methotrexate

Note: this resource is written by a NZ-based organization and is primarily aimed at people in Aotearoa NZ (where the ozone layer home makes the risk of sun damage much higher) but this is still crucial information for anyone on medications for arthritis and inflammatory conditions.

"The interaction of inflammatory arthritis (such as rheumatoid arthritis, psoriatic arthritis and other forms of spondyloarthritis), medications to control arthritis and sun sensitivity is not always clear, and the reactions between medications and sun vary; • NSAIDs, such as Naproxen and diclofenac, can make you more sun sensitive as can Sulfasalazine/ Salazopyrin. Hydroxychloroquine can increase light sensitivity and vision changes. • COX-2 inhibitors like Celecoxib can cause irritation, with a breakout in rashes... • There is an increased risk of non-melanoma skin cancers (NMSC) for people being treated with DMARDs such as methotrexate and some biologic therapies. These medications also increase the risk of NMSC recurrence. • Methotrexate can irritate the skin where sunburn has occurred previously... • Long-term corticosteroids thins the skin, making it more likely to burn, and more susceptible to wrinkling and thinning of the skin (skin atrophy)."

Shaving my head feels easier to handle because it feels like an intentional choice and the level of hair loss is harder to spot

But when it's growing out it's so fucking obvious to me

And I truly didn't realise how much my identity and self expression was tied up in my hair. I changed it whenever I changed or when I needed to feel a certain way

Like a nice thing I could always say about myself is I had nice hair. It was something I always liked about myself and I was not prepared for how devastating it would feel to lose it when I started this treatment for my arthritis

I knew it would happen and when I brought it up people tried to assure me by saying it's better then my illness progressing and that's true so I would wave them off and say I knew and that it would be fine

But its not fine

My illnesses have taken so much from me

It's taken hobbies and arts

It's taken freedom and connection and brought isolation

It's taken away foods I love

It's taken my sex drive and confidence

And now it's taking my hair and I am breaking in so many pieces because of it

The saving grace is the caps I bought to hide my hair actually really suit me and reminded me that I love hats

Things I've already done:

Peppermint tea

Zofran

Mountain Dew

Ginger tea

Saltines

So anyways, he’s been pawning me off on his assistants which is fine with me. At multiple appointments I had mentioned how my low blood pressure was one of my most debilitating symptoms. He never wanted to put me on meds for that bc to him my low blood pressure wasn’t a problem. But it is a problem. It affects my vision. It affects my cognition. It makes it dangerous to drive and impossible to think or accomplish tasks. He literally told me to just drink more water and then talk to his assistants. For two weeks I drank so much water and electrolytes that I was vomiting it up into my mouth when I moved. I ate all the salt I could take and used compression wraps. Nothing helped. I had to set alarms to remind me to take caffeine before driving and make sure I was home before it started to wear off. A few times it wasn’t enough and I had to pull over and wait it out.

So today his assistant finally prescribed me Midodrine. Which is so laughable for anyone in the POTS community bc it’s usually one of the first things drs try (after the water & salt trick 🙄) but I’ve been going to the doctors for POTS symptoms since 2009 and have been disabled by those symptoms since 2014 and this is the first time it was ever an option. I understand that for a while my blood pressure was too high to consider taking Midodrine but I haven’t had high blood pressure since the summer of 2023 and it’s almost 2025 now? It’s ridiculous.