chronic conditions care courage consistency coaching

Use It (Consistently), or Lose It

Modern medicines do many things. Some cure conditions. Many do not (yet) cure, but help in other ways: medications may slow disease progression or manage condition expression (e.g. control/reduce inflammation).

Medication alone is not a silver bullet – it often isn’t enough on its own to retain or regain functional movement and quality of life.

I’m going to share my own practical experience as an illustration. Shoulders are only the example here – the concept is the important bit. Interestingly I had a conversation with my eighty-something year old neighbour this morning who concurs! He told me he has FINALLY learnt to do his rehabilitation exercises religiously, every day. But Jack (not his real name) no longer works: this is where my consistency can suffer!

As per my earlier article, I Sat in My Car and I Cried, 2021 was a bad year for me. I went through a period where everything hurt. Consequently, as I was battling so many bits of my body, my shoulder care slipped. That’s on me, my fault.

My shoulders had first played up in 2016 and with the help of a great physiotherapist and lots of CONSISTENT exercises I’d rehabilitated them. With my usual swimming and weight training, the shoulders had stayed good without the need for specific exercises daily. However, during 2021 because the rest of my body went into meltdown, I was limited in my swimming and weight training. The shoulders progressively worsened to the point I had an ultrasound-guided steroid shot in each shoulder in late October 2021. There was at the time fluid in both shoulders. Not good. I should mention at this point the shoulders may not be exclusively psoriatic arthritis, there is likely some osteoarthritis going on in there too, plus the constant irritation of mouse and keyboard work. Yes, I have a fantastic vertical mouse, but that is more for the wrist than the shoulder. The right shoulder (mouse shoulder) is worse than the left.

It wasn’t until after my new medication started working in January 2022 that I was capable of being consistent with my exercises again. But how consistent was I being? As it turns out, not very.

The last couple of weeks are good examples. Saturday I head to the gym and yes, my shoulders hurt for the first couple of reps, but I do the usual upper body routine: lat pull-downs, chest press, seated row, bicep curls etc. By the time I leave the gym I have no shoulder pain. Movement Is Medicine (point 3 in that article). Sunday I head off to the hydrotherapy pool and do more gentle exercises, some involving the shoulders. As of last week I’ve added a few swimming laps (slowly increasing as shoulders toughen up). Monday, back to the gym, but less upper body work as I did the workout on Saturday. By Monday afternoon, my shoulders are singing!

Then comes Tuesday. My first work day of the week. I’m busy. I make sure I get my step count in. No gym today. My shoulders, feeling fine, do not remind me to do my rehab exercises and I slip. Bad me.

Wednesday I might feel a twinge or two when I get up and think to myself, “Robyn, make sure you do your exercises today, you know what happened last week!” Do I? Maybe, maybe not. Depends how exhausted I am at the end of the work day. Note to self: do them before breakfast, you idiot.

By Friday I’m back where I started, with sore shoulders. Again, I kick myself (figuratively speaking).

According to my myotherapist, I am pronating my shoulders. Not surprising as a desk jockey, we have to be so careful and it gets harder as we get older. To counteract the pronation, I bought myself a PostureMedic which I wear under my clothes, not over as shown on the marketing materials! Ran it past my myotherapist for his approval. I don’t wear it all the time, as while it encourages the wearer to hold their shoulders correctly, wearing it isn’t strengthening the muscles required to hold the shoulders in position naturally. I use it as a prevention tool as I first start work to help me develop/maintain correct sitting posture at the desk when I am deeply engrossed in work and can forget about my body.

If you have ever had your shoulders taped by a physiotherapist, it is a bit like that, but something you can put on and take off yourself without the issue of wet tape on your back after a shower!

My goal this week is to be CONSISTENT! To follow my own advice to other people! To do my exercises every day and not lose the gains I make over Saturday, Sunday, Monday.

Modern medications are fantastic, but they don’t do everything. Often, there is no way of medications repairing past damage, for example. If there were, I wouldn’t have needed a total knee replacement! I need to take the time and put in the effort to get my shoulder muscles working properly again. Yes, age is also a factor. In three months I will be three years away from three score and ten – what used to be considered the nominal span of a human life.

I hope by sharing my failures at being CONSISTENT I may have encouraged you to be more consistent than I have managed recently.

Movement IS Medicine.

(Mostly) No Pain is FANTASTIC!

A few of my recent articles have been quite serious, so it is time to celebrate progress! After starting my new medication on January 14, 2022 I am happy to report I’m functional again! Friday I started Week 7 of my new medication and I very pleased with progress. Let’s hope it keeps working!

Readers may recall my list of painful bits from I Sat in My Care and I Cried. It was a pretty long list.

What was painful?

  • Shoulders
  • Ankles
  • All Toes
  • Left hip
  • Elbows
  • Wrists
  • Most fingers
  • Hands
  • Knees (yes, even the operated knee felt swollen, but not painful, the right was painful)
  • Neck
  • TMJ (jaw joint)
  • Left Achilles Tendon
  • I also had some plantar fasciitis

Today I can happily report all of that list has resolved except the shoulders and the plantar fasciitis. While I was on Prednisolone and the new medication together, the shoulders and the plantar fasciitis were barely noticeable, but as I tapered off the Prednisolone both reappeared. The plantar fasciitis is minor, only noticeable when I first get out of bed in the morning and hopefully will continue to improve the longer I am on the new medication.

