Kirsty's Tysabri Diary
| Date of birth:
19th March 1976
| Main symptoms:
Neuropathic pain, fatigue, bladder urgency, vertigo.
| Type of MS:
Rapidly Evolving Severe Relapsing Remitting
| Tried medications:
Gabapentin, Carbemazepine, Amitryptaline, Copaxone
| Current medications:
Pregabalin, Amantidine, Oxybutin, Omeprazole, Prochlorperazine
| Country of residence:
Okay to be contacted?:
I am from Glasgow, Scotland.
I was diagnosed in September 2001, age 24, with RRMS after an attack of double vision which began in January of that year and lasted 8 months. I repeatedly told doctors that I thought I had MS as my symptoms were similar to those experienced by my aunt who has MS. I was told it wasn't a hereditary illness but I eventually got an MRI and I was right. After all that time, it was kind of a relief to know what was wrong with me, rather than just being left in the wilderness. Obviously, I would rather have been proved wrong.
At that time, in the U.K, there was no treatment. At diagnosis I was told "There is no cure and I can't tell you how it will progress as it affects everyone differently." and sent on my way. It was devastating, yes, but I was determined not to let it change me; I had been at the start of my graduate career when the double vision struck and I intended to get back to that. I completed a Postgraduate qualification and then I went back to work. Everything was as I intended it to be until one evening, three years later when my right leg just stopped 'working' as I was walking home from work. And so began a very bad attack, which led to me being barely able to walk and the beginning of neuropathic pain in my back.
I began attending a therapy centre near me and got my walking back on track through dedication to physiotherapy. I managed my illness through this, a good diet and positive outlook and was averaging one relapse a year until the end of 2009. I also became aware that I wasn't recovering as well after an attack and so began Copaxone in March 2010. I then relapse 3+ times last year and so was sent for another MRI in December last year and my neurologist told me in January 2011 that Copaxone wasn't strong enough for me. My scan had shown disease activity and 3 new lesions since my MRI the year before. I knew this was my best diagnosis as I was scared I'd become SPMS but didn't really appreciate the seriousness of it initially, because of how I was diagnosed, I had had to just get on with things and that has always been my initial response since. I was now Rapidly Evolving Severe-RRMS. My neurologist a said she didn't like the term 'Aggressive' but I think the clinical term sounds worse.
However, it is why I was then offered Tysabri. It all began to sink in the following week when I told my Physio the results and got very upset. In more than 7 years of knowing me she had never seen me cry, even though I've had difficult relapses. I realised it felt like being diagnosed all over again and I could no longer say I had the least severe form of MS. The upset has passed and I am now looking forward to the future and, more precisely, not relapsing this year, hopefully.
Following the testing of my urine sample, I was asked questions to determine if I had a urine infection. As I didn't feel I had, the infusion could go ahead. I was also told that the procedure in dealing with samples that could potentially show infection is different and it means infusions can be given, whereas before a blood test would have been done to rule it out.
I felt fine during the infusion, unlike the girl sitting next to me who felt rather dizzy and light headed. It was the first time this had happened to her and she started treatment around the same time as me, so I'm hoping it's something I don't experience. Overall, I am continuing to feel well in general and stronger.
My physio went through all of the Cawthorne-Cooksey exercises I've been given to do and was very happy with my progress, so it signalled an end to the vertigo, thankfully. I saw my GP about stopping Prochlorperazine and I could do this after reducing my dosage over two weeks.
I received the results of my MRI I had in March and they stated that I do not have any active lesions or new lesions - proof Tysabri is working and I'm happy!
The nurse had to double check with me that I wasn't suffering from a urine infection, due to the results of my urine sample test. Thankfully she agreed I wasn't and the infusion could go ahead as normal.
I felt okay during the infusion although, the nurse had decided to place the drip in my right arm, rather than the left as would be normal. I was told it's not good to use the same vein all of the time. As it'd been fine to use my left arm 26 times previously, I didn't think there would be much difference. However, as a right-handed person I discovered having a drip attached is very awkward indeed any time I moved or just reached for a drink and I don't think I'll let that be done again. I didn't feel any different from usual though and was happy about that.
I would say that I have felt well for the remainder of the month, but I managed to pick up Tonsillitis for the second time in a year. It is usual, as I have large tonsils for it to happen at least once a year, but never usually twice and so I was reminded of Tyasbri's effect in lowering the defence of my immune system. I finish the antibiotics this week and look forward to being rid of it.
My next infusion is next week and I really can't believe how many I have had now, but am incredibly thankful to be on the treatment as it has definitely reduced my relapses.
All checks for infection were clear and so the infusion could go ahead as normal. I get asked several questions before the nurse begins the process about whether symptoms have improved or worsened etc and I always say that none have got worse as being on Tysabri has meant continual improvement of my general health except neuropathic pain. However, one of the questions asks about balance and mine hasn't been good, since beginning to suffer vertigo in my September relapse. Despite perseverance with the Cawthorne-Cooksey exercises given to me by my physio there has been no improvement in this symptom.
