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

    Neil’s Tysabri Diary

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     Neil

     
    Age: 31 Years

    First MS Symptoms: January 2009

    Diagnosed: January 2011

    Previous Medications: None

    Previous Symptoms included: Dizzyness/Vertigo, Numbness in my hands and feet, Blurry vision/Double Vision, Lack of balance, Weak/heavy legs, Headaches, L’Hermittes Sign.

    About Me

    Hi, my name is Neil, I am 31 years old and I have recently been diagnosed with aggressive RRMS.

    Since diagnosis, I have had 4 relapses in 7 months and was only prescribed with steroids to help speed up the recovery process. The first course of steroids were taken via intravenous drip and I was given Methylprednisolone over 3 days, the other 3 times, I was prescribed Dexamethasone tablets to be taken orally over 15 days each time.

    Unfortunately, I do not seem to take to well to the steroids and suffer from nearly all the possible side effects listed in the leaflet including hives, tightness of chest, vertigo, insomnia, etc.

    My MS nurse has told me that she does not want me to take steroids again from this point onwards.

    My neurologist told me he was surprised I was still walking and that self-inject disease modifying treatments (Copaxone, Avonex, Rebif and Betaseron) are just not strong enough to help my condition and has advised to start Tysabri (natalizumab). I was told that if I do not start the Tysabri soon then it would be unlikely that I would be walking within 6 months’ time.

    Infusion #17 – 2nd January 2013

    It turns out that this infusion was my 17th infusion since starting the treatment, it’s easy to forget how many you have had after a while as it just seems like another routine that fits into your life.

    The infusion went well and the same as previous infusions, the doctor asks his questions, once happy gives the nod and the treatment goes underway.

    I have been researching the possibility of coming off the treatment for a while as I am JC positive and do not know if I should continue this treatment after the two year period and I stumbled across a link for an article that said that there is a possibility of a rebound effect once stopping the treatment. Also in the article it stated that the relapse “rebound” could be up to three times as aggressive as it was before starting the treatment. There are a number of similar articles on the internet but as you can’t believe everything you read on there, I will have to take them with a pinch of salt for now.

    I am due for an MRI in July with a follow up with the neurologist shortly after so I will be asking him if any of his patients that have stopped the treatment have ever suffered a “rebound” effect after coming off the drug.

    I have to admit, my brain has been doing overtime thinking about the “what ifs”. This has become apparent more recently and I am finding it hard to settle at night times, my brain just won't stop thinking about things means which then leaves me more tired in the mornings.

    I am however still working full time and carrying on as if I did not have this disease. It’s going to be a hard decision to make.

    Update 2nd January 2013

    Sorry this diary has not been updated for a while, I have been busy with Christmas shopping and wedding arrangements.

    I have gotten to the point now where I can't remember how many infusions I have had, I think to date I have now had 18 infusions with another one to come in the next week.

    I have been getting on fine without any complications and have been living my life as normal as everyone else around me.

    This month I got married and with only 5 hours sleep in the space of 48 hours and a lot of alcohol in my system the only problem I am having this month is a hangover.

    I will be due a check up with the neurologist soon so will be interesting to see what is said.

    I did receive a letter in the post that tells me that the risk of PML with JC positive results now has a higher risk, 1 in 216 down from 1 in 250. Something I will have to take on board when deciding whether or not to continue the treatment.

    I will try and update the diary on a monthly basis again now that the busy period is over.

    Regards
    Neil

    Infusions #13 & #14 plus the results are in.

    I did not manage to find the time to write about the 13th infusion after it had happened, it went ok though and I also had my yearly MRI scan which lasted for about an hour and a half even though the appointment letter stated 30-40 minutes. As I have only ever previously had my MRI scans done in a private hospital, this MRI scan was a little different, there was no music to drown out the noise of the machine (just ear plugs) and there was no mirror to see the staff in the office, this made the machine feel a little bit more claustrophobic but it was bearable. Upon leaving the machine, I found it hard to maintain balance in my walking, this is quite common though and is believed to be caused by the strong magnets used during an MRI pushing on the fluid circulating in the inner ear, impacting balance and often leading to a feeling of vertigo or free-falling. Thankfully after about 20 minutes the balance returned back to normal.

    I have now just had my 14th infusion.

    I have had a bad cold over the last few weeks which has given me countless headaches and migraines, bad throat, tickly cough and a bad chest. I was fearful that the hospital would not give the green light to have the treatment this month as one of the questions they ask every time is “Have you had any colds, coughs, etc.”. I told the doctor that I had indeed had a bad cold but after listening to my chest, he was happy to let the treatment proceed.

    The treatment went on ok as usual and within a couple of hours I was all good to go home.

