PSA, Crohns, Bursitis & AS

General
1

Hi there, I am new to this forum as I have got to the point where I am not sure what to do next. I am a 36 year old and first had symptoms when I was around 16 by having flare ups of my right knee. After a couple of minor surgeries I was told that the cause was RA, which I later found out may not be exactly true. When I was 22 I had another knee flare up and was getting quite ill at the same time. The docs operated on my knee and could not tell me quite why I was unwell even though I was dropping weight at a rate of knots and couldn’t eat. I dropped to a low of 53kg (I am 6foot2 and usually over 90kg, to give some perspective!) and got to the point where I couldn’t even walk and had a golf ball size abscess physically growing out of my side in the same site as my appendix scar. One hospital sent me home 4 nights in a row giving me just pain relief (that’s another story) and when I eventually refused to leave they put me in an ambulance to another hospital where they operated on me that night to remove the abscess. They kept me in to diagnose me fully and I was diagnosed with Crohns Disease quickly followed by a bowel resection. I was good for a while after that.
Over the past 5-6 years I have been managing the Crohns alright with occasional flare ups but it’s the other symptoms that keep adding up that are getting to me. First I was getting psoriasis, mainly on my face and scalp, I now have an established beard as shaving was irritating my face to no end. Then the bursitis episodes began. I have had bursitis in my hip, shoulder and knees with the worst incidents requiring cortisone injections. I was referred to a Rhuematologist who went on to diagnose me with PsA and said that the RA was likely a misdiagnosis. At that time I was having particular trouble with my hips and scans revealed that I was also suffering from Anchiolising Spondialitis as well as Sacriolitis (had never heard of either!!) and told to try going back onto the Sulphasalazine that I was told wasn’t worth staying on previously.
I am now in constant pain and aching all over. My fingers are the worst but my shoulders and knees are constant. Every part of my body aches. Are all these things linked? Have I hit the shitty lottery and copped everything in one hit? I am just so frustrated and sick of being sore. What are your experiences and advice?

Thanks for reading this far, just feeling lost.

2

Welcome @Tim_N! As you’ve probably already figured out, if you have one autoimmune illness, you’re more likely to develop others. It makes sense, right? Autoimmune diseases are the result of the body attacking itself, and there’s lots of ways that this can happen. So with the Crohn’s diagnosis, a diagnosis of PsA isn’t surprising. It sucks, but it’s not surprising.

You’re asking for experience and advice? Aggressive treatment. You’ll start with a DMARD, such as the sulfasalazine that you mentioned. You’ll probably add in or switch to MTX if that doesn’t work. Your doctor may add in an NSAID if you’re able to take it. After “failing” two DMARD’s (non-biologic), you’ll be tried on a biologic. A lot of people do great on the disease modifying meds. I was on leflunomide and plaquenil for almost 7 years before starting a biologic. I improved a lot more on the biologic. Some people will experience a remission or near remission even. It is possible! We call this time the gap. You’ve been diagnosed, but haven’t yet found the med or med combination that makes a difference. It’s incredibly frustrating, and often quite painful. But it’s not forever.

3

Hi Tim,

It sure can be frustrating, can’t it? Feeling a bit like your disease (or wellness for that matter) is a moving target?

The good news is that even if the specific type of autoimmune arthritis is not yet certain, there are many meds out there that work for pretty much all types, and often for Crohn’s too. Are you taking any medication for the Crohn’s?