I'm writing this in the hope it gives readers some more information about Campath-1h
Before reading this, please bear in mind the following:
I am a 37 year old man, living in the UK. I was diagnosed with probable relapsing remitting MS in October 2001 after a fairly major relapse in July of that year. I had suffered some sensory disturbances a year or two earlier, but had ignored them thinking they were the result of a sporting injury. It was impossible to ignore the July attack. I went numb from my feet to the middle of my chest.
Fortunately by February 2002 I had recovered fully from that relapse, and naively thought things would be okay for a while. I was wrong. During 2002 I had at least four relapses, possibly five, and my diagnosis became one of clinically definite MS. I lost track over the year as what was relapse and what remission. During relapses I had to use a walking cane, and suffered various sensory problems in my hands and legs. My ankles and legs became very weak and stiff. I struggled to walk up stairs, feeling as if I had lead weights attached to my ankles. Whilst I recovered my ability to walk after each relapse, my stamina dwindled considerably. I tired more easily and found exercise and my aikido training more exhausting.
I was considered for Campath-1h in August 2002. I was accepted for the CAMMS223 trial of Campath-1h versus beta interferon, but changes to the trial protocol and the unclear date of my first symptoms meant I had to be excluded. The organisers had originally considered me for Campath-1h for two reasons:
I accepted the offer of treatment for the following reasons:
The Campath Treatment 2nd February 2003
Day 1 - Sunday
I arrived at Addenbrooke's in Cambridge. I was admitted to the neurology ward the evening before treatment. This was not because any particular tests had to be conducted, or food/water denied me, but simply to secure a bed for the forthcoming treatment. I won't bore you with my personal views on the efficiency or otherwise of the UK health service. Suffice to say, my initial impressions of the ward I was destined to stay on were fairly grim. Those views didn't change much over the course of the week. Those of you who have spent time in an NHS hospital may know what I mean. Entering hospital when you are feeling perfectly well, only to spend time there and receive a treatment which may (initially) make you unwell, is a strange experience. It made me feel like a bit of a fraud. It also made me hope I didn't last to a sufficiently old age to endure some of the indignities suffered by the older patients with distressing neurological conditions. It also made me envious of those on the official trial who would avoid this.
Day 2 - Monday
Treatment started first thing in the morning, which I found exhausting, as I'd slept only a few hours during the night. I had blood taken to check for base levels of lymphocytes and other bloody chemistry. I had a cannula inserted in my arm, which was to stay there for the rest of the week. Fortunately it didn't fail or block and need replacing. I don't like needles at the best of times, have never had an IV drip before, and didn't particularly like having the device embedded in me all the time.
My first hour of treatment consisted of steroids. I was given methylprednisolone 1g for each of the first three days before Campath-1h treatment. I experienced few side effects from the steroids, which surprised me as I'd never had them before. I did suffer the unpleasant metallic taste, a feeling of restlessness (tired but with a mind that couldn't rest) and a light-headedness, which affected my balance.
Before the Campath infusion started, I was given two doses of antihistamine (Piriton and Zirtek) and some paracetamol. The antihistamine was to act as a prophylactic to reduce the effects of the 'Campath Rash' (more of that later), while the paracetamol was designed to keep my temperature under control. Campath seems to make body temperature rise, and this can exacerbate other symptoms (rash, MS symptoms, headaches etc). The other prophylactic was the consumption of large quantities of water. I drank about 3 litres of water during the infusion each day. I was told this would also help maintain my blood pressure and heart rate, both of which Campath can reduce significantly, and both of which were checked every 30 minutes during the infusion.
The infusion lasted for 4 hours, and consisted of 20mg of Campath 1-H. This was the dose given for each of the 5 days. The time taken to give the infusion was reduced each day as my body grew accustomed to the treatment.
My most significant symptoms of the day were a persistent mild headache and a general overwhelming feeling of weakness. I didn't suffer the rigors, sweats or other flu like symptoms that Campath can sometimes induce. The headache was helped by the water consumption, the paracetamol and a stronger painkiller. The only downside to the latter was a slight feeling of nausea and more light-headedness.