This was probably the quickest time the infusion has been completed in, which was a relief as despite reading to pass the time, I am not a fan of hospitals in general and It's good to get outside and get some fresh air.
I felt well in general for the weeks following up to my next infusion in March.
The hospital was very busy today, as my appointment had been moved to a Friday rather than a Thursday, due to the Christmas holiday. I waited a long time to be seen and when I was it was by a nurse who was just covering the ward. My blood pressure and temperature were fine, so it was just a matter of the IV being put in. However, after three attempts, the nurse was unable to find a vein successfully and had to ask a doctor to do it.
Following this, the infusion progressed as usual, with my blood pressure being checked every half hour. It was a long appointment, as the nurses were so busy and I couldn't wait for it to be over with. Following the infusion, I came home and had to sleep for a few hours as usual, I think I sometimes underestimate how exhausting it can be.
Adding to the fatigue though, is the vertigo which just doesn't seem to be shifting. However, my physiotherapist has given me some exercises to do which are supposed to help. Cawthorne-Cooksey exercises, here's hoping. I also saw my neurologist for my 6-monthly appointment. I got to tell her about my relapse in September and the new symptom of vertigo. and she has arranged for me to have another MRI. Hopefully everything is fine and I can continue on Tysabri. Should things not appear as normal, I may have to consider treatment with Campath instead. I also had blood taken for another JC virus test, so I'm hoping I'm still negative as my 2 year Tysabri anniversary is next month, apparently the chances of PML increase after 2 years, for that reason I'd like to minimise my chances further.
As I had no sign of any infection, following urine, blood pressure and temperature tests, the infusion went ahead as normal. I had felt very well for most of the past month, but the next infusion is always something to look forward to, due to the anticipation of feeling stronger afterwards. Though, I was wishing that it may help with the vertigo I've been experiencing since September. Unfortunately not.
My fatigue has continued to worsen this month and I think the vertigo is impacting on this too. The initial improvement I had felt with fatigue when I began Tysabri seems to be over and I wake up every morning feeling as though I've been drugged as I sleep so heavily. 'Luckily' my neuropathic pain distracts from this somewhat.
Overall, I had a good Christmas and New Year and look forward to my 25th infusion in January.
23rd Infusion - November 2013 Everything was pretty straight forward this month as I had been infection free. My urine sample was infection free and my blood pressure and temperature were normal.
As such the appointment went by quite quickly, I arrived at 9.45am and was out by noon.
I wouldn't say I felt as well afterwards as I usually do, primarily because my fatigue is really bad at present, having to sleep for at least 11 hours at night and still feeling shattered when I wake up.
But, I suppose it is winter and it has that effect on me!
Everything was pretty straight forward this month as I had been infection free. My urine sample was infection free and my blood pressure and temperature were normal. As such the appointment went by quite quickly, I arrived at 9.45am and was out by noon. I wouldn't say I felt as well afterwards as I usually do, primarily because my fatigue is really bad at present, having to sleep for at least 11 hours at night and still feeling shattered when I wake up. But, I suppose it is winter and it has that effect on me!
I had had tonsillitis so I was prepared, after what happened after the relapse. I e-mailed my MS Nurse, to enquire as to whether I should attend my Tysabri appointment on the Thursday, when I only finished my antibiotic on the Tuesday. She said as long as I didn't have a temperature etc, it would be fine. I printed off the e-mail and took it to my appointment with me, straight forward, I thought. When I told the nurse who was putting in my IV, she said I should have left a week after finishing the antibiotic before attending for Tysabri. I explained I had checked, showed he the e-mail, but she still wanted to check with my MS Nurse. Unfortunately, she was in her clinic, so that caused further delay before she could speak. When she called the ward back, she said it was fine for me to get my infusion and the guidelines were being changed, the Tysabri nurses just hadn't been told.
Sigh of relief and my infusion could go ahead as normal. Just another longer appointment than usual. Very tired afterwards, though the infusion did make me feel better. Can't believe November will be my 23rd! The time has flown by, it's hard to remember before Tysabri. I have got so used to feeling so well! :)
This infusion took more than twice as long as usual. Having had the relapse, the nurse was hesitant about starting the Tysabri IV and wanted to check with the MS Nurse that this was okay. I told her it had been last year, after I relapsed in symptoms, but I think maybe my explanation of suffering from Vertigo and having to take anti-nausea medication made her nervous of it.
The MS Nurse came to see me in the ward, asked me to describe my relapse and said she would pass all of the information to my Neurologist. She also wanted to make sure I wasn't developing antibodies to Tysabri and asked for blood to be taken, to be tested. Given that I was due to have blood taken anyway, I was left feeling rather dizzy! The MS Nurse contacted me to say that this blood then was not taken to the lab in time, and so that week I had to return to the hospital for more blood to be taken. Luckily, I'm not afraid of needles!
