hello,
I was diagnosed yesterday so put a post about Campath in the newly diagnosed forum and just realised this might be a more appropriate forum? My neuro said the ms is highly active and wants me to consider Campath.
Has anyone here taken it and if so, good, bad, hints you could pass on? Any information would be very gratefully received!
Choochy
Hello,
Sorry to hear about your diagnosis but at least you have a ‘label’, and clarity.
I was diagnosed in November and Campath was mentioned a few times by my neuro, he is really excited by the statistics that have come out of the trials and wants me to be on it, when it s approved by NICE.
I have read about it and to me, if your MS is active, then it sounds fab. I am praying that i can go on it soon. I read your first post and thought how lucky ( not to have MS, obviously) that you have been offered this drug.
I am a newbie to this condtion and there will be lots more experienced people on here, that may have more points to add but personally, if I were you, I’d go for it.
I wish you well.
Clare
The 2 people I have spoken to who were given Campath seemed to have done very well. I guess we do not know the long term risks and the short term risks are not brilliant but then not treating MS has its downsides as well.
Most people find LDN stops disease progress but then again that does not work for everybody.
You could also consider CCSVI treatment if you can afford it.
Unfortunately there is not a right answer for everybody so the decisions about treatment are all difficult.
All the best what ever you decide to do.
Sorry to hear about your diagnosis. I don’t know much about Campath so can’t help you there bi=ut just wanted to point out that LDN does not stop disease progression as David603 says although some people do report that it helps with managing some symptoms.
CCSVI has been shown to be uesless and totally unproven as a medical condition according to the m ost recent studies and so is not a route most respected neuros would be reccommneding someone to go down
I do hope you get the treatment you need and that you are comfortable with.
All the best,
Belinda
Unfortunately, as this is an open forum anybody can post anything and, as I’m sure you are aware, not everything you read on the Internet is true.
Belinda has given you an excellent link regarding CCSVI, the MS Society’s own stance on LDN can be read at:
Sorry I can’t answer your question on Campath but I did want to clarify the situation with CCSVI and LDN.
Hi Choochy. Sorry this isn’t going to be helpful about Campath either! It’s just a heads up that, if past experience is anything to go by, David603’s comments might spark off a verbal battle which might get a bit heated - please don’t take it remotely personally - just ignore it! Kx
Sooooooo, I cannot let David603’s comment go without responding. The suggestion that you should consider LDN instead of Campath is utterly irresponsible, but I am not going to get into that again(!). However, as far as CCSVI goes, I guess David603 didn’t see this (http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/ucm303318.htm):
Date Issued: May 10, 2012
Audience: People with multiple sclerosis (MS), their families and caregivers; Neurologists; Interventionalists (Radiologists, Vascular Surgeons and Neurosurgeons); Clinical Researchers; other MS health care providers; and Institutional Review Boards (IRBs).
Medical Specialty: Neurology, Interventional Radiology, Vascular Surgery.
Purpose: The FDA is alerting people with MS to the risks of serious injuries and death associated with procedures to treat chronic cerebrospinal venous insufficiency (CCSVI). Furthermore, the benefits of these experimental procedures have not been proven, and their promotion as a treatment for MS may lead people with the disease to make treatment decisions without being aware of the serious risks involved.
This communication is also intended to notify physicians and clinical investigators planning or conducting clinical trials using medical devices to treat CCSVI that they must comply with FDA regulations for investigational devices.
Summary of Problem and Scope: MS is a progressive, immune-mediated disorder of the brain and spinal cord. In this disorder, the lining around nerve fibers, and often the nerve fibers themselves, in the brain and spinal cord are injured, resulting in significant and disabling neurological symptoms.
The underlying cause of MS is not known. Some researchers think that narrowing (stenosis) of specific veins in the neck and chest (internal jugular and azygos veins) may cause MS or may contribute to the progression of MS by impairing blood drainage from the brain and upper spinal cord. This narrowing of neck and chest veins has been called CCSVI.
Studies exploring a link between MS and CCSVI are inconclusive. Some studies have suggested a link exists, while others have found no such connection. At this time, the FDA believes there is no reliable evidence from controlled clinical trials that this procedure is effective in treating MS. In addition, the criteria used to diagnose CCSVI have not been adequately established. Therefore, data to support CCSVI as a clinical entity on its own or its relationship with MS are inconclusive and at times, contradictory.
Some individuals, organizations and websites promote an experimental treatment of CCSVI that uses balloon angioplasty devices or stents to widen the narrowed internal jugular or azygos veins. This procedure is sometimes called “liberation therapy” or the “liberation procedure”.
The FDA believes that using these medical devices in CCSVI treatment procedures poses a risk to patients because:
The FDA encourages research to evaluate the relationship between CCSVI and MS and to characterize the safety and effectiveness of treatment procedures. Rigorously conducted, properly targeted research can provide a more complete understanding of the existence of CCSVI and any relationship between CCSVI and MS, which will help people with the disease and their clinicians make the best treatment decisions.
Adverse Events: CCSVI procedures have been associated with serious, even fatal, complications. The FDA has received reports of one patient who died from bleeding in the brain and one patient who suffered permanent paralysis from a stroke after CCSVI treatment. Other serious complications of the CCSVI procedure reported primarily as individual incidents or case series in medical journals include: at least one death, stents migrating from their original location to another part of the body (including the heart), venous injury, blood clots forming in the jugular vein or in stents, blood clots in a vein in the brain, cranial nerve damage, and abdominal bleeding. The frequency of these serious complications is not known.
