My two best friends – Meth and Acid

Methotrexate. The very mention of this drug makes me feel nauseous. For me, it is not so much the taste of it, but rather knowledge of what it can do to your body that causes me to become so apprehensive towards this medication. Perhaps it is my body’s way of telling me that this medication shouldn’t be ingested in the first place. Of course, I would rather not be taking this medication in the first place if it were not due to my set of unfortunate circumstances.

Alas, it is this medication that has helped control my inflammatory factors  (through varying degrees of sucess) these last few years. When a flare up happens it happens – even when you are taking your prescribed medication religiously. Methotrexate is one of those drugs in modern medicine that can be a bit of a double edged sword. It is well known for it’s use in chemotherapy in combating cancer cells, and yet it finds itself in the use of treating rheumatoid arthritis albeit at a different dose. Take this too often or at a high enough dose and you may find yourself in hospital….if you are lucky. My lecturers at university has never ceased to impress upon undergraduates the dosing regimen for methotrexate is usually ONCE A WEEK followed by its partner in crime, folic acid 24-48 hours later. Very rarely if ever is methotrexate taken on a daily basis.

One of it’s side effects (and I suppose it’s intended effect in some cases) is it’s ability to suppress your body’s immune system. That is to say it makes your immune system a little less active. Great for preventing flare ups and slowing the disease progression, but absolutely rubbish throughout the winter months as you struggle to not catch a cold! Needless to say, I have a love-hate relationship with methotrexate. And don’t even get me started on the mouth ulcers that come with taking this medication!! Not being able to enjoy eating the bountiful food of this earth is enough to send one into a blinding rage of frustration!

Because of methotrexate’s ability to suppress your immune system patient’s like me have to undergo a blood test every 4 weeks to monitor our blood levels. It can be scary and annoying for some people who don’t like getting stabbed with a needle on a regular basis. Not only that but to watch yourself bleed to fill the necessary vials that are to be sent off to the labs to be analysed. Taking methotrexate is a pain. There is no way to avoid the blood tests as they are necessary to monitor not only rheumatoid factors but also signs of methotrexate doing it’s job too well.

So how do I cope with all this?

The simple answer: stay healthy. Be that through diet, exercise, and not doing silly things that would put your health at risk. Seriously doing this will solve the vast majority of life’s health problems (You can thank me later).

The answers that you were probably looking for:

Disclaimer: Please double check with your doctor or pharmacist over the suitability of some of the recommendations that are mentioned in this blog. Everybody’s circumstances are different and what may work for one person may not necessarily be the best option for another.

For the blood tests I can’t avoid. Though saying that, I had unintentionally missed my last blood test appointment. It is important to stay on top of your blood levels so that your doctor can adjust your treatment accordingly should something flag up. Just have to be brave, and bleed for the sake of your life.

For the mouth ulcers, Bonjela is your best friend. Or alternatively you can use something like Orajel. They both do the same job. Both acts to numb the ulcer so that you can carry on with day to day activities with little pain and interruptions. The downside to this is that you may find multiple applications of this product is required throughout the day.

Some people have complained of diarrhoea whilst on methotrexate too. I have experienced this during the early days of my treatment, but now it would appear my body has adapted around that and is no longer an issue. If you aren’t one for waiting then I would suggest taking something like Immodium as a short term measure. This is a typical anti-diarrhoeal medication that you can buy over the counter and it essentially slows the passage of food through your bowels.

One of the doctors at my doctor surgery had suggested that from time to time I may take an extra tablet of folic acid to help reduce the side effects. I have yet to take her up on this advice as my side effects have not been so bad that warranted such action.

To be honest, the vast majority of side effects from methotrexate are bearable. The few times where you would be concerned is when the results from your blood tests are abnormal.

I am fortunate enough that I am only on two medication to manage my rheumatoid arthritis currently. I know patients that are taking a few extra and also at higher doses. Which goes back to the short answer I gave earlier: STAY HEALTHY!!

Reboot, reset, rheumatoid arthritis

Well…It’s been 3 years.

