Category Archives: Health

So what is rheumatoid Arthritis Like ?

I was diagnosed in early 2020 with Rheumatoid Arthritis, specifically psoriatic arthritis. At the time, I was not convinced of the diagnosis but the symptoms have been getting a lot worse now in early 2021 so I am convinced.

Symptoms :

  • ‘Bone pain’ – a deep ache seemingly from deep inside my limbs. Shoulders, arms, hands, legs and feet. Level varying from 1 – 5 out of 10. Especially bad in the mornings and evenings. Finding a comfortable position to sleep involves lots of wriggling to finally find that position with no pain. Its great for a few minutes and then it starts again. It takes me ages to sleep.
  • Specific pain – it began at the rear of my heels, I could not lay on my back because of heel pain, but now it has moved to fingers and toes. Level up to 7 / 10
  • Fatigue, exhaustion. All I could do was to lay down, too exhausted to read, watch Netflix, listen to the radio. Too tired to sleep.
  • Brain-fog – inability to think straight, to get the right words out. Clumsy. Easily upset. Depression, hiding.

So far I’ve tried hydroxychloroquine which seemed to enhance the symptoms, methotrexate tablets which made me rather sick and now methotrexate injections that wipe me out for 2 days and another 2 to recover. However, after 3 days of just starting steroids a lot of the aches have gone – steroids are not a long term solution.

How will I know that the medication is working ? I’m currently having biweekly blood tests showing two inflammatory markers and liver function indications. Hopefully the inflammatory markers will lower before the liver damage becomes significant. Its all a bit of a balance.

And the prognosis ? Well I hope to find a medication that will successfully blunt my immune system so that it stops attacking my joints and I can get back to some sort of normal life. There are a number of RA medications to try yet, all I need to do is to find one that works.

On feeling down – depression

I’m writing this during the winter early in 2021, during a pandemic. There are a lot of reasons to feel down, but that is not quite the answer.

*** If you are feeling depressed, please seek professional medical help. I’ve tried it and it works, eventually ***

I can think of a lot of reasons to be down

  • The expectation of friends, never being able to fulfil them
  • Feeling in pain for much of the time
  • Nausea and vomiting from migraines and RA medication
  • The impossibility of being in a job that I love, which happens to be killing me
  • Things I am avoiding doing
  • Worry about the future
  • Guilt about the past
  • Current political and social trends

Well I could go on, but all the above things don’t add up to depression for me, they create stress, frustration and often the energy to get on top of them but not depression.

My experience of depression is when everything, even small things seem insurmountable, there is no end in sight where things might improve, there is no point in trying and there is no hope.

I’m not feeling like that as I write this, but I have been there and I have friends who are there at the moment. I am hovering on the edge though. I can feel myself :

  • catastrophising – when you take any small irritation to the logical end, then further into fear and hate, and sometimes beyond. This is a bad place. It almost seems fun at the time, it really is not, and I am now very good at stopping myself
  • avoidance – not answering emails, phone calls. Hiding from friends and family because conversations will not go well.
  • Doom scrolling – read twitter, Facebook, BBC news. Find threads that you know will make you sad, but gleefully read all the bad stuff from trolls
  • finding things to buy on eBay or Amazon that you’ll probably never use
  • loop listening you music that takes you down

This is a great place to consider what would help to bring me back out. How can I help someone who is already down there.

  • I know this sounds a bit wishy-washy, but it works for me. I have a thought experiment. I’ve been given £100,000 and I have to spend it on other people. Which friends need it most ? What would they really like but cannot afford ?
  • Try to remember a time when you were really happy. Who you were with, what you were doing, see if these memories make you smile, or even cry.
  • If you feel brave, then think of the worse case scenario. If you job is *so* terrible, then just leave. Would that be so much worse ? Can you afford it ? Have a quick look at recruitment sites
  • Be with friends. Quiet friends who will give you space to talk. Friends who have been there and have survived
  • Avoid people who are consistently negative, they are dangerous when you are feeling down

Migraines, more migraines and then Nothing..

No photo description available.

I have had migraines on and off since my late 20s, my mother and sister both have migraines too. I wanted to blog a little about my migraine treatments over the last 30 years, the successes and the frustrations and what seems to be coming next. I am worried that once this is on the internet, a prospective employer would never hire me after reading this. So far, I have managed to do my job because have been blessed with understanding Employers and some really exceptional line managers.

Lets go back to the late 1980s. Working hard, two young children, taking turns with my partner to go clubbing in London. I noticed that my hangovers seemed to be getting worse, so that even a taste of alcohol would start off a day of debilitating headaches with sickness. It took me a while to realise these were migraines

Giving up alcohol seemed to help, but there is a huge list of possible migraine triggers.

  • Chocolate – gave up for 4 months, no effect
  • Caffeine in general – gave up for 3 months, no effect
  • dairy – vegan for a month, same migraines
  • citrus fruit – I’m pretty sure that orange juice invokes migraines

Migraine vs Headache

I get headaches as well as migraines. Sometimes a headache will morph into a migraine over time.

So what’s the difference ? For me, I classify a headache as pain without any other migraine effects, see below. The pain of a headache can be more than a migraine but somehow easier to cope with.

