Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club 25y.o male from Australia

Hi all,

First time posting. I haven’t really ever posted in a forum, but have been struggling with my AS lately so thought it would be a good place to vent/share.

My story:
Looking back, I have had symptoms from the age of ~17yrs - 4x knee surgeries, worsening LBP since 18yrs old. These were all put down to sports injuries and mechanical issues at the time. Throughout 2010-2011, I had been having bouts of what I thought at the time was a recurrent piriformis strain. Then in December 2011 it had gotten significantly worse and not improving, so went to see a physiotherapist, I had significant pain with most of the hip and SIJ tests, so requested an x-ray as it just didn’t “feel right”. I had the x-ray the next day and was mms’d a copy of the report that night. As soon as I read “possible sacroilliitis” alarm bells went off. Long story short, in the space of one week I went from a presumed recurrent muscle strain to being diagnosed with AS. Pretty devastating news as I’m sure you’re all aware. Luckily I work alongside doctors and allied health so the diagnosis process was pretty swift. I’m HLA-B27 positive, grade 3 sacroilliitis on x-ray, degenerative facet jt disease in Lsp. But the worse was yet to come.

I’m not sure why it decided to happen during christmas, and just a week after my diagnosis, but I went into a massive flare up. Ridiculous pain all over. My hip flexors tightened up so much that I could only take 6 inch steps and wasn’t even able to lie flat. I’ve always been able to work through my pain, but this was the first time I had to call in sick as I couldn’t physically attend work. As a sole practitioner, this is very frustrating, and makes the debilitating effects of AS hit home even more. The flare up lasted about 2 weeks, my family said I looked like an 80yr old moving around. This was the most limiting and painful time of my life, the type of pain where all you can do is laugh because of how unbelievably bad it is.

My Rheumatologist advised that the main goal was to work towards getting on a TNFa inhibitor. To be eligible in Australia you need grade 2 or worse bilateral sacroiliitis on x-ray, elevated CRP & ESR (can’t remember the numbers), tried and failed on at least 3 diff types of anti-inflamm’s and be doing daily exercises for at least 3 months.

During all of this I was offered a place to study Medicine (post grad), so had to move to a new area. Luckily my original Rheumy new a guy where I study, who has turned out to be great. Following the flare up I managed ok, with chronic LBP and increases in SIJ pain with any impact exercise, but didn’t notice any changes with NSAID’s (Naproxen, Mobic & Celebrex). Eventually we arranged all the criteria and paperwork, and I was approved for Enbrel/Etanercept. Accessing this medication on the PBS (Pharmaceutical Benefits Scheme) here in Aus means that the monthly dose (4x injections) went from $1,700 down to $37. Very lucky for me.

I have been injecting Enbrel for 6 weeks now, and to be honest haven’t noticed a dramatic change. Maybe some slightly reduced stiffness, but have also been feeling a bit “different” and in more of a shitty mood a lot of the time. Symptoms have been worsening over the past few days (morning flu + increasing joint pain/stiffness). Fingers crossed it isn’t a flare up. I’ve had chronic eye irritation for ~6 months, but the ophthalmologist couldn’t find any visible signs of iritis.

My main worry at the moment is my future. I’m 6 months into post grad medicine, which can be challenging at the best of times. I have done very little extra study outside of class time, which I put down to laziness, but could be attributed to fatigue. When I get home at the end of the day I just don’t feel like doing anything more. I cruised through undergrad with cramming and minimal formal study, but that won’t cut it in this degree. If I don’t get my act together asap, I doubt I’ll pass the end of year exams. I’ve been considering if med is even a realistic possibility, considering it will only get more demanding from here on in.

So aside from venting my story. I was wondering if anyone had any tips for fatigue and motivation? I have been feeling pretty average lately in terms of mood, so maybe depression is possible. Has anyone experienced improvements in motivation and workload with anti-depressants?

Another weird thing I’ve noticed is red flushing of the face with as little as 2 alcoholic drinks since starting Enbrel. One time it was a very noticeable butterfly rash...people said it looked like I had lupus. Does anyone else get this flushing?

Thanks guys, its comforting to read others' experiences on here.

Hi Rob.

