Category Archives: Medication

Here I go again: steroid step down

I’ve been back from travelling for around a month now and in that time I have:

  • visited Ireland to see the in-laws and explore a part of the country I had never seen before, Galway
  • found and moved into a new flat
  • set up new flat to make it home
  • started a new job
  • started a new diet (more on this in a follow up post)

However the most important thing I have done since being back was visit my doctor to get a new prescription and get bloods taken. The results seem to be normal from the information I can get over the phone.

I also let her know that I planned to step down my daily dose of steroids over the coming months and being conscientious, she booked me in for monthly blood tests. This is the first time I’ve had these ordered by a doctor since London and, although it takes time out of the working week, it will be good to track my body’s reaction to the increased steroids over the past three months and how it responds as I step down. Data is everything these days, after all.

Already started

This month, I have got myself down from 10mgs a day to 7mgs and I plan to be down to 5mgs by the start of June. From there, experience tells me it will be a more gradual process. I know the toll this will take on me emotionally from previous experience – you can read about my last step down from the steroids in this blog’s medication archive.

However, to be reliant on as few drugs as possible while not compromising on quality of life has always been my goal for coping with my MG. In this respect, I must treat this step down process as a new test for my body and watch carefully to see how it responds.

Altitude and myasthenia gravis

Today I’m stepping into the unknown. Not only am I flying from Chile – the most developed of the countries I’ve visited in South America so far (in my opinion) – to Bolivia – a country I know very little about and that has been described to me as the least European of all the countries in the continent. Now that’s an exciting thing in itself and the kind of description that sells a place to me rather than puts me off. But also the airport in La Paz, Bolivia’s capital, is 4,000m above sea level. We have eight hours here until our flight to the slightly lower Uyuni (3,600m).

General impact of altitude

It is widely acknowledged that the impacts of altitude start when a person passes around 3,000m – although some people start to feel it around 2,500m. This is because the air is thinner – it contains less oxygen. The higher you go the less oxygen it contains.

There is no predicting how and when it will impact a person but some common side effects are:

  • headaches
  • nauseous and/or upset stomach
  • vomiting
  • shortness of breath
  • trouble sleeping
  • tiredness

From what I’ve read it can take about three days or longer to acclimatise to the thinner oxygen.

Implications for myasthenia gravis

When I asked my consultant before taking the trip he told me there was no specific implications but I was to take care just as anyone else would.

Obviously the difficulty sleeping could trigger MG symptoms as it has done in the past for me, so it will be interesting to see how my eyes behave over the next few days. As you can see from the featured photo, I’m arriving strong with no physical eye symptoms.

However, from what I’ve read and I must remind you that I’m as far from a medical expert as humans come, that it might be particularly problematic if you’ve had lung problems or if you have an additional lung problem on top of your MG.

Experimenting by giving it a go

After a last minute panic at the airport and then on the flight, we are here in La Paz doing everything, including writing this blog, incredibly slowly. The only way to know how we’ll respond to this altitude thing is to be in it so armed with the names of drugs we can take to alleviate symptoms, we’re giving it a go.

We’re going to take it very easy – relaxing for the first few days until we acclimatise and then see what we’re fit for. We’ve got a nice hotel so that we can just relax and enjoy being in the desert; another new experience for me.

If things don’t go well, our plan is to skip the Salar de Uyuni and fly to Lima, the sea level capital of Peru, where we can take a meandering bus to Cuzco. This means a more gradual acclimatisation to the slightly lower Peruvian city (3,300m), from where we plan to spend a week exploring Incan history including Machu Picchu.

I will give an update on how we’ve found it in due course, but for now we’re off to enjoy the relaxation booths with Netflix that an absolute hero created in the La Paz airport.

Myasthenia and using travel insurance

As I mentioned in my last blog, I had a relapse of double vision when in Uruguay in February. Before jumping to the treatment I received in Argentina, I want to talk about the experience I had with the travel insurance provider.

Ever since being diagnosed with myasthenia gravis, I have been particularly careful when choosing a travel insurance policy. I felt it was inevitable that one day I would need to use it and that time finally came in Buenos Aires last week.