    The next day, I received a letter through the post. In a brown envelope sealed with selotape, I knew it was from the hospital and presumed it was an appointment letter to discuss the MRI scan that I had last month, however upon opening the letter, it turned out to be a letter to my Doctor with the results of the MRI scan.

    The following extract is taken from the letter:

    I have now received Neil’s recent MRI scan of the brain and spine with contrast results.

    There has been a significant improvement of the white matter lesions on the flair images when compared to examination from January 2011. There was no abnormality in spinal cord and no contrast enhancement in the brain or spinal cord to suggest active disease.

    I think this is very encouraging.

    So its good news, the disease has been stopped from progressing which is reflected in my ability to carry out my daily activities without problems.

    This will of course make it more difficult for me in deciding to change treatments at the two year point as I know that this treatment is working well and I have not had a relapse for well over a year now.

    I guess I will have some hard decisions to make in the future, but for now I will continue as I have been doing.

    There are plenty of things to keep my mind off the subject for now. I am getting married in two months’ time so there is a lot to keep me busy.

    That's it for me this month, sorry if it's a bit long winded.

    12 Month Check Up

    It has been nearly 12 months since I have been on Tysabri and I had an appointment to see the neurologist.

    The appointment was on a Saturday and the hospital was pretty much empty and there was no waiting time to see him which was great.

    The neurologist carried out all the standard tests as part of the EDSS (Expanded Disability Status Scale) and my score was 0 (no disability).

    He said he was very happy with this score and has never seen a patient on Tysabri get back down to 0 before so I am very happy with that.

    He told me that I should continue the treatment for another year and then possibly come off the treatment due to being JC positive as the risk would go up at that point. He seems to be pretty confident that there will be a number of other treatment options available at that point.

    The meeting was finished off by being booked in for an MRI scan to see exactly what has been happening, my last scan showed at least 10 active lesions and although these are not likely to go away as they are scarred, they may have reduced in size and hopefully no more lesions have formed.

    Overall, this was a good appointment, I didn’t feel rushed like previous appointment and it was the neurologist that started the topic of other treatment plans in the future (something that he wasn’t willing to talk about previously).

    The treatment has obviously been working well for me but with PML thoughts in my mind, I know that when the two years is up, I will pursue different treatment avenues.

    Until such time, keep checking back for the progress.

    Infusion #12

    The time has come for the 12th infusion, I now have my infusion on a different day because of past events.

    The only thing needed before having the infusion was one antihistamine then everything went underway. I am glad that I did not need to have another course of steroids as they really seem to disagree with me.

    The infusion was given at the normal rate and went fine, I have had no reactions for a while now and I think it might have all been down to hay fever, maybe the Tysabri was bringing it out a bit more but I have been taking a normal off the shelf antihistamine most days and have been reaction free.

    I sometimes get the odd patch of small red lumps appear on my arms, especially if I have been carrying something heavy like a box, but as long as I don’t touch or scratch them, they go away on their own pretty quickly.

    I am due to see the neurologist this weekend, this will be for my yearly check-up. I do not know what will be talked about, I believe that as I have been on the treatment for nearly a year now, that an MRI scan will be scheduled in to see exactly what the treatment has done for me and if there any changes with the lesions already present.

    I can’t believe I have been having this treatment for nearly one year already, the time has gone by very fast.

    Infusion Number 11

    Last month had been pretty good for me, I had no outbreaks or reactions, however I have been taking a prescribed antihistamine every day since my last infusion.

    This infusion was given to me at the normal rate (1 Hour Tysabri, 1 Hour Flush) which was great as it was a really long day last month when they stretched it out.

    I was given a one off dose of 30mg Steroids and another antihistamine and then carried on as normal with the treatment. I was advised to carry on taking the prescribed antihistamines each day, but only for another two weeks. If all goes well this month, then next month I will be having the treatment as I did before having the reactions.

    The infusion didn’t seem to take all that long this time round, there were different people on the ward as it was a different time and day to what I used to have the infusion and chatting away to the people there made this infusion go a lot quicker.

    So far so good, still no more reactions as of yet so hopefully the treatment will carry on as normal as of next month.

    We are getting very close to the 1 year point so an MRI will be scheduled in soon and we can see if the drug has improved my condition or just stabilised it.

    Watch this space.

    Infusion Number 10

    It has been 6 weeks since my last infusion as the hospital wanted me to have some skin tests done before having the next infusion. I arrived at the hospital to see the immunologist but because I had taken an antihistamine the day before, they said that the skin tests would be of no use as the antihistamines would still be in my system and would likely fight off any reactions.

    In attendance was the immunologist, the registrar, MS nurse and infusion nurse.

    A decision was made to take some prednisolone steroids (orally), some antihistamine tablets and the infusion spread out over a longer period of time.

