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!

Where Have I Been? I’m Glad You Asked!

I’ve been everywhere, man, as the song goes. In hospital, in MRI machines: all sorts of fun things.

I wrote last year about my right knee sending to me to the emergency department just before I started my clinical drug trial. It is important to emphasise here, I have two different forms of arthritis: psoriatic arthritis (for which I am on the drug trial) and osteoarthritis.

In 2014 my left knee got very grumpy. Total knee replacement was mentioned way back then, but we tried a Synvisc-One shot as a less invasive treatment. With that and the proper exercises, I got another five years out of that knee. However, it seems time is up. In October last year, after my right knee had recovered, the left knee went out in sympathy. Badly.

At Week 16 of the drug trial I was allowed an intervention: a steroid shot in the very cranky knee. I also had an MRI. This was November last year. Sitting in my GP’s office later, the conversation went like this.

GP (reading MRI report): “Hmmmm, Grade 4 osteo.”

Me: “How many grades are there?”

GP: “Four”

Me: “Oh”

Not exactly the best news, but we hypothesised that the flare in my right knee had increased the load on the left knee, so now it was reminding me to look after it – in no uncertain terms. The steroid shot, some exercise, I’d be fine. That was my thinking. All was progressing positively for about ten weeks after the steroid injection. I was thinking I could start activating Limberation again.

Then came Australia Day weekend (end of January for overseas readers). Friday I woke up, the knee was a little swollen and stiff. I went and did some hydrotherapy. Saturday it wasn’t any better so I went for a walk around the block to see if that would help. No. On Sunday, I had lunch, looked at the dishes and thought “I’ll just go the bathroom first.” As I stood up from the toilet, something at the back of my knee snapped or popped or did something. So painful I fell back onto the toilet. Sat there for a minute, thought, “OK, I can’t sit here forever, got to get up somehow.” So I very gingerly managed to get off the toilet. The excruciating pain of the pop had gone, but this was one very unhappy knee. And it got unhappier as time progressed. I took some panadol osteo – I may as well have taken jelly beans. By an hour later I decided hospital was the place to go.

The poor taxi driver was quite distressed, I think, because by the time we got to the hospital, I was in….. a lot of pain. The hospital staff got me out of the taxi, into a wheelchair and into triage. To cut a very long story short, I was admitted. Finally got the pain under control at 1 am Monday morning. I don’t think the nurses believed me, but I was adamant the pain was worse than when I woke from my hysterectomy. It wasn’t just the knee, but now my foot was excruciating and my glutes were spasming. Because it was a public holiday weekend I didn’t get my MRI (yes, another one, I am now dating the MRI machine) until the Wednesday morning.

You know that look doctors get when one of their patients has something interesting, unique? I recognised that look! My rheumatologist came into the ward, holding the results, with excited stars in his eyes. “I’ve never actually seen one of these myself”, he said. I don’t mind when they get all super excited because it means you are medically interesting!

The MRI showed, amongst other things, a cyst dissecting my popliteus muscle. Not a Bakers Cyst, I must emphasise. This is different. The idea at that point was we could perhaps remove the cyst with keyhole surgery. This was good news, as I didn’t (and don’t) want to get kicked off the drug trial for the other arthritis! Minimal is best, I was thinking. Here is an extract of the report if you are medically minded.

So off to see a surgeon. Surgeon was not happy that my quads weren’t working, I couldn’t flex my toes and my left foot was just one big blob of pins and needles. He also quickly killed the keyhole surgery idea. I needed a total knee replacement. This was a shock, not really something I was planning on. Surgeon sends me off for another MRI, this time of my lumbar spine to ensure my muscle weakness wasn’t coming from my spine. I was wheeled down to the MRI department to make an appointment and they very kindly fitted me in on the spot. Wonderful.

Next day the surgeon rang me. They found a cyst on my spine too, so now I needed to have electrophysiology testing. Off to see a neurosurgeon. Now, dear reader, over the years I’ve had a lot of medical poking, prodding, needles, tests, monitors – but electrophysiology testing would have to be my least favourite. Interesting to be sure, but not so pleasant. You know that old saying, there’s a fine line between pleasure and pain? No, just no. Honestly, it isn’t terribly painful, but it certainly is not pleasant. The second part, where they stick needles in the muscles is not nearly as bad as the first part (but then again, needles never worry me). However, all good, the cyst in my back is not a concern, too small and not in the usually problematic location, not causing any issues. Mind you, he hadn’t seen a cyst in that spot before. Why was I not surprised?

