Christine: Age 41.

Diagnosed:
June 1998.

Previous Medications:
Rebif - 7 years Dec1999 to Dec 2006.

Copaxone - Dec 2006 to Aug 2007. Adverse reactions and side effects.

Current Medications:
Citalopram 10mg

MS History:
6 relapses in last 15 months, 5 IV steroids and one oral –all methyl prednisolone

Main problems:
Eyes, including oscillopsia for over 12 months, balance, gait problems.

My symptoms were hell:
- I couldn't speak
- I couldn't walk
- I couldn't get in/out of the shower
- I was virtually bed bound for about 6 months
- my vision bounced wildly as I moved
- my right arm was numb from my hand to my boobs
- I was depressed (no surprise!)

I have learned so much in the last 6 weeks!

I was prescribed on Friday but pharmacy couldn't get it for Monday, so had to wait until following Monday. Total of 10 days from prescription to infusion. Scared me a bit cos it was so quick.

I was only 12 days out of IV steroids - still ok, and 5 weeks out of Copaxone.

Blood tests and urine tests have to be done each time to check liver function and look for infections. ECG is NOT required for Tysabri, so if they try to make you have one, refer them to the instruction booklet....

Oh! and how do I feel?

For the first week, I was convinced I had PML, despite showing no symptoms of it whatsoever!! My husband had to keep reading out the symptoms whilst I said “No” to each one.

Once I’d sorted that out in my mind, I relaxed, and looked forward to the next infusion.

I didn’t notice anything immediately, neither good nor bad.

After 2 weeks, I started to feel like getting out of bed..started feeling interested in the outside world. Started thinking about having a Christmas Party! How weird – I hadn’t thought past having my breakfast for over a year!

After 4 weeks, 2 days before No2....OMG sex drive back with a vengeance...WAHOO!!!

No. 2 infusion was on 22 October. I’ll post again for month 2 later.

• No side effects apparent.

• I’d gone into the hospital in a wheelchair at 10am.  Left at 7.30pm and WALKED back to the car – about half a mile through the hospital corridors.  My eyes were very calm – almost like I was being given a preview of how things were going to look…not as good the morning after, but hey, what could I expect after only 12 hours?

• My bouncing vision started to calm down at the end of week 5!!!!!  
This is really significant for me.  It has plagued me for 15 months, and I thought it was permanent.  Tysabri is showing me otherwise.

And I want to scream it from the rooftops!

I had tried loads of different meds – gabapentin, baclofen, memantine, thinking about clonazepam.  Glad I didn't try any more.  I’ll wait and see where everything lands !

By week 7 the residual dizziness is calming too, having an enormously positive effect on my balance and walking.  And I feel like there’s every chance that it will continue to improve.

• Week 7 – 500m walk with my dog and husband, after building up from nothing.  Also went on a 3 hour shopping spree.  Bought some clothes to update my wardrobe, which had been so horribly neglected.  Had my hair done too – because I felt like it for the first time in ages!

• My numb right arm and hand feels less stiff.  I’ve peeled vegetables and made gravy!  I can use the keyboard on my computer more freely. Starting to come back to life.  Numb since early September – don’t really know if this is just how it would have recovered anyway?

• My freezing cold hands, feet and ankles have warmed up, so I don’t have to wear socks in bed, and they don’t feel cold generally around the house.  This just crept up slowly, and I only noticed it in week 5.

• Headaches have dwindled away.  They had been present all the time.  I noticed this as my stock of paracetamols has not dwindled and I haven’t bought any more!  Still get the odd one, but in a normal sort of way.

Generally
Still a way to go, but I feel like I’m on the right road.

I’ve started tidying cupboards, sorting things out that have waited over a year for me to attend to.  I don’t want to just lie on the bed listening to the radio anymore.  I’m coming back to life!

I’ve been to the supermarket because I felt like it!!

I don’t feel desperate for the next infusion like I did last month – I can still feel its very positive effect, even at the end of the four weeks, I still see noticeable improvements every day.

I feel more ordinary and normal now – my day-to-day achievements have stopped taking on gargantuan proportions in my mind!  I’m starting to go out without planning every minute detail.  It’s great!

I feel like Oliver Twist…”Please Sir, I want more!”  I have only just started to appreciate how very ill I was.  I am very fortunate to have the opportunity to try tysabri, and the speed at which my neurologist moved was just fantastic.  I’m looking forward to my life being completely transformed.

Next infusion:  Monday 19 November.