    I was given 5mg of prednisolone in liquid form which I had to squirt down my throat through a syringe, this was given to see if there were any reactions to the steroids as I have previously had reactions after taking steroids in the past albeit they were from a different family of steroids.

    There were no reactions to the steroids I had been given at this point so they gave me 5 tablets of prednisolone (5mg) and an antihistamine tablet. They then decided that the infusion should be taken but over a longer period of time, so they started off with 1/100th of the drug to be taken over 1 hour, this was then increased to 1/10th of the drug infused over another hour and then the remainder of the drug over another hour. This was then followed by the flush.

    Observations were taken every 15 minutes throughout which included pulse rate and blood pressure.

    The infusion went ok with no reactions to date, the immunologist says that I have allergies but not to the Tysabri. The immunologist was also an asthma specialist and said that I do not have my asthma under control which could also be one of the contributing factors to the reactions I had last month. She has prescribed me with a Flixatide inhaler with a spacer and has told me to take this 2 times in the morning and two times at night to help bring the asthma under control. I also have to take the steroids for another two days and an antihistamine tablet every day until the next infusion date.

    Today is the day after the infusion and I am feeling some side effects from the steroids already, mainly an upset stomach but I am sure this will pass soon enough and I am happy that I was able to have the infusion this month. I have suffered no reactions so far from having this infusion.

    Next month they will repeat the same as above with the steroids and antihistamines but will put me back onto the normal infusion rate (1 hour for Tysabri and 1 hour flush). If this goes ok then the next infusion after that they will try without the steroids and if that goes ok they will then try without the antihistamines.

    Niel's Drugs


    Hopefully this month will be a good reaction free month and we can continue the treatment as it was before I suffered the reaction.
    I would like to thank the staff at the hospital for all their help this month and helping me overcome the difficulties I have been having over the last month.

    I nearly forgot to mention, as I thought I was only going to be having some skin tests this month, I didn’t use any Emla cream which meant the cannula had to go in without the magical numbing agent and I must admit, I didn’t feel a thing.

    Infusion #9 Update

    Today I went to see the neurologist and he has come up with an action plan, the first part of the plan is to wait for the test results to come back from my bloods to see if they have neutralising antibodies, if they do then it is unlikely that I will be carrying on with the Tysabri.

    If the results come back negative, then they want to give me a steroid infusion with antihistamines and the normal Tysabri infusion and keep me in the hospital all day to monitor me and make sure the reaction does not come back.

    My next infusion has been cancelled for now until the results come back which means my next infusion (if allowed) will be pushed back a few weeks.

    In the meantime, the hospital are trying to book me in to see a dermatologist so we can try and work out if maybe something else has caused this reaction.

    Whilst I was there, the neurologist carried out the standard Expanded Disability Status Scale tests and proceeded to tell me that last time I had this test, my score was 7, this time my score was 0 which basically equates to no disability.

    It would be a shame if I have to stop this treatment as it is obviously working for me, hopefully the reaction could be due to something else however I have not changed anything in my lifestyle. I am hoping the dermatologist can shed some light whilst I wait for the test results of the bloods to come back.

    More updates will follow as and when I know more.

    Infusion #9

    This month’s infusion entry is so far not looking to be a good one.

    To start with, it was just a normal routine, turn up, see the doctor, start the treatment and go home. this all went as smooth as normal and this was the fastest I had been in and out.

    About halfway through, I noticed that there was a small rash around the injection site, this didn’t really bother me at the time as I sometimes get red skin from the tegaderm patches they use to hold the cannula in place. I should have said something at the time but foolishly kept it to myself. The infusion went along as normal and once finished, I was on my way home.

    When I got home, I started breaking out in hives in various places and I started having trouble breathing. I took a fexofenadine hydrochloride 180mg antihistamine tablet which I had left over from when I got hives from taking the dexamethasone oral steroids and the hives calmed down and my breathing went back to normal.

    Neil's Hives

    The next day I went to work as normal and had no problems, but when I got back home the hives and breathing difficulties started up again (presumably because the antihistamine tablet had worn off by now). I took another antihistamine tablet and once again the hives started to calm and my breathing difficulties eased but by now my chest was feeling very tight and sore (as if I had taken a hit to the ribs).

    I rang the MS nurse the following morning to tell them what was happening and they were adamant that it couldn’t be the Tysabri causing it as it was my 9th infusion and reactions would normally happen on the 1st or 2nd infusion. They recommended that I see my local GP to make sure I didn’t have a chest infection. I managed to see my local GP the same day and they said that my chest was clear and it was obvious that I was having an allergic reaction, probably to my treatment. I told the doctor about the fexofenadine tablets I had been taking to try and calm it down and she said that is what she was going to prescribe but as I already had a fair few left over from before, she didn’t need to prescribe any more. She told me to take one a day for the next 7 days.

