Happy Anniversary to me!

2 days ago was my one year cosentyx anniversary.

I have successfully administered 15 cosentyx injections.

Three days after my first injection my scalp psoriasis had almost completely cleared.

By the end of week one my scalp was entirely clear and my arms were about 50% clearer.

By the end of week three I had only a couple of patches left on my legs.

By the end of week 4 I had only a tiny amount of dry skin, not psoriasis, on my legs.

My knees were better. My toes were a bit bitter. My fingers were improving week after week.

The scarring on my legs eventually faded.

Over the months I have cleared out my bathroom. First the tube of sebco, the one I used to get through every 4 days was binned. Then the medicated shampoos. Then the numerous creams and ointments and moisturisers, and only last week I binned an out of date tub of coconut oil.

Psoriasis wise, having a clear scalp was the most life changing improvement from cosentyx. My scalp psoriasis controlled every aspect of my life. I became aware of it when I was about 14/15 years old in Malta and I realised had a small ‘bite’ on my scalp. I thought it was a mosquito or something and didn’t think too much of it, but over time, it got worse and worse and at some point I must have realised it wasn’t just a bite. I went through my late teens without seeing a GP. I worked a series of jobs that would often require me to wear black tops and it was pretty embarrassing. Constant flaking. But I don’t remember my scalp being super bad. It was probably just a few small areas of psoriasis. I could cope. Life went on.

When I moved to Aberdeen in 2008 my scalp must have become so bad that I made my first ever GP appointment for it. I remember the doctor looking at my scalp and exclaiming he’d never seen anything quite like it and that the plaques were larger than cornflakes. That description of them has never left me. Nor did it ever put me off eating cornflakes. I was prescribed cocois and told to sleep with it on my scalp over night. I stank. Rotten eggs. It was horrible. I sound so attractive. But, to some extent I guess it must have worked. I don’t remember being chained to the shower, I was able to have lots of very drunken nights out and I don’t remember being in constant pain from it.

I don’t remember it being really bad until about 2013. When suddenly it took over my life. My scalp was covered from the base about 2/3 up the back of my head. I went from treating it once, twice a week, to every single day. I went from being able to manage it to having to take days off work because it had become infected. Holidays would be dictated my by scalp routine. A family holiday to Florida not enjoyed to its full extent because I couldn’t jump in the pool and frolic with everyone else because I couldn’t get my hair, and therefore scalp, wet. I could only get in the pool when it fell in to the hair wash routine. Being in Italy and having an early night every other night so I could get back to the hotel and put the 3 hours aside I needed to keep on top of it.

I have, it has to be said, the most patient, understand boyfriend (well, fiancé now!) in the entire world. A man who would cut evenings short with me so I could get back to do my scalp. A man who wants to take me back to Florida so I can jump in the pool without a care in the world.

My joints have improved too. I have no active inflammation. None. Nada. Nothing. This isn’t to say that I am without pain, I’m not. I still suffer from pain in my feet and recently in my fingers and hands. But I am moving. I can walk without pain and move around. I recently spent a great afternoon with my nephew, rolling around on the floor with him, ducking down low to hide behind things and dance around with him. A year ago this would have been impossible for me to do. When I held him for the first time I was covered in psoriasis and I struggled to hold him confidently, my pain was so bad I thought I was going to drop him.

The fatigue still pops up every so often but it’s never connected to cosentyx. The fatigue I have now occurs when I’ve overdone it, as opposed to when I was on methotrexate and the fatigue was so bad I was pretty much in bed for 4 days trying to recover.

Not having scalp psoriasis still blows my mind, almost one year on. To know that I have gone almost 365 days without it. To be able to sit on colleagues chairs at work without leaving a trail of flakes behind me. Not having to sit on a scarf on my own chair. Not having to vacuum after myself every moment of the day. Cleaner house, cleaner car, cleaner desk space.

I struggle to remember now how it felt. How painful it was. How inconvenient it was. It feels like a distant memory, one I hope to never revisit.