I was still a bit stunned about the whole total knee replacement thing though. So I sought a second opinion. Same advice, total knee replacement required. This surgeon did explain the situation in a way I was better able to understand the problem. In his opinion, the inflammation from the osteoarthritis, with maybe some assistance from dear friend psoriatic arthritis, was causing the cyst. The cyst isn’t in a particularly good position to try removal safely and in his opinion unless we fixed the knee, even if they did remove the cyst, I’d just get more cysts. Great. Not.

Then I had to decide which surgeon to go with. In the meantime, what else was going on? We were, by that stage, in early March. Covid-19 was ramping up around the world. I decided to go with the second surgeon, Mr T, and surgery was duly booked for April 8. I needed a pre-operative health assessment by a physician, the knee components had to be ordered, then another pre-op with Mr T and a rehabilitation prep session with the hospital. All were booked, I was good to go. I had the pre-op health assessment and was sent off from that for a raft of tests (blood, ECG etc).

Then on Sunday, March 22 I got a call from Mr T (my pre-op with him was for the following day). Please don’t come in. Shortly thereafter, of course, all surgery was cancelled.

Consequently, I am now in limbo. A bung knee that has somewhat settled since the end of January hospitalisation, but only if I am careful. I’ve worked out I should do about 2,500 steps a day, in small time blocks, evenly spread throughout the day. Too much activity, knee swells. Too little, knee seizes. I can get around the house now without the walking stick, but for excursions to the supermarket I need the stick.

On top of that, I am self-isolating because I am on an immunosupressive medication.

When surgery will start up again is an unknown at this point: all depends on our containment/management of Covid-19. The surgeon will call as soon as they know. So I wait.

My next article will be about my clinical trial progress, which is going very well (although there is a twist to the story). It was a toss up whether to write about the knee or the clinical trial first!

Oh, and STAY HOME: Social Distancing is critical!

Society and Chronic Health Conditions

Society generally doesn’t cope well with the concept of chronic conditions or chronic illness, especially invisible conditions. All understand terminal illness and curable illness. The vast, and increasing, number of unwell people diagnosed with an invisible condition that is neither terminal NOR curable? Not so much understanding, not even by some members of the medical and scientific communities.

The World Health Organisation (WHO) talks about noncommunicable diseases and usually focuses on cardiovascular diseases, cancer, chronic respiratory diseases and diabetes. The WHO says the majority of deaths from these conditions occur in low- and middle-income countries.

Conversely, if we look at autoimmune diseases, also noncommunicable, we find the incidence is rising dramatically in countries like the UK, USA and Denmark.

Four million people in the UK are living with an autoimmune condition – which can cause pain, difficulty, lost opportunities in work and in life, and in many cases place people at risk of early death. Four million people. That’s almost one in every 16 of us.

Source: https://www.immunology.org/sites/default/files/connect-immune-research-are-you-autoimmune-report.pdf

Then there are those of us with auto-inflammatory conditions with genetic links and immune system process all combined.

Many noncommunicable diseases are progressive – in other words, the patient may become disabled over time. HOWEVER progression can, in many cases, be slowed dramatically by good management: modern medications, responsible eating, EXERCISE.

Yet society is not good at understanding these concepts. Firstly, people struggle with the concept that chronic patients are not curable. There seems to be this basic premise that if you are not terminal, then you must be able to be cured. Society is far better at understanding visible conditions, such as paraplegia. Even when I was using a walking stick for a brief period, I got “better” acceptance on planes, trains and automobiles. That’s visible. This may well come from earlier times when it was quite likely people with chronic conditions did in fact die due to factors related to their conditions. For example, if any of the arthritic conditions progressed to the stage you could not hunt and gather to feed yourself, you may have starved. Asthma can be well controlled with today’s medical knowledge and treatments, but 1,000 years ago? Psychologically, humans cope with the two categories of terminal and curable – those two states have been around as long as we have. Chronic patients, those who are technically sick but live an almost normal life and almost normal life span, is a relatively new health state.

I do not personally like the terms chronic illness and chronically ill. I am not ill in the sense I am not able to live a relatively normal life. I’m not confined to bed, I’m not in hospital, I’m not on a drip: I’m still driving, swimming, working. I have chronic conditions I must MANAGE, I can never stop managing those conditions, but I am not ILL in the sense of the common usage of the word. I stress the difference between common use and medical use of the word ill. I’d like to see a different description we can use. Which sounds worse to the non-medical person: “I have a chronic condition” or “I am chronically ill”? Ill implies, rightly or wrongly, that I’m unable to function in a normal way (with some specific adjustments, perhaps). “I have a chronic condition” sounds much less scary (even to me). Society generally doesn’t refer to a paraplegic as chronically ill because many are not “ill” – does anyone think of Dylan Alcott as “ill” even though, medically, he is. We think of him as a paralympian. His achievements speak for themselves.