The shoulders I am not so sure about. At my age and with prior injuries, I suspect the root cause of the shoulders may not be psoriatic arthritis (although it is undoubtedly not helping). The right shoulder is the worst of the two and that is the shoulder that has in the past suffered a torn rotator cuff. I’m doing lots of remedial exercises which will hopefully improve the situation (I’ll admit to letting those lapse while I was battling everything else). It is time to focus.

Other than that it is great to be able to do all these things again, pain free:

  • Fasten my bra (shoulders are at least allowing that)
  • Hold my full coffee cup in one hand (wrists)
  • Get out of bed without mobility aids (crutches or walking stick)
  • Sit down and stand up without immense difficulty (quads & glutes weren’t firing)
  • Be able to clench my fists (no, I’m not planning on using my fists!)
  • Turn taps on and off without pain (fingers & wrists)
  • WALK!!!!! (mainly ankles, although right knee & left hip had spasmodically interrupted)

That is not an exhaustive list, of course, but hopefully sufficiently illustrative! Functionally, I am almost back to (my version of) normal. I’ve been to the gym and done some hydrotherapy.

The only downside seems to be lethargy. I am quite tired. This may be temporary and may be due to my body adjusting to the new medication, the (tapered) cessation of Prednisolone and quite simply normal life things such as work-related stress. In order to give my body the best chance I have negotiated with my employer to drop my working hours to 24 hours per week. Initially this is for a temporary period of six months and then we will reassess.

The tiredness could possibly be my thyroid firing back up, although based on my last ultrasound we doubt that. Even so, that fact I do have an unhealthy thyroid cannot be overlooked. I’m due for monitoring checks again in April. I was, I gather, a little unusual as a radioactive iodine recipient. Many patients’ thyroid function becomes hypoactive after the treatment but mine never (not yet anyway) did. Both hypoactive (underactive) and hyperactive (overactive) thyroid conditions can result in tiredness/lethargy. Mine, theoretically, could go either way!

I am very concerned about the lack of strength training I have done over recent months as retaining muscle strength really is very important with this and many other arthritic conditions. However, I can’t rush back, I need to pace up again. That is part of the reason for reducing my working hours.

The shoulders, particularly the right one, may be being exacerbated by typing and mouse use. This is something that will also be reduced by reducing my working hours. Of course my bank account is NOT going to like less income, but that is simply a fact of life for those of us with chronic conditions: we have to make our bodies a higher priority than our finances, otherwise we end up with no finances at all as we lose the ability to work.

Overall, pretty darn happy! Of course, there are no guarantees. I’ll just enjoy the improvements while I have them! This gives me space to concentrate on rehabilitating the grumpy shoulders. I’m seeing my myotherapist regularly at the moment to assist.

Concurrent objective is to rid myself of the weight gain from the Prednisolone – there’s always something!

If you are interested in the fascia of the body, this is a great video! This is related to my seeking myotherapy treatment at the moment. More on this another day.

Underlying Conditions

In 2017 I wrote Why Do Our Bodies Attack Us? Like many of us, I wondered WHY did I have a chronic condition (otherwise often known as an underlying condition). Most of my working life has been about root cause analysis – naturally I apply that to myself! It is a bad move, I don’t recommend it, you can drive yourself nuts!

More recently, December 2021, I wrote Will Society Adapt? When? How? looking at society’s lack of acceptance of chronically ill people. I specifically noted I wasn’t looking at environmental impacts in that article, but we can’t ignore the impacts we ourselves, as a species, have created in the same span of the last 100 years or so. In that article I proposed society has yet to adapt to this new chronic state of health, and I referred to my generation as being the first generation of chronic people in any great number. I essentially attributed our survival to improvements in medical science keeping us alive, but why do we fall sick in the first place, in ever increasing numbers?

Regular readers will know I am a big supporter of the work of Julian Cribb, an Australian author and fantastic science communicator. He has recently released Earth Detox – How and Why We Must Clean Up Our Planet.

Every person on our home planet is affected by a worldwide deluge of man-made chemicals and pollutants – most of which have never been tested for safety. Our chemical emissions are six times larger than our total greenhouse gas emissions. They are in our food, our water, the air we breathe, our homes and workplaces, the things we use each day. This universal poisoning affects our minds, our bodies, our genes, our grandkids, and all life on Earth. 

https://www.cambridge.org/us/academic/subjects/earth-and-environmental-science/environmental-science/earth-detox-how-and-why-we-must-clean-our-planet?format=PB

I did refer to chemicals in my 2017 article cited above. I’ve also looked at plastics in Packaging Our Pills in Plastic which includes some videos – visit that article if you are interested.

So while some science is keeping us alive, our tendency as a species to misuse other science for selfish reasons is potentially, at the same time, making us sick. Why did I choose selfish in that sentence? Let’s take plastic as a classic example. When I was a child plastic was not really a thing. Shopping bags weren’t plastic. You didn’t put your fruit and vegetables in plastic at the shops. Glad Wrap? I do remember plastic bags for freezing meat. Pills were still in glass bottles.

But plastic was convenient and we started using it for EVERYTHING! Our wild life has been paying the price for years, but it seems we have too. We just didn’t want to acknowledge that fact because that would be inconvenient and if there is one thing the human species hates, it is being inconvenienced.

Of course, all of this ties in with our population growth: if there were less of us, we’d use less of all the “stuff”. Less MIGHT be manageable. That is a big “might”.