Having said that, over the last few months I have started to wonder if the cosentyx is becoming less effective. My fingernails are showing signs of developing psoriasis again. My fingers are hurting. The underside of my toe joints starting to feel a lot like the very pain that started my whole arthritis journey.

I was due to inject on November 5th but because of my upcoming operation I but I have skipped this one, and maybe the next, injections. This fills me with dread. I don’t know if or when I will flare, but I’m expecting it. I know I’ll hurt. I know it’ll be difficult. But at least by not being at work I can ride the pain out at home.

I have what I think is a small patch of psoriasis already returned on my arm and my feet don’t feel like they have as much ‘movement’ as they did before.

My toe straightening surgery comes next. I was denied the surgery so many times over the last two years because methotrexate and sulfasalazine weren’t controlling my inflammation. I am able to have my surgery in two weeks time because cosentyx is doing what those two couldn’t

When it comes to injecting, I am the living embodiment of ‘If I can do it, anyone can’. I was petrified of needles. Even just thinking about one was enough to make me almost faint. But now I can inject without a seconds thought. I know that cosentyx is the only biologic I’ve had but I understand it’s one of the (if not the) least painful injections. I never thought I would find myself looking forward to injecting myself, but I do.

In the one year since I started cosentyx I completed the London Marathon, I turned 30 at Disneyland Paris, I saw the Northern Lights in Iceland, I went to Holland to see my best friend for the first time in 9 years, I’ve just returned from another trip to Paris and will be heading back to Holland shortly. I’ve been to see my favourite bands live, seen shows I love at the theater, spent time with my Sister and been on days out. I got more involved with Arthritis charities and continue to work as an advocate for those of us with psoriatic arthritis.

It’s not been easy.

But it’s been ok.

 

Toenail and I.

*WARNING*

If you don’t like talk of toes then this is not the blog post for you. There will be no really bad feet photos included (although I do have hundreds for my own personal collection) and I am obviously not a medical professional so I cannot give medical advice on personal situations. Also, GOOGLE IMAGES AT YOUR OWN RISK.

Here we go.

Earlier this morning, I had my 5th round of minor surgery on my toes. It has been something I have mentioned many times before, either here on the blog or on my Instagram but I don’t know if I’ve ever explicitly stated what it was I have been getting done.

I was supposed to just have two toenails worked on today, with my final appointment for the last toe to happen in a few months time. But as the three toes were not next to each other I was asked if I wanted all three off. I agreed and that’s me done forever. So what was it?

Permanent toenail removal. I have now had all my toenails permanently removed.

Why?

Psoriasis of the nail.

I come from a family with a long history of psoriasis on my Fathers side. Scalp psoriasis controlled and ruined my life for so many years I can’t remember what life was like before I developed it. However it wasn’t until after my psoriatic arthritis diagnosis that I started to notice my nails ‘turning’.

The Fingernails

It started in my fingernails. I noticed they were ‘pitting’. The best way I can describe it would be that I started to have little dots in my nails, like they had been pricked with a needle. Lots of little dips and holes. The nails started to become discolored and the tips of the nails became brittle and sort of strange looking. I really don’t know how best to describe it. I am a lover of nail polish and I realised the nails were getting really bad when I couldn’t remove the polish from the dips. These photos aren’t great (I can’t find better ones) but hopefully you can kind of get the idea. The tips of the nails yellowing and kind of spreading  unevenly down the nail.

 

 

 

I have since found photos on instrgram which better show the psoriasis. This was my thumbnail, the photo taken on 1st November 2017, so not that long ago. This is unrecognizable to what I have now, but it very clearly shows the pitting,

IMG_1847

Thankfully however, the psoriasis in my fingernails wasn’t particularly painful and I could manage them. The nails stayed the same thickness and I was able to clip them and file them to try and keep them as tidy as possible. I also learnt that a nail buffer was really useful in trying to keep them smooth. I don’t know if this is recommended (probably not!) but gently buffing away the ridges and dents made a great difference. Since I started cosentyx the pitting has almost stopped, which is great.

