Before reading this, please bear
in mind the following:
Thank you for reading this, and good luck in your fight with MS.
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I live in the UK and 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 to 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 (or Lemtrada)
in August 2002. I was accepted for the CAMMS223 trial of Campath (or Lemtrada)
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 (or Lemtrada) for
While I could not be included in the CAMMS223 trial, the organisers felt that they had promised me a treatment and therefore could not now ignore me. It would have been easy for them merely to exclude me and suggest I opt for beta-interferon treatment. Instead, they offered me Campath (or Lemtrada) on a compassionate basis, for which I cannot thank them enough. With hindsight it was a blessing in disguise. I was being offered the potentially more powerful drug, did not risk being randomly chosen to take Rebif (the beta-interferon drug chosen to compare with Campath), and did not have to endure the ghastly pre-treatment MRIs. The sole, and rather minor, downside to this was that my treatment was administered on an NHS ward rather than in a swanky new clinical trial centre.
I accepted the offer of treatment
for the following reasons:
MS can be a devastating disease that takes many years to show its true self. It is easy to forget about the disease, or even deny its existence, when you are in remission. You often feel so well. Even immediately after a relapse, it is easy to believe that MS is a passing ailment. When considering Campath (or Lemtrada) it may be worthwhile asking others to remind you how you felt and behaved during previous relapses. This may focus your mind on whether or not to accept treatment, as it did for me.
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 it 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 blood 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 (or Lemtrada) 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 (or Lemtrada) 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 (or Lemtrada) 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 (or Lemtrada) 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 (or Lemtrada). 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 (or Lemtrada) 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 (or Lemtrada) 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 (or Lemtrada), antihistamines, paracetamol and litres of water over
4.5 hours today. I experienced many of the same side-effects as
Once again I relied on a sleeping tablet (zopiclone) to help me rest.
Day 4 - Wednesday
Another day of steroids, Campath (or Lemtrada), antihistamines, paracetamol and water. This time the infusion lasted 4 hours. The side-effects were the same, but I started to develop the Campath (or Lemtrada) 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 (or Lemtrada) 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 (or Lemtrada) 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 (or Lemtrada) 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 (or Lemtrada) 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 (or Lemtrada) (something that would stop me having another dose) and to return for a check up in a month's time.
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 (or Lemtrada) 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 eggs. 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 celiac disease, so suppose 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 (or Lemtrada) might have irritated my stomach lining, even to the point of causing a stomach ulcer.
Third Check Up - 7 months - September 2003
As promised, my neuro analysed my blood from before and after Campath (or Lemtrada) 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, traveling 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 traveled 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.
Fourth Check Up - 10 months - December 2003
The last few months have been curious. Good, but curious nonetheless.
I suffered an unpleasant cold in mid-October, with an irritating (to me and those around me) and persistent cough. Oddly though my wife also suffered from it, but took longer to recover. It made me think that my immune system was not as weak as I had imagined. I also dodged various viruses brought home by my children. Treating my poor daughters as 'lepers', and liberally applying disinfectants, seemed to help
I had an unpleasant experience when trying to swallow some food. It became lodged in my esophagus. The water I drank to shift it came back out like a fountain. I aspirated it and almost choked. I changed my eating habits, and chewed my food much more, which seems to have helped with other unrelated swallowing issues. My neurologist did not feel that these issues were MS related, but could instead be structural. She suggested that it should be investigated further by an Ear Nose and Throat (ENT) or Gastrointestinal (GI) specialist. The fact that my brother also suffered a similar more serious incident a year ago suggests there could be a family 'design fault'.
I was still unable to eat large quantities of gluten - it caused a headache, dry mouth and a generally unpleasant feeling. I modified my diet, and only found traveling a slight problem. I occasionally tested my stomach to see if anything had changed - things had stabilised.