The Tysabri did make me feel a whole lot better than I had been. However, my lowered immunity after the steroids has led to me catching Tonsillitis. So, at present I am house-bound again but this time, on antibiotics. I finish these on Tuesday and, because of the delay on my last infusion, I contacted the MS Nurse to see if I would be okay to receive my infusion on the Thursday. My GP thought it would be okay, but said it was best to check. She said as long as I have no sign of infection, it will be okay. This was a relief. Looking forward to my 22nd infusion next week.
I think everything was fine with this infusion but to tell the truth I should have written about this in August as, writing this at the end of September, I can only think of what has happened in September.
Apologies, but can't even remember this infusion, but I would remember if there had been any problems. I do know that I was aware, throughout the month that my fatigue had returned with a vengeance! But, I just thought it was the time of year, change in the seasons that was affecting me. I had a number of migraines at the end of the month that I couldn't shift.
All of this was a sign, that a relapse was brewing....and it struck at the beginning of September.
I had a physio appointment at the end of August and I became aware that my speech was being affected by numbness in my tongue. I also began getting blurry vision in my left eye, and so realised that the migraine I thought I couldn't get rid of was actually optic neuritis. The numbness in my tongue and mouth, told me that my Trigeminal nerve was being affected again. I went to see my GP for a course of oral steroids at the beginning of September,, thinking I had caught it early.
It was quite a successful course of steroids, with regards taking them and being able to sleep for the first time. My partner had a chesty cough and upon completion of the steroids, I had a week to wait before my September infusion. Being aware of lowered immunity with Tysabri, being made even worse with the steroids affecting this too, I saw my doctor to make sure I didn't have an infection that would stop me getting my infusion and was grateful when he said I didn't.
Taking steroids isn't pleasant but necessary and, usually, I take them and feel better. This time was different though, I felt awful, more physically ill than I have in any relapse before. I ached all over as the steroids targeted the areas they had to, areas that I didn't even realise were affected in the relapse. I had thought it was a minimal relapse, isolated to the optic and Trigeminal nerves. I suppose I shouldn't have been surprised to relapse in September as I had last year and before my MS became aggressive, I used to relapse every September. I had hoped that this year I would be relapse free. But, once a year for the past two years is better than the five I had in 2010.
Things further developed after finishing the steroids, as I realised I felt awful as I was so dizzy I had constant nausea. I felt as though I was going crazy and had to take Stugeron for relief. It did make things less worse but didn't take it away completely. I went to see my GP at the beginning of the following week, having printed off information about vertigo from this web site and I'd also asked people in a Tysabri group I belong too on Facebook if they had experienced this and medication recommendations. My doctor prescribed Prochlorperazine, as had been suggested to me and this stops the nausea. Unfortunately I still have the vertigo.
My doctor said it could be due to damage happening in my cerebellum, which is a miserable thought that the illness is still aggressive when Tysabri is making me feel so much better. Hopefully, my September infusion will make me feel better.
There were no problems at all with this infusion. Apart from, with appointment times.
The hospital have begun sending people who are suspected as having MS to wait in the Tysabri room, before being taken for their MRI. As such, they have been marked as having appointments four weeks later, in the nurses diary. As such, my morning appointment was assigned to someone else, and due to the fact that no other time is suitable for me, I have to take a morning appointment the following day. So, I had gone from a Monday morning appointment to a Friday, since beginning treatment.
Everything is continuing to go well symptom wise, although fatigue continues to be a recurring. The weather has made this worse, as it has been very humid and this is the worst climate for me, making all of my muscles just shut down and refuse to work should I attempt anything remotely requiring physical exertion. I should be grateful that warm weather and this climate are relatively rare in Scotland I suppose.
So, next month is my twentieth infusion, a bit of a milestone I suppose!
Everything is basically routine now, with no hiccups at all on this occasion. However I would say that, for some reason, there seems to be less of an improvement with regards my fatigue, the lessening of which, before was definitely a benefit. But, more importantly the Tysabri is keeping relapses at bay. I suppose I take this for granted now, which I know I shouldn't, as there are no guarantees with this illness. But it is easy to do, being that I no longer feel as though I'm waiting on a relapse to suddenly happen with no warning, as was the case throughout 2010.
This month though, I did see my Neurologist for my six monthly appointment/check up. She was happy that I seem to be doing as well as I am. she informed me that my recent blood results were fine. If I haven't mentioned before, excuse my forgetfulness, but every three months, I have blood taken to be checked, prior to my Tysabri infusion. I told her that I hadn't received the results of my second JC Virus test, she looked through my file and informed me that this was negative also, of which I am grateful. She also mentioned that due to this, I should maybe think of having an infusion every two months instead of monthly. Apparently, it is only given monthly as this is the instruction of the drug company. However, surely someone who is JC + is more likely to benefit from receiving an infusion less often, thereby making them less at risk of PML?