The toes however. A whole new level of pain.

The Toenails

It started very quickly. There was no gradual development, just one day I woke up and my nails were causing me agony. One after the other. Big toes first, then it crept to the smaller ones.

If I asked you how your toenails are feeling right now, you wouldn’t be able to tell me. It isn’t something that we can feel, that we’re really aware of, until there’s something wrong with them. My nail psoriasis caused me such pain that I couldn’t put a sock on without being in a lot of pain. Feeling them rubbing against the tops of my shoes became unbearable.

Unlike the fingernails, I couldn’t manage them. They grew ‘backwards’ causing them to be very thick. The grew sidewards and inwards, I suppose like it would be if it was ingrown. I couldn’t clip the nails because of the width and thickness, but also because at this point my arthritis was so severe that I couldn’t even bend or contort my body to reach to do it. My boyfriend loves me dearly, but even he has a limit.

The History

On my first appointment to rheumatology I was referred to a podiatrist. On my first appointment, I had insoles and inserts made to try to stop my toes from curling any more and it was agreed that I could have permanent removal on the big left nail. I’ll go in to more detail shortly.

On my third appointment with my podiatrist, after the removal of the first, she reluctantly agreed that I could have one more nail off but that she would not be referring me for any more removals because, and I quote, “I’ve seen worse”. Well that’s great but it’s not a competition. She also declared that she would use all her powers to forbid me from having toe straightening surgery. Why? Because I turned up to the appointment without socks on (as stated before, socks hurt my nails like a bitch) and because I hadn’t taken her advice to buy granny flesh coloured velcro shoes. To cut a long story short, she dismissed me from podiatry, ordering me to not return to see her, I left the building in floods of tears on the phone to my Mum, declaring that I would find where she lived and burn her house down.

Slight exaggeration. I’d maybe just let it burn half way down. (I’M JOKING).

Cue frantic googling of private practices in the greater Aberdeen area who would remove them in return for money.

On my second removal session however, I was treated by the most wonderful woman named Frances.

Frances was an absolute wee babe. She not only agreed to take two nails off at that session, but that she personally would book all my future appointments, meaning that I no longer had to go through the podiatrist. HAHAHAHA TAKE THAT. Plus orthopedics agreed to straighten my toes shortly after so I win again!!

I think I had 6 nails that were riddled, but I asked Frances if it would be possible to have them all removed, even the healthy ones. Why? Everything was happening so quickly that I felt it was inevitable that I would shortly have psoriasis in all of them. Frances agreed with my sensible logic, and that is what has led me here today.

The Logic

I decided that permanent removal would be the best solution for me. If something is causing you a problem, and you know that you can fix the problem by removing the source, you’d do it right? Well that’s what happened here. The nails are causing me pain and problems. No nails = no pain or problems. I learnt that after the nail is removed, a thin covering will appear where the nail once was so if you’re self conscious, you could still paint on a fake nail with nail polish.

The Procedure

This is minor surgery. You’re in and out within about an hour. For me here in Aberdeen this is done at Frederick Street Health Clinic.

On arrival, you’re weighed to establish how much anesthetic to have administered. You point out the nails that need removing, and then on to the bed you go. Try to get comfy and try to relax.

The toe obviously has to be injected with anesthetic before any work can be carried out. Be warned, these injections are the worst pain I have ever encountered. The big toes in particular are the worst. I’ve been injected directly into my ankle joint before and even that was less painful. Whilst painful, once you’ve been injected that’s it pain wise. So yes, it does hurt. I won’t lie and say it doesn’t, but honestly, once it’s done, you’ll quickly get over it.

The toe is injected twice. Once from either side at the base of the toe. I always take my Mum with me so that I can squeeze her hand, but also because she talks to me throughout the injecting to keep my mind off of it. Top tip – wear a hoody or a jumper. Why? Because you can bite down on it during the pain. Top tip number 2 – Don’t wear grey. I seem to own only grey sweaters and each time I’m injected I sweat so much with fear and pain you could probably wring me out. Top tip number 3 – if like me you’re a glasses wearer, take them off. It helps not to see things in these situations.