I didn't suffer a recurrence of many MS symptoms other than a slight weakening of my legs and some tingling in my hands and legs. The weak legs were difficult to distinguish from the general weakness I was feeling, but I did need a walking stick to help with my balance. It also helped to propel me to the loo/washroom as the water I'd been drinking took its effect. Campath can sometimes induce the type of MS symptoms that occur when PwMS take a very hot bath. It isn't believed to be a relapse, but can be distressing nevertheless.
I was given a sleeping tablet to combat the restless feelings that the steroids induced. It also blotted out the general mayhem on the ward and allowed me to sleep for more than a few hours.
Day 3 - Tuesday
I was given the IV steroids, Campath-1h, antihistamines, paracetamol and litres of water over 4.5 hours today. I experienced many of the same side-effects as on Monday:
Day 4 - Wednesday
Another day of steroids, Campath-1h, antihistamines, paracetamol and water. This time the infusion lasted 4 hours. The side-effects were the same, but I started to develop the Campath rash late in the day. It began with a few small pimples like nettle rash on my shoulders and upper chest. I thought nothing of this, and kept taking the antihistamines. I don't particularly like taking them, as they tend to make me feel woozy, de-hydrated and generally unpleasant. I also suffered a minor asthma attack in the late afternoon. I had been warned that Campath can induce this type of reaction, usually after the infusion. I suffer from mild asthma, and am used to the chest tightening sensation, but it can't be pleasant for those that do not realise what is happening. I used my salbutamol inhaler and the attack passed.
My progress had been so good up to that point, and my side-effects so controllable, that I was asked whether I would like to be discharged overnight. I only live a few miles from the hospital, had someone to drive me back and forth, and someone to look after me. I jumped/limped at the chance and went home. I did wonder later whether this had been the right choice when my asthma returned with a vengeance. It took a number of uses of my inhaler to control the attack, and it did frighten me. I wouldn't have taken much more for me to have returned to the hospital, in spite of the grimness of the ward. Still, I survived and stayed at home until the following morning.
Day 5 - Thursday
No steroids were administered today, so the infusion only lasted 3 hours, with no new symptoms and a reduction in most previous symptoms. Again I was given antihistamines and paracetamol. I was extremely grateful for the former. The rash had been spreading down my body during the night and early morning. As the rash moved, it changed from small pimples to large red blotches, and finally looked much like a red coastline. My neuro cheerfully informed me that this was a 'geographical rash'. The fourth dose of Campath didn't help the rash at all. I looked like I had severe sunburn and the rash became intolerably uncomfortable. It spread to my arms and eventually to my legs during the course of the day. It was all I could do to stop myself clawing my skin from my body or holding a nurse hostage until I was brought more antihistamines. I felt like an antihistamine junkie, waiting desperately for my next fix of Piriton.
I was discharged again in the evening, and was given a dose of Ventolin via a nebuliser to open my airways and try to prevent another asthma attack. It seemed to work, as I only felt slightly asthmatic during the evening. I took Piriton every 4 hours, and was desperate for each dose.
Day 6 - Friday
A short dose of Campath-1h over 2 hours, with few symptoms other than the general feeling of weakness and a body temperature that felt as if it kept on fluctuating. The core temperature readings taken every hour or so suggested otherwise, but I felt constantly hot or cold, never just right. The rash started to abate. I had feared that another dose of Campath-1h would trigger a re-occurrence, but it didn't. The rash was finally hitting the lowest points on my body, and I could see an end to it and the ghastly antihistamines. I was discharged from hospital almost as soon as the treatment had finished. I was given another dose of Ventolin via nebuliser to open my airways.