Getting back to the question originally posted about Campath I have had 3 sets of treatment with Campath and it seems have drastically reduced my disease activity. I went from having loads of relapses (despite being on Avonex) to only having one very minor one in the last 4 years since my first dose of Campath. I had Campath in 2007 and again in 2008. I had the minor relapse in 2010 and was offerred a treatment with Campath which I accepted. I have not had any more relapses since them. I have been closely monitored by a drug trial team and still have monthly blood tests. As ‘bickley’ has posted above there are risks, such as developing on overactive Thyroid which I have also had. I know which I preferred, loads of relapses or a little inconvenience of the thyroid treatment. Only you can decide what level of risk you are willing to take when considering treatment options. For me Campath has proved to be a very positive.
For those of you that have taken campath did it stop your progression?
Thank you all so much for the information!
After thinking long and hard and reading a lot of things, I signed up yesterday for Campath. Nervous but excited. I go in July, when my son is away with his dad, so at least I won’t have to worry about him.
Definitely worried about the risks, but weighing everything up, it would be great to stop this in its tracks as I am just getting worse. If I could stay as I am for 10 plus years, that would be brilliant.
Just one question I can’t seem to find the answer to. Some people are saying if the immune system is re-booted without the ms bits in the cells, can this be deemed a ‘cure’? Is the hope that I will be ‘stopped’ where I am right now? I know some people still have the symptoms they always had like tiredness and heat intolerance and that doesn’t go away. But to know that I won’t get worse for a while would be fantastic.
Choochyx
ps, Clare, thank you for your lovely post! The campath thing does seem to be somewhat random. I think my neuro only mentioned it as it was part-trialed here in Cardiff or something. I think, after reading about it, I would be annoyed and angry if i wasn’t offered it as it seems to hold so much promise. x
In answer to Bateman, I walk a bit slower and not quite as far as I did before I had my first dose of Campath in 2007. That’s about it it terms of progression. I am just one person though so I encourage you to look at the statistics that have come out from the trials. In answer to choochy, Campath kills off your lymphocytes which are thought to be the cells that cross over from your blood to your nerves and attack the myelin which leads to relapses. The theory is that as your body regenerates it’s lymphocytes they are ‘better behaved’ and don’t cause further damage (for quite a while anyway). There is a lot of science around this, but I don’t think of it as rebooting the immune system myself. I still have the issues I had before Campath, like numbness and bad balance. I have not had anything new. As I said above, I am just one person and others will have had different experiences. If you want to ask me anything now, or later, then feel free to send me a message on here. Good Luck with your treatment and I hope you have an as positive an outcome as I have had.
It all sounds very encouraging and thanks again everyone for the information. I haven’t yet heard of anyone saying it did absolutely nothing for them and the way I’m going at the moment, I would do pretty much anything to ‘stabilise’ at this point!
And it’s great to hear from people on the forum who have had the treatment - will almost definitely have questions between now and July.
Choochyx
lt does sound encouraging - if l were in your shoes l think l would choose Campath - l have SPMS - so l was never offered any dmd’s. But l did hear of a doctor -with ms - went from having to use a wheelchair to getting fit enough to return to work - after being treated with Campath - So l wish you all the best - lets us know how you are managing.
l have been taking LDN -for 3yrs now and l wished l had known about it years ago as l feel so much better on it and have not progressed - quite the opposite. Lots of folk on dmd’s do take ldn as well. lts not a cure - we know that - but it certainly helps you cope better with symptoms - makes you feel more positive - less fatigue and depression by boosting the endorphins.
Once again - all the best
F.
Apologise for my ignorance but can u be offered Campath on the Nhs? I have recently been diagnosed with RRMS and I have been offered a choice of treatments including Rebif, which will be my choice. No one has suggested Campath and I wasn’t sure if it was licensed yet? Kind regards x
Campath isn’t licenced for MS but it is for another condition (a type of cancer) so can be prescribed ‘off label’ if your doctor thinks you will benefit from it
Hi all,
The neuro compared my two mri scans, taken 8 months apart and said my ms was highly active and suggested I took Campath. I think I was offered it as our hospital/neurology department was involved in the orginal trials. I didn’t know anything about it until last friday, so it’s all new to me!
I have heard such great things and the more of us who get the chance to go on it and get good results then the more chance there is for it to be offered to everyone who meets the criteria? My dad died in the 70’s from complications due to his MS, way before there was any treatment whatsoever, so for me it really was a no-brainer, if it can keep me at the stage I am at the moment. I really do feel if he was offered it, he would have taken it too…
Thanks for all your lovely messages!
Choochyx
Thanks very much for your responses. As u know a diagnosis is a very difficult time, I feel I’m on arollercoaster, constantly moving forward up and down and I’ve left my family and friends behind - they still are dealing with it whilst I’m having to make decision about my treatment and find out more info. I love my job and am keen to stay working so Rebif seem to be the most effective out of the 5 - statistically. I shall have to ask my ms nurse about it as I’ve been reading up on Campath and it fills me with a sense of hope. Hope u all have a good day Bluebell x
It appears there is a new trial starting for Campath.
This looks really exciting! Thanks whammel x
Hi.
I had my second round of Campath infusions in February. I had been on Copaxone for about 3 years but my neurologist decided it wasn’t working for me and I was asked to think about an alternative. After much reading, I decided to go for Campath; It had great trial results and any potential side effects were treatable. So far, things are okay. I had one very minor relapse at the beginning of the year but I have completely recovered from it. My old symptoms still remain but I will be happy if Campath does its job and halts progression. Good luck!
Jo x