Being that I generally feel less well, the week before my infusion, this is not something that appeals to me. I was told to have a think about it and tell her at my appointment in January. Given that things are going well for me, receiving Tysabri on a monthly basis, I know I don't want to change my treatment process. It has become routine and it works for me.
As infusions are 4-weekly as opposed to monthly, I had both of these infusions in May.
Again, as my fatigue had improved, this infusion seemed to arrive quite quickly, though it was rather strange going twice in one month. It probably felt as though both merged into one in my mind. Though I did have a nurse dealing with putting in my drip, a nurse I hadn't before, who was very good.
In terms of the questionnaire which they go through before the infusion begins, I had had a mouth ulcer. I'm not sure if they ask if that has happened due to it being a side effect or if that could e a side effect of something else. As long as it had cleared up, the nurse was happy to go ahead with the infusion.
I'm continuing to go to the gym, which is helping with fatigue too. So much so, the ever present dark circles around my eyes are fading. I think I'm walking further, probably jointly due to fatigue and stamina improving. As for all other symptoms, there are none that are new, just the ones which are pretty much here to stay.
I have joined a Facebook group. 'UK Tysabri Users' in which people share info and experiences and it is good being able to 'talk' to people experiencing the same, given that we are quite a unique group pf people! Before my 18th Infusion, I will be seeing my neurologist for my 6 monthly check-up. I plan on asking if an MRI will be planned as the people in the Facebook goup, in general, have them yearly.
This infusion was much the same as the last, I am pleased to say that I take it for granted that I will have no immediate, or any after affects at all, Certainly none that are unwelcome. Though it did take longer than usual due to an appointment mix-up, the nurses were finding it difficult to deal with so many patients at the same time and so my appointment took longer than usual.
My fatigue continues to improve, I received an ill health referral from my GP to join the gym. This is something I wouldn't even have attempted before Tysabri. However, I don't feel stronger as such, but the fatigue has lessened sufficiently that I have stamina to exercise. Not that I'm hitting the running machines, although I do use one, just to walk for 5 or 10 minutes. Then the sit-down cycling machine and a short while on the running machine. Though my foot still hurts, this activity seems to make it feel better.
I did discover that when my drip was removed, that by the nurse not holding down the gauze strongly enough, that my blood pumped out of my vein, leaving a three by five inch section of blood sitting under my skin. Scary looking and it didn't bruise as such, though turned a brownish colour before going away.
This was the first infusion that was slightly different from the rest, only because the nurse insisted on putting the I.V into a vein in my left hand.
In general, they usually have to put a band around my arm to get the usual vein in the crook of my left arm, but with it being here it is a lot less awkward than having it in my hand, in terms of reading and transporting the drip when going to the bathroom. The nurse told me other nurses use the vein in the arm because it's 'easy' and if they kept using it it would collapse, a scary thought, Whereas the vein in my hand was probably my most visible. However, this is no longer the case, it seems to have gone into hiding. Overall, it wasn't a pleasant experience as my hand and fingers went numb during the infusion. Also, afterwards I felt awful, whereas every other time I've felt pretty good.
I continue to feel the benefits of being on Tysabri, my walking has improved physically and in terms of my stamina for it. However, I have developed Plantar Fasciitis in my right foot, not a side effect but this is very painful, it is when the tendons on the sole of the foot become inflamed and swollen, it feels like standing on a knife edge in my heel and this pain radiates through the sole of my foot. I was given medication to reduce the swelling, which helps somewhat but not entirely. I don't know, as yet, if it is MS related. However, the medication can affect the results of urine tests, meaning I had to come off it for two days before my infusion, to make sure the urine sample I gave before the infusion wasn't affected.
I am looking forward to my 16th and the benefits it will continue to provide. However, this time I will ask for the drip to be put in my arm!
Prior to receiving the infusion. I may have mentioned or at least should have, that the nurse goes through a questionnaire to evaluate my health for the month prior. As well as asking if you have been unwell, come into contact with infectious diseases.
I'm asked if I have noticed an improvement in my symptoms or any new ones. This time I had to say I had, as I'd experienced extreme numbness in my lower left arm. Which is both painful and annoying. Apart from that, things continue to improve. However, becoming so used to not relapsing can make me forgetful of my limitations and I have to be reminded, by my body, of my neuropathic pain and lack of ability in walking distance. But, otherwise, my quality of life is continually improving as I am generally, more 'able'.
I'm happy that Tysabri is working for me, and discovered this month that not everyone is as lucky. A girl who I got chatting to over the past few infusions told me that she had begun it in October but her neurologist had decided it wasn't working for her, as she was relapasing so often. She was to be started on something else which hadn't been used before, so she was a bit nervous about the side effects, but had no other option other than to begin it. I felt so sad for her, to be in that predicament.