Before calling the insurance company, I used the online doctor service that was included. It was literally a video chat with a British doctor who confirmed I should go to a medical facility to see a neurology specialist ASAP. So I phoned my travel insurance with her recommendation to check if there were any facilities that they would recommend, stressing that it was important for me that they could cater for English-speaking patients.

I hoped that it would be a quick call to the travel insurance just to get a recommendation, but I spent the next three hours having an on and off conversation with one of their staff.

After a long initial conversation about my condition and what the doctor had recommended, the assistant went away and then emailed me over an hour later with a list of rheumatologists in the city although I had told him that the doctor had recommended a neurologist. In the email, he also said I needed to phone each of them to see if they had English-speaking doctors.

When I phoned him back to tell him no I needed an English speaking neurologist, he told me I should consider seeing a rheumatologist instead…as if he had had a brainwave about treating the whole condition. Only after I was quite firm with him, did he eventually agree to look at neurologists. He then again emailed a google search of neurologists without any information about whether they spoke English but also said I should think about his rheumatologist point. Never in my years of having the condition, have I ever had a rheumatologist recommended and, from a quick check on the MG Facebook support groups, it’s incredibly rare that someone would see this type of specialist if they only have MG.

All the time we were having this back and forth ‘discussion’, I was in my darkened hotel room feeling my energy levels – which were at this point already very low – dropping. But there was no sense of any concern whatsoever from the insurance company assistant.

When we were on the way to the hospital I had found with English speaking doctors and staff, he called again to say that unless I had declared the condition I wouldn’t get any treatment paid for. Hardly the right time to bring this detail up! Of course I had declared it and paid the excess, which earlier I assumed he had seen on my file rather than adding stress to an already unpleasant situation after three hours of terrible service.

All in all, it was an utterly frustrating experience that seemed to lack in any kind of empathy. I know most people will not be shocked by this, but I do wonder why we allow an industry that is meant to be providing us a specific service to be so inept when we are at our most vulnerable? There is definitely a business opportunity for a kinder travel insurance company, or even a customer service team who ask callers once how they are doing.

I have now submitted my claim, so I look forward to seeing how that goes but I’ll be doing a bit more research about other providers the next time I take a trip.

A bad week in Uruguay

After five days in breathtaking Rio De Janiero and a couple of days on both the Brazilian and Argentinian sides of the Igazu Falls, we had a night in Buenos Aires before heading to Uruguay for carnival.

To get to Montevideo, Uruguay’s capital, we had to take an overnight bus from Puerta Igazu to Buenos Aires and then an early morning boat to Montevideo the next day. It was exhausting and I think the combination of the extreme heat, the lack of sleep and the different climates led to what happened next.

On day 1 in Montevideo, I had the start of double vision and felt pretty unwell. This developed rapidly over the next few days to the worst double vision I’ve had in years, a nasty headache from the swirling and really bad fatigue. Elaine said I was getting less and less like myself each day and the hours where I was fit to do anything kept getting shorter.

Still, we tried to enjoy the cool carnival nights in Montevideo.

This photo above is on our first night in Montevideo. It was the night of the main parade and here we’re climbing scaffolding to get a better view.

After five nights in Montevideo, we moved on to Colonia Del Sacramento, a former colonial town across the river Del Plata from Buenos Aires. Luckily, there is not much to do in Colonia, so I was able to relax there as I didn’t have much energy for anything else.

After a week of getting worse each day, although I had doubled my steroids, we caught the boat back to Buenos Aires a day earlier than planned to get some help.

I’ve now had medical care in a private facility in Argentina’s capital (more about that in another blog soon) and after upping my steroids and pyridostigmine I am feeling much better. However, this Uruguayan episode served to remind me that the MG is more of a sleeping beast than a distant memory and that I can’t take a day of being well for granted.

The photo for this blog is at the lowest point of my last episode where I wanted to hide away from the world. Thankfully in that moment, I had Elaine to keep my spirits up and pull me out of my self pity. So it has served to remind me how lucky I am to have her by my side too.

Despite this bad turn, the reason we are here – to experience other countries and cultures – is what kept me going. Here are a few of the amazing things we experienced in Montevideo and Colonia Del Sacramento. I hope the beauty of the country and its people is what I remember when I think back on our time there.

