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Living with Psoriatic Arthritis (PsA)

Cold Turkey - Denial, wise or stupidity?


#1

I have been completely ignoring all my symptoms, pain and problems since June 2014. I just packed up and moved to another country, returned home and now I’m back in the UK again. I’ve been travelling around for nearly 2 years now, around Australia and the UK for my work. I’m absolutely loving it! But there’s a price to pay…

I have not seen a regular doctor since June 2014 as I don’t trust anyone but my hometown GP and rheumatologist. I have not taken any meds this whole time. So I’ve just been ignoring any little niggle or ache until I have a red, hot swollen joint that reduces me to tears. The reason I do this is I can’t stand the meds and once they start me on one thing, it becomes 10 things - a deadly cocktail in my opinion. I’d love to say I’ve been eating really healthy and exercising lots, but that’s a lie. Sure, I eat well most of the time and drink very little alcohol, but I do enjoy the occasional binge…

I guess I don’t want to be sick. Or be reminded that I’m a ticking time bomb. I want to bury my head in the sand and worry about it when my disease is bad enough to warrant some decent meds! I won’t take that MTX or Sulfasalazine crap that yeah, helped my joints a bit but made me so sick I could barely function. I’m rebelling and saying f@&k you, I don’t want that crap in my system when I’m already struggling. I just can’t justify taking that dangerous cocktail of meds again to feel half ok 2 days of the week.

So my question is - what on earth do I do? I don’t qualify for decent meds until my joints are already completely f$&ked - how does that even make sense? What’s the point then? All studies I’ve read say that commencing on aggressive treatment in the early stages of the disease is the only way to stand a chance to slow it down or go into remission. So why do we wait until our disease is irreversibly damage? Oh yeah - $$$$$$

I have no idea what to do next… denial is looking pretty sweet right now!


#2

I understand being worried about the drugs for PsA. They do seem very intimidating, especially when you are first considering what to do for treatment. There are a few things though that rarely get considered during that time. One is that the disease left untreated can casue far worse than just joint problems. For example, there is heart disease, problems with eyes and lung conditions. The inflammation isn't limited to the joints, but that's where the disease is most prevalent. It takes longer for the other complications to present themselves. I did a fair amount of research before starting meds, and was glad that I did. When you do your own research, make sure to not just read the box warnings for the meds; they include a lot of risks and warnings that don't make sense at all and aren't really correct. Like the increased risk of cancer with some bios? Well if you do your own searching, you'll find that the increased cancer risks are either strictly for one population of people (not us), or that the cancer noted during the study really isn't any greater than the average risk of developing cancer. However, anything that occurs during clinical trials has to go on the label as a risk. I find it frustrating that this stuff has to be included, because the only thing that comes from it is people too scared to reach out for something that could give them their lives back.

BTW, have you ever tried MTX as an injection?