Hope this reaches the forum. I’m so not a social creature,but it sure feels good to know that I am not alone through all this s****! Anyway, I received the news that I have RR MS five weeks ago after I woke up thinking I had suffered a stroke. I was actually due to run a Half Marathon three days after it happened (I was a very fit, endurance athlete before this) and am now scheduled to go into hospital for this treatment on Sept 9. Because of my MRI scan and presentation, apparently, according to the Consultant, we need to “hit it hard”. I’ve just been reading George Jelinek’s ‘Overcoming MS’ and am now feeling very nervous about having this treatment. I know that I don’t have an awful lot of choices, but it would be great to hear from those of you that are having the same treatment. I’m under no illusions that it’s probably going to hit me like hell, but…x
Hi, there are a lot of helpful and supportive people on here. So you are in good company.
I’ve just had a review by neuro consultant and have started the process to start beta-interferon. I was glad that my symptoms are being takens eriously so quite happy. Though I would have much preferred that no drugs were needed and on the other hand learning that Alemtuzumab has been given the green light by the European Medicines Agency I can’t help but wonder if I’d be better off on Alemtuzumab as it is on average twice as effective as beta-interferon. I guess it’s a case of weighing up the risk of taking it as opposed to not pre enting MS as effecively. With Alemtuzumab there are possible severe side effects but they are treatable. Pretty much as if they hadn’t happened , as long as you are being monitored.
Jon.
Thanks so much for your reply, Jon. Appreciate your comments. I absolutely agree- I would rather not have had to take any drugs, as I’m a little bit anal when it comes to diet and health (my body is a temple!), but I think it’s because of the impact this treatment could have on my family, if the results are not good. That said, the treatment is available, so I should just roll with it, I guess. Anyway, good luck with your treatment. I will report back to the forum, mid September- God willing!
Thanks and good luck to you too.
Hi
I haven’t had Campath but I have met and chatted to 2 people that have.
The first is a man who has been in remission for 5 years and seems to have had very good health since the treatment. He is quite confident that he will remain healthy forever.
The second is a woman who has been in remission for 7 years. She has had some side effects such as thyroid problems and picking up viruses etc but says these are much easier to control than MS relapses.
Hope this helps
Tracey x
Thanks so much for your reply, Tracey! That’s all really positive. I went on Youtube this afternoon and watched a video of this chap in Ireland who actually diaried his treatment whilst in hospital. Again, he was really happy with his immediate health, how he felt after each treatment and his prognosis. There’s no going back on my decision now- I’m confident that I’ve made the right choice for me. All the information I have been given has definitely sold it to me. Anyway, que sera sera, as they say!! Thanks again x
What is Campath please? Ta Xx
RE Rahma
K I know what is Campath TA
Alemtuzumab (brand name Campath aka. Lemtrada) is a very potent chemotherapy treatment for active, very aggressive RR MS.
Good luck Tracyann, I am trying Gilenya next but if that doesn’t work and Campath is still open to me I will probably try that next. My neuro says it stops MS in its tracks so I think you have made the right decision too.
Tracey x
Hi Elmo! To be honest, I would rather not have to, but my RR MS is quite aggressive and my latest MRI doesn’t look too pretty either. I have been very anal about my diet too be honest. Thought I was eating healthily, but I was actually omitting some very important minerals. With the wrong genes to begin with, MS was hot on my trail. I’ve learnt a tough lesson! I am now very, very careful that my diet includes everything my body needs. Personally, as the date gets ever closer (Sept 9th), I am $%***ing myself. If I am still alive at the end of the treatment, I want to continue to manage my MS naturally. Please, read, Minding My Mitochondria by Terry Wahls. This lady is a Scientist too and I am very impressed with her diet. It certainly worked for her. You can check her out on youtube. I just want to spread how important diet is with MS. Keep in touch Elmo and all the best with your treatment too!
Alemtuzumab is a monoclonal antibody, not really a chemotherapy. It is used for leukemia (cancer) so I called it a chemotherapy once and was corrected. Monoclonal antibodies are more targeted and not quite as worrying as chemotherapies but are very powerful and Alemtuzumab is worrying it resets the immune system.