I’m going to turn 67 this year. In my first ten years of life I lived on a farm in the middle of nowhere, BUT I was still exposed to many chemicals. Sheep dip. Top dressing. Weed killers. All before the many safety tests and regulations of today were in place.

Later I moved to the city: car fumes, plastics.

“It would be naïve to believe there is plastic everywhere but just not in us,” said Rolf Halden at Arizona State University. “We are now providing a research platform that will allow us and others to look for what is invisible – these particles too small for the naked eye to see. The risk [to health] really resides in the small particles.”

https://www.theguardian.com/environment/2020/aug/17/microplastic-particles-discovered-in-human-organs

Yes, I have psoriatic arthritis (PsA) and a wonky thyroid (plus a few other things) and yes, there is a genetic component to PsA. What triggered the expression of the condition? After all, genes or no genes, my disease hasn’t been active all my life. What triggers any number of the conditions now prevalent in the chronic illness community, even if there are genes playing a role (in many cases, not yet proven)?

We have to stop blaming our chronic illness patients for being chronically ill, when it is very likely it is the path humans have chosen that has created many of us in the first place.

In our current situation in 2022, chronic illness has suddenly risen to the surface as a “reason” people die of Covid-19, so more people are aware of our existence. I myself am in four Covid-19 risk categories, the most dangerous to me being that I have an underlying inflammatory condition (PsA). We know Covid-19 can cause lots of inflammation: I’ve already got that going on, so I have this image in my mind of Covid-19 entering my body, running into PsA and my PsA saying, “Mate! Great to see ya! Let’s party!”

According to Professor Jeremy Nicholson, there are only about 10% of people in Western society that are “really, genuinely healthy”. You can find that quotation at 31:40 in the second video on Better Health, Together: Living with COVID in 2022.

I’m not suggesting 90% of us are at high risk of imminent death from either our conditions alone or our conditions plus Covid-19. We DO need to know which underlying conditions place us at higher risk of severe Covid-19 in order to be able to adequately take whatever additional protections may be necessary. The fact we are at a higher risk cannot be ignored. I see many on social media particularly suggesting the underlying conditions are irrelevant. They are relevant. We can’t ignore reality because we find it unpalatable. I most certainly think the politicians could separate the sad news of deaths from the statistics relating to underlying conditions. This is where the 90% really comes in – as in, it is potentially most of us!

As I am known to do, I have digressed – or have I? Covid-19 is perhaps a wakeup call. As a species we have created a state of ill-health as “normal”. Because we want our pollution and our chemicals and our plastics – but as Julian writes, we are paying the price. We’ve been somewhat quietly paying the price for a while, now Covid-19 has highlighted our vulnerability.

I know I have a chronic illness – many people do not yet know they have one. Conditions can take a while to be evident enough for the person to seek medical help. I am quite sure my PsA was active at least two years before I was diagnosed. In other situations, many people struggle to get a diagnosis of various conditions for years.

I am NOT suggesting that had Covid-19 come along in 1819, or 1719 that we would have been in a overall healthier state as a species. There were other considerations back then. However, we have changed our world, our environment, our living conditions, massively in the last 100 years. We’ve solved old problems, but created new problems.

I am a massive fan of science generally and medical science in particular, however I am also very aware of the human tendency to misuse anything we can if we see a personal advantage in doing so. Covid-19 gave us a shock: we were the Gods brought to our knees by the invisible.

We are not just destroying the environment of the planet we inhabit. We are not just destroying other species. We are possibly also destroying ourselves.

I Sat in My Car and I Cried

2021 was not a good year for me health-wise and it is time to come clean. In our chronic illness life, things don’t always go according to plan. Before I get into the details, I want to make VERY clear I do not in any way regret participating in the clinical trial I was on. It was wonderful, the people were wonderful, I was very well cared for. I am no longer on the trial, as you shall read, but that doesn’t mean the medication isn’t a great medication. I was just unfortunate. It happens. Hopefully I will have contributed to scientific knowledge in some small way.

So let’s get into it.

For whatever reason, during 2021 my medication stopped working for me. This could have been due to a variety of different reasons, we will never be able to prove the reason specifically for me so I am not going to discuss the various possibilities. It is not unknown: medications can just stop working for particular people. Of course, so much happened in my life DURING 2021, we did have a tendency to think I was flaring because of “stuff” happening. To just do a quick recap:

  • February: I suffered a fall, injured left ankle, right wrist (but saved my knee!!)
  • March: First Covid-19 vaccine (can cause flares in people like me)
  • April: Preparing for foot surgery (training work replacement etc, super busy)
  • May: Bi-lateral foot surgery followed by six weeks of inactivity
  • June: Second Covid-19 vaccine (can cause flares in people like me), plus I resigned from my old job
  • July: Started new job

So basically, lots of quite stressful events. That’s without considering the lockdowns which resulted in a lack of access to the gym and swimming and the various other concerns we all dealt with in 2021.

I did not want to accept that my medication wasn’t working (and that’s on me, it was my decision to persevere longer than I should have), for it had been wonderful. Best part was I did not suffer any side effects. However, at the end of 2021 it got to the point I had to accept the advice. A change of medication was needed. However, by now we were getting towards the holiday season and so appointment scheduling became an issue.

