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!!

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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

09/08/2014 Killing arthritis with needles

I just came back from helping out for a week at a youth Christian camp. Fortunately, my arthritis had recovered in time for me to be constructively functional. I feel really blessed to be able to still carry on a normal life. One of the things that I was reminded of at the Christian camp was that time is our most precious commodity. There is nothing we can do to increase the number of days we are allocated, but we have no idea how many days we truly have. It is scary to think that despite knowing this we seldom act in such a way to make the best use of our time. I really urge people to stop and introspect on the things that really matter in their lives and make their own adjustments for a better life, and a better cause. Anyway, I digress….

Today, I had taken the first step to seek complimentary treatment. Despite seeing the doctors and the rheumatology specialist, I had not started to take the prescribed medicines. In fact I hadn’t been able to pick up my prescription due to being away from town to serve at the youth camp mentioned above. So before the doctors open again on Monday, mum had managed to book me in to see a traditional Chinese doctor today. I set aside my skepticism and gave it a go. It comprised of a brief chat so the doctor can gauge what the extent of my ailment and approximately 10 minutes of having needles stabbed into me. I kind of wished she had informed me that she was going to stab me with needles (I don’t handle being left in the dark too well). My advice for the people out there that intend to try out acupuncture is to stay still – very still!!! My mistake was to move my fingers to try and scratch an itch but totally forgot that I had needles stuck at certain points that make it very painful to move. Just stay still!!!

After the acupuncture, was this process of pinching/massaging certain other points in your body known as pressure points. This forms the basis of what is known as acupressure. That too was painful. The doctor grabbed my hand and squeezed it very tightly and twisted it in all directions. It hurts! On the plus side, it loosened up the joint and I could actually feel blood flowing back into my hands. She explained to me that my carpel tunnel was blocked/narrow which was restricting my blood circulation the rest of my hand. I noticed colour returning to my hand after the ordeal – a comforting sign. Though this didn’t restore full flexibility of my joint. I wasn’t expecting it, but the return of strength to my hand was a welcomed start! She didn’t prescribe me any herbal remedies but advised me to do self acupressure on my stomach daily for 5-10 minutes as a form of self care/preservation. Her explanation for my condition is that apparently there is too much acid in my blood and that is what is causing the inflammation. The most logical place that the body produces acid is in the stomach, hence the acupressure targeted at the stomach. Further advice on diet and general healthy living was given which are stuff that most people are generally aware of, but seldom act upon it. I really do need to take my own health more seriously.

I’ve been given a week to see how things go. If my joints are still stiff after a week, then I would need to go back. Otherwise, I am supposedly treated and the rest is self management. I must say that this was an interesting experience. I can’t say for certain whether this had worked, but I do feel better than I was. I shall see in a week’s time and hopefully no further treatment will be required. I would be interested to see a x-ray of my wrists now after all that twisting and squeezing. I am currently waiting for the health centre to book me an appointment at the hospital. Until then, I am wondering if I should start the methotrexate and folic acid treatment. I really wish I could avoid taking it if possible. Every medicine that cures is a poison for another.

01/08/2014 First day of the rest of a rheumatoid arthritic kind of life

It was yesterday. The day that finally gave a name to the condition that I have been living with since around the age of 12.

Rheumatoid arthritis.

The sero-negative kind – which translates to the kind where nothing shows up on blood tests. No abnormal blood counts. No rheumatoid factors. Just healthy looking blood (which I suppose is a good thing).

It took almost half a year of insisting, an xray, 2 blood tests, and a rheumatology clinic referral to get me to the diagnosis yesterday. This is the current attempt. I have made numerous previous attempts in the past (since I was 12) to see the GP about an unexplained pain in my wrists, but to no concrete outcome.

 

It would appear impossible, if not the very least far-fetched, to have been suffering from rheumatoid arthritis at such a young age. But I remember that far back when I first started to get pains in my wrists. Pain that would make it difficult to move my hands and even to clench them into a fist. At its worse, pain that would keep me from sleep. I remember at the time all I was worried about was the legibility of my hand writing. I remember forewarning teachers at school that due to my wrist pain, I may not be able to write very legibly. How silly and naive that all seemed now!  At first I had reasoned that the pain was due to carpel tunnel or poor posture as I was an avid computer user (mostly playing games). Though after yesterday’s consultation at the rheumatology clinic that hopeful justification of denial was blown out of the water.

So what now? What now indeed!!

To be perfectly honest, it doesn’t seem that much different to the day before. Just now there is name for this pain. It wasn’t the diagnosis that I had wanted, but not much I can do about that. Should I have lived a healthier life when I was younger? In every circumstance and scenario this answer will always be YES!  Will it have made a difference? A question that breeds hopeful speculations which are comforting, but not practical.

I suppose what I really should be writing down is how I really feel about this revelation in my life. Today, was like any other day. I did life as normal. A luxury which I am afraid that I might not be lucky enough to have in a couple of decades time. I am afraid. To give the reader (whomever you may be) some context:

I am 25 year old Male living in the UK. I studied Pharmacy and am a practicing pharmacist. I am not completely ignorant of these health implications/consequences, I know what medications are used in the treatment of rheumatoid arthritis and their respective risks and benefits, I’ve served patients who have been treated with these medication to varying results, I have done an entire degree about drugs and despite all that knowledge and experience…I am afraid (and still to some degree in denial). Rheumatoid arthritis to me has always been something that I would expect to get when I am older – MUCH older! The scariest part is that my condition isn’t even considered to be ‘early stage’. It is in fact quite late stage and has progressed to the extent where the flexibility in my wrists have been heavily compromised. The x-ray that I saw yesterday confirmed that the bones in my carpus (the bones between your wrist and where your fingers start) are all very bunched up leaving little to no room between each other as one may observe in a healthy hand. On a plus note my bones did form properly as I was growing up, but somewhere somehow as I grew up the inflammatory process of rheumatoid arthritis was taking its toll on the joints.

I don’t quite 100% know exactly what to do right now in terms of treatment. I am not too keen on the methotrexate and NSAIDs and steroids route. I understand their benefits and risks well which is why I would rather not have to go down that route if possible. I understand that RA is currently incurable and the best form of treatment currently available is to target symptoms and suppress the body’s immune system.  Family members have been suggesting that I try alternative medicine/ treatment (i.e. acupuncture, herbal remedies from various cultures, nutrition etc). But the health professional side of me is skeptical of herbal remedies owing to the lack of evidence in some cases and the possibility of non-standardised formulations and presence of contaminants. I need more time to research. More time to really think things through. I need help!

~onlyren