The Methotrexate Journey

Warning! This is a long post...grab a drink, pull up a chair and go...

I'm on a journey, going in a particular direction. Many others are on this route and like on any other literal journey we are all travelling in different vehicles. Mine is a convertible, all free and loose in the summertime whilst hood down and heating on during the colder months.

That's how this last four weeks have felt like. One day I'm dealing with the summertime and feel like I can conquer anything then the next I feel like I've been hit by a bus. Let me back up and share the turning I took for this route.

Four weeks ago today I had my Rheumatologist appointment in Weston. I get to discuss any concerns, ask questions, get the appropriate info and start the next phase of my care plan. It's never been a negative experience but it's been a long haul to get my body to the point it had to get to for this particular one.

You see, I started taking Methotrexate. It's the drug used for breast cancer patients and was proven to benefit Rheumatoid Arthritis so it's also a cross over drug. As you can imagine it's a very powerful drug and the side effects are varied and much dependant on how the individuals body responds. They averagely take between 4-12 weeks to kick into the system and while some arthritis endurers can go on to run a marathon, there are a few who it effects less or not at all. I guess that's the gamble with any medication.

I'm just going in insert here that the primary reason for this blog is not only to record (what I remember) of my own journey with this condition but to keep my family and friends afar updated instead of waffling on about it all over and over and/or loads of stuff on Facebook. Juss so you know ;)

At this appointment I knew it was going to be a little emotional and I was rather pleased it was Lindsey I going to see. (A Registrar who is funny, informative and very supportive) Whilst in the waiting room, I felt rather awkward, as I usually do when people are watching me on my walking sticks) but one lady kept catching my eye and I didn't quite know what to do, it wasn't a usual case of you catch someones eye as you glance around the room, it was full on watching me. I sat as far away as I could and slunk into my seat as much as I could! Sometime later after the initial check in assessment was done I waited in the rheumatology waiting room and lo and behold this lady sat right opposite me. I wasn't really in the mood to be all chatty and friendly, I was just about holding it together just lately. Lost in my thoughts about how I can snap out of it, stop being so self indulging and victim-like I caught this lady's eye just as she caught mine. She spoke and I about missed a heartbeat. I usually have a pretty good judge on a character but this lady caught me off guard. She was pretty, dressed stylishly and looked rather friendly... till she spoke. 'You on Methotrexate?' she asked. I smiled (always a good first move when you feel a little intimidated!) 'I hope to start on it today' I replied. 'Don't bother, you'll waste your time, lose your hope and find yourself back here wondering what you were doing the last 12 months'. I didn't know what to say to that. First off, I'm all too aware that I could try 50 different drugs before I find one that works for me. I also know that Metha may or may not work for me but heck, I'm not giving up trying! I felt tears fill up my eyes, I couldn't let this lady or the gentleman corner to me see this, I cannot will not cry in public simply because I've been a little too emotional lately. This is not the time or place. For goodness sake, I was getting cross with myself b/c just someone looking at me could bring me to tears and I didn't understand why. This lady said nothing else after this. Simply went into her appt and that was that.

The nurse who does the check in stuff is really sweet, she always chats to whoever's in the waiting room and she remembered that I'd started homeschooling Charley and asked how it was going. I thought that was amazing. As she went off I sat and stared at a dot on the wall, again welling up with tears. I fake coughed. Enough already!

Then the guy who sat corner ways to me spoke making me jump. Usually I'd be the one chatting on to others there, quite comfortably and freely. I'm just that way. Except today. 'This time last year I was like you are now, on crutches, struggling to lift one foot to put in front of the other and in constant pain'. I looked at him and was about to speak but he continued, I snapped my jaw shut. 'Methotrexate gave me my life back. If you go on that, don't look at the negatives, stay positive but stay with the bad days, it's worth it'. We began talking quite easily then. See, I know what's real in these things but I thrive on positive, I needed something to think positive about at this moment. We chatted for about half hour before he was called in to see Lindsay, in that time he'd shared his experiences and he'd allowed me to ask questions. It was really helpful and assuring. Then another lady came by and she was really awesome! Another little while and she shared so much with me that I walked away knowing where to go for the certain helps I needed and I'd left my business card with her to get in touch (she had said she'd like to stay in touch but at that moment she was called in to see Lindsay so I left the card with the nurse). Being just 45 and having such a debilitating condition is a huge pill to swallow. In so many ways I'm actually ok with it but lately another area of my life that I've kinda put on hold has been popping up that leaves me with zero confidence. Dating. I miss taking care of someone, someone to share every day things with, read the scriptures with and just go through life with. Some days I miss it more than others, some days I don't miss it at all. Having arthritis complicates things and it's not something many will want to take on. However, I plan to talk about this on another day.