During October and early November I suffered more fatigue, used my walking cane more often and even experienced L'Hermittes sign. I wondered if I was having a minor relapse. It seemed to follow the pattern of previous exacerbations, albeit much less seriously, i.e. a couple of days of depression followed a few weeks later by increased activity, fatigue and leg stiffness/weakness. But it also coincided with quite a high level of physical activity and a poor sleep pattern. I painted the outside of my house (hard for someone with vertigo), went to Disneyworld (Mission Space being a ride to avoid for those who do not like MRIs), and did a lot of aikido training. My neurologist did not believe it was a relapse. She felt the symptoms were probably due to the exertion and lack of sleep. I suffered no new symptoms, and what I did encounter was very transient (lasting a few hours at a time). Only an MRI would have given a definitive answer, but the fact that I did not really know if something was happening suggests I may have been worrying unnecessarily.
My second dose of Campath (or Lemtrada) was discussed. It has been scheduled for mid-April 2004. There was some very good news. I would not be treated in the standard NHS ward, but in the swanky clinical research centre. This was a great relief, not least because the date of treatment could be set more precisely and would be less likely to change. All blood tests from the check-up showed nothing abnormal.
Final First Year Check Up- 13 months - March 2004
The last three months have again been a bit of a curate's egg, good in [many] parts.
I seem to have avoided or fought off any of the infections going around. My poor wife has had a couple of streaming colds, which seem to have passed me by. We've also been fortunate that there has been no major flu outbreak this winter, nor any return of delightful winter vomiting viruses. My neuro suggested at the check up that whilst my lymphocytes were still few in number, my immune system was now relatively strong.
Unfortunately my stomach decided to upset the proceedings. Once again I suffered painful stomach cramps, vomiting (if the cramps became too painful), headaches and a dry mouth after certain large meals. My wife helpfully suggested that I seemed like a baby with colic, which obviously cheered me immensely. I on the other hand assumed that this was another food intolerance, but I couldn't isolate which food. My GP ruled out a gut infection a) by testing and b) because of the lack of any other noticeable or persistent symptoms. He suggested that the cramps may be a symptom of Irritable Bowel Syndrome (IBS). He prescribed an anti-spasmodic (mebeverine hydrochloride). This seemed to work reasonably well. Taken for a short period as prescribed, my gut relaxed and stopped complaining. For me this also opened up the possibility that my apparent gluten intolerance might be related in some way to the IBS. The reaction to gluten in 2003 was identical to the non-gluten IBS symptoms I suffered. This might have been purely coincidental, but my most recent antigliadin antibody tests still showed no apparent gluten intolerance. I therefore planned to 'test' my gut with more gluten.
This has been a very good few months. I decided to take things slightly easier this quarter, and it paid off. I still did a lot of exercise (lengthy walks to train for my sponsored walk later in the year year), but I also slept better. I used a walking cane maybe once or twice, and rarely felt excessively tired. I visited a speech therapist to look at my swallowing difficulties. She suggested that my tongue was not properly co-ordinated, and that could cause food to lodge at the back of my throat. She referred me for a 'barium swallow' (x-ray of the throat and gullet done while I swallow a radioactive liquid) to check what was happening. I hoped to have this in three to four months.
The only new symptoms I noticed were a persistent slight tingling at the tip of my tongue, and a nagging twitch around my right eye. My optician suggested that the latter may be due to my spectacle prescription, and I planned to change my glasses as soon as possible.
My neuro explained the procedure for the second dose of Campath (or Lemtrada), and warned me that I may not react in the same way as before. It could be better, or it could be worse. Nothing abnormal was found in my blood tests.
I was much less concerned about the second dose of Campath (or Lemtrada) than the first. My wife would probably disagree with that, as she believed I was mildly stressed (or a pain to live with) for the previous four weeks.
In spite of the inauspicious date for the treatment, it was only going to last for three days, rather than five. It was going to be administered in far more relaxing surroundings, in the clinical research facility rather than a hospital neurological ward. I also felt I knew what to expect.
The procedure was exactly the same as for the first treatment. On each of the days I was given intravenous steroids followed by Campath (or Lemtrada). I was also given antihistamines to guard against the 'Campath Rash', paracetamol to keep my temperature down and a sleeping tablet (the wonderful zopiclone) to help me sleep at night.