And, it is a situation like this that makes me not even regard the numbness in my left arm as something to complain about!
Well, this began just as normal and the infusion process was just as normal, or so I thought in the beginning.
After it was finished, I went home and went to bed for a sleep, as I usually do. I think this is tiredness from the early start, not from the Tysabri. I slept for a couple of hours, got out of bed and stood up. As I went to begin walking, I just fell very hard to my left, hitting the ground like a brick. I fell so heavily I injured the whole of my left side and got up, feeling as though I had cracked my pelvis, shoulder, jaw and cheekbone. I had also cut my face and when I eventually was able to get up, had blood all over my cheek and a three inch cut on my cheek.
I was dazed, my partner got the fright of his life and I just didn't know what had happened. I had read that it is possible to have low blood pressure after an infusion but I was confused as to why it would happen after my thirteenth rather than any of the other twelve. I thought back to the infusion process and realised that the only thing that had been different was that the second time my blood pressure check was done, was by a nurse I didn't recognise and she put cuff on the arm my I.V was in. I momentarily thought that it was strange, as they don't normally do it on that arm but figured she was a nurse and knew what she was doing.
I was left in agony from the fall and the cut to my face and couldn't sleep that night. The next morning, I phoned the ward where I get my infusions and spoke to a male nurse. he told me he didn't know anything about blood pressure side effects of Tysabri and to go and see my GP. Luckily, I was able to get a cancellation appointment. I got a lot of strange looks in the doctor's surgery, didn't know why as I forgot about the cut on my face and realised I looked as though I'd been beaten up.
My doctor checked my temperature, pulse and blood pressure while sitting and standing. I was confident I didn't have PML, as I had tested negative for the JC virus. My doctor thought that blood pressure being low was a probable cause. As he checked me over, he noticed my jaw was clicking but could find no evidence of infection of any kind. When I saw my Physio the following day, she noticed that all of the joints on my left side clicked. And advised me to let my Neurologist know what had happened.
I couldn't get through to my Neurologist on the phone but left a message with her secretary. I don't see the MS nurse since beginning Tysabri, only my Neurologist, but I tried phoning her as my Physio thought the potential reaction should be recorded in my notes. I tried, it was impossible to get through though, so I e-mailed her, asking if my blood pressure being taken in the same arm as my I.V could have caused the fall. she replied that it would only cause pressure where the catheter was in my arm. Another nurse called me two weeks later, having been contacted by my Neurologist's Secretary to say I'd phoned. This nurse told me that my drip could have been pushed out. I then remembered it being more painful when one of the nurses I usually see took the drip out and it took her longer to stop the bleeding, in fact there's not usually very much blood at all.
So, I will put the experience down to being just that and fully intend to make sure nothing similar happens again. I have spent the weeks between this and my next infusion, in varying degrees of pain, but my face has healed with the help of Bio-Oil, so I have that to be thankful for. I'm still relapse free, though have numbness in my lower left arm, though don't know if this could have been caused by my thirteenth infusion.
Tomorrow is my fourteenth infusion and I'm confident it will only be a better experience!
I was quite excited/happy, in a strange way, about this infusion, with it marking my year on Tysabri.
My life is so different from what it was before. Do I still suffer neuropathic pain? Yes, Do I still suffer fatigue? Yes. Do I still have problems walking distance.Yes. But all are better than they were before and I do know these pre-existing symptoms aren't going to disappear but, strangely none of them feel as bad as they did before. I think this is because I am not continually relapsing and acquiring new symptoms on top of these and, more importantly, not developing greater disability.
I do feel like a different person. My brother told me I sound different, more alert than I have been for ten years so, I suppose that means fatigue has improved, Or, that I'm just not in constant relapse and am more able to re-gain some of my personality from prior to diagnosis. I feel better, have a more positive outlook and just feel as though I'm living my life again, rather than just being a distant observer.
I haven't received the results of my second JC virus test, but I haven't even thought about it until I read last month's diary. I'd rather it wasn't positive. But, I'll deal with that when and if it happens.
At present, life is good and , after what I've endured in these past 11 years, I never thought I'd say that again!
I haven't really paid attention, following this infusion, as to the physical changes, if any to my health. My grandmother was very ill and passed away before Christmas. And so, I spent the festive period awaiting her funeral. Bereavement has a way from distracting you from daily life.
I do continue to feel stronger, more physically able. However, I may have believed the increase in strength is more immediate than it actually is. The day after the infusion, I went to the post office to post Christmas cards and when I went into a shop afterwards, I felt as though I was going to collapse. I think it was more heat causing fatigue but, whatever the reason, it was a definite reminder that Tysabri prevents disability progression, rather than having any impact on pre-existing symptoms.