3 years since I started this blog, 3 years since diagnosis, and 3 years of inactivity on this site as though I had disappeared off the face of the earth. Let me first offer an apology at the very least to myself for not continuing at the very least a journal of my rheumatic life. I had intended to write so much more as a means to track my flare ups and I guess as a way to document my life to look back on sometime in the future.

So why have I returned to journal about this now? After the long absence what is the point? Honestly…I don’t 100% know. Perhaps I am at another low point in my life like I was 3 years ago at diagnosis and needed a platform to express myself? However, this time round, with (hopefully) greater maturity I want to take this seriously. I have learnt a lot in the last 3 years about living with rheumatoid arthritis. Heck, I have been living with it unknowingly for the majority of my childhood. I want to share with people the ways I live around it, ways that I believe have reduced the frequency of flare ups, and ways to improve my quality of life with it. Me and rheumatoid arthritis; we’re practically old (annoying) friends.

By way of an update, I am currently at the tail end of a flare up in my right hand. It first started on Saturday. You can tell when it is starting. It slowly creeps up on you like a dull ache in your joints that you brush off initially as stiff muscles, but when it doesn’t get better through out the day nor the next day alarm bells starts ringing. The gradual crescendo to a flare up is one of the saving graces of my experience with rheumatoid arthritis. It at least lets me prepare ahead for the week whilst the pain is bearable and the strength has not left my hand completely. Typically, my flare ups have lasted a week before I regain full use of my hands again. As mentioned in my last post, flare ups can be devastatingly crippling. I’ve had times where I lacked the strength to even brush my teeth!

My plan with this is to upate once a fortnight. I will cover things like:

  • Medication
  • Flare ups (if any), and how to cope with it.
  • Excercises
  • My past experiences
  • Things I found difficult or unchanged
  • Work
  • Travel
  • Planning for your future
  • And more stuff as soons as I think of topics.

For now, I will be cleaning up and updating the website. I hope this will help somebody somewhere at some point in their life. I welcome you to stay and read some of my older posts. Having re-read them myself, I didn’t realise how raw I came across with my feelings upon being diagnosed. Besides correcting for grammar and spelling I have left them as they had been 3 years ago.

Stay strong.

~OnlyRen

A moment’s reprieve. That is all but short of asking for the world.

When you have a rheumatic flare up, it can be agony! It can be torturous! Not in the sense you might think of when being in pain, but rather the limitations that this pain can bring about. The frustration at just being able to do the things you were so happily doing with ease the day before. The word ‘disabled’ comes to mind. A frightening word, and one that shouldn’t be used so lightly. I suppose that was being a little over melodramatic, but sometimes it really does feel that way. There have been days where I would struggle to even pull my clothes on, and nights where I could not sleep because the pain is keeping me up. So far I have been fortunate that my current dose of medication has been sufficient to control my flare ups. Also, when I do have flare ups I tend to recover quicker than before having started medication. That is not to say I enjoy taking my medication. It doesn’t taste foul per se, but rather I find it…unnatural. As unnatural as a knee bending in the wrong direction. After all, medication isn’t exactly the stuff of Sunday roasts nor Michelin starred meals.

These last 4 months have been a curious learning experience. I have traveled to Japan, I have served at youth camps, I have listened to numerous inspirational talks and shows in search for answers and direction in life, I have continued to work, and in the end I am still here. Hopefully wiser. As cliched as it sounds, these last 4 months have taught me to chase my dreams more and to basically just enjoy life. Very bog standard boring advice you hear all the time from the people around you. Except a lot of the times it seems like short term advice. Advice which doesn’t help you plan ahead if you intend to live longer than people expect. Honestly speaking, these last 4 months have taught me to be more pragmatic, more realistic, and to give my own future more consideration. I know that while my hands and legs can still carry me, I should pursue life’s joys like eating, travelling, meeting new people, climb mountains, do extreme sports, save the world etc.

But the most humbling thought came when you start asking yourself, what to do when my hands and legs can no longer carry me. What then? When I am writhing in pain and can barely pull my clothes on, what then…? When I can no longer work to support myself and my family, what then? What then…must I do now to protect my future when the present mind set is to borrow from one’s future to enable their current luxuries?

 

~OnlyRen