I’m leaving some detail out, but on New Year’s Day I almost took myself to an Emergency Department (ED). I didn’t for two reasons: A) If I went to my closest public hospital, I risked Covid-19 exposure, B) If I went to my local private hospital the ED fee would be money I really did not want to spend and I knew that in reality they’d likely manage the pain and tell me to call my rheumatologist on Tuesday. I could do that myself. So I soldiered on.

By January 4 it would have been easier to tell you what didn’t hurt, rather than what did. Even the entheses of my left hip were painful and THAT was scary as hips were one part of my body that had not previously been involved. What was painful?

  • Shoulders
  • Ankles
  • All Toes
  • Left hip
  • Elbows
  • Wrists
  • Most fingers
  • Hands
  • Knees (yes, even the operated knee felt swollen, but not painful, the right was painful)
  • Neck
  • TMJ (jaw joint)
  • Left Achilles Tendon
  • I also had some plantar fasciitis

That may not be a full list, but you get the picture. In the past, like when my shoulders had misbehaved earlier in 2021 (had ultrasound guided steroid shots in both shoulders), at least I could still walk, so I could still exercise, still move. Movement is not only my physical condition management strategy, it is also beneficial for my psychological health. Suddenly my lower body was so sore I couldn’t walk more than 500 metres. I couldn’t do upper body at the gym because my wrists wouldn’t allow me to lift dumbbells. I was struggling both physically and emotionally/psychologically.

I struggled to use a petrol pump. I couldn’t hold a coffee mug in one hand first thing in the morning. Turning taps off and on was painful. Getting dressed was a struggle. I needed a walking stick to get out of bed and move first thing in the morning. I could go on.

On January 9 I took myself to the hydrotherapy pool. It was a struggle to get into my bathers as my hands, wrists and shoulders were hurting. But I managed. Packed my hydrotherapy gear. Drove to the swim centre.

It was closed for repairs.

I walked back out to my car, sat in my car and cried. It seemed there was NOTHING I could do, not even hydrotherapy.

Of course, I’d been in touch with my medical team and January 11 I was officially taken off the old medication. I also took the rest of the week off work. Taking the rest of the week off work filled me with guilt. I love my job and when I’d accepted the offer I believed my psoriatic arthritis was under control. I didn’t feel fantastic at the time, BUT I was still only seven weeks post the foot surgery, so at the time it was thought the body seeing surgery as an injury was the cause of my flare state and I’d go back to my normal. So I was horrified to be taking time off.

I mention this for newbies to the chronic life and friends, family or colleagues trying to understand and be supportive. We, the patient, can feel guilty about stuff we have absolutely no control over. I can’t predict the future, yet I felt responsible for the fact I couldn’t have predicted the future! So then not only do we feel unwell, we feel guilty on top of it. Not a good place to be.

Bottom line, I’m on a new medication. This is my sixth medication since the start of 2015. So six medications in seven years. Many medications for many conditions, including mine, do not work overnight. Some take six to twelve weeks to “kick in”. In the meantime the patient takes a bridging medication to hopefully control symptoms at a manageable level, such as in my case Prednisolone. We taper OFF the Prednisolone as the new medication (hopefully) ramps up. I’d just ALMOST tapered off my last Prednisolone series, now I’m back on. So the patient doesn’t necessarily know for several weeks if the new medication is going to work for them. Will there be side effects? How much weight will be gained on the Prednisolone?

It can be natural for people to think along the lines of, “Well, OK, you are on a medication now, shouldn’t you be feeling better?”. No, it can take a while.

Many of these conditions are resolutely unpredictable, and THAT alone can be hard for friends, family and colleagues to understand. I get that – it is hard for ME as the patient to understand. I’m sure it is hard for the medical professionals to manage too. No crystal balls in this business. I wish there were. My rheumatologist painted me this lovely future scientific state where we will be able to personalise treatments, but we are not there yet – and probably won’t be in my lifetime. I also suspect such treatments may be rather expensive, but that is a WHOLE other discussion!

Today I actually managed to walk two walks totalling just over two kilometres. My left ankle is complaining a bit, but my right is OK. It is the furthest I’ve walked for weeks. I was back at work today. I’m on the improve.

All I can hope is the improvements continue. Pace UP again almost from scratch, don’t overdo stuff.

So if you or someone you know is struggling through a setback – please know you are not alone. It sucks. All I can say is keep persevering.

In closing, I would like to thank my manager and colleagues for their wonderful support. I am so grateful.

I’m Not Lazy

Neither are YOU lazy. The title above is stolen, with permission, from a social media contact’s tweet.

We’re not lazy, nor are we responsible for other people’s expectations of what THEY think we should or shouldn’t be able to do. Sidenote: often those expectations are based on our appearance. Refer to You Look So Healthy! for more on that.

There are four other articles you may like to browse as background material to this article:

One of the challenges we face is helping people understand the whole energy availability thing many of us struggle with. In the conversation related to the above tweet, J told me she had mowed the lawns, done the edging, walked the dog and cooked dinner. J has the same disease I do, psoriatic arthritis (PsA). While I don’t know or understand the specific expressions of many other chronic conditions, this is one I do understand. J couldn’t see me, but if she could have, my eyes nearly popped out of their sockets.

Other conditions can be very similar, but I will stick with the disease I know for illustrative purposes today.

On a great note, for PsA management, J had certainly been moving. Movement is Medicine! However, J had probably used up more spoons or internal battery than she had available. All that in one day would cost her later, as she well knows from experience.

