Tag Archives: steroids

Day 4/7 Steroids for possible MS relapse

MeSsy days!, , , , , , , , , , ,

20 tablets down, 15 to collect today! Another 3 days left!

Oh please, let there be a miss calculation somewhere!

I’m sure its only normally 5 tablets all together in the morning for 5 days!

Chakra healing meditation

If anyone has ever thought about meditating but unsure where to begin….

A great way to start is with ‘guided meditation’ This is a brilliant way for me to meditate, it keeps me connected, especially when I’m feeling as tired as I am while on Steroids!

A brilliant app that I use is called ‘insight timer’ which is where I had this mornings meditation from.

Its a free app, in app purchases can be made for ‘classes’ which are fantastic, or you can just still to using it for free, which is what I tend to do.

So, I’m meditated, medicated & ready for Steph to pick me up!

Tysabri infusion number 100! Bring it on! And then an afternoon of sleep!

Advertisement

17th Instalment: The Steroids

MeSsy days!, , , , , ,

Thankyou text

 

The steroids

My first experience of steroids wasn’t one I wanted to experience again!

I was so frightened to take the tablets. I kept delaying, using work as the reason I couldn’t take them at that time. I had to cover at a different branch so I had planned to start them the weekend after I had finished covering at Knowle.
This was an excuse, not a reason!

It wasn’t until I experienced the loss of feeling in my feet and my MS nurse making it very clear to me how important it was to take the steroids that I started the course of tablets!

The neurologist prescribed 10mg Omeprazole that I had to take before I took the steroids. These were to protect the lining of my stomach as Steroids can cause digestive problems. Anyone with previous gastric problems should take medication to protect their stomach. I have had problems in the past with my stomach and so would definitely need these tablets.
I have since found out that this medication is always prescribed at my hospital for anyone who is about to undergo treatment of methylprednisolone (Steroids) for a MS relapse.

When I saw that one of the side effects to the steroids was indigestion I was so worried about taking them. I had a bad feeling because of my earlier history of stomach problems. This was a ‘reason’ for delaying taking them not an excuse!

 

It was the day after speaking to the nurse that I decided it was time to ‘put my big girl pants on

 

I took my ‘pre’ steroid tablet (Omeprazole) easy!

Next I opened the bottle containing the ‘high dose oral methylprednisolone’- steroids. I put out the palm of my hand and gently shook the medicine bottle until the tablets gathered in my hand.

5 tiny blue tablets taken all at once everyday for 5 days! To be taken with water or juice. That is all it said, no other specifications.

 

Oh my the taste! As soon as I put the tablets in my mouth they started to dissolve when they touched my tongue!
The taste of metal was awful

 

I had to find something, anything that I could eat or drink just to take the taste away!
The next day I made sure I took the tablets with fruit juice not water!

I have since been given a tip when taking the tablets, put them inside a bit of bread, small enough to swallow. That way you don’t get the vile taste in your mouth!

 

After taking my first dose of ‘oral steroids’ I continued to get ready for work and headed over to Knowle, the branch where I was covering for the next few days. My partner took me as I have always gotten anxious driving to new areas especially when on a time restriction.
The day went really well, in fact whilst I was taking the medication I felt good but only when I was distracted with work. I felt really positive and I think I performed better!
The truth is, the steroids made me quite hyperactive during the day so when I got home the extreme tiredness hit me!

I was in pain with my joints and my muscles were really tender. I remember feeling as though I had been hit by a steam train!

The positive with the steroids was that I didn’t have any troubles sleeping at night! When my MS nurse asked me how my sleeping was she very shocked to hear that i had no problems!

Although when she found out I was still working whilst taking them she didn’t seem impressed with that! I hadn’t realised it would be a problem!

 

Looking now at what the possible side effects are I think I did quite well!