    As soon as I got back home from the GP, I tried to ring the MS nurse but was only welcomed by an answering machine, I left a message for them to call me back but heard nothing back on that day. On the next morning, I left another message with the MS nurses to call me back but ended up ringing them at hourly intervals until about 12pm when one of the nurses finally answered. They were still saying that it was strange for a reaction this far down the line but booked an appointment for me to go in and see them, originally the appointment was set for 14 days’ time but I expressed that I was not happy with this and they rang me back with an earlier appointment (5 days’ time).

    By the time the hospital appointment came around, I was still breaking out in hives even though I have been taking the antihistamines and on some days I have had to have two as the hives were getting so bad.

    At the hospital, they asked about the symptoms and wrote notes to pass on to the neurologist. They also took some bloods so that they can send them off to London to test for antibodies. The results from this test could take up to 4 weeks to come back so I asked what would happen with my next infusion. The nurse said that they could add a course of antihistamines before taking the infusion but I told her that I had been taking antihistamines for a week after the infusion and was still breaking out in hives and having difficulties breathing.

    She then said that they will investigate before my next infusion and not to worry, she said they will postpone the treatment if they have to until they get the answers they need in order to carry on. It may be that I need to have the infusion over a longer period of time.
    It’s now been a week and two days and I am still breaking out in hives and still having trouble breathing, I am still taking the antihistamines to calm it down. I have noticed that the breathing difficulties only appear when the hives are breaking out, my chest hurts all of the time, like I have just been in a car crash but I am still managing to carry on working. I am now also experiencing headaches which are very dull and at the front of my head and I am feeling very sleepy and have had to have some naps when I get home, I have not done this for a long time.

    This could be a deal breaker for me and this treatment, if I am producing antibodies then they will stop the treatment as it is no longer effective and if I am not then they will have to work out the cause of this reaction.

    Last month was such a good month and I had managed to do things that I have never done before but this month is such a massive turn around.

    Whilst at the hospital, we did discuss the possibility of moving treatments, perhaps to the oral tablet (Gilenya) but at the moment the hospital is not geared up to administer this as they need to finish some administrative paperwork.

    I would be happy to stay on the Tysabri as long as we can stop this reaction and we can be sure it won’t happen again next time. I have an appointment with the neurologist tomorrow so will no doubt know a little more after that consultation.

    I will update the entry when I know more.

    Tysabri Infusion No. 8

    I am writing this update a little late this month because as soon as I had finished at the hospital for my 8th infusion, I went straight to Manchester airport for a two week holiday in Florida -America.

    The last time I went on holiday to America was in February 2011, just after my diagnosis and I must admit, the whole two weeks were a massive strain last time with killer fatigue and still suffering from side effects from the dexamethasone steroids I had been given to help speed up recovery from a relapse.

    This time was a whole new ball game, since starting the Tysabri, I have not had any relapses and have generally been in good shape.

    This holiday was perfect in every way and not one sign of any struggle which I experienced last year. I drove over 1000 miles over there and walked massive amounts each day in temperatures of 30+. There was no fatigue this time round although I was tired at the end of each day which would be expected due to the amount we were walking. I weighed myself when we got back to the UK and I had lost a stone and a half in just two weeks, presumably from all the walking although I have put a little back on since we got back.

    We managed to do all the things we couldn’t manage last year and even went on a short cruise halfway through the holiday around the Bahamas.

    Neil's Cruise Ship

    To say this was the best holiday I have ever had is an understatement and I have to thank the Tysabri for making it possible.

    The infusion was painless as usual just a little long winded (they feel like they take longer each time) but this could be because of the excitement of going away as soon as I left there.

    I am now due for my 9th infusion today and we are getting very close to the 1st year mark, which will result in having an MRI scan to see what the Tysabri has managed to achieve and if any of my lesions have reduced.

    Infusion Number 7

    The infusion was slow to get underway as there was no doctor on the ward until about an hour after I had arrived. I am starting to get used to having to wait quite a while until the infusions get started these days, they operate on a first come first served basis. Luckily I was the first person to arrive which meant as soon as the doctor arrived on the ward, I was seen to straight away and the treatment could start.

    I think I must have been well behaved on previous infusions as they put me in a better chair for this infusion, it was a fully electric leather reclining chair (a lazyboy).

    Lazy Boy Chair

    This was a very comfortable chair and within minutes I had reclined it to put my feet up, much better than the static chairs we normally get lumbered with.

    Before the doctor arrived on the ward, the nurse put the cannula in ready so as not to prolong the hanging around. The nurse was not my normal nurse and I had asked to put the needle into a different place to what I normally have so that I could bend my arm (normally have it in the elbow join which means I can’t bend it for two hours). Armed with the Emla cream, I thought it would be as painless as normal, however it wasn’t painless and actually hurt quite a bit. I am convinced this was because the cannula was larger than what I normally have, this one way yelly and I normally have red. Below is a picture of the bruising that was caused from the cannula after being taken out, this has never happened before so I will be having the injection in the normal place next time as I don’t want to go on holiday covered in bruises.