Tysabri no 3:  weeks 9-12  Infusion 19 November 07
4 weeks to 15 Dec 07

Side effects
• Day 2,3 ,4   after infusion – absolutely tired out.

• Touch of heartburn in 2nd week,  Had it before after steroid infusions,  Seems to be same as I felt last month too – there might be a pattern emerging.

• Spots (or zits!) on my face and shoulders week 3 and 4, nothing that a touch of germolene can’t handle!  Again, repeating from last month.  Pattern?

Symptoms
• Oscillopsia has really calmed down, about 80% normal.  Absolutely delighted.

• Residual dizziness is calming too.  Helped greatly by physiotherapy that I’ve started this month at the local hospital.  Due to under-use in last year, I was not walking well.  I have been doing a series of exercises targeting my thigh muscles, and it is working well.  I am left working on my left knee which wants to “lock” back and as I walk, and shakes, which makes my eyes shake too.  I am confident that this will recover positively now that I know what I am targeting.

• Walking 450 yards twice a day – trying to do little and often.  Need to keep warm whilst outside, the cold weather is no good for me.

• Numbness in my right hand is going – can move all my hand properly now, and arm is more or less normal.

• I am cooking full meals now and washing up successfully!

• I have been out for Christmas Shopping days, just a short tea and cake stop in the afternoon!

• I got out of the car at the kerbside and went into the butcher’s shop to choose meat.  I haven’t done this so far this year because I couldn’t balance or move well enough.  Big achievement.  So good, I did the same the day after to the paper shop!  I know it sounds really small and insignificant when you read this, but I hadn’t been able to do even that.  I have started to be able to manage the simple things in life.

• The physio and Tysabri combination works well.  I am having more success with physio now as Tysabri is calming my brain, and allowing the muscle to work.  I feel less frustrated as my body takes advantage of the effort I am putting in.  Previously, no matter how much work I did, I couldn’t recover.  I don’t feel like I am failing to do enough now.  I can see and feel the benefit of my efforts.

• I had been so very miserable; no respite from my symptoms for more than a few weeks, never knowing what was round the corner.  I am only now starting to understand the pain and pressure that my illness was having on my husband and family.  I am trying to get my head around the relief that I feel as I am coming back to life!  I want to be alive.  I want to go on holiday.  I want, I want, I want…..…I want more!!     I can laugh again, make witty comments, finish the Times crossword without referring to the dictionary!  My cognitive function and mood are inextricably linked.  And I am starting to think about other things than feeling so ill.

• Writing this diary for others to read really helps too.  It gives me the chance to consider my position, and throws up for me to acknowledge the great progress that I have made in such a short time.   I consider myself to be very privileged.

• The third and fourth weeks after infusion appear to be when the biggest advances in my recovery are made.  Pattern has emerged over the last 3 months – I hope it continues like this!  It feels like someone is slowly peeling back the cover that has been hanging over me.  Looking forward to 2008 now.  Merry Christmas to everyone!

Next infusion: Monday 17 December 07, with diary entry due 4 weeks later.

I arrived on the ward at 10 am after having my bloods taken.
“Oh, we weren’t expecting you today, we don’t have a bed for you, and can you come back next Monday?”
Christmas Eve….but I had made plans.  “NO,” I said. firmly.
Oh don’t worry, we’ll get you your treatment.  You can sit here..on this chair.

Seven (7) very uncomfortable hours later, I left the hospital, and the upright chair, infused.
I was also FURIOUS.
How could they not be expecting me??
Come back the day before Christmas??
Then I remembered:  it only matters to me.  I’d be the only  one losing sleep about it..

Looks like I’ve missed the chance to join the Observational Trial that I’d asked for.  You have to be referred to Biogen before the 4th infusion, week 13.  And that was missed.

Rant over.  So, down to the nitty-gritty.

No heartburn at all this month, despite rich Christmas food!
Zits/spots – a few appeared during week 4, germolene still adequate!
Not so tired after the infusion this time – maybe because I had Christmas to concentrate on, things to do!
• Oscillopsia is still at acceptable levels – but I would still like more calming!!
• Numbness in my right hand is still improving
• Physiotherapy is doing great stuff.  Walking the dog twice a day now (rain permitting!) but the freezing cold weather really does me in!  Have to wrap up like an Eskimo all the time!
• Residual dizziness is linked to my gait.  Like I said last time, my left knee shakes as I put my foot to the floor, which makes my eyes wobble.  Now I’ve progressed to walking around the house with no shoes on – previously always need a very small heel to walk, can do both now!  I bought an aerobics exercise step to do physio – I live in a bungalow, so tricky to do the step exercises.  Working well.  Linked with proper walking with the dog, I can see the progress I am making.