I saw my neurologist this month, a re-arranged appointment from one I had in January, accidentally cancelled by the hospital. It was really just a check-up but she also decided to test again for the JC virus. If the result was positive, would I stop treatment? Most likely not. While Tysabri has a risk of PML, it is very slight and I'm confident that I am monitored closely at every appointment by the nurses, taking my temperature and blood pressure as well as checking the urine sample that I take along with me. If something was wrong, I'm pretty sure it would be picked up immediately. My next infusion will be my twelfth, my one year anniversary and I can whole-heartedly say that I have felt so much better this year, more than I have in years. My quality of life has improved and I want to hold on to that.
The additional week I had to wait for this infusion was indeed a long wait. I felt terrible but knew it was down to the bug, that turned out to be the Norovirus. The stomach pain it caused was so severe, that my G.P sent me to A&E (that's the E.R if you're American/Canadian). The doctor at the hospital told me that the virus was affecting me worse due to my weakened immune system, which is what I thought but I had never had stomach pain like this, ever. Just when I thought that had cleared up, I caught another bug. I do know that Tysabri can make me more prone to infections. But, it did all eventually clear and I was ready for my next infusion.
This went the same as normal, a health questionnaire prior to being given the infusion - have I had any colds, flu, mouth or ear infections or been in contact with anyone with chickenpox etc, Thankfully, 'no' to all of the above. The additional week between infusion affected my memory and I told the nurse that I usually had the infusion in my right arm, not my left as she thought. I realised I was wrong after the I.V had been set up and I discovered how awkward it was with it being in my right arm, when I'm right handed. Reading my book was awkward, rolling the drip to the bathroom was awkward and everything, basically. My temperature and blood pressure are taken every half hour and having the blood pressure band on my left, weaker arm wasn't comfortable. But, lesson learned and I will now always remember it is my left arm.
I didn't feel as well after this infusion, as though I was stronger and my walking was better so I think the additional week in-between did make a difference. I have stocked up on vitamins to try and ensure I don't catch any more bugs over the winter, as a result. That said, how I felt in general was still better than before I began Tysabri. I have thought at times that I don't remember not having this treatment, until I think of the symptoms I experienced before and realise that I most definitely do as that was a terrible time for me.
I am now approaching my 11th infusion and look forward to celebrating my 1st year anniversary!
This was a straight forward appointment, now that it's just part of my life routine, I suppose!
The good feeling and life experience I had after my last infusion, has continued. My walking continues to improve, as does my stamina for anything requiring physical exertion. Most importantly, I can now stand for longer, without feeling uncomfortable, or having strain on my back. Something I took for granted before and having lost it for years, I'll no longer take it for granted! My fatigue also continues to improve, although, it could be because I am sleeping for longer at night. At present, I am averaging 10+ hours a night which is quite a dramatic change for me. I used to be a strict 8 hours per night!
I had to have another appointment with my neurologist, where I explained that my blood results were probably due to the fact I had been on a course of steroids for the relapse. I don't know why the nurse who dealt with me at the last infusion, didn't take note of that fact. She agreed, but took more blood, which I assume was okay as I have heard nothing further.
Everything has been going well, but I will say that the week before the next infusion I never feel quite as good. I was supposed to have my next infusion tomorrow, but, after having a bug this weekend, it had to be re-arranged to next week. Which isn't the greatest, but I feel awful at present and have to console myself with the fact that it's the way it has to be. It will feel like the longest week though!
I think this treatment has been the turning point. I feel like a different person.
I was a bir of a wreck immediately following this infusion, but that was purely due to the sleep deprivation caused by the steroids given to me for the relapse at the start of the month. I'd had no more than 6 hours sleep, over the 5 nights. So, I had to sleep A LOT to catch up. Once I did, I awoke to a new me.
I was thinking so much more clearly, the fatigue was slowly evaporating. I remembered that I still have my intelligence because I could think without fatigue pressing down on my every thought. My pjusical stamina dramatically increased. I could walk continually for ages, without needing a seat every 5 minutes. Only problem then, was that I did over do things and get absolutely shattered a few times. But, the point is, I could actually do and plan things and I'm starting to think I'm getting my old life back. The one that's been a distant memory for 11 years! I feel great and I don't know the last time I ever said that. Now I know why people who have been on it for ages, rave about it.
And then, last week, I was contacted by my neurologist's secretary to tell me she wanted to see me, due to my blood results, taken before my infusion. The call came out of the blue, early in the morning and I will admit I panicked! Then, I thought about it and the fact that I'd had a course of steroids might affect my blood. A quick internet search, told me that steroids affected the white blood cell count, which put my mind at rest, a bit. I discussed it with my G,P and he confirmed this. I saw my neurologist today and she was happy that it had been caused by the steroids but I had to give another blood sample.
So, still very happy to be on Tysabri and looking forward to my next infusion next week!