Travelling with medication

Travelling with enough medication in my bag for my three month trip was an anxious experience. Let me list some of the situations that caused me to be nervous:

  • every border between countries
  • every airport security check
  • every long bus journey where there were lots of stops before mine and I had to put my bag in the hold
  • every time I left a hotel in a hurry
  • every time I was in a hostel or hotel where I didn’t think my stuff was safe
  • every time I felt my bag was unsafe on the street

I think you get the idea. And it’s not like I was carrying an illegal haul – this was prescribed medication but carrying around 140 pills isn’t something I’ve ever done before. My mind kept jumping to them being confiscated or lost and I had no idea whether I would be able to get more and then I worried that our dream trip may have to be cut short. Along with my passport, the meds were literally the only thing that I couldn’t do without. Especially since my bank card wasn’t working…but that’s another story.

In the first week, I emailed my consultant to ask him for a confirmation of my steroid prescription. I had received a very helpful email from a reader and fellow myasthenic who said having a printed prescription and confirmation of the condition might be handy, but the email was the best I could do. Yet I worried because the email wasn’t translated into the relevant languages and I wondered whether the security guards would engage with them because they were digital. Lesson learned for the next leg of the trip.

When I started the trip I kept all my different types of medication – from painkillers to rehydration sachets – together. Then I split some of them into my other bag, to try to spread my anxiety about a bit and it helped. I buried a couple of packets in beside my walking gear that was mostly unused after Nepal and hoped the south East Asian sniffer dogs were as worn out by the sun as their stray brothers.

Despite all that anxiety, there was only one incident where my medication bag was searched and even that was done rather indifferently by an airport guard in Singapore. That was definitely the most strict country we travelled to where we were told on the plane just as we arrived that if we were carrying any illegal drugs the mandatory punishment was DEATH. They didn’t elaborate by what method but my imagination raced.

And so the anxiety continued until I realised on reaching Bali, our last stop, that I felt a huge weight had been lifted.

As I prepare for the South American leg of my travels, I’m trying to keep that light feeling in mind and challenge a few of the anxieties that weighed me down in south east Asia. But I’m also taking a prescription and letter confirming the condition and my need for medication.

Travelling and myasthenia gravis

I’m back in Scotland after travelling around south east Asia with my wife Elaine and I have one thing to say to you: long term travelling is possible with a condition like MG. But more about that later. Over the three months, we spent time in seven countries:

  • Nepal
  • Thailand
  • Vietnam
  • Cambodia
  • Singapore
  • Indonesia
  • Laos

Although many of the countries were neighbours, they were very different culturally and politically which meant there were big differences in how developed they were and, as a result, what the medical facilities were like. The last point would not be a consideration for many of the travellers we met along the way, but Elaine and I were constantly aware of how likely we would be to survive a hospital trip if it was required.

During my time in Thailand, our second country, I made a decision – that blogging about the trip was getting in the way of my ability to be in the moment. Often we only had a few days to truly immerse ourselves and I didn’t want to spend that time doing the reflecting that I felt might be more meaningful from a distance. So I stopped, hoping that I’d have a few things to say once back in Scotland.

Now that I’ve had time to process it all, I’ll cover different topics that came up during the journey over the next few blogs. I’ll be posting these between now and when Elaine and I head over to South America at the end of January for our final three month stint.

For now though I want to say loud and clear; travelling for an extended period is do-able for someone with myasthenia gravis (MG). I repeat, it is do-able because I definitely have MG and I’ve returned from three months away happy and healthy. Saying this, I had the go ahead from my consultant after coming off the drugs that suppressed my immune system and getting all the relevant injections. I would NOT suggest trying it unless you can get the same thumbs up from a medical expert.

Naturally, I was nervous about how I would cope and while I was planning I couldn’t find anyone with MG saying you can do this. But as travelling for an extended period to far flung continents has been a dream of mine since long before I was diagnosed with MG, I had to try. And I knew it was important to try while I was feeling healthy and strong as with this condition nothing is guaranteed.

Fine, I had to adapt my dream: from a solid year of backpacking down to two three month periods because I am still taking medication (prednisolone) and that’s the longest prescription I could get. I also won’t be able to go to any areas with yellow fever in South America (the Amazon for instance) because I can’t get the yellow fever jab as it’s a live vaccine.