4th week after infusion has been the best this month, but that might be because I was just too busy to know what was going on with me over Christmas and New Year weeks.  That is not a complaint!!! I was able to go to all the parties I wanted, and even held a small soiree of my own!!  Yes, I actually had rent-a-crowd to supper!!  How good was that!!  What an achievement, although my husband did a lot of the niceties..

And to top it all...Get Ready for This…

I’M GOING ON HOLIDAY TO BARBADOS NEXT WEEK!!

Without tysabri none of this would have been possible.
I consider myself to be very fortunate.
Next infusion due 14 january 08.

My diary for 4 weeks to 10 February.

Infusion went smoothly after waiting half the day on an upright chair again, and a lecture from Sister that tysabri infusions take time…I know that, and I am very grateful..but do I have to sit in an upright chair all day?  If my parents were big in the hospital, could I have a bed, like other patients on tysabri…?  She’s sure there’ll be a bed for the day next month, after all, she just didn’t realise that I wanted a bed not just a chair…I won’t hold my breath.

Ranting again, eh, such a bad habit.

First 5 days after infusion, I was not as tired as I have been previously. 
• Balance is still improving.  Now able to walk heel-to-toe quite slowly and at speed without overbalancing.  Practising this makes it easier, with good influence on walking and gait.
• Barbados holiday was fabulous.  I didn’t miss out on anything due to my condition
Flight was fine.  9 hours, and I was quietly apprehensive about that – would I pick up an infection from the badly filtered air?  Would I feel ill in Barbados?  NO!!!!
I swam in the Caribbean Sea
I walked up and down 5 steps to the beach
I walked in the sand
I waded through the breaking waves
I collected my breakfast & lunch from the buffet and took it back to the table
I walked alone from the beach to our room
I danced
I played pool (badly!)
8 hour flight home, and I slept for 4 of them!
Recovered form jetlag within 24 hours
Got bloods checked for white blood cell count to check for infection on my return, as next Tysabri due in 7 days AND I DIDN’T WANT TO MISS IT!
Amazingly, white cell count was normal, so no antibiotics necessary!  I had been quite anxious about picking up an infection – 2 long flights and 10 days in the Caribbean…but I am fine.  I can start to relax about going on holiday safely now.

• So in short, it was wonderful.  A huge achievement for me, because I know how ill I’ve been, and I’ve watched my recovery day by day.  What may seem to be very ordinary activities, described above, would have been impossible, bearing in mind that I could hardly make it to the bathroom 6 months ago. 
I feel so very privileged.  I thank Mr Biogen every single day for giving me back my life.
• I still want more!  I want my vision to improve so that I can drive again.  I haven’t sold my car yet ~ I just don’t know how things are going to land!
You just never know……
• I need to plan the next holiday now…oh my goodness, where shall I go?  Decisions, decisions…!

Next infusion:   Monday 11 February 08.

Tysabri 6  10 February 08
My diary for 4 weeks to 9 March 08

Nothing dramatic to report this time!.. No holidays to Barbados or anything vaguely exciting…

More energy in the days following the infusion this time.  I think it’s because I was really relaxed on a bed for the day.  My pulse and blood pressure were good.  I’m sure that this influenced the next few days.  I went shopping the following day, and the day after.  Took care not to overdo it though.
Spots or “zits” have been very few this month.  Wonder if my body is getting used to the stuff now?

Been to the optician for new reading and distance glasses.  No sign of double vision, eyes are now working together more efficiently now.  My eyesight has improved.  I can read the lines on the chart far more successfully than last time.  I am now just 2 lines above the line for being able to see far enough to drive!!   Watch this space.. you just NEVER KNOW where things are going to land… I am cautiously optimistic that my sight will get even better.

My numb hand continues to improve.  I know it will recover more, just got to wait patiently.

Tysabri 7 due 10 March..

Chris

My diary for 4 weeks to 7 April

Energy levels better day after infusion.  Went supermarket shopping, walked the dog and did a batch of ironing, all in the same day!!  Not done that for a long, long time.