This is not to say that as chronic conditions progress over time the patient may not become very ill. They can. Marieke Vervoort, another paralympian, recently ended her life in Belgium when her incurable, degenerative spinal disease reached the point it was too hard for her body. It is wonderful that Vervoort had this option available to her when needed. 

“I’m really scared, but those (euthanasia) papers give me a lot of peace of mind because I know when it’s enough for me, I have those papers,” she said.

I’m focusing on those of us who have been diagnosed but are still able to function and may do so for many years PROVIDED we manage our conditions. Now, this is where there seems to be a disconnect between society and the understanding of chronic conditions. If I tell a well, non-medical person that I need to balance (pace) my exercise regime and my rest times this seems to be hard for many to grasp. You are sick enough to need rest but you go to the gym and you swim? This makes no sense. Well, it DOES make sense, that is what some of us must do to manage our conditions. Different conditions, different management plans.

Society includes governments. Governments are made up of people – who also do not necessarily get the managing the condition concept. The costs of managing chronic conditions, costs that are not strictly medication, can be high for individuals. Yet there is little support for those costs. If we don’t manage our conditions the costs to society become higher because patients may lose the ability to work: there are ongoing social costs that come with that.

It affects our employability. Employers, perfectly normal members of society, can struggle to consider a person with a chronic condition. They see it as a risk. Yet in many cases we are a more predictable health risk than a perfectly healthy person who may start work today and have a car accident tomorrow or be diagnosed with a more severe illness a month later. Most of us know what we need to do to manage our conditions. We MAY need some flexibility: part-time work to allow for exercise, medical appointments, rest. Or perhaps a later start time (arthritic conditions are notoriously inflexible in the mornings).

As a society we do accept some invisible chronic conditions very well, such as asthma and type 1 diabetes. Why the difference? Perhaps because these conditions are relatively unobtrusive to the people around you. Most would not know a person had these conditions unless the fact is disclosed. As a society we also understand these conditions are now (in most cases) well controlled by medications. The prevalence is also a factor: most of us know a diabetic or an asthma patient. Hayfever is another condition we all just accept as being a “normal” condition people have – we don’t ostracise hayfever sufferers.

It is the more systemic and/or less prevalent (rarer) chronic conditions that seem to be less well accepted and less well understood. With the annual increase in prevalence, we need to develop greater understanding and acceptance. Society also needs to consider better support mechanisms. Every person with a chronic condition or conditions will likely have a task that is beyond their physical capabilities, yet they can otherwise live a normal life. As a society we need to address chronic condition support to assist patients to stay as well as possible for as long as possible. Keep people independent, gainfully employed, contributing to society. This maintains the patient’s mental health. To do otherwise is false economy.

How we make this shift is a challenge society has not yet recognised, let alone is considering solutions for. Yet with the annual increase in prevalence, action is needed.

How do we drive change? Society has made huge accessibility improvements for people with mobility aids: society can do this too.

Engaging the Correct Muscles

You did it! You went to a physiotherapist or exercise physiologist (EP) or personal trainer (PT) and you now have a resistance training programme! Congratulations, you have taken another step in managing your chronic condition.

Even though I am qualified, I still seek the assistance of other professionals when I deem it appropriate. I did recently, with my osteoarthritic knee.

One of the exercises I have to do currently is the TRX supported squats shown in the above photo. As I was doing them alone I realised, “Hang on a minute, I’m using my arms to pull myself up!” This, of course is not the idea at all with squats – the target muscles to work are the lower body! Yes, in this case I am using the TRX to support, but I still need those lower body muscles to do at least some of the work!

While we are under the watchful eye of our physio, EP or PT they are watching closely and monitor that we are engaging the correct muscles. Technique isn’t just about holding correct form (e.g. a straight back), it is also about using the right muscles.

Once we are on our own, not being monitored, we have to ensure we are feeling the right muscles working. Sometimes that is harder than others. During a leg extension exercise it is a little harder to cheat, but those TRX squats? Quite easy to cheat. Especially for those of us with chronic conditions trying to rebuild our physical strength and resilience.

