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    You are here : Home » Get Involved » MSRC Interactive » Tysabri® User Diaries » Sonya's Tysabri Diary

    Sonya's Tysabri Diary

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    BIO
     
    I was diagnosed with RRMS in August 2009 and was given the option of Tysabri then, but being young and niave (at 19, and invincible) I thought the risks outweighed the benefits... and started Rebif around November. After 18 months (ish) of Rebif it wasn't doing any good, and I was going down hill fairly quickly- as soon as one relapse was over, another one came along.

    Every relapse made my mobility worse, but my nurse wasn't willing to give me more than 2 courses of steroids in a year, so I generally had to get on with it.
     
    I was put on Avonex in June this year- but still, not much relief from relapses! So 2 relapses later, here I am at Tysabri. My JCV test results came back negative, and I'm seeing my new consultant on 21/11, and they're so eager for me to start I think my infusion will be right after my appointment.
     
    SYMPTOMS so far...
     
    -the balance part of my brain has been fairly well ruined
    -my mobility is terrible, and if I get too hot I'm paralysed from the waist down
    -my legs and feet are usually fairly numb, which doesn't help...
    -more embarrassing things...
    -muscle spasticity
     
    MEDS
     
    -Rebif: 11/09-05/11
    -Avonex: 06/11- 11/11
    -Tysabri 11/11: onwards and upwards!
    -Oxybutin (early 2011)
    -Baclofen

    Update 20th December 2012

    So eventually I have just about "perfect blood", 3 months in a row!

    So Tysabri has started again, and even more amazingly when I met with my consultant to discuss MRI results and treatment, I had NO new lesions :D So despite a stupid year of infection and yoyo-ing I am technically no worse! I was getting a lot better- using 1 crutch but within the past month I've had a cold>bad cold> bronchitis :/ so have been off work for about a week. Annoyingly, my MS and symptoms were normal through the week of poorly, but now I'm back at work I'm hit with the after effects and legs are being stupid again.

    I am on prophylatic antibiotics, and (pfft) catheterise every day to stop infections, which I hated to begin with and it really upset me, but now I just get on with it, and well if it gives me "perfect" blood and means the Tysabri can work towards shrinking the leftover lesions then well, blurgh. It's worth it. Slightly depressing, and annoying, but less so than the MS in the first place, so for now I'll deal with it.

    I know my muscle spasms are a LOT better, I was needing to take baclofen at least 3 times a day, but now I have totally weaned myself off them. After about a year! I have started drinking nutrition drinks every day, but I don't know if I'm allowed to promote any brands, so I won't, and I don't want to tell people that this WILL help, because that is just as wrong as the people who tell lies about CCSVI to vulnerable people, but for me, it's been really good :) my stamina has improved no end, fatigue is gone, and I've lost over half a stone, which makes me even happier :P

    So, I think now is a good time for New Year's Resolutions so, hmm...:

    1) Keep having product X (not brand name, don't look for anything called that lol!)
    2) Go swimming at least once a week (both to strengthen everything, but also because I'm competing with husband :P So far I'm winning.)
    3) Stay healthier, lose more weight
    4) Stress less
    5) Focus on things that matter


    Merry Christmas and Happy New Year!!

    Tysabri

    So, I haven't even got to 11 infusions, because I have to stop the drip for a while. My consultant wants to know why it isn't working for me, so while I have lots of tests - neuro and urological to find out why I ALWAYS have high WBCs. I am on antibiotics AGAIN, but it's more a stab in the dark, as is the theory that I just need (maybe short term, maybe long term) to start intermittent cathetorisation. My bladder is incompetent, so never empties, so is constantly giving me infections. At first it was UTIs but given the persistence we are testing for bigger problems. Why stop at a big problem like MS? Let's find more. YAY.

    So I was in floods earlier when the nurse suggested that I was possibly not RRMS anymore and could already have progressed. She spoke to my consultant who disagrees because I haven't had any new awful symptoms, just repeated flare ups of old ones. I have to have weekly tests to monitor infection status and then maybe I can start again soon.... I am very apprehensive of my immune system coming back with a vengance. Terrified to be honest. This will either make me (by solving problems) or break me (by landing me in a wheelchair or worse).