Once the toe has been injected, you’ll wait a few minutes for the anesthetic to work. Your toe will be proded by a little sharp stick and assuming you can’t feel the sharp point, you’re good to go. If you can however still feel the toe (this has happened to me on a few occasions), you either just wait a few more mins, or you’re injected again. A tourniquet will be applied to stop the toe from bleeding.

A screen will now be put up so you can’t see your feet. A bit like a little toe cesarean. The podiatry surgeon will then get to work on removing the nail. I’m not going in to detail here because a) it’s grim and b) what I don’t know doesn’t hurt me.

Once the nail has been successfully removed, the area is rubbed with phenol acid. This sounds scary but remember, YOU CAN’T FEEL A THING.

What is the acid for? It’s to kill the nail bed off, preventing regrowth. This is what makes the removal permanent.

Once the nails have been removed, they’ll be dressed. The first dressings, the official one, tends to be big, chunky and very bulky, so wear big shoes that can accommodate this. Not big like clown shoes, but big like extra space.

You’ll then have to sign some paperwork stating that you’ve had anesthetic, what to do over the next 24 hours and that you know not to drive. DO NOT DRIVE. Your insurance is likely to be invalid as your toe is numb.

The Aftermath

Everybody is different in terms of when it happens, but the anesthetic will wear off.

My first big nail removal, I had barely hobbled to the bus stop (all of 400 yards away) before I was crying in agony. Pain level 10. I got home and was writhing around in pain. Curled up on the bed crying my eyes out. I couldn’t get painkillers in me quick enough.

Other nails have had a gradual wear off and little pain. Although I am smart enough now to know to take two painkillers after I’ve left the surgery.

Rest for as long as you feasibly can. Feet up, keeping weight off them. For me I take 48 hours off from life to rest them, although in an ideal world, I would take at least 5 days. This may seem a tad extreme but when I return to work after my standard 2 days of ‘working from home’ (HAHAHAHA, that ol’ chestnut) I instantly regret it and hate myself for going in.

The Aftercare

You’re issued with an aftercare booklet, however I decline them now as I’m an expert, so I’ll have to explain in my own words.

Keep the toe dry for 24 hours at least. You can shower with dressings. Which I was never told when I had my first nail off. I literally kept that foot out of water for 10 weeks. I had to become very inventive:

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Yes that’s right. I made a bin bag shoe. Thank goodness the woman who owned this flat before had a bath with a little shelf. The shelf was a godsend.

Anyway. You’ll be required to keep your toes clean and as sterile as you can. You’ll do this as follows:

  • Boil a kettle of water
  • Add this water to a large bowl
  • Add about 2 teaspoons of salt (I don’t know the exact amount any more, I just know by pouring and experience)
  • Leave the water to cool, THIS IS VERY IMPORTANT
  • When the water is no hotter than 30 degrees C (be sensible here, if the water is on the cool side of warm, you’re ready) then it’s good to be used
  • Tip – I pour my boiling water then I take a bath because when I get out it’s cool enough to use, but also because you’ll need to change the dressing if it gets wet, so makes sense to do the daily dressing after bath/shower time
  • Get your dressings and towel prepared
  • Pop the toes in the salt water for a minute, maybe 2
  • Remove toe, dry VERY CAREFULLY and try not to touch the wound (I leave to air dry, I just use the towel to pop my wet foot on)
  • When the toe is fully dry, dress the toe
  • The dressing should be placed directly over the wound, shiny side down (I very loosely tape my dressing pad to the toe to prevent it slipping around)
  • Pop the tubular bandage over the dressing, it should be twice the length of the toe. Then twist the bandage and pull the other half down. This means you wont see the top of the toe
  • I then use tape to secure the bandage. DO NOT WRAP THE BANDAGE OR TAPE TOO TIGHTLY BECAUSE THIS CAN REDUCE BLOOD FLOW. Take it from someone who knows. If it feels too tight at any point, redo it
  • Repeat this every day until the wound has healed. It can take weeks. I do mine every  day until it has completely healed. Better to be safe than sorry
  • Healing can take anywhere between 6-12 weeks.