As well as the usual DMD side effects, side effects also include autoimmune thyroid problems in around 16% of people, and immune thrombocytopenia (ITP - an autoimmune condition associated with a lowered platelet count) in around 1%. (mssociety, Treatments in the pipeline))
These are treatable and I personally feel preferable to active MS. There was a death caused by ITP because it wasn’t detected early enough (blood doesn’t clot). That was on one of the first small trials that DMDs go through to check safety. Now recipients are monitored closely.
From what I’ve found out I’m jealous of those on it. It isn’t available on the NHS yet is it?
It is available if you can get on a trial at one of the research hospitals.
Tracey
Saw this post and thought I’d comment. My neurologist is referring me for the trial so fingers crossed I’m successful in getting through for it as heard that the treatment is amazing!
i’m jealous!!!
good luck and prepare yourself for getting a normal body again
carole x
Thanks Carole x
Hello All,
I hope this message reaches you all and reaches you in good health. My wife has recently been diagnosed with MS. One of her treatment options is Alemtuzumab. We are not sure if we should pick this treatment as it sounds quite drastic (i.e. the side effects it can cause) I mean my wife is perfectly healthy and very able so I’m surprised shes even been diagnosed with this in the first place. I’m trying to weigh the cons and pros and if this treatment is worth the risk as im looking at a perfectly healthy woman why would i want to add the risk?
In short my question is how are you guys doing 5 years on? Would you recommend etc??
Many Thanks in advance
Hi
Alemtuzumab, aka Campath, is today known as Lemtrada.
Many people have now taken the drug and have in the main reported positively. In particular, on this site look out for posts by Katy79. She’s written quite a lot on her experience. I’m sure she’d answer you if she sees the post, but she also works so may not see it. (She’s fit and well so clearly the drug is doing a good job for her!)
It’s licensed for people with Active or Very Active MS. And the neurologists can tell whether a person has what is likely to be active from the number and locations of the lesions seen on the MRI scan. Often, people can have their MS labelled as Active, even when they’ve had very few relapses or symptoms.
Lemtrada is one of the two most effective disease modifying drugs currently available. It averages 70% less relapses (when compared to a placebo in clinical trials), but does come with the possibility of side effects.
If you look at MS Decisions aid | MS Trust all the DMDs currently available for relapsing remitting MS are listed for comparison. If you and your wife decide on a less risky drug, you’ll find the options there. Talk to your neurologist and/or MS nurse about the drug choices.
Personally, I remember first hearing about Campath (as it was then called) in about 2003 and I’d have taken it like a shot then. And at that point I was only mildly affected by MS. Today I’m not a candidate for a number of reasons. But in my opinion, it’s an excellent drug.
You, and your wife of course, need to be aware of the risks involved in such a drug as well as the benefits. But to be virtually relapse free would be a great thing for the future.
There are a lot of Lemtrada users active on the https://shift.ms/ forum. Have a look on there for peoples personal experience of the drug.
Sue
Hello Pollos! (and hello lovely Ssssue!)
I’m just over 1 year post Round 2 of Lemtrada. I was diagnosed in 2016 and received Lemtrada as my first treatment (Aug 16 and Aug 17). So far so good.
For me, the potential benefits of the treatment out weighed the side effects. I decided I was more scared of my MS than thyroid problems etc.
My initial symptoms were very mild (numb toes and groin for a few weeks - not painful or in any way disabling) - and Im grateful to say that to date they have been my only symptoms.
My apologies for not writing a longer post now - I’m rushing to leave work to make a gym class at 6.30pm - but wanted to pop in a quick post to say I’m very happy to talk through my experience and decision making process if you have any questions.
As Sssue says, I’ve written a few posts on here about my experience with lemtrada (and coping with diagnosis) so it may be worth a search under my user name. Alternatively, there is a facebook group (lemtrada (Alemtuzumab/Campath) UK & Ireland) which is a helpful place to get a wider range of anecdotal experience (including the approach taken at different treatment centres). It is a closed group so you need to ask to join and explain your interest and one of the admin will let you in. I’m Katherine Goulder on there if you want to find me!
TTFN
K