    Neil's Arm


    The infusion seemed to go pretty quick, I think was because I had been playing a few games on my iPhone (cannot normally do this if I have the needle in the previous location as I can’t bend my arm making it difficult to hold the phone).

    So apart from the cannula and bruising this time, the infusion went well and I have still not seen any signs of a relapse which is great.

    I have also seen the neurologist for a 6 month review after starting Tysabri, I arrived 10 minutes early for the appointment and ended up waiting an hour and a half before he called me in. Once in his office, he seemed to be watching the clock rather than listening to what I had to say, I mentioned the fatigue and he said I should rest more, the MS nurse said I should not be resting in the day, a little bit conflicting and leaving me none of the wiser. Apparently I am going to be enrolled on a fatigue management course, maybe they will have some answers that are better than those already given.

    I also asked the neurologist about what would happen if I was to decide to stop this treatment in hope of trying another treatment that doesn’t have the side effects such as PML, he told me that I wouldn’t meet the criteria to go onto another treatment ??? He tried to re-assure me by saying the risk is only 1 in 250 for those who are positive for the JC virus. Overall, this visit was a complete waste of my time, none of my questions were answered and all I got from the appointment was negativity and a lighter wallet from funding the horrendously priced car park.

    I will continue as I have been for now, I am not looking at coming off Tysabri until I get closer to the two year mark anyway, just want to keep my options open.

    Infusion 6 – 17th January 2012

    This was my first infusion of 2012, the whole procedure of leaving work and getting to the hospital is now becoming a fairly easy routine. It is taking me about 15 minutes to get back home from work and then I carry out the tests that the hospital requires to make sure I do not have MRSA or a water infection which could stop the treatment from taking place.

    The MRSA test involves swabbing the inside of our mouth and nostril with the swabs provided.

    The water infection test involves passing water into the tube container provided and then the hospital dip a paper strip into to check for infections. This test can tell the nurses/doctor quite a bit of information, not just if you have an infection.

    Before the doctor had come round to ask me the questions (they do this each time before starting the treatment), I had already had the cannula inserted ready so that the waiting time was no longer than it needed to be. The nurses tend to do this straight away for me as they know I have used the EMLA cream to numb the area and I have always cleaned the cream off prior to getting onto the ward. This time they inserted a yellow cannula which is one of the smallest they do. So far I have had red ones, blue ones and now yellow. Another one of the nurses actually fully connected the machine up and started the process which had to be stopped immediately upon the doctors request as he had not visited me yet.

    The doctor took an age to get round to me this time, he spent a good half an hour reading the patient notes before visiting to ask a million questions. The questions he asked were typical of a doctor who had never seen me before, starting at the beginning and asking questions like: When were you diagnosed? What were your symptoms? How did you treat the first relapses?  Are you ok now? Have you been ill over the last month? etc. etc.

    After asking all his questions, he gave the nod for the nurse to continue the treatment and within a couple of button presses on the drip machine I was under way again.

    Whilst asking the questions, anyone who is on the ward will hear what is being said, fortunately no-one had any embarrassing answers to some of the more personal questions he asked.

    I did overhear the questions being asked to one of the girls undergoing Tysabri and it turns out she has just got to the 2 year period of being on the treatment and also has tested positive for the JC virus. She will be continuing the treatment for now and had to sign more consent forms to continue (This will be because the risk of PML is a lot greater after the 2 year period, especially when testing positive for the JC virus). I was going to ask her some questions but with curtains in way and other patients coming in and out of the ward every two seconds made it awkward to do so, plus I was feeling quite sleepy, I think that was because it was so warm inside the ward compared to the sub-zero temperatures outside. If I get the chance, I will talk to her next time.

    The infusion itself was the same as each one before, the process normally feels like it is taking ages but armed with hundreds of different games on my phone, the time seemed to pass a lot quicker than previous visits.

    Towards the end of the treatment, the nurse came over and said he thought I would have finished by now, but there was still about 15 minutes of the flush left. He then said that the amount of flush I had already had would be enough and proceeded to take the cannula out of my arm. (There was about 10-15 minutes left in the bag).

    One thing I did notice on this infusion was that my arm really started to ache after about an hour, this hasn’t happened before now. It is difficult to tell if was because the cannula was a different size to previous visits, the fact I cant bend my arm due to where I have been asking them to insert the needle or if the drug has been leaking slightly into the muscle. After about an hour after leaving the hospital it was back to normal.

