Mitoxantrone/ Nevotrone Helpuidance please....

Everyday living
1

Hello,

This is my first time posting, so forgive me if i sound like a novice on this…

My mum has had MS since the age of 21, she is now 49. She has the odd relapse over the years and terrible vision, but thats it. From June last year till the very day, my beautiful mother now can no longer walk properly, gets very tired and in my eyes a different person.

She has been offered to take to ‘Mitoxantrone’ which is a chemo drug and needs to be given via an IV every 3 months for 2 years.

What I would love to know, is if anyone has tried the drug? How they got on with it? Did it impact your day-to-day life whilst on the medication and thereafter? My mum works, and she doesn’t want to stop working, nor does she want to end up in a wheel chair.

Its my mum’s 50th in July and I’m fearful this drug will do more harm than good… I’m looking to learn as much as I can, beside all the facts the MS websites can give you.

Appreciate your help everyone!

Love to all MS sufferers and those who care and aid for them!

Carla x

2

This is probably one of the best summary’s around.

http://www.mstrust.org.uk/information/publications/factsheets/mitoxantrone.jsp

In short it seems it will help some people but has significant risk such that they will only give it for two years so then what?

There are safer alternatives you could consider.

LDN

http://www.ldnnow.co.uk/

http://www.ldnresearchtrust.org/

http://www.ncbi.nlm.nih.gov/pubmed/15694688

Diet etc.

http://articles.mercola.com/sites/articles/archive/2011/12/23/overcoming-multiple-sclerosis-through-diet.aspx

http://www.facebook.com/pages/The-Wahls-Foundation/150956531629073

CCSVI

http://www.facebook.com/ms.ccsvi.uk

None of these are approved by the official system but then neither is mitroxantone really. Our PCT will not fund it but neither will they fund any of the others above. Even the licenced drugs are not funded for many.

3

What a lovely caring daughter you are - l too have a daughter who is now nearly 30. My ms started when l was pregnant with her - so sadly she has never known me ‘pre-ms’.

My MS is Secondary Progressive - so l have never been offered any meds - only drugs licensed for Parkinsons/Bi- polar/ epilepsy and even HIV - Most meds l have been prescribed in the past have caused me dreadful side-effects and made me feel worse - also they need regular blood tests to monitor them in case of damage to liver function. So l can understand your mum might feel reluctant to take them.

l think the best thing you and your mum can do is take vitamin d3 - just google vitamin d3 deficiency - and also vitamin b12 deficiency ms. As your mum has ms - it is very important they you - her daughter also take vitd3 to help safeguard yourself.

There is a nhs lab in B/ham that do postal testing kits for vit d3 so you can check your levels - they should be between 150/225 nmol.

l do take LDN - and have done for a few years now. l have felt the benefit of this - more energy - more of a positive outlook. And l certainlly have not ‘progressed’ since l started taking it. l have to buy this privately - but it is not expensive.

l also use Sativex - which l get prescribed from my GP. This helps with spasticity/muscle pain.

Best wishes to you and your mum - and l hope she will soon start feeling a lot better.

Fx

4

Hiya Carla

I have RRMS and due to very frequent relapses, was offered Mitoxantrone, Tysabri or Campath. I opted for the Mitox as (for me) the side effects were not as bad.

The treatment itself was fine. I have worse side effects from steroids. You get blu/green wee straight after it and I was tired for a few days. It can cause some feelings of sickness but they give you anti sickness tablets to help with that, again I feel far more queezy after steroids than I did with that. You need to be careful about catching things as your immune system is lowered, so just don’t be around people with colds or sickness. I lost some hair, but nothing that anyone other than me and my hair dresser would notice (it probably thinned by about a third overall).

1/2 way through the course I had, I started Copaxone (due to RRMS), which I’m still on now.

Overall I’m glad I had it as it seemed to stop the progression, although I still struggle with bad days and flareups and it didn’t fix the damage already done. I know the fact that it’s chemo sounds scary but it’s no where near as bad as you imagine.

If you have any more specific questions, feel free to pm me.

Sue

x

5

Hi Carla,

You are a terrific daughter. Now firstly, IGNORE everything written above by David. Everything he has written and the links he has supplied are sheer scare mongering and factually garbage.

Although I haven’t been on Mitox I was treated with another form of chemo which is not on the market for MS but was felt worth giving a go in my case. Like Mitox it can only be given for 2 years in a lifetime. Both Mitox and the drug I was on work by killing off leukocytes which means less of the inflammatory impact is able to get through the Blood Brain Barrier causing the inflammation which can cause the lesions.