When you are in the gym by yourself working your program, check the pictures on the item of equipment (if you are using equipment), there should be some like this.

Concentrate on feeling those muscles working.

Where there is no pictorial reminders or guidance, there is usually a gym instructor on duty who won’t mind checking your technique for a moment or two if you ask.

During your physio, EP or PT consultation, make sure you are clear on exactly which muscles you should be engaging when doing each exercise and make sure you concentrate on feeling them working when you are on your own.

We want our time spent exercising to have therapeutic value, after all!

Bonus Reading for Psoriatic Arthritis patients:

A resistance exercise program improves functional capacity of patients with psoriatic arthritis: a randomized controlled trial

Ditch Your Handbag!

Even for well people, this situation is not good. For many people with a chronic condition (perhaps a musculoskeletal condition), it is even worse. It is vital we pay attention to our posture and our body balance. By body balance I don’t mean standing on one foot (although that IS a very good exercise) I mean ensuring our muscle strength and length on each side of our body is balanced, that our chest and upper back muscles are balanced. For every push exercise, we balance with a pull exercise. Rock hard quads are great, but don’t ignore the hamstrings!

What has that to do with handbags? Look at the photo. If I walk around too often like the middle image, what do you think might, over time, happen to my shoulders? The muscles on one side will be over worked and I may develop a postural abnormality. This can lead to pain and most of us do not want that.

If you rarely use a handbag, fantastic. However if you are travelling to and from work on public transport five days a week, then walking around town (getting incidental exercise) at lunch time, the hours add up.

Even if you do not yet have a condition to manage, this handbag on one shoulder habit is still not a good thing. Slinging a backpack on one shoulder is exactly the same effect. Not a good thing. Because we are creatures of habit, we do tend to use the same shoulder each time. If we swapped it around evenly, it might not be so bad.

You may keep a pretty handbag for social events. Or a businesslike one for job interviews. Other than that, ditch the handbag and invest in a backpack. Or several. There are a wide variety around these days and many look remarkably like handbags or can be disguised as one quickly if necessary.

There are even ones that can be brought around to the front for access without taking them off – very nifty.

If you do not have the shoulder mobility to use a backpack and you carry a handbag, remember to share the load between arms.

Short and sweet, just my tip of the day!

 

Brain Fog? Cognitive Impairment? Which Sounds More Serious?

As a chronic illness patient, I am over the term brain fog. Let’s be honest here, it is cognitive impairment. Two years ago when I wrote “Yes, Brain Fog IS a Thing“, I was more concerned with ways to deal with it on a day-to-day basis than investigating the neurological, physiological or immunological causes or possible relief.

Cognitive impairment is a symptom experienced by MANY people with chronic conditions, irrespective of age, yet the term is more commonly associated with older people. Google cognitive impairment and nearly every result will couple cognitive impairment with “the elderly” or “in aged care” and similar phrases.

All is not lost, however – there IS recognition! And hope!

Cognitive disturbances, mood disorders and fatigue are common in SLE patients with substantial adverse effects on function and quality of life. Attribution of these clinical findings to immune-mediated disturbances associated with SLE remains difficult and has compromised research efforts in these areas. Improved understanding of the role of the immune system in neurologic processes essential for cognition including synaptic plasticity, long term potentiation and adult neurogenesis suggests multiple potential mechanisms for altered central nervous system function associated with a chronic inflammatory illness such as SLE.

Source: Lupus brain fog: a biologic perspective on cognitive impairment, depression, and fatigue in systemic lupus erythematosus

“Cognitive disturbances”. Not quite enough in my view. The title does, however refer to cognitive impairment.

Although widely used, I find brain fog to be a somewhat dismissive term – it just does not sound as serious as cognitive impairment.

Because mine was relatively minor, only really noticeable to me, I asked other patients about their experiences. Here’s what they had to say. I am sorry I couldn’t use all the responses I received!

“To me it’s like trying to fight through treacle.” ~ A

“I cant cope with multiple processes. I need things written down.” ~ J

“One recent trip [overseas] hubby went on, the flight wasn’t direct and took more than twice the time to get there. I was hysterical, and had zero recollection of the change in flight timing.” ~ N (Note, this patient does have a Functional Neurological Disorder diagnosis)

“… impossible to do more than one thing at a time. I can’t cook and carry on a conversation. I can’t wash clothes and pay bills …” ~ T

“I just don’t trust myself with details anymore. When making med appts etc I check and double check and still get things wrong. My confidence is so low when doing paperwork etc” ~ J

“I sometimes think it is more debilitating than the pain as I have learnt to push through the pain but I can’t push through the fog.” ~ M

“When my brain fog is bad I cannot process people’s speech. I describe it as words floating past me like pretty butterflies – I hear them so know they are there, but they have no meaning.” ~ F

“I wish more people understood that it’s not just being forgetful.” ~ Hannah, who writes at Sunshine and Spoons and has ehlers danlos syndrome.