Although it’s cost us more money to go and come back home and then go again, it’s given me time to catch up with loved ones, get blood tests done to make sure I’m really doing ok, to sleep in the same bed for more than three nights in a row and to recover my strength before the next leg.

I already know it’s the best thing I’ve ever done and may ever do. Don’t get me wrong: there were hard days and times when I wished I was back in the safety of my pest-free and tropical disease-free flat by the seaside. But then there were days when I felt more alive than ever before; like when we snorkelled with wild turtles in Indonesia and spent the day looking after rescued elephants in northern Thailand. These two things alone were worth every possible risk and will stay with me for as long as I live.

A photo taken on our rented Go Pro off the coast of Gili Meno, Indonesia.

So if there’s one big takeaway for me, challenge your I cants and be willing to adapt your plans to make them fit with your MG or whatever it is that you’re struggling through. There may be a way of making your dream come true if you’re flexible and brave.

Travel vaccines and myasthenia

There were a lot of expenses for our extended honeymoon before we left home and now that we’re ‘here’, I’m not sure how many of them were necessary. The most important and least pleasurable pre-travel expense was the money for injections.

I spent around £500 on injections over a period of 5 weeks and felt like a pin cushion. While I don’t grudge money spent in order to keep myself healthy, it was difficult to hear that because of suppressing my immune system it’s not guaranteed that any of the 11 injections will work. Goodbye £500.

Still, like a reasonable non-stingy (cough cough Scottish) adult, I figured it’s better to have them than to leave myself open to a range of exotic diseases – most of which the pharmacist explained in far too much detail. He was who you should talk to if you never want to adventure beyond your bedroom. 

Side effects 

I was mostly fine after the injections excluding some heavy arms and the first three injection day where I felt nauseous and lightheaded. On other days I was able to go for a light run or swim on the same day as the vaccines. 

No can do

A vaccine that is recommended for the areas we’re travelling to and that I couldn’t get was yellow fever. As it’s a live vaccine, I wasn’t allowed to have it due to my thymectomy and immunosuppression – there’s a risk I’ll get the disease from the vaccine.

The mosquito-carried disease doesn’t have a presence in Nepal or south east Asia so I’m safe for now, but it has a grip on certain parts of South America including the Amazon rainforest. While I don’t need it for this stretch of the trip, I need to carefully pick where I travel to in SA. This unfortunately means minimising my time in Brazil. 

Instead of the vaccine, I got a yellow exemption card (pictured) which will hopefully allow me into the infected countries if not the infected regions. 

So while it was a ‘pain’ to spend so much on vaccines which aren’t guaranteed to work, as I travel to my next destination it brings me peace of mind to know I’ve done all I can.

Extended honeymoon

It has been a while since I’ve posted here and in truth that’s because I’ve been busy. I’ve been working away from home Monday to Friday and in my free moments I’ve been preparing for my wedding (most definitely the best day of my life) which happened in August.

More recently I’ve been preparing for my upcoming extended honeymoon.

That’s right – Elaine and I have decided to do something extra ordinary for our post- wedding break and so we’ve given ourselves up to 8 months off work to travel.

After many years of one of us working away from home, we’ve decided to start our marriage with some lengthy quality time together and to go to parts of the world we’ve dreamed of seeing:

  • Nepal
  • South east Asia
  • South America

Far flung foreign climes with completely different eco systems and germs  – that’s pretty terrifying for a person with MG. Particularly someone who was immunosuppressed for years. 

But now feels like a good time because: 

  • I’ve been in good health over the last number of months and years
  • I’ve trained hard to get strong enough for the adventure
  • I’m on very low medication meaning that I am able to survive without trips back for meds
  • If not now, then when?

I plan to write this blog regularly when I’m away to show the highs and the lows of life on the road with MG. I’ve not met anyone with MG who has travelled for long periods and so I want to share my experiences about it (if you have, please share yours with me). But I’ll also be sharing general experiences of being on the road.

I’ll get into all the different aspects of preparation and the actual going over the next few blogs, but for now I have a 2 page to do list that will not sort itself! Pictured in preparation mode – testing my equipment in the Pentlands.

Down to zero

After 4 years of MG symptoms and 3 and a half years of the diagnosis, I’ve been given the go-ahead by my consultant to reduce my medication to zero. Nothing, nada, zilch.