I was sent home with antihistamines and sleeping tablets. I was also handed a copy of my discharge letter, which showed my blood chemistry with zero lymphocytes. I was advised to keep a copy of it to hand in case I was admitted to hospital again for any reason over the next few weeks. Any doctor treating me and taking a routine blood sample would be astonished by what they found, if they didn't know what I had just done. I was advised to avoid ill or infectious people for at least the next 8 weeks, advise the hospital of any suspected infections, but otherwise to continue with my normal every day activities. I was also told that I would probably be too weak to do much other than rest for the first week or two. I was asked to have a blood test each Monday for the next 4 weeks to check whether I was developing antibodies to the Campath-1h (something that would stop me having another dose) and to return for a check up in a month's time.
Week 1 after treatment
For the first few days after discharge I felt awful. I felt completely exhausted. I was relieved that the treatment was over, but more tired than I had ever felt before. Fortunately I was able to sleep, and had my wife and kids to look after me. By the end of the first week I felt significantly better. I was still suffering from balance problems, weak legs, temperature fluctuations and irritable skin, but I felt stronger. The irritable skin was an odd sensation. It was like permanent chilblains. No rash was visible, but I couldn't stop scratching. This was helped by a low dose of antihistamines.
Week 2 after treatment
My skin still felt irritable, and my asthma was slightly worse than normal. My temperature had settled down a bit and I didn't feel so tired. In fact I felt completely the opposite. I didn't think I'd felt that well in a long time. I had some residual MS symptoms consisting of tingling, buzzing and slight leg stiffness, but nothing that couldn't be ignored. I had huge amounts of energy, and I couldn't work out where it came from. I wondered if it was something to do with the steroids, or merely a reduction in MS fatigue as the disease went into remission.
Week 3 after treatment
I figured out where the energy boost came from - the steroids. As their effects wore off, I started to tire more easily. This pleased my wife, as she was starting to find my bouncy, perky, 'Duracell Bunny' impressions wearing. I was not exhausted, just not quite so energetic/annoying. I suffered a few more transient MS symptoms (tingling hands and twitches) but nothing that could not be ignored.
Weeks 4 and 5 after treatment
I had my last weekly blood test. My energy levels were continuing to decline, and more MS symptoms (twitching, buzzing, tingling and leg weakness) became apparent, although they were still fairly transient. Towards the end of week four I was becoming very tired. Sleep didn't seem to help much and the MS symptoms started to concern me. I thought the flag was about to be raised on another relapse, but nothing happened and it appeared to be a false alarm. By week five other non-MS symptoms started to intrude (persistent headache, aching muscles, restless sleep, and sore throat) . I couldn't keep myself away from the sickly world entirely, and I believed that I had picked up some virus from somewhere. I was less than thrilled as my eldest daughter succumbed to a minor stomach bug. At the end of week five the jury was still out on whether it would develop further.
First Check Up - 1 month - March 2003
I met my ever cheerful neuro at the end of week five. He put my mind at rest about the transient MS symptoms, assuring me that Campathers can suffer quite severe MS symptoms for up to two months after treatment. Some even suffer full blown relapses. Yet more blood was taken, and he said he would advise me if there was anything amiss, including whether there was evidence of an underlying virus/infection. He also told me that the % rate of Campathers who had developed Graves disease had fallen to 25% from 30%, although this was based on a very small number of patients, and a more accurate figure would be obtained as more were treated. I felt more relaxed after the meeting, and looked forward to the next check-up in a few months time.
Second Check Up - 3 months - May 2003
The previous couple of months were good, but not brilliant. On the MS front things were excellent. I was very pleased with the effect Campath had on my MS. I suffered only transient symptoms and only the hint of a possible relapse. The latter felt as if it was 'under starters' orders' but never developed into anything else. I was able to return to my aikido training, and sustain decent periods of activity.
It wasn't the MS that caused me problems, but other tedious ailments. The infection I thought I'd picked up prior to my last check up made itself apparent afterwards. I suffered a nasty cold/cough. It took me a week and a half to recover from the bulk of it, whilst I suffered a persistent cough for another three weeks. My wife and kids seemed to suffer from the same virus and recovered within 48 hours. Still, I recovered fully, and had been warned of possible opportunistic infections. I had been paranoid about stopping other people's children visiting the house, but I had caught the virus from a trip to my aikido dojo. Still, it didn't stop me continuing to be the unreasonable father.