Things to Note

As you’re required to change your own dressings, you’ll need to have stocks in ready. When my leaflet explaining what would happen arrived in the post a few weeks before the first procedure, it stated that not all of the required items were available on prescription.  Even though the tape and the sterile dressing pads are available on prescription, I decided that I would order all of my own supplies through amazon. This might be useful if you’re in England and have to pay for your prescriptions, amazon might work out being cheaper.

I use the following:

https://www.amazon.co.uk/Religauze-REL481-Tubular-Gauze-Size/dp/B00B2LLEVA/ref=pd_nav_hcs_rp_t_1?_encoding=UTF8&psc=1&refRID=40XZV03YCGKD1VBDD84V

You’ll need to adjust the size of the gauze depending on which toe you’ve had work on. Big toe = bigger gauze.

https://www.amazon.co.uk/Mefix-Adhesive-Fabric-Dressing-5cm/dp/B002ZH2Z04/ref=pd_nav_hcs_rp_t_2?_encoding=UTF8&psc=1&refRID=E3SVSK7MMQ9FVHY2HGH8

I cut this into the sections, and then I halve them to make them more manageable sizes.

https://www.amazon.co.uk/MELOLIN-INDIVIDUAL-STERILE-ADHERENT-DRESSINGS/dp/B00C0AVMHS/ref=pd_rhf_pe_s_cp_0_6?_encoding=UTF8&pd_rd_i=B00C0AVMHS&pd_rd_r=V130NJB9X4G9N165V1RJ&pd_rd_w=9H84a&pd_rd_wg=Q0jkG&psc=1&refRID=V130NJB9X4G9N165V1RJ

Again, I cut these in halves. This is my personal preference, but half a dressing means that it’s less chunky and it’s easier to apply and tape the gauze, no trying to fit the whole dressing in.

The leaflet also stated that I would be back to the clinic a few days later for my first dressing change. This is no longer offered here. I appreciate each NHS is different but bear this in mind. Which nicely leads me on to….

Ask the podiatrist HOW to change your dressings. Because I was never given ANY information on this and had to learn very very quickly what to do. It was trial and error but after the first maybe 10 times, I’d perfected my technique. Although bear in mind, each toe is in different positions with toes/no toes either side so you’ll have to adapt your technique but you’ll become a pro.

If you suspect infection, go to your GP. I developed two infections on the first big toe, both of which had to be treated with antibiotics. I was on methotrexate during this time so was at a heightened rise of infection, so bear this in mind. In my experience, if you’re concerned about the healing, or lack thereof, booking a nurse appointment might be worthwhile. For toe number 1, I booked an appointment because on top of infections, I also had no idea what the toe was supposed to look like or it it was healing. I then started to worry I was overreacting, but the nurse was really sympathetic and it was reassuring to hear that the toe was healing nicely, and that my dressings were doing the job.

Here’s a wonderful selection off photos from over the last year for you to enjoy

 

 

 

 

Today went well, the three nails off were all declared healthy but my request to have them off anyway was still fully supported and for this I am incredibly grateful. I am however in a lot of pain now. Having my fused toe injected (second on the right foot) was literally the worst injection to date, and I did cry, but the team were lovely and my Mum, as always, was there to support me. The anesthetic wore off very quickly and I’ve been popping tramadol like they’re sweets, but still very, very sore. I am due to log on from home soon to work but I suspect I am going to need to nap.

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Feet up on my sofa, Disney pjs on (are there any other kind?), cat on my legs, endless supplies of cups of tea.

If you’ve got this far then as always, I salute you. If you’ve been considering permanent removal then I can’t recommend it enough. If you’ve any questions or are curious about anything then please get in touch.

I’m off to put Aladdin on, coorie in with my cat and marvel at being another step closer to my own personal recovery.