Again, nothing dramatic to report this month.  Started doing more Tai Chi, lessons and also working at home.  My walking is still improving and I can really target the areas that need it most -  my shaky left knee is calmer, still a way to go, but very noticeable to me that it is improving slowly but surely.  Working on balance too, and again, I can see the results showing in my gait.
Cooking every night now, able to stand at the hob, and able to time everything successfully!  Just wish I could do the ironing…
My eyesight is still “firmer” – the muscles seem to be working together better.  No double vision at all.  Wahoo!
My right hand still tingling and feeling like it is coming back to life

7 days before next infusion, and I am busier than usual.  Also more tired than usual, but is that just because I want to do more, and AM doing more?
I don’t know if my recovery has reached its peak now, or whether I can expect further improvements as well as maintenance of what I’ve got now?
Have to wait and see…it’s not easy trying to be patient!  I want more!

Next infusion is no 8 on Monday 7 April 08.

My diary for 4 weeks to 5 May

Dramatic improvements seem to be levelling off,  I am consolidating my position!

I am cooking every day now; it’s getting easier and easier. I am not stressed out about timing things to be ready in unison, it just happens cos that’s normal! Becoming more ordinary everyday occurrences don’t seem so major any more….although I do still very much appreciate how fortunate I am.

I have given my Ironing Fairy a month off (Thanks, Mum) and done all the ironing myself.

I have cleaned the house and hoovered it, mopped the tiles and wooden floors.  Feels like MY house again.

Been shopping to the supermarket each week, and been to local butcher regularly.

My life is starting to take shape again!

I am still very frustrated at not being able to drive – now that I feel like doing things I want to be able to get there under my own steam.  Not given up hope yet though, I don’t know where things will land.  I am very pleased to report that I havr been reading a book this month!!!  Martina Cole “Two Women” – a bit gritty, but hey, I AM READING AGAIN!  Still hard work (isn’t everything?) but the improvement in my central vision allows me to see “around” the words.  WAHOO!

Trying to be patient is so hard… I still want more!

Next infusion No.9 on 6th May after Bank Holiday Monday.

Christine

My diary for 4 weeks to 2 June 08

Went to concert at MEN Arena in Manchester on 13th May.
Nasty, steep steps but got to seats and back ok, and  even managed to dance a bit!  Got easier as the night went on!
Morning after – stripped and changed the bed, washing out on line by 11am. Took Max, my dog for a walk too – about 500 yards..  Loads of energy – I’ve been trying to eat more bananas to boost it, but not had one today yet!

Bit of a setback in week 3. I ended up on an impromptu shopping trip that I hadn’t planned for. Very, very ordinary sandwich for lunch, then shop til you drop.  Nothing I wanted to look for or buy, I ended up trawling through racks and racks of clothes that I would never have touched normally.  Nowhere to sit, even for a few minutes.  Moral of the story:  I will not just say “Yes” again when invited to go out.

Took me more than a week to recover, and I was so mad with myself.

In an effort to recover (!) I have booked a 2 week cruise round the Eastern Mediterranean in July….marvelous what the prospect of a holiday can do!

My numb right hand is still improving, getting more feeling back, though the progress is painstakingly slow.  Also walking 2 or 3 times a day now, about 500 yards a time, building on it very slowly.

Next Tysabri due Monday 2 June, but postponed to Thursday by hospital as they try to streamline the procedure to avoid me spending 8 or 9 hours at the hospital.  Will report again on 4 weeks, around 30 June.

Christine

My diary for 4 weeks to 3 July

This month saw the addition of Baclofen to reduce the bouncing vision when I walk.

I had tried it previously with Copaxone which gave horrendous results.  So I was slightly nervous starting it again, but it has been successful.

The impact on my vision has been remarkable, and I am trying now to undo the bad habits I had got into – I had been trying to stop my vision moving by trying to accommodate it in my gait – not good.  So I’ve now got to stop walking whilst slapping my right foot on the floor.  It’s not so easy....

Christine

My diary for 4 weeks to 31 July

Good things to report again.  I had a very good holiday, very pleased with the way I coped with the cruise.  The ship was huge, just going to the dining room was a trek, but I was fine!

Did several excursions ashore, but still wanted to do more, to walk further.  The Baclofen had a really good effect, and I am waiting for a physio appointment to see if I can do anything more to help myself.

I’m also going to get my distance vision tested again – I KNOW I am so close to being able to see a number plate at 20 metres…I’ll keep you posted.

Christine

Still on the up!  Wahoo!

I have switched Baclofen to Gabapentin which has vastly improved my whole outlook.  I am steadier, walking better, and I have joined a local Exercise-On-Prescription gym course.  I need to get stronger; I feel that my muscles need challenging a bit more…!