Just as a I recovered from the cold my stomach started to complain. I suffered stomach cramps whenever I ate certain foods. At first I thought it was a standard stomach bug, but only certain things seemed to upset me, and most of these contained gluten or milk/dairy. My GP performed various blood tests (e.g. for helicobacter pylori) and prescribed me nasty pink liquid to soothe my stomach. I simply avoided the foods that were upsetting me, and things started to improve.
All tests were normal apart from an antigliadin antibody test, which showed elevated levels of those particular antibodies. Those are antibodies which suggest an intolerance to gluten. A much more sensitive and more modern test performed at the same time (tissue transglutaminase-2) showed quite the opposite i.e. no intolerance to gluten. I should point out here that my mother suffers from gluten intolerance, so I have a genetic predisposition to it anyway. With the contradictory results, and my family history, my GP decided to refer me to a gastroenterologist for further prodding and poking at the end of July.
I visited my neuro for the second check up. He listened to the various complaints about my stomach and suggested he would also extend the usual blood tests to include the antigliadin antibodies. He did suggest that the steroids given with the Campath might have irritated my stomach lining, even to the point of causing a stomach ulcer. This did ring true, as non-steroidal anti-inflammatory drugs have previously upset my stomach, so steroids could conceivably have caused even greater problems.
Third Checkup - 7 months - September 2003
As promised, my neuro analysed my blood from before and after Campath and found some interesting results. Tests pre-Campath found that the antigliadin antibodies were within a normal range. Tests taken in mid-May also showed they were within a normal range, but tests from mid-March showed a large spike in the level of the antibodies. This coincided with the onset of the stomach pains. These pains and other symptoms declined as the weeks passed, and varied according to the type and quantity of gluten-filled products I consumed. I found it simpler to avoid bread and pasta altogether, but took advantage of the fact that beer (contains barley) didn't affect me. I continued to check how much gluten I could consume and found this was increasing month by month. I was scheduled to have further gastrointestinal investigations at the end of July. I chickened out. My symptoms were getting better week by week, and I decided to give them another few months to correct themselves. I didn't think it was unreasonable to avoid an invasive procedure if I believed I was getting better.
I suffered some transient MS symptoms during these months. These were always triggered by a lack of sleep, excess heat, travelling long distances or stress. I had been feeling so well that I tended to overdo things. I drove hundreds of miles without concern. I walked long distances in blazing heat. I pursued my acquisitive daughters around endless tourist shops. I even travelled to Edinburgh and Cardiff on consecutive weekends and did hard aikido training for six hours a day on two days during each weekend in 90 degree heat. After such bouts of lunacy I was forced to use my walking cane for an hour or two, but that was a small price to pay, and any symptoms always passed after some sleep. It reminded me that I had MS, but it also reminded me what I was still capable of doing, and with so few side-effects.
It was quite a surprise at my third checkup to see that my neuro had changed sex. It turned out he was on holiday, and his stand-in was a new member of their team, a superb neurological registrar. She took copious quantities of blood, and explained to me that at the next checkup the possibility of a second dose would be discussed. She also suggested that with any luck the NHS experience might be avoided next time around. Conclusion
The treatment wasn't as terrible as I had expected, and it was mercifully short. I had my fair share of immediate side-effects, but think I was lucky not to suffer more. The NHS experience wasn't pleasant, but this was mitigated by the superb nursing care I received.
Overall I would say so far so good. I feel as if I've been given a second chance. I'm very happy with the effects that Campath has had on my MS. I'm a little bored with my gluten intolerance, but this is a minor inconvenience when compared to MS. I'm hoping that will resolve itself before too long.
If other Campath users, or those considering Campath treatment, wish to contact me, they may do so at <<this email address>> or via my website, http://www.btinternet.com/~campath/.
My thanks to Paul Jones for hosting this page on his site.
Thank you for reading this, and good luck in your fight with MS.
© David Sturt September 2003