Methotrexate Revisited

The last time I had to take methotrexate via injection, I was barely 7 years old and had a phobia of needles. My specialist, Dr. Foster, didn’t have the bedside manner of a teddy bear then like he does now. He decided the best way to break the news to me was very bluntly, with no warning to my parents, and when I started crying, he simply said, “Well, it’s either that or you go blind.” What a charmer. 

Neither of my parents wanted the responsibility of stabbing me with a needle once a week. Whether that was because they were afraid I’d hate them for it, or that they thought they’d fuck it up, I don’t know. Either way, the job fell on the shoulders of a poor young male nurse from Westside Hatzoloh who, every week, had to come to our apartment and deal with me locking myself in the bathroom until my father’s threats of not letting me eat chocolate for a month eventually coaxed me out. And even then, I would kick and scream until the whole ordeal was over. God, I wish I could find that nurse now and apologise to him. That must’ve been such a shitty job.

 This time around, though, I can’t lock myself in the bathroom to try to hide from my nurse… Because my nurse is my husband. And honestly, at this point, I have had to stab myself with needles so many times that it only makes my hands go slightly clammy. After three tattoos and seven piercings, I can no longer use the excuse of being afraid of needles.

 Actually, this time around, it was me who had the idea of taking methotrexate via injection.

 I’ve been taking it orally (as tablets) for a while now, as a support act for my main treatment drug, which is Humira. I used to be able to take Humira on its own, but it faltered a little a couple of years ago, and so methotrexate was re-introduced in order to give it a little extra boost.

 Of course, I realise now that to many of you reading this, these drug names mean nothing to you, so let’s backtrack just a little.

 Some cases of Uveitis can be treated topically with a steroid eye drop called Prednisolone. However, these drops, if overused, can cause cataracts and Glaucoma. So, in chronic cases such as mine, immunosuppressant drugs called anti-TNFs are introduced. These are systemic, and attempt to retrain the immune system to not be fucked up by beating it down with a figurative sledgehammer until it can barely do jack shit anymore, let alone send pointless cells up to attack your eyes. This is why taking them leads to an increased risk of infection (and why I get about 50 colds per year).

 If you know anyone who has had to go through chemotherapy, you’ll know that chemo has a similar effect. Cancer patients are left susceptible to all manner of nasty viruses and infections because their medication compromises the immune system. Well, anti-TNFs kind of do the same thing, albeit on a smaller scale. Methotrexate is the most aggressive form these drugs take for a condition like mine. It’s only given in small doses to autoimmune patients (anywhere from 2.5 to 30 milligrams per week – I’m currently on 10), but it is often used in larger doses for cancer patients. Even in small doses, however, the side-effects can somewhat mimic those of chemo. Methotrexate (and some other anti-TNFs) often cause nausea, dizziness, extreme fatigue, and even minor hair loss.

It can be taken orally up to a certain point, but at doses of 7.5 milligrams and above, it is recommended that it be taken as an injection. So, after a while of fighting it, I finally agreed last week to give injectable methotrexate another shot (no pun intended). The injections come with a better chance of the full dose of the medication having the desired impact, and they may also make it easier for the body to deal with the dosage, avoiding nausea and dizziness for the most part.
 So, a few nights ago, I gritted my teeth and resisted locking myself in the bathroom as my husband cleaned the injection site with an alcohol swab (the smell of which I’ve grown to loathe). I knew I had nothing to be afraid of – after all, methotrexate injections don’t even really hurt, compared to Humira injections which I’ve been doing for years and which give you the sensation of having a piece of glass underneath your skin for hours afterwards. But it was the memories that came flooding back as I had to face doing this all over again; the alcohol swabbing, the checking the liquid in the syringe to make sure it was that clear yellow colour; the counting to five to make sure the whole dose had been administered. It all feels like history repeating itself.