    After the treatment, I drove us to the pub to get something nice to eat before going home for a little rest. Sitting around the hospital for hours makes you feel quite tired although I didn’t fall asleep.

    I have started using the infusions as a countdown to my next holiday in March, I now have just 2 infusions until we leave the country for Florida and the Bahamas.

    Next month I have an appointment with the neurologist, I think this will be just a 6 month check up.

    Neil

    Infusion Number 5 – 20th December 2011

    We managed to find the ward first time this time round, after forgetting where it was once, I doubt we will forget again.

    There was a new doctor on the ward today, it took him a good half hour to read my notes before he came over to give me the all clear. I told him that I had just gotten over a cold but still had a bit of a cough and he wanted to call his supervisors to see if I could still have the infusion or not because of the cough, I think he was just being over precautious as he was new to the ward, 2 minutes later I was all set for the infusion to take place.

    The cold that I had did bring back some of my MS symptoms this month, including blurry and double vision which was horrible to experience again, luckily these symptoms did not hang around for longer than 24 hours but they were bad enough to put me out of work for the day whilst they were blurry. This did make me think about the treatment I am on and what I would have been like if I hadn’t started the treatment when I did. The symptoms came back whilst I had the cold as my brain is scarred from previous relapses and the cold has lowered my immune system which in turn can trigger the previous symptoms.

    About 5 minutes into the infusion, the MS nurse came onto the ward to have a little chat with me about the treatment, we went off to a private consulting room just off the ward. I asked her about any other treatments I could take if I ultimately decided to come off Tysabri. The answer was to try a first line treatment (Copaxone, Rebif, Avonex, Betaferon) as there are no other licensed drugs available at this time. She seems to think that Fingolimod (Gilenya) will eventually get approved and that there are other drugs that are in 3rd stage trials that may be available soon and if and when they do, I could perhaps go onto one of those instead. I told the nurse that if a new drug became available that had no risk of PML, then I would really want to try and move over to that drug. She could see my point of view and kept telling me that I could stop Tysabri at any time if I felt it necessary. She also told me that I may or may not be able to start a new drug as I have been taking Tysabri, she seems to think that I may not get approval for a new drug as the one I am taking is working, on the other hand she said that because I have tested positive in the JC Virus test, they may allow me try a different drug. I suppose at the end of the day it will all boil down to the cost differences in the treatments.

    As there is no other drug available to the NHS at this time, I came up with a plan of action and ran it by the nurse and she said that my plan was a good idea, basically as the risk of contracting PML is very low in the first two years, I will stay on the Tysabri for at least 1 year, I will have an MRI scan at the 1 year period and I can see just how well the Tysabri has worked over that year from looking at the scan results. If I can see positive results and there is still no other treatment options available, I will stay on the Tysabri for another year. If after the 2nd year there is another treatment option available, I may switch over. If there is still no other treatment option available after the 2nd year, I will review my situation again at that time and decide whether or not to carry on.

    After about 20 minutes of chatting to the MS nurse, I went back to the daycase ward and sat myself down whilst the infusion finished.

    The infusion seemed to take ages for some reason although in reality it was taking the same time as normal.

    As this was my Christmas infusion, we took a box of chocolates in for the nurses on the ward, the nurses had gotten so many chocolates and biscuits in that they each managed to take a couple of boxes home with them. This was nice to see as every other patient who had been on that ward in the last week or so had obviously given them a present to say thanks. They all deserve it to be honest, I have never had a bad experience on this ward with the staff and they all bend over backwards to help you if you have any queries or just want to have a quick chat to help pass the time away.

    After what felt like an eternity, the infusion was finally over and done with, once again the whole infusion was painless, I even shaved the hairs off my arm where the needle is inserted before we went to the hospital this time to save pulling them out when they removed the cannula.

    The drug is obviously working for me as I am still carrying out my day to day normal activities as if I did not have MS at all, and I have still not relapsed (even though I did get symptoms because of the cold). I do not have massive energy rushes after taking the drug and I do not seem to feel that tired afterwards. I have noticed that a couple of days before my next infusion I seem to get tired quicker at the end of the day but I put that down to never really resting during the day, I am always on the move.

    I would like to wish everyone a very Merry Christmas and a Happy New Year, especially the nurses at the Queen Elizabeth Hospital on the Daycase Ward who have being doing my infusions.

    Infusion #4 – 22nd November 2011

    Once again, time has gone really fast and it’s time for my 4th infusion.

    I was a little bit late to get to the ward as we forgot the paperwork and the new hospital is huge compared to the old one and we were trying to find the ward from memory. The lifts in the hospital seem to take an age to arrive (even though there are 4 lifts) so we decided to try and brave the stairs, we only managed 3 floors before we gave up and waited for the lift on level 3. The ward is on level 6.