Well, everything went fine with the infusion, passed as quickly as ever with the help of my book and ipod! I felt fine the first few weeks and my energy levels had increased, when I wasn't averaging a 10 hour fatigue sleep every night, that is. Before the weekend, I wasn't feeling too great, physically, why? I couldn't quite put my finger on it, but it has been typical that I feel a bit worse, the week before the next infusion is due and the next one is on Tuesday next week.
But, this time, it was different. My feet suffered nerve damage, in the soles, which caused numbness since 2001. Recently they had had more of a burning sensation, that then turned to burning in recent months but in the past few weeks it has been severe pain, I can barely bare to stand sometimes as it feels as though my heels have been stabbed with machettes - agony.
Then this weekend, the numbness in the left side of my mouth, caused by damage to my trigeminal nerve, meaning I have felt as though I had an injection at the dentist in August which has never worn off. Well, this weekend, it spread across the front of my face and now only a quarter of my whole mouth has feeling, just the extreme right side. This is an entirely new symptom in that area, later, my lower back felt week and my legs collapsed underneath me. So, I'm sorry to say that I'm relapsing, when I was hoping to go the whole year without it happening again. But, it wasn't to be and I type this with the foul taste of methylprednisolone in my mouth, drinking lemon barley, eating mints and sour sweets to get rid of the taste! And, this will be me until Saturday.
I felt better when I thought that this is my first relapse this year and my last was August 2010, but my doctor informed me that my last steroids were given to me in November. But, I suppose 9 months is still better than the constant relapses of last year!
Living with this illness is just constantly having to look on the bright side. So while neuropathic pain affects only 10% of people with MS, I must be the neuropathic pain Queen, as only 10% of my body is without it! But, I live a life of distraction and it works most of the time as usual. Thinking positively, 2011 has seen my first relapse as opposed to the five or so last year, so the Tysabri must be doing something and I can only hang on in there and hope it gets better! And, I do have a holiday at the end of the mouth to look forward to...
This infusion went well, although the room was more crowded than normal. Rather than just me, it was me and three other women and their partners, due to a Glasgow holiday the week before. Didn't make a difference to the infusion experience, just made me paranoid about picking up an infection, as Tysabri weakens the immune system even more than MS already has for me.
I did forget to mention in my previous posts, that the nurses come round every half hour or so to check blood pressure and temperature. So, the close monitoring is reassuring, although they're checking for signs of side effects, rather than colds! This time ended up being even quicker than the last, as I fell asleep and for longer than last time. So I suppose having the peace of mind to do that means something or it was because I didn't sleep well the night before.
Truthfully, I haven't felt as well this month. I am thankful that there are no new symptoms but I haven't felt as though my pre-existing symptoms are being kept at bay. While I know the Tysabri isn't ever going to reverse pre-existing damage, it just has felt more like my life pre-Tysabri than the positivity I had from the other infusions. My lower back weakness returned and my Trigeminal Nerve, which took on the new effect of numbness rather than the pain of previous years, in August, has decided to revert to pain. Not pleasant and in addition to this, I have neuropathic pain in the soles of my feet, from previous nerve damage, which is even worse as it makes me not want to walk or even stand! So, Tysabri is by no means a cure and I knew that, but think I got carried away by the reduction in fatigue of previous treatments!
Anyway, still not relapsing is the overall positive and I have to focus on that. Until the 15th, when it's the 7th infusion!
My 5th treatment went well enough, apart from the nurse not being able to get a suitable vein in my arm until after three attempts, so I did leave the hospital with an arm much more sore than the other treatments.
The treatment in itself seemed quicker than the rest, or maybe it's just so routine now I just get distracted reading and forget what's happening, easily done when you don't feel the infusion going into the arm at all. Overall, I would say that although I can't say specifically what it's doing for me in terms of symptoms, on the whole I know I feel so much better than I did before starting the treatment and I can say now, I no longer feel as though I am constantly on the brink of relapse as I felt last year, when I struggle to think when I was last in remission.
This week, I saw my neurologist for the first time since starting Tysabri, really just to see how I was getting on and whether I had relapsed since starting it. I told her about the problem with the movement of my lower arm, which lasted three days and a day when I had very bad vertigo and felt as though I was car sick, which stopped when I took my car sickness tablets or she said it maybe went of it's own accord. She said she would regard them as minor flare-ups and was happy that I hadn't relapsed and that the treatment was working for me, I most definitely agreed. All in all, I said having the comparison to make with how bad I felt last year, when I'd had two relapses by June, I too was happy it was working for me.
Overall, although I am still using my walking stick to walk any lengthy distance, I feel so much more physically able than I have in such a long time. I have a much more positive outlook and know I am able to exercise more and physical effort isn't the chore it was before! She told me that my blood results were fine, from samples taken by the nurse, before my 4th infusion, so she was happy with that too. I was told that I would be tested again for the JC virus when I had been treated for two years, at which point I have to give my consent again, as the risk of PML is greater at this point.