Mitox can only be given for 2 years as it can cause cardiac probems in a few peole if more than that is given. Like wise the one I was on is limited to a 2 year course as well because of a small risk of an increase in getting cancer (which is pretty ironic for a chemo drug)

Before having my chemo I was having relapses every month and in hospital 5 or 6 times a year for the 2 years before starting treatment. The chemo basically stopped everything in its tracks. BANG! And I have had improvement in some areas as well.

A really good friend of mine has had Mitox and she was early SPMS. She swears by it and for her it halted all progression completely and that was five years ago.

Because it is a chemo drug it will lower your mum’s imunity so she will need to take care to avoid infectious people, particularly chicken pox, but not to the point of being paranoid about it. And because it such a potent drug she will very, very carefully moitored trough out her treatment. Bity if a bonus really as you get excellent health care because of being on these drugs and better follow up of your MS than if your weren’t being treated with chemo :slight_smile:

I would heartily recommend she and you explore this option fully. Read, read and read. Talk to your neuro as many times as you need to before going ahead but do be reassured that it is extremely effective and really not at all a difficult or unpleasant treatment regime to be on.

Also talk to your mum’s neuro about her eligibility for follow up treatment with Copaxone as that has been found to be very beneficial in maintaining remission after Mitox.

http://www.mstrust.org.uk/information/publications/factsheets/mitoxantrone.jsp

All the best

B

6

Hi Carla,

For another week, I’m the same age as your mum !

In 2007 I had three pulses of mitox over 4 months combined with a daily injection of copaxone (which I was on prior to the mitox and continued afterwards).

I had excellent results at the time, my MS (then) was in a highly active phase and I was relapsing constantly. The mitox / copaxone mix stopped the relapses almost immediately and I was able to resume a kind of normality (out of my wheelchair and ultimately just needed a stick).

The treatment itself was fine – you give in a pee sample on the day to make sure you don’t have an infection (you are not allowed to have the treatment if an infection is detected and will be sent home with a course of antibiotics), the mitox is a beautiful blue colour (bit like a plastic bag full of blue bols ) and turns your first couple of pees following the infusion a green colour. Apparently some people also get blue stripes on their nails for a few hours after treatment – as an LFC supporter that would have been devastating but thankfully I didn’t experience that!!!

The anti emetic is in the drip with the mitox to stop you experiencing nausea and you are discharged with a couple of days supply of an anti emetic, your mum’s GP will prescribe more anti emetics if she needs then but it’s usually over in 3 days.

After the IV mitox is completed, your mum will be given a given a saline drip to flush through her system.

My hair thinned during the period I was having treatment but not so anyone would notice except for me – I’ve done worse damage to it with dyeing and bleaching over the years!!!

If your mum does decide to go ahead with it, it may be an idea for her to check her vaccination status prior to starting treatment as immediately after she will be more susceptible to infection, certainly make sure she’s had her flu jab and possibly pneumovax.

She’ll need to steer clear of people with obvious infections for a week or so after treatment (although I came straight back to work after a couple of days in a care home!). I had my treatments on the Thursday, felt too sick for work on the Friday but was fine by Monday)

This may be your mum’s chance to reset her immune system – I would certainly encourage anyone to give it a try.

There will be people on here who will warn you against ‘evil Disease Modifying Drugs’ and exaggerate the risks of taking them.

There are of course risks with any treatment and whilst your mum can supplement her diet with vitamin D and I think (you need to check) even LDN can be taken with mitox, the biggest risk is chancing that her MS won’t progress and not taking positive action toward halting the disease whilst the door is still open.

Good luck, whatever your mum decides.