    The hospital have invested in some new chairs for the infusion patients and they are a lot more comfortable than what I had to sit on last time, this made the infusion a lot easier to have and was a lot more relaxed being that little bit more comfortable.

    I expressed to the doctor that does the pre-checks before each infusion that I had been having headaches on nearly a daily basis over the last month, but she said if they weren’t bad enough to make me have to lie down then just to carry on taking painkillers. I told her that I had been taking Panadol and she recommended trying some ibuprofen or codine if the headaches do not go away.

    Once again, the needle was painless due to the magical wonder cream that I have been using (Emla), those who don’t like needles should really try this.

    The infusions seem to take longer each time I have one, even though they aren’t. It felt like I was in the hospital all day rather than just a few hours, it is definitely recommended to take a book or something to do to pass the time away, the internet signal in the hospital is near on non-existent so that throws facebooking out the window.

    The nurse that has been dealing with me (Peter) is a really nice nurse, he listened to my concerns I have regarding the daily headaches I have been having and gave his advice, he even arranged for me to see a different MS nurse and then bought over his big book of medication for me to read about the treatment I am having.

    A short while into the infusion, the nurse asked me to get up and look at something on his computer screen, this is the first time I have got up whilst having an infusion and it felt pretty strange but it was nice to move around a bit and helped cure the boredom of the two hour countdown for a couple of minutes.

    Since having the infusion, I have not yet had any headaches like last month, I do not know if the headaches were coming along because my brain/body was just getting used to having the treatment or not, but hopefully they have gone now and will stay gone….only time will tell.

    The worst part about the infusion is when they took the needle out, I don’t consider myself to have hairy arms but when they took the tape off to remove the needle it hurt, think I might shave the hairs off my arm for my next infusion. This wasn’t long lasting pain, just more of a “oo, you bugger”. I might brave it next time and have the needle in my hand, all previous infusions I have had half way up my arm (my veins stick out there so easy to find).

    It is really hard to say what the treatment is doing for me at the moment but I have not relapsed since being on the treatment yet which is a massive bonus.

    My next infusion is scheduled for 20th December.

    3rd Infusion – 25th October 2011

    Once again, the last four weeks have flown by and it’s time for my 3rd infusion.

    This time the infusion was administered in the New Queen Elizabeth Hospital, I also had a check-up appointment with the MS nurse before the infusion.

    The new hospital looks and feels a lot like an airport, the building is extremely large and on the whole, very clean.

    The MS nurse was one I had not seen before, she told me that I have tested positive for the JC virus which now leaves me open to the risk of Progressive multifocal leukoencephalopathy (PML). Even though the risk is very small, I know that this information will always be on my mind and I know I will ultimately review whether or not to carry on the treatment as time progresses.

    For now, I will stay on the treatment as the risk is extremely small for the first two years. The MS nurse told me that only one person in the UK has been diagnosed as having contracted PML so far. I asked what would happen if I decided to stop the treatment and she said they would put me on a first line treatment. The only reason I was not put on a first line treatment to start with is because the neurologist said that my MS was too aggressive. This information was gained from looking at previous MRI scans.

    After seeing the MS nurse, I had a bite to eat from the hospital café and then carried on to have my infusion.
     
    Once I had found the day case ward, it wasn’t very long at all until the doctor had seen me and given me the all clear for the infusion.

    Once again, I had already applied EMLA cream to the vein the Tysabri was going to be administered through and once again, there was no pain at all when inserting the cannula.

    The ward is a lot smaller than the Old Hospital and there is no option anymore to lie down whilst having the infusion. The chairs in the ward are not the most comfortable and I ended up standing up every now and then.

    The other problem with the ward being so small is there are more people packed in around you and whilst I was there, there were a couple of rather aggressive patients sitting very close to me having infusions (not for MS). This made the beginning part of the infusion quite uncomfortable as the aggressive patient’s hurled abuse at the nurses for no apparent reasons.

    The infusion was painless and I suffered no reactions to the drug whatsoever. (I was told on my last infusion that if I was to have a reaction to Tysabri it would have been then or on this infusion).

    Two hours later and it was all done and I was on my way.

    I am generally feeling ok in myself, as I have made great recoveries from previous relapses, it is difficult to see improvements as such, just the fact I have not relapsed since taking it. It seems that the Tysabri is doing what it should be which is to slow down the progression of the disease.

    2nd Infusion – 27th September 2011

    After what seemed a very quick 4 weeks it’s time for my 2nd infusion of Tysabri.

    Knowing roughly what to expect it wasn’t as daunting as the first one.

    I arrived at the hospital at 14.00pm and had to wait around for about an hour and a half before they started the procedure. The ward was a lot busier than the first time I went.