Not long after I realised I had flared again only a month ago, I lay awake in bed thinking to myself, “How is this flare up different to all other flare ups?” Of course my weird sleep-deprived thought process would lead me down the road of a fucked up Passover question instead of just letting me sleep… And I thought I could name five or six ways. But I realised soon after that, actually, it isn’t the differences that are driving me crazy. It’s the similarities. Like this disease has got me stuck in a loop. I was told so frequently by all my specialists that there would be an end to this one day. One day the disease would burn itself out.
 They estimated it’d happen when I was a teenager, but my teenage years came and went. Now some are saying it might disappear when I have a baby one day… if I can have a baby one day… because pregnancy hormones can change everything. Except methotrexate will stop me from having a baby for as long as I’m on it because of the severe birth defects that can occur as well as the risk it could pose to me. You have to be clear off it for 6 months before you can even try. I’ve been asked one too many times what would happen if I got pregnant by accident and just went off my meds to have the baby – couldn’t that maybe save my eyes? Couldn’t that put me in remission? Well, I’ll never know. Because if that happened, I would have to get it taken care of immediately, and wouldn’t get the chance to find out. It would be too dangerous otherwise.

So, just like every other time before, now I wait. I wait for the inflammation to die down so that, slowly, gently, with my hands metaphorically raised over my head like the fucking hostage of this disease I sometimes feel that I am, I can start tapering off the medication. Again. Round and round we go.
 If you would like to learn more about Uveitis, its effects, how to get checked, what research is being done to find a cure, or how you can help, please visit:

 www.uveitis.org or http://www.oliviasvision.org

Advertisements

It’s funny when people tell me my eyes are beautiful because I’d quite happily rip them out of my skull 

Relatively few people on this planet know what Uveitis is. It only affects about 1 in every 5,000 people globally, and so the pool of people who even remotely understand it is limited to those 1/5,000 people and their sphere of family, friends, and medical professionals. That doesn’t add up to much. It is nowhere near common enough to merit routine exams suggested by GPs, or to be mentioned as a disease afflicting a fictional character in a film or a tv show, or even to be mentioned as something that certain medications advertised on TV could be used to treat. (Humira, for example, is one of the most frequently advertised medications on American television and is often used to treat Uveitis, but is only advertised to treat Psoriasis and Rheumatoid Arthritis.) 

So maybe now I can expand the pool of people who know what this disease is a little wider. This won’t take long. Ready? 

Uveitis (pronounced YOU-vee-eye-tiss) is inflammation of the middle layer of the eye (the Uvea) caused by an overreaction of the immune system. It has nothing – I repeat, NOTHING – to do with UV rays. Two cases are hardly ever alike. Sometimes a cause can be identified, but in many cases, the cause is completely idiopathic. 

I know this because I have it. I was diagnosed when I was in kindergarten (year 1 to the Brits), and was too young to understand what was going on. I was too young to understand why I had to take steroid eye drops every 2 hours, or why I had to go to the eye doctor’s every 3 weeks, or why I had to swallow 6 tiny pink chemotherapy-grade pills every week, – or why my mother cried every time she gave them to me – too young to understand why my father had to restrain me, kicking and screaming, as I had blood tests done every month. And far too young to understand the implications. That I’d be living with this into adulthood. That the constant doctor’s appointments and medication changes and frequent infections caused by a suppressed immune system would become my normal. That I wouldn’t be able to clearly remember a time when this wasn’t my life. 

Honestly, it’s not so bad. I am not here for your sympathy, BELIEVE ME. Saying “I’m so sorry” is not going to magically teach my immune system to not be dysfunctional. I appreciate it, but that’s not what I want. I just want people to understand this thing. I know my disease does not define me. Most days, I get to live like I don’t even have it (because I am very lucky, and will explain why in a future post). I also do what I can to not harp on about it or “put it” on people… And okay, if you are reading this and ever went to school with me, you may be thinking that that is definitely not true, but the reason why I freakin had to talk so much about it in the context of school was because NO ONE KNEW WHAT IT WAS AND WOULD NOT BELIEVE ME WHEN I SAID I WAS SICK BECAUSE I LOOKED FINE. 

See? All caps. It was frustrating AF. 

So I guess I want to educate you all a little. To tell my story in order to spread awareness, as well as to give myself a little mental peace. (I have spent a lot of years refusing myself the opportunity to go over the whole thing, much to my psychological detriment.) And, considering I’ve just had a flare, I figured now would be a good time to return to blogging, and to start writing it all down. 

Note: this blog is not about to become exclusively about my eye disease. I’ll go back to being an annoying yoga blogger in a few weeks. Bear with.