I did not suffer any more initial side-effects than during the first treatment. I suffered some asthma symptoms, a persistent but mild headache, general weakness and a terribly bloated stomach (probably from the steroids). Overall the symptoms were milder than the previous time. Even the rash was not as violent as before. It did not follow the predictable pattern of starting at one end of my body and moving towards the other. Instead it popped up briefly and then disappeared again. By the third day it was becoming more annoying, but it was never quite bad enough to consider holding anyone hostage for more antihistamines. The fact that the rash would not just come and then leave was more tiresome.
I was discharged on the Friday with more asthma medication, an asthma spacer device, antihistamines and instructions to have blood tests done every Monday for three weeks.
Weeks 1 to 4 after second treatment
After discharge from the hospital I felt tired, but not completely wiped out as I had done before. In fact my energy levels were surprisingly high. The rash continued to trouble me. It kept coming and going and persisted in doing so for the next week. I had been warned that the rash after the second dose could be worse than the first dose. It was not more uncomfortable, just more persistent.
The symptom that troubled me most was my asthma. In the early hours of the Sunday morning after discharge I woke up with a very tight wheezy chest. I could not breath properly and my asthma symptoms were worse than ever. I had been slightly more asthmatic during the preceding few weeks due to high tree pollen levels, but this was different. I panicked, but did finally manage to control the symptoms using my inhaler. On Sunday morning I felt that my chest just would not clear, so I visited the A&E department at my local hospital. As a precaution they prescribed me oral corticosteroids and a steroid inhaler to reduce the inflammation in my airways and thus reduce the risk of further attacks. My GP and neurologist felt that the oral steroids were over-kill, but that I should continue to use the steroid inhaler for the next few months, especially during the pollen season. During the following week I noticed that my asthma symptoms seemed to coincide with the return of the rash. When the rash disappeared completely, and the steroid inhaler started to work, my symptoms almost disappeared.
I did not suffer any more symptoms in my arms and legs than usual. I used my walking cane once when I was especially tired, but apart from that I felt remarkably well. The only area I noticed a difference was in my mouth. The tip of my tongue had been tingling slightly for about a year, but now I suffered more disturbance around my mouth, lips and tongue. Certain foods seem to trigger this more than others. I was not sure whether this was some kind of allergic reaction or whether my neurological symptoms just worsened after certain meals.
The check up was brief because I had been so well, and the usual blood tests were performed. They showed no underlying infections, nor any other worrying antibody activity. My neurologist agreed to refer me to the local allergy clinic to find out whether my oral symptoms were allergy related or neurological.
Second Check Up - 3 Months - July 2004
I did not suffer any infections during these months, which was a great relief. I was not particularly worried about infections either, which might have been complacent or it may have just been more realistic. My asthma settled down as the pollen season came to an end. On the down-side, my stomach started to complain again, with no obvious links to types or volumes of food. Oddly it complained at the same time after dose number two as it did after dose number one. Whether this was a result of Campath, stress or steroids, I doubt I'll ever know. All I did know was that by the end of July it had still not settled down. It could be controlled with anti-spasmodics and liberal quantities of peppermint tea, but that was tedious and often inconvenient. I considered taking a course of hypnotherapy to try and rule out stress as a cause of the discomfort.
It was not a particularly good few months. I suffered a big increase in MS activity, but it was mercifully short-lived and arose during the 'danger period' i.e. 2-3 months after Campath (or Lemtrada). During this period activity is much more likely due to the volume of inflammatory chemicals that Campath (or Lemtrada) triggers. One side of my face sagged slightly, giving me a permanent scowl, which did amuse my children at least. My tongue and lips buzzed and my ability to swallow (control and propel food with my tongue) deteriorated. I also suffered weak legs and much buzzing and tingling in my hands. My neurologist offered a course of steroids if the symptoms persisted or worsened. That proved unnecessary - from start to finish it only lasted a couple of weeks. I was concerned that the mouth and face symptoms were new and the cramping and stiffness in my legs were worse than normal. I was consoled by the fact that it did not appear to leave any permanent damage and arose at the most likely point after the second dose.
I had this a week earlier than expected, due to the increased activity. Nothing out of the ordinary showed up on my blood tests.