    Before the Tysabri can be administered, the doctor comes round and asks a few questions about how you have been feeling etc. I told the doctor that I had been getting small infrequent dizzy spells of an evening and a few headaches and that the MS nurse had told me that this could due to fatigue rather than the Tysabri. The doctor went off to check with her superior doctor and about 5 minutes later she came back and told me I was ok to start the 2nd infusion.

    The worst part I thought about the 1st infusion was when they inserted the cannula, for some reason this really hurt when they put it in (I don’t know if was just the way the nurse inserted it or if it’s just me). This time round I managed to get hold of some EMLA cream which is applied to the area and then a Tegaderm Film is put on top of the cream. The cream is not rubbed into the skin, it just sits on top until the film is removed. The cream needs to stay on for at least one hour for it to work effectively. The cream anaesthetises the area so you don’t feel any pain.

    Emla Cream

    This cream should be available on prescription from your Doctors if you ask for it. It is normally common to prescribe for children of people requiring minor skin surgery but should be available for people who don’t like needles.

    The time came for the cannula to be inserted, “small scratch” the nurse said, but by the time I had turned my head back, the cannula was already in, I didn’t feel a thing.

    I was warned at this point that if I am to have a reaction to Tysabri then it would likely happen this time or on the 3rd infusion. The nurse then said that the chances of getting a reaction are low (about 3 in 100). I was also told that if I do have a reaction then they would stop the treatment, give me an injection of antihistamines, then carry on the treatment.

    I did not suffer any reactions and even now a few days later feel ok still. They say the reactions normally happen straight away but can occur at any time so I am checking my body regularly for any signs of reaction.

    The infusion once again took an hour to go through and then an hour for the flush. I decided to lie down this time round as last time I got a little uncomfortable sitting on a chair for two hours. The only problem with lying down was it made me feel quite tired although as soon as we left the hospital I was wide awake again.

    About half way through the treatment, all of the chairs are taken away to be transferred into the new hospital. This was the last day that the hospital would be working in this ward.

    Next month I will be having my infusion in the new Queen Elizabeth Hospital (currently been having treatment in the old Queen Elizabeth Hospital). I will also be seeing the MS nurse in the morning to see how I am getting on with the treatment.

    I still am not feeling any better as such, I have read on various different resource pages that it may take up to 5 infusions before you really notice it. The good thing is, I am not getting any worse or relapsing. My legs feel a little weak at times but I am having physiotherapy which involves leg exercises, so they may just be feeling tired until they strengthen back up.

    Once again, I would like to say thanks to my Fiancée Jo for being there with me.

    First Tysabri Infusion – 30th August 2011

    Finally the day has come to have my first infusion, I am both nervous and excited and it’s a very strange feeling.

    With thoughts of PML sitting in my mind and also panicking that I may have a reaction as soon as the drugs start going into my system, it felt like an eternity to get started.

    First thing I was asked to do was tests for MRSA which involved taking swabs of my nostrils and mouth, then I had to do a water test to make sure I did not have a water infection. I also had my blood pressure taken.

    The doctor came round and asked me a few questions before giving the go ahead to start the treatment.

    Then came the worst part of the whole procedure for me, which  was when they inserted the cannula, it felt like they were putting a biro into my arm, but then again, I really don’t like needles. (Every time I have a needle, I get very little sympathy from the nurses as I have tattoos).

    Neil's Cannula

    The pain was only there for about 20 seconds though and I have read that this drug does wonders for people with this type of MS so I am sure I can manage the 20 seconds of pain each month to help overcome all the issues my MS presents.

    Neil's Tysabri

    The infusion itself was painless, the Tysabri took about an hour and then immediately afterwards I was given a “flush” which lasted for an hour (This was the observation period).

    Neil's Flush

    Removing the cannula was painless, the removal of the tape holding it in pulled the hairs out of my arm and because I was focusing on that, I wasn’t even aware that the cannula had been taken out.

    The total time for the visit was about 3 hours in total, next time I may choose to lie down rather than sit on the chair next to the bed as it started to get uncomfortable after the first hour and could not bend my arm in case I “kinked” the cannula.

    All in all, the experience was pretty good, the hospital staff were very friendly (even bought a magazine over to read) and the whole process was carefully explained to me throughout.

    After it was all done, I found myself wondering why I had been so nervous. I am sure the 2nd infusion will be a lot less stressful now that this one is out of the way.

    I did not feel any differences whatsoever in terms of side effects and even drove home from the hospital without any problems. It is impossible to say at this point whether or not the Tysabri is working because I have not long come off steroids which had already put me back to normal. The true test will be whether or not my MS symptoms come back or not.

    I would like to say a big thanks to my fiancée Jo for being there for me through the procedure and through the tough times I have had this year.

    Neil 

    © Multiple Sclerosis Resource Centre (MSRC)

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