Things to remember now I'm leaving the hospital

• Take Aciclovir 200mg twice a day for prevention of herpes viral infection for 1 month.
• The rash will probably come back for a few days, don't panic just take Chlorphenamine 4mg every 4-6 hours (no more than 6 times a day) take as needed.
• If you feel sick or nauseous take 50mg Cyclizine up to 3times a day, take as required. I took this for the first 4 days on Lemtrada but as I hadn't been or felt sick, I stopped taking it as I didn't need it.
• Avoid listeria risk foods to eliminate risk of listerisosis, which can cause serious infection in the immune compromised. You should be provided guidance from the hospital, but you can find loads of info on the internet easily enough.

Remembering to take the medication wasn't so bad, but giving up cold meats to avoid listeria risk is hitting me hard, I can't even buy shop bought sandwiches!

Day 5 Friday 18 September 2015_please let me have the last infusion and go home!

So just to tie up the events of last night, the rash was getting worse and so I had chlorphenamine 4mg at 02:00 but the rash continued to spread. I had a worsening sore throat which I am almost certain I caught from some of the other people in the ward or visiting people in the ward on Wednesday and Thursday (I was so annoyed about the woman in the bed opposite me that coughed across the room at me while she continued typing on her notebook … (cover your mouth! People get taught this as a child!) I was fuming, and the women next to me obviously had a bad cold but at least I couldn’t blame her for coughing straight at me. Just an unfortunate situation, sick people and sick visitors in hospital, I guess this is a probability.

At 03:30 the on call doctor came and visited me in the ward, she was quite young and obviously hadn’t had time to read my case notes properly as all she wanted to know was had I had this medication before and did I get this rash before, she only wanted to know the answer to these questions and repeated them to me when I tried to explain the situation, I had to stop her from talking over me and tell her that she needed to listen to what I was trying to explain (difficult situation, but she annoyed me). That was all from the doctor’s visit, nothing really to conclude.

By 04:17 the rash was still worse on my face and arms.  At 06:00 I had my bloods taken as usual and I noticed then the rashes were finally improving. Where I previously had red blotches, mostly an outline of each blotch was left, leaving me less rashy but still quite covered in patterns.

Around 10:00 the 2 doctors Sophie and Ali came onto the ward to check on me before they gave the final decision about the final dose. I showed them the remains of my rash which was quite widely spread spotty red outlines of the old rash, it wasn’t inflamed or itchy, just like leftover footprints in the snow … you can tell something was there before. But anyway I think the doctors were relieved to see that everything had calmed down despite the dramatic handover they had heard and seen on my notes that morning looking over the previous night and at least I was in high spirits. I think the doctors couldn’t believe it, they were smiling a bit but apologising, haha they said ‘we’re sorry we did this to you’ in a shocked, nervous giggle kind of way.

I obviously didn't take so many pictures at this stage to show the leftover outlines :-( , sorry this is all I've got really for pre dose day 5.

 

At the end of it all, the doctors had some ideas what they might do, option 1: have a break and do the last infusion on Monday! Or option 2 load on the IV hydrocortisone immediately before and immediately after Lemtrada infusion and give 1g of steroids and then some more hydrocortisone later, depending on how the rash develops or not. We discussed the options openly and I asked if I would be allowed so many steroids because I thought I was already at my maximum allowed steroids (probably for the year!), I asked if they could check with Dr Malik (my consultant neurologist) and so they did. By 10.30 Dr Malik had got back to the other doctors on the neuro planned inpatient unit and said to give 1g steroids and don’t worry about the hydrocortisone ‘that would be overkill’ were his words.

The new plan obviously hadn’t got over to all the nurses because I had 1g of steroids and then IV hydrocortisone IV just before starting Lemtrada at 11:20. Honestly I didn’t mind an extra shot of hydrocortisone, I asked the nurse if she was sure I was still meant to have this and she said she was sure, so I didn’t want to make a fuss.

The Lemtrada went in over the usual 4 hour duration with nothing to new to note. By the end of the infusion at 15:15, the nurses had found out / realised no more hydrocortisone was requested by the medics / Dr Malik.

After the infusion I just had to stay for a saline flush (this had been done on all of the previous Lemtrada infusions too, I'm just realising I might not have detailed this in the other day's blogs) and then I left the hospital by 16:50.

Honestly I was tired, I had hardly slept for 4 nights in the ward and had taken quite a lot of drugs along the way. I had spent most of my time just sitting or laying in a bed so the over-rest had taken it's toll and I definitely didn't feel like doing anything more than I had to. I decided to indulge in my own fragility and planned to do very little once I got home.

The End (for now) ... sorry I am only uploading this so behind real-time, I'm trying my best to catch up with my blogging here.

 

Day 4 Thursday 17 September 2015_the real day of the rash

I was up early from the ward noise (I’m not actually sure that I even slept much), blood was taken around 06:00 as usual, I just hoped that my blood results would be remaining stable, wish I could have seen the results for my own interest but I was too shy to ask.