At present, I feel so much better that I don't think I ever want to stop this treatment. However, I would say, I am the same as I have read many people are, in not feeling so good the week before the next infusion. The weakness in my lower back is apparent again and feels horrible, after getting used to living without it, so, actually maybe I am noticing what it's doing for my symptoms. Luckily, my July treatment is next week!
Well, what a miserable day for an infusion. The hospital room, gloriously warm and sunny during each of the other infusions, was miserable, as the rain pelted the windows and a howling wind battered the building. However, it's the positive affects of the infusion I should have been concentrating on, but there's not much else to think about sitting in a hospital room on my own. But, the weather could've been an indicator of my least favourite treatment yet.
Everything was fine with the technicality of the infusion and it was probably the quickest hospital visit yet. However, that night I got a terrible headache which lasted days. So terrible, my migraine medication had no affect and I couldn't bare to hold a conversation with anyone. But, then I had the quandary of whether it was the infusion or caused by my injured shoulder from the accident. I think it was the infusion. As a long-term migraine sufferer, I can honestly say this is the worst headache I've experienced.
Overall though, I think Tysabri is continually having a positive affect on my life. I'm no longer waiting on the relapses beginning and am more positive in my outlook on life as a result of this. I feel more physically stable than I have in recent years. Although, I did have one strange symptom, I had spent a weekend completing an application for a part-time course and on the Saturday night found I could not raise my lower left arm to touch my face. Very weird experience. As MS has never affected the mobility of my arms, I didn't consider it a relapse, although this lasted for 3 days. It is the arm I get the infusion in and, in discussing this with my GP, he said the vein it went into could've been bruised in the process of the IV being put in. But, then it seems strange that it didn't happen until a week after the infusion. Maybe it was the typing, it could also be coming from my shoulder but I still consider myself to be relapse free at the moment.
My next is on the 20th of June, hoping to be side effect free afterwards!
Aside from a panic attack when I arrived at the hospital (I'm blaming my time in hospital after the accident for this!) it felt very much like a routine visit. That's how quickly I've adapted to this change in my life.
Despite the ongoing whiplash issue and the physio appointments required because of this, I do feel different. In a very good way. the weak muscles in my lower back are no longer giving out with fatigue if I've stood for too long and I generally feel more stable, in that I feel less infirm. This is a major benefit as prior to beginning this treatment I always felt as though I would collapse when I did anything remotely requiring exertion.
The fatigue situation is continually improving. I am actually able to get up earlier in the morning without subsequent brain fog. As a knock on effect, my concentration levels have improved and I'm actually able to read a book. Not something everyone does but I used to be a book-worm until fatigue got so bad, the brain fog began and I discovered I just didn't have the required concentration level. Because of this, I feel as though I have reclaimed part of my old identity.
I feel great, much better than I have in recent years. Overall, I feel I am now able to look ahead, plan for the future and I know deciding to begin Tysabri was one of the best decisions I've ever made.
It felt somewhat easier going for this infusion as I knew what to expect. I was also looking forward to it, which sounds strange, but my MS nurse had told me not to exect to feel different straight away, that it would take around 6 weeks before I felt significantly different. So, I was looking forward to the 11th of April specifically. Although, my partner said he noticed a dramatic difference in me and my actions immediately following the infusion and that I was just more able in general.
However, I was involved in a rather nasty car accident on the 7th of April, which spoiled the 'event' of the 11th. My partner and I were heading off for a camping trip and five minutes from our destination, a car hit us from behind at more than 60mph on an A road. It was all rather confusing, as I couldn't work out why we were still moving after being hit and it turns out that the impact was so great we were pushed forwards 8 metres. I was taken away to hospital in an ambulance and had an afternoon of excruciating pain that could only be eased with morphine. I spent the following weeks taking various drugs fort the severe whiplash.
As a result, I don't think I have a remotely accurate experience of this infusion, other than that my fatigue feels significantly lessened.
And then, it was time for my third infusion...
I've never been in hospital and don't like them very much but got over this, I think. After testing for urine infection I got my first infusion. Most painful part of this was having the drip inserted into my arm (this probably is down to the nurse's technique) and then I didn't feel the infusion going into my system at all. The only sensation I felt is quite dizzy once it had stopped and I had to lie down.
I realised afterwards that I hadn't thought about side effects. before realising that this is because I had been tested for the JC Virus which causes PML and the result had come back negative. The only good hospital news I've had in the past ten years.
The nurses checked on me throughout the infusion time, taking my blood pressure several times. I think I felt reassured by this too and so never had any cause to think negatively about potential side effects. I was just relieved to finally be starting a treatment which I know will help me tremendously.
My MS nurse had come to see me and I'd seen her last week for a routine appointment. I've been told that it'll be around 6 weeks before I notice the Tysabri working. So, I don't feel remarkably different but my fatigue which has been at it's worst since a relapse in August has improved. Also, the arm the infusion went into has been numb and painful for as long as I can remember. The hand is still numb but at least it's a start!