Earlier this week, I gave my consultant an update on how I’d got on with going from 100mg to 25mg aziathioprine. The short version is that I don’t feel any different now – there was a time when I wasn’t sure between 75mg and 50mg as my symptoms were worse than they’ve been in a while. But I waited it out realising that a month between stepping down doses wasn’t long enough so I’ve been waiting 2-3 months between reducing my dose.

Now comes the real test – my next step is down to zero then down to 1mg of steroids every second day then nothing. So totally drug free. 2017 will be the year I tested going drug free.

This is what I’ve been wanting for years, what I’ve been working towards, but this week I’ve felt a little numb to it. I’ve not been sure how to feel about it so I’ve put off thinking about it knowing that I’m away this weekend. In the middle of nowhere, with lots of time to think. But now I’m here and I’m still struggling to feel it. 

Thinking about it, it’s probably because now comes the scariest part. The ultimate test of whether the thymectomy and healthy lifestyle (early nights, good diet and lots of exercise but not too much) will allow me to stay in remission. Proper remission. 

I’ve been told it’s fine to take 1mg if I’m feeling weak, which is a good back up. But when I finish my latest prescription in a few days time, it will be time to step into the unknown. Wish me luck!  

Treating a set back like an experiment

So it’s happened again – just when I started to feel completely unphased by my myasthenia gravis I’ve had a set back. This is the way with a condition that fluctuates but it doesn’t make it any less annoying. 

Two days before I was due to go on a relaxing break to Spain my right eye starting playing up. I had a good night’s sleep and it seemed improved but then, the day before I was due to go, I had a later night than expected and woke on my first day off with a bad case of ptosis – dropping – on my right eye. 

My ptosis is usually mild now – a slight droop which is annoying – so I’d forgotten what a bad case feels like. I count a bad case as when my eye lid is almost or completely closed. No matter what I do it can take days or weeks to right itself and in the mean time it makes everything a bit more of a challenge. It means:

  • looking anywhere other than down becomes problematic – looking straight ahead there is double vision as the right eye tries to adjust with a more limited field. This means I spend most of the time with my head tilted up and have more problems getting around
  • having conversations becomes challenging – you can’t really look people in the eye because when you try their eyes move around their face. Oh, and you over-analyse every look of your conversation
  • the eye lid feels really heavy and is constantly uncomfortable – I used to wear cotton patches during these times for comfort. It’s not great when working in front of a computer screen all day

I’m fairly sure that I’ve run myself down in the build up to the holiday – taking on too much and not giving my body the rest it needs. Then there was the sharp change of climate and routine which probably didn’t help either. 

Rather than waiting in a depressed stupor for things to return to ‘normal’, I’m taking a scientific approach. I’m testing out the impact of different things and will hopefully have more knowledge about how to treat myself next time. So far I’ve tried:

  • Sleeping longer than normal – on holiday I had between 9-10 hours sleep a night. This is more than the  7-8 hours I get normally. This seemed to make it worse rather than better.
  • Cutting out alcohol – after a break from booze, I had slowly reintroduced it to my routine and was having at least 2 drinks a day on holiday. Over the next week I’ll be removing alcohol again to see if it has an impact
  • Upping my steroids – I’ve upped my steroid intake from 2mg to 3mg and hoping that extra tablet will help. If I don’t see an improvement over the next few days, I’ll increase it again
  • Eating healthier – while I didn’t eat a lot on holiday, what I did eat wasn’t particularly healthy. I’m on a detox this week to aid healing including keeping it simple with just lean meat and green veg and lots of lemon water
  • Cut down on caffeine – before I went on holiday, I was drinking more coffee than I ever have. While away, I cut down to 1 cup a day and I’m going to try to keep a reduced intake now that I’m back
  • Rest – on holiday I did very little that could be described as ‘active’ for the first two days. I then slowly reintroduced exercise – gentle walks and relaxed paddle boarding. Now that I’m back I’m going to do less exercise than normal this week 
  • Heat – unlike many others with MG, I find heat from a sauna, bath or weather works well for my body. Now that I’m back in an Autumnal Scotland, I plan to use the sauna every few days (as I had just before the photo above)