Day 4 was the first day without methylprednisolone prior to the start of the Lemtrada infusion, because of this the doctors decided I should have IV hydrocortisone just before starting the Lemtrada and at the end of the 4 hour infusion to stop the rash from erupting again. I knew this was quite a lot of medication, but I was kind of happy for the doctors heading down the cautious route.

Today I had a record early start time for the Lemtrada infusion, starting at 10:26. Half an hour into the infusion I got a mild headache which only lasted 30 minutes. Not much to note, just sitting around with not much happening, my poor mum has been talked to death, so much so that we have little to talk about still, she’s probably falling asleep at my bedside!

By 18:28 I had a number of red spots spread mainly across my arms and legs, maybe a few on my face, here are a few pictures:

I had ome IV piriton and IV hydrocortisone before I went to bed, which brought the rashes down again, but unfortunately it was just a matter of time before  it would be back.

 I went to sleep for a few hours and then woke up from having an itchy back. I briefly looked at my legs and saw that the rash has reached it's most extensive stage yet, here are a few more pictures

The rash seemed to be spreading in front of my eyes. I went to the nurses desk to show & tell the nurse who was really shocked when she saw me and she immediately called the medic on call. Again the only symptom I had was the rash. I took some chlorphenamine but quite frankly it was hardly touching it. This is my back at its worst about half an hour later:

So that was day 4, leading into day 5. Feels like a dramatic evening running into the morning, but I was OK, just extensive, impressive rash, but it was all expected so I was calm about it. I just took loads of pictures as I really wanted to show others what my rash was like. I'd tried to find pictures before I started Lemtrada but I couldn't find any so didn't really know exactly what to expect. I hope this helps people, you shouldn't be scared because of my  rash, apparently it doesn't happen the same to everyone, but just to let you know this rash wasn't such a bad experience.

Day 3 Wednesday 16 September_rash pevention program

Because of all the rash events of day 2, the on call doctor was made aware and so came to check on me at 01:00  am (a surprise wake up call) just to see how my rash was doing. To both our surprise, there was no rash to be seen anywhere, it seems the anti-inflammatory drug overload was working and doing a good job to reduce my reaction to Lemtrada.

Blood taken at 06:00 as usual, had a shower and while having breakfast got a surprise visit from my neurologist who asked if I’d mind coming to one of his teaching lectures for 3^rd year med students. I was a bit shocked but accepted the invite, he would pick me up in 15 minutes (I thought to myself he was lucky I was already showered and dressed! … now wished I had bothered to wash my hair). As we walked to the lecture my neurologist was asking how I was doing, he noticed I looked good and I even realised I was feeling quite ‘on top of things’, walked very well and felt like I  had a lot of energy, I told him I was buzzing inside, felt so alive (probably thanks to the steroid kick). So all I had to do at the lecture was to be a case study for the students to interview / investigate (from my background I think me neurologist knows that I would be happy to do this sort of thing).

So I was happy for the morning’s distractions and brief escape from the ward. I returned just in time for a quick check over by the doctors, then to make the plan to have some extra IV hydrocortisone before Lemtrada infusion start and some later on after the infusion was completed. Started the steroids at 11:45 and Lemtrada started at 12:35, just had some short delays due to nurse availability, but I didn’t mind… I didn’t have anything else I needed to be in a hurry for. I had the usual flushing of my face, arms and legs from the steroids. I also had the feeling that my heart was beating quite fast, but I knew this was a common side effect of steroids and so I tried not to pay too much attention to this, because the attention would just build anxiety and make it worse. Headache stared by 13:55, it wasn’t a bad headache but I noticed it and so decided that I should try to sleep it off but the headache was short-lived and resolved itself by 15:32. At 16:07 I took some more chlorphenamine to try and bring the rash down, it worked a little but the rash was still visible all over.

Later as the rash had started to come back, the nurses gave me some more IV hydrocortisone and IV piriton too, this seemed to bring the rash right down. These extra shots of hydrocortisone were additional to the usual protocol, but the medics seemed to want to take the overly cautious route with me because the rash seemed to be more widespread and persistent than they had usually experienced already on day 2.

I was irritable and restless in the night, but that could be due to the noisiness of the wards as well as the medication overload. I was fed up of the lady in my ward shouting for her dad to turn the light on throughout the early hours, so I went down the corridor to listen to a different person calling seemingly crazy, random things loudly throughout the night (It hit me that I was actually the fittest, heathiest person in this place and bought on a strange moment of reflection that I could be glad for my current situation, in a weird, angry but sad kind of way)

In summary, the rash was definitely well controlled with a selection of drugs. I was tired from lack of sleep but otherwise I was feeling really good (probably thanks to all the drugs). No new picture for today because the rash events were mostly uneventful today!

Day 2 continued_the rash starts at the end of infusion #2

So this is how the rash started (about half an hour before  the end on infusion #2), not so bad or dramatic, just a little bit itchy and probably 1 day earlier than anyone expected (apparently usually the rash first comes up on day 3 or 4).