I'm overage for this particular forum, but I saw nobody had responded yet and thought I'd wave at you from "over the ditch" in NZ.

I'm sorry about your suffering and that the Embrel doesn't seem to be helping yet. I hope it kicks in soon - for some people the tnf inhibitors kick in straight away and for others it can take more like 3 months. Even if it doesn't work, there's still a really good chance you'll respond to a different tnf inhibitor - in NZ we start with humira and move to embrel next if necessary, not sure how it works in NZ.

I think I've found the fatigue more debilitating overall than the pain and stiffness - and it's hard to distinguish between the fatigue and depression as the symptoms overlap. I found that trying to do a bit of some sort of exercise if you can does help as does really pacing yourself as much as you are able. I've learned that there's a point at which I have to give in and rest or I'll just keep getting more exhausted.

Hi Rob! Welcome.

I flush with alcohol very easily too, but that may have always been the case for me. I've had this disease as long as I've been drinking, in any case, plus I'm prone to bright red flushing with exercise too. My mom, who shares my fair complexion, also flushes easily with alcohol consumption.

There's very little I could do for my fatigue when my inflammation was out of control. I blame the only classes I've failed in an otherwise stellar academic career on the rampant fatigue I had at the time. Obviously make sure you have a sufficient regular sleep schedule. Figure out when you're most alert and try to study then, if at all possible. Whatever exercise you can manage to do regularly may help. Also, talk to your doctors about the fatigue. None of the meds prescribed ever helped me with fatigue, but there are some potential medical interventions, including antidepressants. In the end, what works best for me is getting my inflammation under control. My fatigue is the first thing to go away when that happens.

I hope that the Enbrel does work for you. 6 weeks is too soon to know if it will work. Enbrel didn't work for me, but Humira worked very well for a while. I have to practice some "cautious optimism" with new meds. The anti-TNFs in particular have such potential to be life-changing, but each one has a fairly high percentage chance of not working for an individual, so it can be crushing if it doesn't work out if you expected it to. For me, I hope it will work but presume it won't. I was still bummed when Enbrel didn't work (though less bummed than when Humira stopped working) but not as much as I could have been if I hadn't protected myself emotionally.

Thanks for the replies.

I am kind of prone to occasional flushes, so maybe its just an exacerbation of a previous issue. But it does make me self-conscious to drink now, maybe thats a good thing!

As far as exercise, I gave up competitive sports in high school due to joint issues. Since then I've engaged in gym-based resistance training when motivated. Losing progress and muscle mass has been a bummer recently. I've been pretty lazy lately, aside from stretching throughout the day to free up my back. I need to get things back on track.

I have a big fear of failing med at this current rate. I'm not sure whether to defer for a year and get on top of treatment/have a break, or whether becoming a doctor is even realistic for me with AS? I haven't asked many people around me for advice because I don't think they really understand the impact of AS.

First of all, welcome aboard! I am sorry, though, that we are meeting you under these circumstances.

Unfortunately, I have not found anything to be helpful for combatting the fatigue. When the inflammation is out of control, the fatigue seems to be at it's worst.

As for whether to take a break or not, that is really a very personal decision, so I can only share with you what I have experienced. I am an RN and have undergone a large decline over the past several months. It has gotten to the point that I have had to take a medical leave of absence, and I am now beginning the process of applying for disability. There are many people that are able to continue to live a full, productive life despite having this disease. However, there are others that do not respond well to various treatments and end up on disability. Unfortunately, thus far, I seem to fall under the latter category. I was on Humira for nearly 5 months but did not appear to be responding to it. Eventually Methotrexate was added in, and at that point I was on weekly Humira. I still ended up with iritis, so my rheumy doubled my Methotrexate dose and discontinued the Humira with the intent to switch me over to Remicade. Unfortunately it is nearly 2 weeks later and I am still waiting for the Remicade. I now realize that the Humira was helping more than it had seemed, as I have had major worsening of symptoms over the past week or so.

In any case, hopefully the Enbrel will begin to take effect soon. It generally takes a good 2-3 months for these medications to take full effect, so give it some more time and hopefully it'll work. If after 3 months it is still not effective, then push your rheumy to try something else.