Society conditions us, well before we get sick, as we are growing up: doing our share, work ethic, earn our way. We then place expectations on ourselves. We don’t want to be sick, we don’t want to let others down by not doing our bit. In the first few years, of course, in the back of our minds we think it is temporary. To understand a bit more on that, you may like to read Will Society Adapt? When? How? Even we ourselves have to adapt to our new normal.

PsA is a very odd disease. At its worst for me, I can wake up in the morning with painful feet, ankles, knees, wrists, fingers; maybe even throw shoulders and neck in on a particularly bad day. I may have to use crutches to get around first thing in the morning. I’ll be unable to turn a tap on. Can’t lift the electric jug, struggle to open the coffee jar. Put on a bra? Are you kidding? Pull on tracksuit pants? Yeah, right. That sort of thing. About 11:30 am I’ll be fine. Virtually pain free. My body will have de-solidified. I’ll head out for a walk, go to the gym and do a weight training session. Sadly 160 kg leg presses aren’t happening any more, but maybe again one day…….. I am a completely different physical specimen at 4 pm than I am at 7 am. I saw my Plan B GP on Tuesday (Plan A was away), who hadn’t seen me for probably a year. She said “You look great!” This was 6:30 pm. I said to her, “You didn’t see me at 7 am!”

This can be VERY difficult for our friends, colleagues and family to understand. You need rest but you also need to go to the gym? That doesn’t make sense! Actually it does make sense and the reasons why are discussed in more detail in the above linked articles, so I won’t repeat myself.

We know, we can see it in their eyes. The doubt. The lack of comprehension of the situation.

We know people think we are just being lazy (at best) or hypochondriacs (at worst). J is right, it is VERY exhausting to be constantly explaining it to people, yet we know if we don’t explain it, if we don’t share the knowledge, social understanding and acceptance will never happen. We use analogies: spoons, internal batteries, even daisy petals. Over time our nearest and dearest do start to understand. If they want to.

If we live by the rules of pacing our activities and energy consumption, many of us can achieve a fantastic very nice quality of life, given our disease. The problem is, to OTHER people our rules can make us look lazy in their eyes – or at least that is how we can feel.

I work six hours a day. I have just entered my eighth year of having PsA, so I’ve had time and practice to build my personal pacing skills. Even so, I still feel guilty some days that I’m not “doing my fair share” at work. I have to lecture myself along the lines of this is what I MUST do or I won’t be able to work at all. I did try full-time for a while in 2019/2020 – it was WAY too much. Recently, we had a systems issue at work. That day I worked ten hours – I was petrified I was going to crash before we solved the problem. Thankfully, I didn’t, but those feelings and fears are what we live with every day. We don’t need to feel others are judging us because we MUST do less than they do in order to regain and retain quality of life and independence.

No, we do not have to vacuum the whole house in one day. A room a day would do!

No, we do not have to mow the whole lawn in one day. J, are you listening?

Spreading out those sort of tasks DOES NOT mean we are lazy. It means we are protecting our bodies, our internal battery and our quality of life.

Today I was going to go grocery shopping. But today is also weight training day. The grocery shopping can wait until tomorrow. Both on the same day would mean I wouldn’t be able to do what I have planned for tomorrow. Grocery shopping will fit with my plans for tomorrow as the overall intensity tomorrow is less.

We are not lazy. I am not lazy. Don’t let yourself be guilted into doing things that break your pacing rules, whatever they may be for you. The goal is to balance activity and energy so you achieve consistency in your state of health.

18 Months In – Thank You Science!

My clinical trial rocks! No other way to describe it! If you are unfamiliar with the backstory, there is a series of articles, the first of which is A Clinical Trial – Patient Journey – Part I, exploring how I came to be on a clinical trial and the initial phases. In summary, I am on a clinical drug trial for a medication for psoriatic arthritis (PsA), a condition that affects an estimated 24 in 10,000 people (0.24% of the population).

I am now 18 months down the track, so thought it time for an update on progress!

No sore entheses! This is fantastic. The enthesis is the connective tissue between tendons/ligaments and bone. PsA rather likes entheses, unfortunately.

At my last injections I had ONE, let me say that again ONE, toe joint that glowed faintly when all the toe joints were tested. That’s a major improvement from 20!

No sore finger/thumb joints. Not one. The base of my thumbs used to be really painful. I am also no longer splinting my fingers at night on a daily basis to prevent waking up with my hands locked into fists. I find I may have to splint them about a week out from my next injections, but not always.

Left and right index finger splints

My shoulders are fine. Admittedly I do a series of exercises to maintain my shoulders which have helped considerably, but the reduced inflammation is fantastic.

My wrists, which would flare regularly, have not flared for months. I can’t remember the last time.

There has been no progression to other joints. There was no hip or elbow involvement, for example, and there still is no hip or elbow involvement.

My skin in 100% clear. Yes, 100%, clinically assessed.

My finger nails are back to being perfect, although two toe nails persist in having white spots and and the tell-tale ridges across the nails. But they no longer crumble off.

No dactylitis (sausage fingers/toes) this year.

I have lost the 20 kilograms I’d gained with all the various medication changes prior to starting the trial.

Energy levels are much improved. I won’t say back to normal, but much better than previously. This is evidenced by the that fact I am back working full-time. No, I did not take on a senior management role, that would have been too much, but I’m working.