Day 2, Tuesday 15 September 2015_erruption of an early rash

So after a surprisingly uneventful first day yesterday I didn’t sleep much that evening, probably due to the steroids and the ward environment was a bit noisy. I was woken up this morning at 06:00 to get my daily blood sample taken so that blood results would come back and dosing with the second Lemtrada infusion could be started earlier than we had the previous day. At 08:45 I had the pre dosing drug cocktail of paracetamol, chlorphenamine, acyclovir and cyclizine to ward off any infusion side effects. Started the 1g methylprednisolone (steroid) infusion after the doctor’s review and test results were confirmed to be ok at 10:45. Started getting a headache shortly into the steroid infusion at 11:00. Funny thing, when I started the Lemtrada infusion my headache stopped quite rapidly, which even more confirms in my mind that the steroid infusions were quite responsible for the headaches I was experiencing (although I didn’t always get headaches with steroids in the past).

By 14:30 I was in quite an irritable mood, the ward was busy and noisy with lots of visitors and nurses, so I escaped with my drip stand next door to the ‘visitor’s room’ where the room was peaceful (and empty)… what a relief. At 15:06 whilst ‘chilling out’ in the visitor’s room I noticed around 10 little red spots on my upper left arm (Lemtrada infusion arm), at 15:42 I took some chlorphenamine to try and bring down the red spots but by 16:20 I had even more spots which were now on my right arm too. Some of the spots became raised and like whelts on my skin, quite red and angry looking.

At 16:42 I was given IV hydrocortisone to try and control my rapidly expanding rash, it worked well and within 30 minutes it seemed that the red spots were reducing in size, intensity and number. 17:10 and the red itchy welts were now popping up over both of my legs and by 17:26both arms and both legs were quite covered with this spotty, slightly warm, itchy rash.

I didn’t feel unwell, but when I went to the toilet I noticed I was quite gassy (sorry for the unpleasant details) and ‘movements’ were a bit loose if you get my drift.

At 19:10I had more chlorphenamine and IV hydrocortisone after the on call doctor ws notified of my rash. The good thing was that despite the rapid spread and itchiness, my breathing was never effected, no tightness of chest, which was the most important thing (the rash was expected, although mine apparently came a day or 2 earlier than usual).

22:06 and most of my rash had gone down and resolved, I had a few spots on the back of my left arm still, but mostly finished for now!

Day 1 Monday 14 September 2015_treatment begins

Admission day and I'd been asked to come in for 09:00 to get my bloods taken,  the results of which would need to be reviewed by the doctors before dosing of Lemtrada could start (the nurses warned it was going to be a long day!). I was given a bed and basically settled down to try and get used to the concept of living here until Friday.

Somebody else was also there to start Lemtrada the same day a me but she thought she might have been suffering from a urine infection. Just a word of warning, I don't think they will start Lemtrada with current/ongoing UTI ... as this lady found out se was sent home after a lot of waiting with a 3 day course of antibiotics and no Lemtrada start that day. I myself had needed to get various appointments with a urologist to confirm that they didn't think I was suffering from recurrent UTIs as I do have recurrent discomfort but mostly without any proven bacterial growth (had just been stuck in a cycle of everyone thinking it sounds like a UTI so passing antibiotics my way). I have started taking D-manose and this has relieved a lot of discomfort.

Anyway back to the point of Lemtrada, at 15:00 I got confirmation that blood and urine results were OK to start Lemtrada and an IV infusion of 1g Methylprednisolone (steroids) was started, to last 30 minutes. I was given some other meds in preparation for the Lemtrada dosing including 1g paracetamol, anti viral (Aciclovir 200mg), anti histamine (Chlorphenamine  4mg) and anti sickness (Cyclizine 50mg). I started Lemtrada infusion straight after the steroids at 15:30. I had a headache develop about 30mins into the lemtrada infusion, but the headache was mild and stopped by 18:00. The best advice I could give when having Lemtrada infusion is to just sit back and relax as much as possible, I didn't want to make my mind to busy with waiting for the worst to happen.

By 22:00 I think I had some warm flushes on my face and forehead but I didn't think it was warm to touch, probably because of the steroids anyway. An that was all the excitement for day 1! I was relieved that it seemed so easy and hardy any side effects to note!

 

Day -3 Friday 11 September 2015: the call

So one day at work and I'm talking in the office about my upcoming Lemtrada treatment. The plan was to have the treatment in early September, but hadn't heard anything from the hospital regarding my admission for he week of Lemtrada treatment (Mon-Fri). I was frustrated and anxious and just wanted to hear a progress report to get some idea about where my case was on the hospital priority list.  I had called and left messages with the MS nurses the 2 days previously but had no response.

Then I received a call from Charring Cross asking if i would be available to come for Lemtrada on Monday (someone else ha cancelled their procedure and so there was now availability)! I was gob-smacked and said I would need to double check a few things and confirm shortly. My office was very supportive and told me to go for it, quickly called my mum, then before I knew it I was calling the hospital to confirm I would be able to come in (before I lost this opportunity ).

Needed to tie some things up at work, so stayed late, then packed my desk away into my little suitcase and left the building. Was quite emotional, I was scared, didn't know what would happen and couldn't be sure when I was coming back ... It felt like something out of a movie where the girl has to walk away from what she knows (emotional drama!)