"Where there is creativity, there is hope." ~ Donna Karan

Rumours Of Rheumatoid

by - Wednesday, September 08, 2010

A continuation from the post My MRI

I lost count of how many times my rheumatologist mentioned 'rheumatoid' during my last visit. I was expecting to have another MRI scan scheduled for next month to confirm that suspected joint erosion in my left hand but seeing as the cause for my recent weight loss has been put down to rheumatoid arthritis, my rheumy decided that I would no longer be needing a repeat scan after all (well for now anyway!), phew! Boy am I happy about that! I was not looking forward to another painful MRI.

After the torture of having my joints poked, prodded, twisted and squeezed in every possible way she exclaimed "we are making progress, this is exciting!" By 'progress' she didn't mean 'your joints are improving, things are looking up';she meant that I was now just one step away from being diagnosed with a life changing, debilitating disease. In my head I was thinking "Exciting? Yeah for you maybe!" Sure it must feel great to be able to finally diagnose a patients pain after four years of uncertainty, and yes, I am relieved to finally be facing a set in stone diagnosis- a name for my pain, but exciting? Seriously. She also expressed how much she would love to give me the stronger drugs as she believes that I would do really well on them. All I could think was well hurry up and give them to me woman before I hold you at knife point, I'm in pain! I am a woman of patience, really, I am.

In order for me to qualify for stronger drugs I have to "tick all the boxes". According to my rheumatologist "you can't cut corners when it comes to confirming a diagnosis and stronger drugs require a legally binding signature which states that patients have ticked all the boxes and have met all the medical requirements"

As a result of my recent unsuccessful trial of Lyrica (I don't think I mentioned it before but that drug failed to give the results both my rheumy and I were wanting), the weight loss and an increase in pain and fatigue, my rheumy thought  it necessary for another trial of prednisolone at a lower dosage. I assumed that how well this trial worked (or didn't) has something to do with confirming rheumatoid arthritis (she didn't mention specifics) although, I didn't fully understand why this trial was necessary. I was hesitant to ask  because she tends to make me more confused. Why doctors always have a habit of turning simple answers into complex ones I will never know. I left that appointment with my head spinning and this is exactly the reason why I write so many posts like this- to try and make sense of it all.

In my confused state I began investigating on the internet and I discovered that prednisolone is the most commonly prescribed steroid tablet used in the short term treatment for those with rheumatic diseases. It is especially used during sudden flare-ups of rheumatoid arthritis and is used during the early stages of the disease to help slow down disease progression. I also learnt that it is used as  a complementary drug used to work alongside both non-steroidal anti-inflammatory drugs (NSAIDS) and disease modifying anti-rheumatic drugs (DSMARDS) which are the drugs that I have been on for over the past three years. In my research I noted too that prednisolone is often combined with these drugs at a low dosage to help bring immediate relief.

Okay, so now it makes more sense to me. If prednisolone brings me relief it confirms rheumatoid arthritis, but the confusing thing now is that the trial didn't work. After seeing no improvement I'm left with joint pain worse than ever before. So much so that the pain in my knees is making walking incredibly painful at times. The pain at night has become ridiculous, it's a living nightmare (betcha liked how I snuck that one in huh?). I can feel my joints changing, they feel different to move. They no longer feel 'normal' and they make a horrible cracking and sound when I move them suddenly at times. They have never done that before. Things are changing and I don't like it. I'm stressed, I'm frustrated, I'm tired, grumpy and I'm in PAIN.

I have so many unanswered questions. Why didn't the prednisolone work? Did I maybe just need a higher dose or is the joint pain too bad that it isn't responding and is in need of the stronger drugs? These are all questions that I am hoping to have answered at my appointment this week. Although, I'm a little worried as my rheumatologist is away and I'll be seeing a male rheumatologist who is seeing her patients while she is away. I'm in the worst flare-up ever and I have to see a new rheumatologist who has only been briefly informed of my four year history. This is going to be interesting. When I spoke to my rheumatologist on the phone last week, she said that this weeks appointment will prove interesting at this point in time to gain a different perspective on things and have more insight on the best way to proceed.

So everything is still up in the air and I am tired of the familiar feeling. I just wish they would hurry up and give me the damn drugs. I feel as though my days now are just spent surviving and I don't want that for my life. I want to be able to thrive.

image via google

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