The dreaded brain fog is also much improved, as I have noted before. I don’t like the term brain fog, as readers may already know, but everyone is familiar with the term.

No adverse side effects! After my previous experiences, this is yet another fantastic aspect for me personally.

At my latest appointment, one of the staff commented, correctly, I was lucky I don’t have any joint deformities, especially of the hands. I put this down to early medical intervention – I was lucky to be diagnosed early in my journey.

I’m not cured. I am as close to being cured as I probably ever will be and that is a great thing. The medication, risankizumab, isn’t the only weapon in this war though. I am, as is well known, I firm advocate of Movement is Medicine. I keep my muscles strong. I still wear my “special” shoes to help my back. I had a total knee replacement this year, osteoarthritis – not something risankizumab can fix. Overall, I am very happy with progress.

A Clinical Trial – Patient Journey – Part V

Catching up?

Apart from draining trial participants of blood every visit, as I have mentioned before joints and entheses are assessed for improvement – or not.

For my first 26 weeks of the trial, the period we now suspect I was on placebo, there was no real change in my hands or feet. Other areas are assessed but for illustrative purposes, I am only going to talk about hands and feet. Many of the joints subject to assessment, such as hips and temporomandibular joints (TMJ), I have not had problems with, so not much point in talking about them!

Now if you don’t know how many joints are in your fingers and toes, let me tell you – quite a few! They test 28 total in the fingers and 20 total in the toes on my trial.

While my finger joints were never my major trouble spot, my feet were a different story. Every single joint would light up with pain when assessed. In some cases, big red siren type lights.

Four weeks ago there was certainly a reduction in the number of joints that lit up and most of the ones that did react to assessment, were as if the dimmer switch had been activated.

Today? Today only TWO toe joints lit up and even those were a faint glow. That is two out of 20!

The hands? Not one of the assessed joints lit up. NOT ONE! Yes, I am still splinting those two trigger fingers at night, but that is not a finger joint issue and they are also improving.

One of the other aspects I am very pleased about, given my past medication experiences, is NO SIDE EFFECTS! Obviously there can be clinical side effects from medications that I, as the patient, would not necessarily recognise, which is one of the reasons they take all that blood. Are my kidneys OK? Is my liver still happy? But from my day to day living experience I’m not having any side effects like I had with the four previous treatments I have been on.

From here on in, I only visit the research clinic once every twelve weeks. The hard part is over. I don’t expect to have any really news to share for the remainder of the trial, providing everything continues to go well. Yes, there is a possibility I could stop responding at some stage in the future, but I’ll cross that bridge if and when it happens.

That just leaves me with the problem knee, but there have been announcements this week surgery will be commencing again and joints are on the list so I am hopeful that will also be resolved ….. shortly. I’ve already been on the phone to my surgeon’s office, so I’m waiting for a date!

I am very happy with the results. I love the team at Emeritus Research, it really is like dropping in to see good friends. Very professional good friends: as a trial participant I feel very well cared for and valued. Great atmosphere. Just watch the coffee machine if you like flat whites, it can overflow!

Looking After Your Shoulders While We #StayHomeStaySafe

My apologies for the colour quality! With all this self isolation, I am equipment restricted! I also apologise for confusing forearm and upper arm, but you get the drift!

Please note these little videos are meant as ideas and suggestions while we are all in isolation or quarantine at home.

Bear in mind I have not assessed you personally for the appropriateness of these exercises for you. Only attempt these if safe to do so.

A Clinical Trial – Patient Journey – Part IV

Catching up?

I last wrote in September about my clinical drug trial. So much has happened since! I did reach the conclusion, despite how good I felt by September, that I was on the placebo for the first 24 weeks. So why did I feel so good in September? To work that out we have to look at my specific treatment history. I’d failed three DMARDs when I started the drug trial and had just started a fourth DMARD. The rules of the trial were we could stay on up to two DMARDs during the trial.

Having adverse reactions to medications is not fun and while in each case I typically cite one prime adverse reaction, in reality there are probably other issues going on with the body as well.

Timing is the other factor in my case. Due to the adverse reactions to the DMARDs, by the time I started the trial my treatment regime had been a bit stop-start. To recap, November 2018 I stopped DMARD #2, did three month washout. Tried DMARD #3 in February 2019, but only lasted five weeks due to adverse reaction. Another small washout period, started DMARD #4, on a low introductory dose, in April 2019. By the time I started the drug trial in July 2019 I was really recovering from a lot of adverse reaction events and had not had continuous, effective treatment for almost eight months. It is therefore, to my mind, not surprising that I felt better in many ways! I was, if nothing else, recovering from the medications my body had not looked upon too favourably! When I wrote Part III (link above), I was also still on that low dose of DMARD #4 which may well have been having a positive effect on the psoriatic arthritis.

However, DMARD #4, like the previous three treatments, also resulted in an adverse event for me. My, shall we say, gastrointestinal activity started to go through the roof. I won’t go into details, I think you get the picture! It was not at all pleasant and worsened over time. After discussions with my gastroenterologist, rheumatologist and the research team we recorded yet another adverse event and I went off DMARD #4.

Around the same time the left knee, the topic of my last article, was starting to make its presence felt. I also developed trigger finger in late December and started splinting my fingers at night. I got different colours so I’d know which one was for which finger! These splints are from an great occupational therapist. So I had a few things going on.