Two years later - September 2006
As you can see, I have not updated this site for more than two years. The reason for that was simple. I believed the site had served its purpose. The CAMMS223 trial was full, and no more patients needed help deciding whether to take Campath (or Lemtrada) or not. They simply did not have the option. I understand that some centres were still giving the drug on a compassionate basis, but the scare over ITP (Idiopathic Thrombocytopenic Purpura) and the unfortunate death of one trial participant from ITP probably stopped that as well.
There was another reason - I simply wanted to get on with my life. As anyone with MS knows, it's easy to become defined by your illness, and regularly updating this site would have served as a constant reminder of that illness. I also did not have much to write about. My MS has been very stable, but more of that in a moment.
Why then have I decided to update the site? I read that Genzyme have just published the interim results from the CAMMS223 trial, and are now seeking FDA approval to start the Phase III trial in early 2007. That means that potential Campath (or Lemtrada) users will be looking for information about the drug, and an out of date site is a worthless site.
My stomach problems still continue, albeit at a very much reduced level. I used some hypnosis CDs and found these helped immensely. However, I still cannot tolerate large quantities of gluten (wheat, barley etc), and have developed an unpleasant reaction to eggs. I was tested at Addenbrooke's for various allergies after I suffered an adverse reaction to pine nuts (burning mouth and gullet). It was discovered that I do have a mild allergy to eggs, although oddly no clinical reaction to pine nuts. The eggs are no great loss, as I have never particularly liked them. I have adapted to not eating gluten or eggs, and it only ever becomes a problem when travelling.
After the risk of ITP was discovered, I was asked to have monthly blood tests to check my platelet count. This is a small inconvenience and no problems have been discovered. I have also been regularly tested for Grave's disease and found to be clear. I understand that the trial organisers have found that the overall risk of developing the condition is not as high as initially thought.
My condition has been very stable. I feel stronger and fitter than I have for many years. I regularly walk long distances, and have completed two 50 mile sponsored walks in aid of the UK MS Society. I also still teach and train in aikido. That is not to say that I have escaped my MS entirely. I still suffer if I exercise too much, and my symptoms return if I become hot, stressed, tired or very hungry. I have suffered minor periods of extra activity during the last two years, but have not developed any new symptoms. I am unsure whether the extra activity constitutes a relapse, or is just the result of insufficient rest. I doubt I will escape the MS completely, but I believe the drug has given me more disease-free time and hopefully will continue to do so.
No date has been set for any further doses of Campath (or Lemtrada). At my last check-up in April, it was suggested that any further doses would be held in reserve should my condition worsen. As the trial organisers are still learning the most effective treatment schedule, the timing of any third dose may change.
One more year - November 2007
I'm afraid I don't have much to report. I'm glad to say I haven't developed ITP, Grave's disease or much else so far. I still don't eat gluten or eggs. I really should 'test' my gut and see if I can tolerate them, but eating something in the hope it won't make you feel ill isn't a good starting point.
In April I stopped having regular blood tests to check for ITP. This was in accordance with the trial protocol where the risk of ITP was assumed to extend up to three years after the last dose of Campath (or Lemtrada). I have obviously been told to look out for any unusual symptoms; bruising, bleeding gums etc.
I had a rough patch around February this year. My right eye wouldn't focus, and I suffered near constant headaches. My GP suggested it might possibly be optic neuritis. That didn't make me happy. Loss of sight is my worst fear, worse even than paralysis or sensory loss. Fortunately my optician came to the rescue. He discovered that sight in my eye could be corrected with a change in my glasses. He wasn't able to say why my vision had changed so much, but he believed it had something to do with my eye muscles changing shape. My neuro confirmed that the eye muscles are not usually affected by MS, and that my sight changes had nothing to do with optic neuritis. I was cheered by this, but then had to spend many annoying weeks trying to find a sight prescription that was comfortable.
I have suffered some resurgent MS symptoms in the last month or so. These followed a persistent and unpleasant cold. There were no new symptoms, just a re-run of the old favourites (mild depression, pins and needles, weak legs and fatigue). My neuro wasn't concerned when I saw him, as the level of activity was not sustained, and didn't seem involve any new neurological areas.