    So... I will hopefully (fingers crossed) post again soon, though to be honest I don't dare be so positive as before again because it always goes sh*t again, and I don't like disappointing everyone like I have seemed to do more than ever this year. Work are being really nice, and have said I just need to say if I need a break or anything, but I refuse to accept I do too much because plenty of people with RRMS have full time jobs and children, so I won't be petty and stop doing anything just because of stupid MS :/

    Ciao for now...

    Infusions 9, 10 and everything surrounding them...

    So, the past few weeks have been a completely exhausting rollercoaster of events and discoveries, hope and hope dashed. I shall begin where I last finished- that's the easiest.

    After the steroids, I felt amazing, unbelievable things were happening- I was walking (after a fashion) but the way I haven't for 3 years. It was perfect :) ... Then I got a UTI (thank you Tysabri for making me prone to them. I would be shocked given I never had them before Tysabri, but then before I ever had MS I could walk so...). Things deteriorated again, quickly as if the steroids were never there :( I got a course of Trimethoprim, common antibiotic for UTIs, I didn't like them, they didn't feel very effective, but the symptoms went but I stayed crap.

    So weeks of disappointment, nappies, tears and contemplating all sorts. I didn't understand what I'd done to deserve all the rubbish I was getting thrown at me. And more I hated and couldn't understand why my husband deserved this, or why he was still even there. 

    Another infusion, no change. Feeling battered, bruised, fed up and tired I just seemed to get worse. It's all so selfish and self obsessed to focus on how unfair life is (I've never been told it was fair- as my Dad always reminds me!), but I just couldn't get over MY problems. To be fair it wasn't only or primarily the effects of everything on me, but the effects on my husband, who I could never live without. I'm not one to brag (so publically anyway :P) but I don't know how I managed to find someone so amazing.

    But anyway, I digress. So infusion 10 was yesterday, and this is where things get a little interesting. For months my pre-infusion tests have always come back fine but for a raised White Cell count- I'm sure you all know, but if there are any newbies- the cells in the immune system, that fight infections/attack the nervous system in MS. I had always put it down to the fact I have MS, and it is classed as "severe relapsing remitting", so I never gave it a second thought.

    The pre-infusion urine test always came back with proteins and some blood, but given the week of my infusion happily falls in the week's break of my pill, both the nurses and I just thought it was the start of a period. Why wouldn't you?!

    Last week the previous UTI flared up again, and I was given another course of Trimethoprim- which surprise surprise, didn't work. So I went and got a stronger antibiotic- Nitrofurantoin, which is working. Suddenly MS feels much better... less spasms, less tremor, less wobble, less of everything MS, as if I was back to just after the steroids... I am having more tests done to discover if I have had a fairly quiet but still effective infection for the past few months. It has been very sly if I have had one, because it's never shown up on the CRP tests (bloods- infection finder), besides the elivated WBC.

    So... Given my experience of getting too hopeful too quickly, I don't want to think something so simple could actually be the problem, but the further through this week of antibiotics I get, the better my MS is behaving... I managed to walk from one end of my kitchen (not huge but still more medium than small), turned around and came back without touching anything on my travels... I end this Mega Post on a cliffhanger, and I'm sure I am the more eager of us to find out what they next chapter holds... I know probably nothing, but as I always have to say- what if?

    Update 3rd July 2012

    My apologies for shoddy reporting, however I didn't want to post while it seemed that things were not working, AGAIN.

    However, having finally realised that my tiredness and old symptoms were due to a relapse, and not to really feeling the 'need' for the next infusion, I was able to get a nice hefty dose of methylprednisolone, and a week on I am up and about again :)

    Whilst tottering about today, I've had an epiphany. That being, I
    *think* this is my first relapse this year. I say *think* because I can't be bothered to read all of my earlier posts, and neither myself or husband can remember one starting since pre-Tysabri in November...

    It might be tired wishful thinking, but for today anyway, I can be of the opinion that maybe things are changing.

    Given tomorrow is the start of July, this means that thanks to Tysabri, I have gone from having non-stop relapses with little remission, I have had one. If this trend continues (general
    decrease/stability) and I can have a maximum of 3 relapses a year, then so long as I can get steroids if they affect mobility- so far all have, then I shouldn't be awfully affected the majority of the time.

    I am very aware that this is very presumptuous, unevidenced, conclusion-jumping to and damn right Cocky, but in my ready for sleep state, I hope I can be forgiven for this, and hope that I won't soon be eating my words...