While I could still fit my runners on, my feet were still slightly swollen. I developed a few clearly visible small nodules here and there: one on a pinky finger, one on a second toe and one on a big toe. These were new, small, and bothersome. The feature photo shows the finger one, completely gone now. The toe one below would now not be noticed by anyone else, I can just see where it was.

The joint assessment at my October trial visit still lit up all my toe joints and some finger joints. There really wasn’t any improvement in that joint assessment at all, even though I still felt better in many other ways as noted in my prior articles.

But what about the skin? Yes, it remained 100% clear. If I was on placebo AND off all DMARDs, wouldn’t my skin possibly flare? No, I don’t think so for the very simple reason my skin had never been a problem in the past, it came to the fore in a big way as a result of DMARD #2. Off that specific medication, my skin ultimately returned to normal. The timing just happened to coincide with the clinical trial. It was easy to look at my skin improvement and think, YAY, I got the good juice!

The bottom line is, by November/December 2019 I was saying to my doctors I think I’m on the placebo. If that was the case, then January 2, 2020 was to be my first active intervention injection. I certainly didn’t have long to wait!

After the January 2 injection, on the morning of January 16 I was vastly improved. I specifically noted the date in my symptom diary as I woke up feeling a switch had been flicked. I actually had to considerably tighten the laces on my runners! My feet had really shrunk! The trigger fingers had improved dramatically during the day. My shoulders, which had been grumpy, were also feeling better. Both knees were very good (bearing in mind the left one had had the rescue steroid shot in mid-November). I was very pleased. I was, if you like, now doubly improved!

Then we reached the end of January and the osteoarthritis in that left knee went haywire and I ended up in hospital (detailed in my immediately previous article).

I was therefore a week late getting my loading dose because my rheumatologist wouldn’t let me out of hospital to go and get it, even though I promised to come straight back! Also, due to the hospitalisation, the clinical trial medical monitor had to give clearance for me to continue on the drug trial. Clearance was granted, much to my relief!

I am due for my next injection in late April (injection every 12 weeks after the loading dose).

Aside from my osteoarthritic knee, my psoriatic arthritis is definitely improving. I am still splinting those two fingers at night but the hands are fine during the day. In fact the right hand is fine all the time now, just the one finger on the left hand is still an issue, but definitely improved. The small nodules I referred to above have almost disappeared and at the last two joint assessments, each time less joints have lit up. In fact, at this month’s assessment, I think from memory only two finger joints lit up (very slightly) and only about half my toe joints and even then they were much less painful than before. Shoulders are fine. Of course, my CRP was back up in early February (don’t have March results yet) but we’ve attributed that to the knee inflammation, which was pretty gross at the time.

Comorbidity makes things challenging. Like my CRP rising due to my osteoarthritic knee, even though my psoriatic arthritis is coming along nicely. Then there is the theoretical question of how much do osteo and psoriatic play together? I have this image of little psoriatic soldiers being sent on reconnaissance missions around my joints. They find the osteo damaged knees and the Sergeant-in-Charge decides it is a great place to attack where the defences are down! Not too sure what my doctors think of my visualisation but it amuses me! Obviously my knee didn’t get that bad or the cyst develop overnight – the aforementioned eight months of stop-start medications probably was a contributing factor and if I had been on placebo, the two conditions really had free range to play together.

One thing I am noticing is with the self-isolation required by Covid-19 AND the fact I can’t get out and walk due to the knee, I am missing my usual swimming and weight training. I’m doing remedial type exercises at home, but it is not the same as being in the gym. Medications don’t do everything, exercise is still a major part of condition management.

Oh, and STAY HOME: Social Distancing is critical!

A Clinical Trial – Patient Journey – Part III

Catching up?

Post-Baseline

Nothing much changed in the first two weeks. Of course, I was expecting NOTHING to change, I was convinced I would “win” the placebo arm. I still might be on the placebo: psorasis and psoratic arthritis are funny conditions, they can go on holidays and they can roam around your body.

By week three my skin was starting to look different – but then again I see my skin every day, it is hard to detect subtle changes. Work colleagues mentioned my upper chest looked less angry. This was interesting, as it fitted with my own thoughts.

However, my boobs were itching me. I don’t just mean a little itch, I mean if I could have, I’d have divorced my boobs. Let me put that in context: I’ve always considered my boobs a better anatomical feature than my legs. If the choice was between a long but low cut dress versus a short dress with a high neckline, the long, low cut dress won every time. But I was ready to get rid of them, especially at night.

On the plus side however, I was sleeping slightly better. Although psoriatic arthritis is a systemic condition known to affect other organs, you will rarely, if ever, find urological symptoms mentioned. Yet after a lifetime of sleeping a sound, uninterrupted eight hours a night, I started waking frequently. This was SUPER ANNOYING! Also the disrupted sleep doesn’t help fatigue levels. Ah, you see – THAT’S why I slotted in that fatigue article! By Week 4 I was not waking as often – this mirrored my experience on methotrexate. In discussions with my GP and urologist, we agreed perhaps this was linked and we would take a wait and see approach in regard to urology.

Loading Dose

Week 4 is the loading dose of the ….. well we don’t know do we? Whatever I got on Day 1, I got again Week 4. After this, it is administered quarterly, with the exception of some tricky machinations at the six month mark as the placebo arm participants are switched over to the active arm, in order to ensure the secrecy is maintained.