Time flies - May 2009
Things have remained much the same as before. My diet is still the same, and I haven't developed any of the known side-effects of the drug.
The only thing to report is an odd case of hives/urticaria (red, itchy skin) and angioedema (swollen lips). This started in October last year, and has continued ever since . I visited the local allergy clinic, but no allergens could be isolated that seemed to be causing the problem. They diagnosed a case of Chronic Idiopathic Urticaria and Angioedema. They suggested it could be autoimmune, and had a 'delayed pressure' element i.e. it often followed my aikido training, where strong grips are often applied to my arms and wrists. The idiopathic part of the diagnosis means ' of unknown cause'. The suggestion that it might be autoimmune is equally unconfirmed by any actual tests. Treatment involves daily 'non-sedating' antihistamines. That is no great hardship, but I'm slightly sceptical of the 'non-sedating' part of their description. Still, on the upside, I don't suffer from hayfever or mosquito bites anymore. I contacted my neuro about the condition, and he had not heard of any other Campath (or Lemtrada) patients suffering from this.
Absolutely nothing to report. No change and no major relapses. Pretty simple update eh? Simple, but quite striking.
My condition hasn't changed in a very long time. I still have the odd period of increased symptoms, but no new problems. It struck me how stable my condition was, when I recently gave a talk at the local hospital to newly diagnosed MS patients. I suddenly realised I had been diagnosed for 8 years, and could still do almost everything I could do back in 2001. Age has taken its toll, but the MS doesn't appear to have done so. I felt sad for the people who had to go through the scary diagnostic process and for the fact that they had to come to terms with an incurable condition, but it made me feel that their battle would probably be far less difficult than for many who had gone before them.
Two more years - August 2011
The strange case of urticaria and angioedema continued until the Autumn of 2009. At that point, it disappeared as quickly as it had appeared. No further explanation was given, but it was a relief to stop using the supposedly non-sedating antihistamines. Aside from that, I suffered a dose of swine flu in November 2009. Although not formally diagnosed as such, it ticked all the right (or wrong) boxes. My experience of the illness matched my wife's, and my slightly reduced number of lymphcytes did not seem to affect the course or severity of the condition. My diet is still the same i.e. gluten free. I keep still keep considering 'testing' my gut with large doses of gluten, but can't quite bring myself to do so.
Again, there is nothing to report. I am still as fit and mobile as I was two years ago. I still suffer from periods of increased activity, but I have no new symptoms. The largest period of activity predictably followed the dose of swine flu I mentioned above. I have always suffered from more symptoms a few weeks after a viral infection, but not to the extent that it could be classified as any form of relapse. I'm still able to continue my aikido training and teaching, much as before. Age is taking its toll, but I can't say that the MS is making the ageing process demonstrably worse.
There is nothing to report. I have not suffered any other strange illnesses. My diet remains the same, which is tiresome, but not the end of the world.
MSI've had a couple of spells of poorer health over the last couple of years i.e. more MS symptoms than usual, but these have always coincided with excessive exercise, too little sleep or some minor cold or illness. I've suffered nothing that even vaguely resembles a relapse. I'm still able to continue doing my aikido training and other fitness training. We've also acquired a small energetic dog, who likes long walks. I'm now walking 9-10 miles a week to keep her occupied, along with the regular bouts of frisbee playing she demands. The walking tires me, but then I suspect it would tire many other 'well' people of my age.
I was diagnosed with MS about 12 years ago, and had my first dose of Campath (or Lemtrada) more than 10 years ago. My MS means I suffer from some stiff back muscles, some annoying mood swings, tiredness and sensory disturbance, but I still feel I'm extremely lucky. I'm not as able as I was, but not all of that is MS related. I'm getting older as well.
I'm extremely grateful to the Campath team at Addenbrooke's in Cambridge. I wish them luck in obtaining approval for Campath/ Lemtrada here and in the USA later this year.
I'm now subject to annual neuro checkups, and will try to update this diary again in a year or so.
Thank you for reading this, and good luck in your fight with MS.
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© David Sturt 2003-2013