    I'm due another infusion on the 9th July, and on the 12th need to go down to London again... I will then update. This will likely be one of two extremes- Eccstatic because life is wonderful, or Far Too Negative/Depressing, bitching that "stupid drug doesn't even work so what's the point". I hope others agree that the former is preferable!

    14/05/2012 - Infusion No. 7

    Well, I am SO ecstatic to say that a lot has changed since the fairly negative 6th infusion!

    As of Saturday, I can walk- yes WALK, the length of the hospital I work at, from the car park up to my office, which is a fair way to go. Not as far as I was walking around the hotel at the beginning of March, but still, a long way!

    I've started being "hugged", i.e my intercostal muscles are having a rave- fairly ouch. This could apparently be a relapse, BUT I do not care! This is the first relapse in 3 years that has had no effect on my mobility! I still couldn't go on a real walk of any length and I don't dare try walking around any distance outside on my own, but still. I'm still using my crutches at the moment, but more carrying as a threat to warn others that if they come too close and make me fall, I will trip them up/ cause some bruised shins!

    I'm hoping that- being warily positive obviously, with the last few days of confidence boosting, plus the help of my amazing physios, I might be able to resume some normality soon :) I hope more than anything I will not regret saying that so openly for the entire world to see that I didn't do it, but don't we all live in hope?

    Infusion No.6

    Well, No.6 came and went, luckily this time there was no drastic drop in blood pressure or nearly passing out, so that was good. I've been fairly disappointed lately, after last month's miracle phenomena of walking by myself, this month has been... rubbish to be honest. I didn't know if I should write a negative post, because I got so much hope from other people's diaries, but then what's the point of keeping a record for people if it isn't honest?

    Either other people have been excessively positive when posting, and not talked about anything negative, or I'm just one of the lucky few for whom Tysabri just isn't strong enough. Speaking to a random neuro last weekend, he told me that so long as I don't get worse than I was before I started then the Tysabri is working, but I was led to believe by everyone that after 2-3 infusions, crutches would be a thing of the past, and everything would be hunky dory. It's because of this disappointment, that I don't think it would be fair to only focus on the occasional positives..

    I hope that I soon eat my words, and this was just a blip while the Tysabri really kicks MS's derriere, and that April showers were putting a dampener on March's progress... Fingers crossed...

    28th March 2012

    Sorry, I know I am inexplicably late, but once again, I had my treatment delayed by 2 weeks thanks to a chest infection! I don't have anything new to report change wise, things are fairly steady, which is better than before Tysabri when 'steady' was steadily falling down a steep slope, at least this steady is on even terrain.

    I think I will improve again this month, but between the chest infection and huge stress at work, and combatting disability discrimination on public transport, this month has been a relative blur. To make a clearer picture:

    1st March: our anniversary (wedding)
    3rd: I walked for the first time unaided in over 2 years
    5th-9th: More interviews
    10th: New house
    12th: Should have had drip
    13th: interview
    14th: interview
    15th: interview
    21st: Train (a joy! being told that because the train was late, even though I had a first class ticket, I was too slow to be allowed to walk up the platform to the first class coach, so I'd have to get from back to front on the train, while it was moving- OUCH! Complaints ahoy, no fear!)
    22nd: 7 hour meeting, then another train journey home (told I was too slow to get to the train before it left, so I'd have to wait on the next train for half an hour before it left)
    24th: Being informed that my contract at work was being extended, without any consultation with myself prior to this.
    26th: Finally getting Tysabri, but not before nearly passing out from the heat/ veins refusing to be found/ BP plummetting from 112/85 to ?/40 :P Nice surprise for the nurses on a bright sunny day :)
    27th: visit from council OT to plan for drive way
    today: Occupational Health assessment for a new job that I will hopefully get, given I have been told there is no reason why I shouldn't get it, and been told that I am appointable for the role. If I find out now that I haven't got it then I will seek advice re. discrimination, because blatantly that would be discrimination based on my disability that does not affect my ability as it is a desk job, and I have until now been totally suitable for it, by the department's own admission!

    So yeah, I think that fact that I could even handle all that (without crying even a bit just once!) is testament to what Tysabri is doing for me! Sorry, this is a fairly long, boring and irrelevant post, but I'm hoping it kind of shows how much I can now do, compared to spending half my time in bed, and the other half depressed because I knew that evening I would be in pain, and then stuck in bed all the next day!