The time came for me to go in and see Lindsay. We did the usual introductory jokes before getting down to catching up with the medical stuff since my last appt 3 months prior. At one point I felt the dreaded tears return so I apologised to her and said I've been like this for a few days and I had no reason why b/c I certainly didn't feel depressed or anything. She turned to me and just said 'I'm not surprised, you have plodded on for almost a year, never complaining, always smiling, asking for nothing and just getting on with it, I'd say you are long overdue for some peace'. Yep, I bawled at this point!

Checking the x-rays, reading off the blood test results she calmly asked if I was aware that I had secondary Sjogrens Syndrome. I kinda knew but was going to ask her if I needed a blood test to confirm it. My Rheumatologist, Dr Webber picked it up immediately after he checked the results.

The most common symptoms of Sjögren’s are:

• dry eyes and/or mouth
• feeling tired and achy

Many people don’t have any other symptoms, but the range and severity of symptoms can vary a great deal from person to person.

Eye problems

Your eyes may be dry and feel sore, irritable or gritty. Some people find strong lights can be uncomfortable, while others find their eyes become sticky with mucus.

Mouth and throat problems

Your mouth may become dry and you may have mouth ulcers, which can sometimes cause a sticky feeling in your mouth or throat. It may be difficult to swallow and your sense of taste may be altered. Your voice may be hoarse or weak, and some people have a dry cough.

Occasionally a very dry mouth can lead to other problems such as fungal infections (e.g. thrush), an unpleasant taste in your mouth and increased dental decay. Your salivary glands may also become painful and/or swollen.

Extreme fatigue

Fatigue (extreme tiredness) is one of the most common symptoms, and it can’t be cured by a good night’s sleep. Some people may also feel down or depressed.

As it's not primary the methotrexate will 'take care' of it so I don't need another medication to add to my growing collection. There are simple ways I can help myself with it so while it can be uncomfortable it's not, or shouldn't be anything traumatic, well that's if the other symptoms don't join me.

My blood count was a little low so it was advised I up my iron rich food intake but if that didn't work a dose of iron tablets would suffice if I just called my GP. She was going to recommend them on request when she sent the appointment summary to him. As yet I haven't asked for them but I think I may need to in my next order.

I was also given another jab. I've had it before and it helped my mobility for a week or two, I'd be glad of anything that mean't just standing up didn't reduce me to tears as it had done for weeks before.

Sulfasalazine is a type of drug known as a disease-modifying anti-rheumatic drug (DMARD). These drugs have the effect of dampening down the underlying disease process, rather than simply treating symptoms. Sulfasalazine is generally prescribed as Salazopyrin EN-Tabs. This is the brand name for sulfasalazine that’s specially coated so that it doesn’t dissolve quickly in your stomach.

Lindsay felt that as I live 20 miles from the hospital it was a lot to expect for me to start the Metha by jab each week so she gave me the tablets. Once a week I will take 4 x 15mg then at least 24 hrs later I take one folic acid.

Scientists have discovered that taking lower levels of folic acid with the drug methotrexate can limit the effectiveness of the treatment in patients with rheumatoid arthritis.

Still needing Naproxyn, 2 x per day, Mepradec, 1 per day and regular doses of paracetamol, 2 x 500mg every 4 hours and if needed up to 4 x 15mg codeine. It's a good job I use a tablet organiser for the week!

All the way home that evening I kept looking on the seat at the medication bag not really believing that I have the meds I've been waiting so long for, the ones that could be my magic answer, give me some mobility back, heck even a life! I kept grinning, shuffling in my seat and flicking the radio even louder to sing along to whatever song was playing! I felt alive.

That evening I decided to take the first Metha dosage. I waited to see if the nausea would happen. It didn't.

The exerpts are taken from Arthritis Research Uk.

I'll continue on in tomorrows post....

Debs