I will join the gym at the end of the course – I have really been able to pinpoint the areas that need attention.  I continue to do the core exercises that the neuro-physio gave me.

I am walking better up and down slopes; I am still short of the mile that I crave.

Big news on the shoe front. I haven’t worn heels for about 4 years.  Last night, I went to Sainsbury’s in an old favourite pair of shoes that I’d refused to throw away.

I successfully negotiated the trip!!  Granted. I was pushing the trolley, but hey, so was everybody else!  AND I DID IT!  (Had a pair of flatties ready in my bag just in case, but didn’t need them).

My goal is to wear heels on Christmas Eve,…and I know I’ll do it.

The day of the infusion has vastly improved, as I am now able to get bloods done with GP’s surgery a day or two before.  There is now a dedicated team that carries out the infusions.  There is now no need to spend 12 hours or so on the ward.  Double Wahoo.

I’ll keep in touch in another 3 months.

Christine

My diary for 3 months to March 09

Tysabri still seems to be keeping me settled.

As I am able to do more, and WANT to do more, the fatigue is really bothering me.  Gabapentin is working well, and the oscillopsia has really calmed down.  It gets worse as I get tired…

I tried Modafinil, and eagerly walked a mile with the dog on the first weekend!

BUT (and it’s a big but) the side effects then hit me, and were totally intolerable.

My next dilemma: should I try amantadine or just accept the tiredness, doing my best to manage it?

I have decided to do more, shorter walks, and try to build up from there, instead of killing myself to do a kilometre.

I have decided that as I have accepted that I will not drive again because of my eyesight, I have sold my car.  So, because I can’t get out much, I have decided to become a Domestic Goddess in the kitchen, and have started cooking and baking.  My Home Made Scones are light and fluffy – but my Toffee Pavlova remains my signature dish!

I saw my GP, who was great – he told me I’d taught him a lot about MS in Me, and he treats me as a partner in managing my condition.  I walked out feeling 10 feet tall.

Next on the agenda – a holiday to Rhodes in May.  I’ll let you know how it goes  in my report in June.

Christine

Well, two years are up next week, with a good two years to report.
 
Provision of the infusion has become much slicker- now takes only about 6 hours on hospital on the day instead of nearer 12!
I am newly enrolled with the NeuroPhysio who is worth her weight in gold.

Gabapentin is doing its stuff controlling  the infuriating effects of oscillopsia which have blighted me for over 3 years now.
So I am working hard at improving walking function.  Getting stronger all the time, going to the gym regularly.

Not driving is the biggest downer – but hey,  I can still take the dog for a walk!

Will report back to you if anything significant happens.

Love from Christine

All going really smoothly until the nurse mistakenly infused no.28 in 23 minutes instead of the regular hour (told the machine there was 300 mils instead of 115.)

My biggest worry was that I would have some sort of reaction and treatment with Tysabri would have to stop.

I was expecting to feel rotten, and of course, I did.  I was dizzier than normal, more tired, my walking suffered, and the zits reappeared on my face!

The nurse said that I shouldn’t have felt any different, that some centres infuse over 20 minutes as a matter of course(?)  I can find no info anywhere on faster infusions.

The moral of the story?  Make sure the nurse knows - 115 mils over one hour – every time.

After the debacle of the fast infusion, I have had a rough 6 months.
I developed side effects to Gabapentin after being on it for well over a year.  Could it be anything to do with the fast infusion??...I’ll just never know.

Had to come off gabapentin, started baclofen, which I have found to be not as effective.

However, I have started challenging my balance systems at the gym, by walking on the treadmill at its slowest pace with no hands on the rails!

Oh my word, I am delighted with the effect it has produced on my vision and stability!

I had an MRI scan in January, didn’t reveal any more than we already knew.

My annual appt with my neuro was brought forward, and I saw his registrar on 3 June.  He assessed my eyes etc. and was pleased to tell me that I have not switched to secondary progressive, so can carry on with Tysabri.  I hadn’t really been aware that this review was on the cards, so no time to worry about that unnecessarily!

I’ve decided to get on with the rest of my life.  Have just booked to go to the 5th Ashes Test at Sidney Cricket Ground in Australia in January next year.  Travel insurance was a bit pricey, but hey!  You can’t take it with you…

Hope that brings me up-to-date!

If you have bouncing eyes and/or balance problems, give the treadmill a go!  I’ll keep you posted.

Christine.