      Hopefully there will be more improvement to report next time :)

    Sonya xxx

    2nd Sporadic Update: I'm walking :)

    Two days in a row, and just inside with even flooring, but more than I thought I'd ever manage again. Yesterday I walked around a hotel. Today same sort of distance in a hospital.

      Finally, a drug that works :) I'm still in a state of disbelief, and more aware than ever that I can't take this for granted. I only expect it to be temporary, which is pessimistic I know, but while I think like that, I can be so much more grateful. Not for a deity, or some magical force, but for the brilliance of modern medicine, and the sheer commitment and compassion shown daily by scientists, nurses and doctors who have made it possible for me to get up and walk.

    I nearly burst into tears yesterday morning when husband and I left the hotel room, without me clinging on, and I waddled my way to breakfast.

      Best Weekend Ever (and it's OK to say that, because my wedding was on a Monday)

    I will probably send another yabbering update before my next infusion (on the 12th), but for now I shall shut up and finish my shift!

    Newsflash 29/02/12

    Another news flash- today I walked from the car park to near my office, without crutches touching the floor :)

    Hardly worth the update, but given it's fairer to any hopeful readers to report the sporadic changes, I thought it could be helpful. Instead of monthly essays that could lead to disappointment if people thought they could wake up one morning and have things back to normal!

     I know I felt like that to begin with...

    Infusion No. 4

    So the Forth Infusion came and went, same as always, all good- no side effects, drip was a little painful at times, but the fluid was colder than normal and in an awkward vein, so nothing to worry about.

    NOW, I know I am late with this update, but I was in such a bad mood because I was having a relapse and seriously thinking about the possible future need for wheels (that I have never done before, or accepted before) that I really didn't think I would be able to sing Tysabri's praises. HOWEVER, I am less than a week into said relapse, and already over the worst of it. So much so in fact that I am toddling around outside again just like before the horror that was the snow :) Obviously, it can't be classed as 'normal' walking (for an adult anyway), but I do resemble an oversized 18 month old just finding their balance and learning to walk more than crawl. The relapse has meant my legs are getting tired even quicker than normal, but for the few steps that they can manage fairly effectively, they are doing just about what they are meant to.

      Through the relapse (I can't believe I'm already using the past tense!), my muscle spasms did get much worse, so that my legs jerked even when I was sitting down and not using them (very bruised knees as a result!),  as opposed to only the frequest display of contortion that is my general standing up routine. I think that this is calming down too, and other 'issues' are much more under control.

    Shame on me for doubting the power of Tysabri! I was cursing my Neurologist for refusing me steroids for now, because he wanted to know what the Tysabri would do, but I suppose I shall have to hang my head and "admit"(perhaps) that maybe I didn't need them :/ The fact I am even considering it should humble him really, given it takes a LOT for me to admit that I could have been wrong and a little quick to make the decision... Obviously, I wasn't ACTUALLY wrong, because that is never the case. But possibly a little less right than usual.

    I am going away next weekend for a Board event, and so I think that's when the test will really be. In brand new surroundings and in front of lots of people, seeing whether I'll be able to effectively toddle, and without the face-planting humiliation that was my last exciting performance at a similar event... I am nervous, but I'm actually daring to think that things are looking up. This walking/toddling malarky has been much more than the one off event that it seemed to be at first, and though I won't let my hopes get too high, I am pondering 'recovery' timescales. Not actual recovery from MS (though I hope that will be possible before I'm a grandmother...), but recovery from isolation and humiliation and bitterness revolving about MS.

    Dare to dream! Until next time, I think I will :)

    6th February 2012

    BONUS POST!

    Like, read 3 get 1 free type thing! I had to get this recorded, just so I know that it's actually been happening today and I've not made it up, or dreamed it or something; I saw my consultant the other day, and he said that the Tysabri wasn't quite having the effect he was expecting after 3 infusions, so he recommend that since my ankle hadn't fully healed (from before Christmas), that I ask GPs for another course of antibiotics to make sure that things fully cleared up, so yeah yada yada, I got more antibiotics yesterday, and after 5 tablets my ankle is much better BUT more importantly, I've been able to 'walk' to my car in the car park outside my flat, with little or no help.