7

Hi Carla and welcome to the site :slight_smile:

I read your post and the first couple of replies earlier today and became so angry that I didn’t trust myself to reply until now. I’m not going to get into an argument with the originators of some of the earlier and, in my opinion, outrageous(!) suggestions that you received because you do not deserve your post to be hijacked and taken away from replies that might help you and your mum. So…

Your post really struck me because my daughter could have written almost the same opening a couple of years ago: I had pretty mild MS for many years until a nasty relapse in 2010 which left me walking badly and getting horribly tired, along with other symptoms. My daughter really struggled to accept the new me: she couldn’t even look at me the first time I used my wheelchair when she was with me. It wasn’t that she was embarrassed or ashamed or anything; it was the fact that her mum, the person who used to be so fit and active, was so changed - it wasn’t fair! By looking at me in the chair, she was accepting that it was happening and she couldn’t bring herself to do it. Of course, she got over it and is fine with my stick and my chair these days (I use my chair for longer distances, e.g. mum & daughter shopping trips!). Because I haven’t really changed - my body has, but I haven’t. It takes a while for we MSers to accept these changes too though - and during that transition we can be moody, irritable, depressed, etc. That doesn’t usually last thankfully - having MS means having to get used to change; having to adapt. So if your mum seems different to you, but it’s more than physical, it might be that she hasn’t quite worked through accepting her new norm. (Counselling can help a lot with this btw.)

As far as mitox goes, my neuro didn’t offer me mitox at the time and it never occurred to me to ask, but looking back and knowing that if I’d done something then, I might not be as bad now (I went on to have more relapses), I would have been very interested and may well have opted for it. Why “may”? Because I don’t know much about it! And I certainly didn’t then.

Since then, I have learned a lot about MS. I have also made a lot of MS friends. A few of them have had mitox. One has seen a complete stop of all MS activity. One has seen a lot of improvement and has less active MS now. One has had all relapses stop, but is unfortunately still progressing. So, all had significant benefits and none had any side effects worth bothering about. Seems pretty good! Of course, that’s just three people. So I would want to know all the info - what are the potential upsides, what are the potential risks, what are the data (% reduction in relapses, % reduction in progression, etc), what happens afterwards (Copaxone? another disease modifying drug (DMD)?), what happens further into the future - would having mitox mean that I couldn’t access new treatments? I would also want to know the alternatives (and I am not talking about LDN, diet, CCSVI or vitamin D!), e.g. would Gilenya or Tysabri be options? What about Campath? etc…

As soon as my relapse in 2010 started, my neuro took me off Copaxone with a view to putting me on either Tysabri or one of the new oral DMDs that were about to be approved. Unfortunately, I wasn’t eligible for Tysabri because of my MRI scan and the oral DMD approvals kept being put back. In the end, I was off meds for 15 months and it was only that short(!) because I created a lot of fuss to get put onto Rebif44 rather than keep waiting for the oral DMDs. At the beginning of those 15 months, I was a very serious martial artist and superfit. By the end, I was as I am now - using a stick and a chair and on 10 times as many pills. Thankfully Rebif has stabilised my MS and I’ve stopped relapsing. But maybe, just maybe, having mitox early into those 15 months would have meant that the wheelchair never happened?

It’s not an easy decision and I think you are wonderful for being so caring and involved in it all. I hope you can work out what’s the best option and that, whatever you decide, it works brilliantly.

Karen x

8

Hi there, I was pretty much bullied into mitoxantrone, went onto it for three months until I worked things out. Thankfully before having to go daily injections of copaxon.

Heres a brief account of what happened and what ive found out.

Had very bad ear infections. i felt off balance for a while, got drunk one night – left leg didn’t want to walk properly. Went home, everything fine in morning . mention this to step dad – he said it sounded like a mini stroke, so popped to doctors, developed very mild numbness of left arm, doc sent me for further tests at hospital. I was wondering what this numbness meant- asked nero after tests, he said he knew exactly what it was, then said he was going to give me steroids- then walked off, left there feeling a little puzzled. They started me on iv steroids, after 3 bags of steroids i had very bad reaction – resulting in complete muscle lost down left hand side of body. Told a consultant about reaction to steroids- he said if your sure about the reaction with steroids don’t allow them to put anything inside of you. Finally got sent home, back to see the neuro - he said I had a case of sclerosis. Might not happen every again.

I thought that’s good then, made perfect recovery in a few weeks. Unfortunately my sis went reading all about ms all the negative stuff. She came to the conclusion that taking vitamin tablets would be good. She was very wrong. Every time I took a multie vitamin – landed me back in hospital, given more vitamin tablets at hospital, which knocked my eyesight out, then given even more steroids, transferred to different hospital, where they started to push very hard, into me taking mitoxantrone.

Ditched all doctors when I found out from other people that vitamin tablets are very bad for ms. Been fine for last 6 years now, no medication, just exercise and diet.

Don’t take mitoxantrone, its only allowed to be given when your coming out of relapse, doesn’t make sense to me – as you would probably be fine anyhow. hope this works 1st post. everyone take care.