The details of the day are pretty much the same as baseline, with the following variations:

  • The iPad questionnaire isn’t as long
  • Only have to wait one hour, not two in case of an adverse reaction

My skin involvement was assessed at a lower coverage percentage than at baseline.

We did discuss the itching and decided on trying the old staple of calamine lotion. It sort of helped.

Post-Loading Dose

  • By Week 6 my skin was 100% clear. Not 95%, not 90%. 100% clear.
  • My ankles were no longer painful.
  • My thumbs were no longer painful.
  • I was sleeping from 10:30 pm to approximately 5:30 am most nights.
  • I could wear my runners ALL DAY!
  • I remembered a 6 digit number for a whole 10 minutes without trying!

I am pretty darn pleased about all of the above. The boobs were still itchy, but it was subsiding, thankfully.

Remembering that number was so fantastic (to me) I emailed the clinical trial co-ordinator to tell her! I was in a meeting at the time and I was clearly excited. I was ecstatic! I have written before about brain fog – like fatigue, it is something many chronic illness patients battle with. I will write again soon, in a different context, about brain fog. I have to say, this sort of detail is not considered important to the trial powers that be in that far, far away place. But to ME? Wonderful!

Am I tempted to think I actually won the lottery and got the active intervention? The skin improvement is pretty indicative. I am seeing my dermatologist next week for a pre-planned check-up so it will be interesting to see his reaction. After all, he knows more about the behaviour of psoriasis than I do.

Week 8

Week 8 is a check-up visit, quite short. Very quick iPad questionnaire, temperature and BP, bloods (no urine unless you could be pregnant, so I’m safe from that one). Discussion of has the participant had any changes to anything, such as needed to see a GP, had any antibiotics been prescribed, any adverse events, any concerns. Consultation with a doctor and the joint and enthesitis assessments.

I asked about my CRP results from Week 4. Lowest it has ever been since 2014.

My skin was formally assessed at 0% coverage. ZERO! *participant does little happy dance* We discuss the ongoing, although much reduced, itchiness of the boobs. Suspect it may be a sign of healing, such as experienced after sunburn. Sounds reasonable to me.

My thumbs, while not sore in daily use at all now, do still react when clinically assessed. The ankles no longer do. Shoulders and all those darn toe joints still react. It sounded as if less were assessed as swollen, but honestly, without the paperwork, it is hard to keep track. To me some felt less sore than last time, but they were still sore. Still lots of “ouch” from me.

My left foot is still slightly swollen overall, but being able to wear my runners for a whole day is blissful. Means I can walk further for longer, go to the gym, exercise normally.

That’s it. Home time. Not even a coffee (very disappointing).

Now, I could share a photo of the same patches of skin as I shared in Part II but there is no point – it is just clear, bare skin – there is nothing to see other than healthy skin. Not even, which surprised the assessor, any hyperpigmentation marks. My nails have not improved in the same dramatic way as my skin, however I expect that the nail damage likely has to grow out. It has never been bad, I have been lucky, so I’m not concerned.

For the first time in my adult life I am NOT battling to control a flaky scalp. Even my hairdresser was impressed!

This is a four year drug trial. From here on in, my trial updates will be quarterly, unless anything unexpected eventuates. I’m getting back to exercise related articles!

In summary, yes, based on my skin improvement alone, it does appear I may have won the placebo versus active lottery. Placebo effect in the psorasis clinical trials was very low. However, I am reluctant to count my chickens before they hatch. I am still on a low dose of a DMARD – that could have contributed (unlikely based on my discussions with doctors unrelated to the trial). So now I wait and see. If my toes improve over the next few monthly assessments (I attend monthly until March 2020, thereafter quarterly) I will be ecstatic. In fact, simply no disease progression (i.e. not getting worse) will be perfectly fine!

How Do You Find A Clinical Trial?

If, having read this far, you wonder if there may be a clinical trial for you, I have to say finding one can be quite difficult. It took me months. There are, quite sensibly, ethics rules and regulations around recruitment of participants. The patient really has to be the one to initiate the contact, to reach out. Most of the big public hospitals and universities will be running trials and have trial participant registries – at one stage I registered with Monash, for example. You will notice promoted posts on Facebook and other social media announcing clinical trials.

There is the Australian New Zealand Clinical Trials Registry, where you can search for registered trials. The search feature is intuitive and simple, a sample result is shown below.

There is the government web site, Australian Clinical Trials. I found the search feature on this web site extremely difficult to use and not remotely intuitive. As it is sourcing all data from the above ANZCTR database, just use the ANZCTR.

Research4Me is an organisation that works in this space. I quote from the website: “Reliable information and access to opportunities to take part in and contribute to clinical trials should be available to everyone. People deserve the right to a choice as to whether a clinical trial is an option they’d like to try, or help improve.” I met the founder of Research4Me, Janelle Bowden, at the ARCS conference in August. 

Last, but by no means least: where am I doing my trial?

Emeritus Research. If you are interested, visit the website, check their Currently Recruiting page, drop them a line.

Emeritus Research are extremely professional, yet at the same time the participant feels almost like family. It is a very supportive and safe environment. I am very happy. They also have a great sense of humour, which I really like – laughter is the best medicine, after all. This is an Emeritus Research Instagram post, which appeared shortly before my loading dose appointment. NOT the word I wanted to hear at the time, but I couldn’t help but laugh.