    I've not perfected it yet, and it's not walking as smoothly as was reported after my second infusion, but it is outside and on an uneven floor, and it is FREEZING and the second time it was dark and with a husband getting in the way fussing, and even though it's no distance at all for 'normal people', it's a start, and it's outside, and I still can't believe how quickly things are changing. I says 'things', I mean one 'thing', and it's really nothing special at all, but (in case you hadn't guessed) I can't quite believe it's happening.

    Infusion No.3

    So 18 days after Infusion 2, and seemingly I have not yet exploded so I'm taking this as a good sign. I don't have much to report, I've had the occasional bout of 'normal' walking- by bout I mean a few steps! But nothing major. I'm not sure if my body is trying to have a relapse or if I've picked up a bug from somewhere, I don't feel ill as such, but I feel more wobbly and more tired.

    Hopefully that will go in a few days, maybe it's because of the cold, I'm always worse when temperatures drop, as if my muscles are icing up! I noticed that after this infusion I was totally fine- last time I was a tiny bit nauseous (slightly), but this time nothing at all.

    I can't wait for a)it to start warming up so I'm not persistently like an ice statue and b)things to get better at work. I'm so stressed at the moment, and I'm scared of what it will do to my MS! I know the Tysabri will probably stop me from relapsing and getting worse, but I want to focus on things getting better!!!

    Infusion no4 scheduled for February 13th :) watch this space!

    December 29th 2011

    So, two weeks after my scheduled infusion date, I have just had my 2nd infusion. I couldn't have the infusion on the date planned because I was on antibiotics, with an ankle at least twice the size of any normal human ankle! I was terrified at delaying the treatment, because I ended up going past even the allowed 5 weeks between infusions, but it must be doing something right, because even though I'm currently having quite a stressful time I still have not had my symptoms worsen.

    My bladder is much better, and the control I have now is ALMOST that of a healthy adult! I almost cried when I was able to walk (just a few steps) like there was nothing wrong. It felt amazing. I didn't think that was something I'd ever manage again. But after just one infusion, and a couple of weeks later I managed it. I'm feeling positive. Even though it was a tiny distance, and I haven't done it again, the fact that I was able to must mean that I still have the connections to be able to do it AGAIN...Right? I'm not expecting a lot, but I'm hoping so much that I'll just be able to walk holding my husband's hand instead of clinging on for dear life and nearly pulling his arm off!

    I think the Tysabri has also reminded my immune system what it's actual job is- when I've had any kind of infection before I've been practically bed ridden, too dizzy to move just my head, let alone the rest of me! But this time, I felt dizzy momentarily just twice!! A much more normal response in comparison :) I really am feeling that there might be a way out of this rubbish, although I don't want to get too cocky about it, given arrogance usually results in the complete opposite happening and everything backfiring...

    Maybe it's just that I haven't let myself over heat recently, or maybe I'm just imagining it, but I think that the extra symptoms caused by heat have managed to rein themselves in a bit. I haven't recently been paralysed from the waist down because of the heat. That could be because it's much colder now than before, but even if I've fallen asleep with the electric blanket on full(I swear I'm not 80 yet...), when I've woken up I've still been able to move my legs. Or maybe that was one of many side effects from Rebif and Avonex. Food for thought indeed!

    To make up for my delayed infusion, I'll be having my next one on the 16th January, just 18 days away, not the permitted 3 weeks, but I assume that it will be ok given MS nurse and consultant have suggested it. If I explode or something from this, then I likely won't be posting again, otherwise- I'll update in 18 days! Hope christmas 2011 was good and happy new year everyone! 3 cheers to beating MS in 2012! :D

    Infusion 1

    So, I met my new consultant this morning, and we talked about symptoms and past meds/relapses, plus what meds are 'in the pipeline', but after my squeaking about past meds not working, and the severity of my symptoms, he said that he would be more than happy for me to start Tysabri!

    Within 2 hours I was hooked up and ready to go! I've never had a needle in my forearm, and it was a little weird, but I got used to it quickly and just spent the two hours chatting with 2 other Tysabri-ers.

    It's too early to say what (if any) side effects I'll get from the drip, but I went back to finish my shift at work, and am still feeling fine, if a little tired. Not a lot to say really given there obviously won't be any dramatic changes, especially just a few hours after the first infusion. But I will keep everything crossed, and stay positive! I'll update after the 2nd infusion on the 19th December :)

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