I used to worry that my migraines were not really bad. For instance with a low level migraine, I could still work, socialise like a real human being and laugh. I could find distraction in a low level migraine, usually involving concentration and appear ok, albeit a bit tired and grumpy. The downside was that concentration often leads to worse migraine outcomes.

I then found this paintable, and it made so much sense

Image result for pain scale

So, with a headache you get

  • pain

Whereas with a migraine I get

  • pain
  • nausea
  • vomiting
  • tinnitus
  • Intense sensitivity to smells
  • Awful taste in my mouth ( this is my biggest migraine indicator )
  • fatigue
  • light sensitivity
  • lack of concentration
  • physically clumsy
  • emotionally clumsy and sensitive

Its usually better for me to be away from people. I can still work, but am horrible to be with.

Next blog post will be about the medications I have tried to help with migraines, but for now I’ll quickly give my experience of Candesarten

I was very sceptical about yet another daily drug to try in order to help my migraine symptoms, but as I had to stop sumatriptan injections I really had no choice. I started 8 mg around Christmas 2017 with little improvement in my migraines, then went up to 12mg in January. My migraines just stopped. No migraines for over a year but then they came back. It was a very nice year..

Covid-19 Astrazeneca Vaccination

Because I have a supressed immune system ( Methotrexate etc ), I was given the Astrazeneca Vaccine first injection today on the 12th of February 2021. The outside temperature was -1 C.

I parked at the Newmarket Racing Centre, where the Rookery Medical Practice have set up their local Vaccination Hub.

The Volunteers and Staff were wonderful. I was directed to a table to gel my hands, another table to confirm my name and then to a station to be injected. The injection was painless. Either the skill of the medics has improved, the needles have become finer or my sensitivity to pain is minimal. As I had driven to the vaccination, I was asked to wait for 15 minutes in the cafe before heading home. I was prepared with a warm cloak.

So, back to the staff and volunteers. They were working in a building with lots of ventilation, windows and doors fully open as it should be. The cafe seemed to be providing as much coffee as they could drink, there was donated chocolate and the cafe provided cups of hot water just so that the volunteers and staff could get the feeling back into their hands.

Seeing the people today was inspiring

https://www.rookerymedicalcentre.co.uk/

https://www.theracingcentre.org/

Methotrexate Injections

Methotrexate is a treatment for Rheumatoid Arthritis. The standard way forward when you are diagnosed with RA is that your Rheumatologist will run you through a set of medications

  1. Hydroxychloroquine
  2. Methotrexate 15mg orally
  3. Methotrexate injections
  4. Humera

I’ve currently progressed to the Methotrexate Injections

Meth Injection

The manufacturer has a website with a video of how to use it : https://www.methofill.co.uk/patient

It was almost painless to use, much less painful that the sumatriptan injectors for migraines that I used to use. I did feel odd afterwards and was glad that I was in bed, the next day, Tuesday was nauseous and Wednesday was the usual migraine and generalised pain ( 4-6/10 ). Better by Friday I hope.

This is a 15mg injection, this should start to have an impact on my inflammatory markers ( ESR and CRP ) soon, but I have to keep an eye on liver breakdown protein to make sure that my liver does not take too much damage ( it can regenerate ? ). My Rheumatologist will increase the methotrexate injection amount as necessary. Blood tests every 2 weeks.

My adventures with methotrexate

I was diagnosed with Rheumatoid Arthritis early in 2020. This was unexpected as I thought my increasing aches and pains were due to fibromyalgia/CFS or something. I was a little sceptical about the RA diagnosis but went with it as my Rheumatology Consultant knew far more about this stuff than I did.

My blood test inflammatory markers ESR and CRP were both elevated, and I had a whole body scan after being injected with a radioactive marker, highlighting areas of bone damage.

After trying and giving up Hydroxychloroquine which make me rather tired and irritable, I was put onto Methotrexate. Interestingly, in the weeks between stopping Hydroxychloroquine and starting Methotrexate, my RA symptoms became much worse with general ache averaging 3/10 and specific pain up to 8/10.

I’m currently on my 6th dose of MTX ( 6 tablets ) and the effects are very unpleasant

  • nausea/vomiting on the 2nd/3rd day
  • Vicious migraine on the 3rd/4th day
  • appetite loss for most of the rest of the week ( this is good )
  • no noticeable effect on RA symptoms

I’m going to try for injectable MTX, and if that does not work, then some other DMARDs

https://www.versusarthritis.org/about-arthritis/treatments/drugs/disease-modifying-anti-rheumatic-drugs-dmards/

All of this does seem to be the standard route for treating RA, trying cheaper/safer drugs to start with and then work on to the more difficult ones. Trying one drug, feeling terrible, stopping, feeling terrible, trying another drug does take a toll on the patient especially if they are trying to maintain a full time job.

Stopping the RA treatment is not really an option, as RA permanently damages the body, not just the joints but heart, lungs and other organs. If I’m not effectively treating the RA, my body is deteriorating.

So, my inflammatory markers : ESR is 53 ( normal = 30 ) and my CRP is 9 ( normal = 5 )

I’m waiting for these markers to start going down.