Lets have a look at my check list of side effects. I have written in red any side effects I had:

  • fever or chills
  • flushed, dry skin
  • fractures
  • fruit-like breath odour
  • full or round face, neck, or trunk
  • heartburn and/or indigestion (severe and continuous) YES
  • increased hunger YES
  • increased thirst YES
  • increased urination
  • loss of appetite
  • loss of sexual desire or ability
  • lower back or side pain
  • menstrual irregularities
  • muscle pain or tenderness YES
  • muscle wasting or weakness YES
  • nausea
  • pain in back, ribs, arms, or legs
  • painful or difficult urination
  • skin rash
  • sleeplessness
  • sweating
  • trouble healing
  • trouble sleeping
  • unexplained weight loss
  • unusual tiredness or weakness YES
  • vision changes
  • vomiting
  • vomiting of material that looks like coffee grounds

More common

  • Increased appetite YES
  • Abnormal fat deposits on the face, neck, and trunk
  • acne
  • dry scalp
  • lightening of normal skin colour
  • red face YES
  • reddish-purple lines on the arms, face, legs, trunk, or groin
  • swelling of the stomach area
  • thinning of the scalp hair

So as you can see out of all the side effects, I suffered from the mild ones!

 

The last day of my steroids was a Sunday. This is the day that I was originally going to start them!

I woke in the night in absolute agony with my stomach! My partner had to phone the emergency doctors so I could be prescribed something to ease the pain.

I knew why I was in so much pain, I had problems many years ago with my stomach that was investigated. The only explanation I was given after my tests was that I have a very sensitive stomach. This is why I reacted so badly to the steroids.

When I was prescribed my steroids I was also prescribed Omeprazole 10mg, this wasn’t a high enough dosage for me & every time since then that I have needed steroids I have to be given twice the amount.

 

We didn’t get any sleep that night and I was in no fit state to work on the Monday. I was due at my normal branch but would be working on my own as were so short-staffed. This meant that I needed to call the area manager to get someone to open the shop and cover me. I also needed to organise a way to get keys & the alarm code to who ever would be covering! I could hardly stand up because I was so worn out from the pain let alone organise all of that!

 

I had to leave it up to my partner to do every thing. She also had to collect my medication that I had been prescribed and let her own boss know what was happening!

All I really remember of that morning was sitting slumped in the passenger seat of my car. Waiting for my partner to get my tablets and leave my key in the café next to the shop for the woman who was covering for me.

I was driven home where I slept for the day, I woke to have some soup for my dinner and then slept through the evening

 

I have never slept for that long before! I was concerned incase I wouldn’t sleep through the night but I did!

I wasn’t able to go back to work for the rest of the week. I felt not only as though I had been hit by a steam train but as though I had been through ten rounds with Mike Tyson!

 

Another good image to show how I felt for the rest of the week is this one:

I not only felt exhausted from how the steroids were making me feel but because I didn’t listen to my body & rest!

Lesson learnt!

Never take steroids and continue to work!

Take time out and do not ignore what your body is telling you!

16th installment: So, I have MS!?

MeSsy days!, , ,

Thankyou text

 

 

 So, I have MS!

Well that was the last thing I thought it was. Until the Ophthalmologist said those two haunting letters to me I think I had only heard MS mentioned once before and I’m not even sure if I remember that correctly!

I truthfully didn’t do any research about it, he told me not to! Besides I didn’t want to start panicking about something that probably never was!
Well those thoughts were wrong! But still, I’m glad I didn’t look! It’s a scary place, the world of MS especially if u don’t know what your looking at

I was given so much information to look at, a big A4 sized envelope full of reading material so my family and I could learn all about what MS is!

I was told about two charities The MS Trust (http://www.mstrust.org.uk) & MS Society (http://www.mssociety.org.uk) Both are UK charities that provide information for anyone affected by multiple sclerosis (MS) including MS symptoms, treatments and living with multiple sclerosis
 
The MS Trust is dedicated to making life better for people living with multiple sclerosis by providing free information to everyone affected by MS and by supporting the health professionals who work with multiple

 The main information was from the MS Trust ‘Making Sense of MS: core pack

It all seemed so much to take in! I tried my best to read the information but it all seemed so unreal & actually very frightening!
I found it incredibly tiring trying to read all the information! I was straining my eyes to try and make sense of the words, this was because the Optic Neuritis was blurring my vision. It had effected my right eye so in really my left eye was working over time to compensate.
I had been told what O.N (Optic Neuritis) is ‘Inflammation of the optic nerve’
I was also able to go onto The MS Trust website and use their ‘A-Z of MS’ section to search for Optic Neuritis to refresh my memory!