Language is important. The terms we use are important. Cognitive impairment is damn important.

In chatting to my gastroenterologist one day, I complained about cognitive impairment. I said to him, “If I were a doctor, I would have to give up practicing.” His eyes nearly popped out of his head. “Really?”, he asked. He and I have known each other quite some time now – he knows I am not the type to exaggerate. I knew from his reaction I had spoken in a language he understood.

The reality is I could do my accounting or IT roles in a wheelchair. True, my personal trainer hat would be more difficult in that case. I can’t do those jobs without my cognitive abilities. If I do make a mistake though, I am not risking anyone’s health outcomes. If I was a surgeon, in the middle of surgery and I forgot or could not decide where to cut next: that could be a problem. If I misread a blood test result, or prescribed the wrong dose of a medication (although pharmacists are a double check with prescribing) the impact on the patient could be negative.

Although my cognitive impairment has been very mild compared to other patients, I would still notice it. I knew it was there. In the early days of my illness, before we got things under control, it was worse. Even so, I was so ecstatic when this happened:

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.

Source: A Clinical Trial – Patient Journey – Part III

Of course, fatigue and cognitive impairment go hand in hand in many situations. This is well known and why workers should not be driving home after very long hours. Yes, they could fall asleep at the wheel, but also their reaction times will be impaired.

The quotation above from the SLE study indicates how difficult research is into this area, as it is with fatigue. There can be SO MANY contributing factors: the underlying condition, medications, pain, fatigue, poor nutrition, lack of adequate hydration, lack of exercise, poor sleep, onset of menopause, age (MCI for example) – the list goes on. My objective is to highlight the seriousness of it. I would love to see the term brain fog done away with. When I mention it as a symptom, I want to see the reaction I got from my gastroenterologist – acknowledgement that this IS A SERIOUS ISSUE. Let’s have a serious name for it.

I have REALLY noticed the improvement, since the new medication kicked in. I feel my reaction times when driving are normal, I remember where I put my glasses, I’m writing (you can judge whether I’m writing well or poorly!), my concentration lasts well into the evening, I don’t need a shopping list.

This is great for me, but my thoughts are of the other chronic illness patients out there struggling to get their health providers to acknowledge the seriousness of this particular symptom on their quality of life – including employability. I’m also well aware that even if it IS acknowledged, we may be a long way from finding solutions – but if science don’t consider it a serious issue, science won’t look for solutions.

After I wrote the fatigue article (linked above), I had one patient say to me she has simply given up mentioning fatigue to her doctor. I understand why, but we can’t give up because then doctors don’t see it as being as important as it is. Unless, of course, they suffer one of these conditions themselves and have been through it.

In the five years I’ve had my conditions, I’ve been asked MANY times about my pain levels. About my mobility. I do not recall EVER being asked about fatigue or cognitive impairment. Now, to be fair, the generic “How are you feeling?” could be an all encompassing question, but I’ve never got the impression it was including either of these symptoms by default.

So – over to you, fellow patients!

  • Do you experience cognitive impairment/brain fog?
  • Do you prefer “cognitive impairment” (or some similar name) or “brain fog”?
  • Do you, as a chronic illness patient, feel cognitive impairment as a symptom of your underlying condition is seen as important by the medical profession?
  • What impact does cognitive impairment/brain fog have on your quality of life?
  • Do you feel in your case it results from pain, medications, fatigue or is it a separate symptom of your condition?
  • Do you think your family and friends understand your cognitive impairment/brain fog?
  • Has it impacted your career, work choices or employability?
  • If you are a family member of a chronic illness patient, do you feel you understand?
  • In your experience, is cognitive impairment/brain fog adequately recognised?
  • Anything else you would like to share?

PLEASE NOTE: Cognitive impairment can be caused by a great number of medical situations and can range from annoying to critically serious – this article is ONLY addressing where it is a symptom of an underlying condition, such as described in the SLE quotation provided above. If you are concerned about ANY change in your cognitive abilities, please consult your doctor.

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.