Optic neuritis

Optic neuritis is a common eye problem in multiple sclerosis. It is caused by inflammation or demyelination (damage to the nerve covering) of the optic nerve, which transmits the image from the retina to the brain. Optic neuritis is usually transient and associated with good recovery.

The effects of optic neuritis, eg visual disturbance and pain behind the eyeball, are the first symptoms experienced by 25% of people with MS. 70% of people with MS will have optic neuritis during the course of their condition. Like multiple sclerosis itself, optic neuritis normally affects people aged between 20 and 40 and women more than men.

The visual loss associated with optic neuritis is often in one eye only. It occurs suddenly, is progressive and usually reaches its peak after about two weeks before symptoms start to improve. Optic neuritis commonly causes blind spots or areas of poor vision surrounded by an area of normal vision. Colour vision can also be severely affected. Frequently there is pain, particularly during eye movement. Recovery takes from four to six weeks. Optic neuritis is sometimes treated with steroids.

Optic neuritis is also recognised as a condition in its own right. Not everyone who experiences optic neuritis goes on to develop further symptoms of MS, but a significant proportion do.

I had decided, mainly because of how stubborn I am, that I would focus all my energy on my job! Besides, I couldn’t take the time off , I was needed! My boss was on leave due to bereavement and I didn’t want to let her down!
Another branch of the company I was working for was also having staffing difficulties, I had promised the manager that i would help by covering at his branch, this was before I had seen the neurologist, I couldn’t let him down either!
I wasn’t even able to drive because of the Optic Neuritis which meant I had to get a lift to the Knowle branch from my partner before she went to work
This meant we were getting up extremely early & racing around so that she wouldn’t be late for work. I was arriving at the covering branch around 45 minutes early!
I also had some tablets to take that the Neurologist had prescribed me, ‘The Steroids’

Steroids

NICE says: “Any individual who experiences an acute episode (including optic neuritis) sufficient to cause distressing symptoms or an increased limitation on activities should be offered a course of high-dose corticosteroids.” NICE also recommends that steroids should not be given more than three times in any year, and a course of steroids should last no longer than three weeks. Steroids are powerful drugs. They often get a bad name in the media because of their association with athletes and body-builders who use ‘anabolic steroids’ to boost their performance and ability. These are not the same as steroids used to treat MS. Used correctly, steroids can be a very good treatment for different conditions, including relapses in MS. The way that steroids work in MS is not fully understood, but we expect them to:
  •  reduce the inflammation
  •  shorten the duration of the relapse
  •  speed up recovery from the relapse

Steroids don’t affect the outcome of a relapse – any difficulty or disability that might result from a relapse.

Side effects

There are a number of side effects of steroids – as there are with all drug treatments. The possible effects of the drug must be weighed against the possible side effects, ideally in discussion with your MS nurse, GP or neurologist. However, steroids are generally well tolerated when given to treat relapses, and side effects are normally short-lived:

  •  mood alteration (up or down)
  •  altered sleep pattern (often difficulty in falling asleep)
  •  upset stomach or gut – including feeling nauseous
  •  palpitations (faster than normal heart rate)
  •  metallic taste in the mouth
  •  increased appetite
  •  weight gain (usually short-term)
  •  flushing/ reddening of the face
  •  ankle swelling
  •  acne (temporary)

Methylprednisolone, the name of my steroids I still hadn’t taken! But like I said, I was focusing on work! I had read the side effects and I just couldn’t take time off!

It was the first evening after covering at the Knowle branch and I lost the feeling in my right foot! How scary! The next day I still couldn’t feel it properly as I had been told by Sylvia (the MS Nurse I had met)  if anything like this happened I was to phone the umber I had been given for the MS Nurses & leave a message, so this is what I did.

I received a phone call  later in the day from Sylvia, I explained to her how I had lost the feeling in my foot. She asked me how I was getting on with the steroids, I explained to her that I hadn’t started them! She was not impressed with that! This is why I was loosing feeling, because the relapse could possibly have been getting worse! I agreed with her that I would start taking the tablets!

 

I didn’t stop working though! I didn’t think I would need to!  Ha! How wrong I was!…….