I saw my MS Nurse yesterday, and asked the Cladribine question:
“We cannot prescribe it. We are not a teaching hospital who can do so as part of an formal trial.”
So, I cannot have any.
They are obviously not willing to prescribe “off-ticket”, but then that would require some co-operation from Oncology as well.
My problem now is that the only hospital I could move to is also not a teaching hospital.
The only person who can tell me if they would prescribe it, is the Neurology nurse who visits my wife, and that is a few weeks away yet.
A move to London is out of the question.
Can you get to Barts for the prescription and treatment? Ore. treatment since it’s subcutaneous injection could you do it yourself? Any way it’s a pulsed treatment not maintenance.
Here is a bit of a sad update, I’m afraid. The good news first: my bladder control has improved to the point where I’m not wearing any pads. This is the first time for years that I’ve been able to do this. I’m going hours and hours between trips to the loo and not having to get there urgently when I do need to go - which is a good thing as you’ll see below.
I was at my worst (ever) last week. This week, I can generally walk upstairs at night for about six or seven steps without using my hands to lift my legs. Last week I couldn’t do a single stair without using my hands. I am generally a bit better in the evening.
However, my walking on the flat in the day is now terrible - worse than it has ever been (apart from when it was very hot). I’m struggling with picking both feet up, but finding it particularly hard to lift my right foot off the ground. I can no longer walk downstairs facing forwards, I have to go down backwards.
My leg twitching at night is worse. I have gone up from 1 to 1.75 clonazepam tablets and this is only just keeping it under control.
I think my hands are a bit weaker too - I feel as if I’m struggling more with cutting up my food, but I’m not certain.
I promised to give an update and now I have. I shall do the same in another few months. It would be nice if I have something better to report but I’m not optimistic.
Sorry to have been so gungho and for it to have turned out badly.
Oh poor you. You shouldn’t be saying sorry for having been so positive about it. You were excited and thought it could be a cure. And we were all wishing it would be as good as it could be for you.
I’m glad your bladder control is better, but what a terrible time you’re having with walking and stairs. And hands too.
I feel so bad for you, initially I was quite envious of you for being able to go on it (you know this) but now, I feel so awful for you, I don’t quite know what to say.
I so hope that things do improve for you, have the doctors said that there is improvement expected? Does the drug have a negative effect initially that becomes positive over time? Is your experience as expected or unusual?
Meanwhile, stay safe, don’t push yourself too hard or beat yourself up about the disappointing results. Remember, we’re here for you if you just need to vent your frustration or complain about how crap you feel.
The impression I have is that people who go on Cladribine see benefits straight away. It’s out of your system very soon after you have it , hopefully having changed your lymphocytes so they no longer attack your myelin. That’s why the I’m pessimistic about it starting to work later on. But we’ll see. It’s been very depressing sitting down and thinking about how hard I’m finding things at the moment, when I was so hopeful that life would be easier.
I started cladribine back in July. This week I started on my second dose over 3 days. I feel very little difference but I was under the impression that any change would not be instant. The difference I suppose for me is that I was diagnosed last year with SPMS and there is nothing else I can be prescribed. From reading your post I obviously don’t have as bad a symptoms as you. I do find though that trying to be positive, no matter how I feel deep down, is the only way. I know it’s hard when you’re feeling depressed…
I’m OK again now, to be honest. Carrying on, getting on with my life. Next time I see the relevant doctor I shall ask him what to expect (probably should have done that at the beginning). Good news is that my second child got their GCSE results today and got exactly the same point average as my first child. Can’t get a better outcome than that.
Just thought I ought to give you the latest update on my Cladribine experience. It has been all negative for me. I have deteriorated a great deal since I had it.
My walking is much worse - I can no longer walk with two sticks. At my best, I use a rollator, at my worst a wheelchair. I don’t have any days when I don’t need the wheelchair. Before the Cladribine, I used sticks in the house and the rollator if I needed to carry something.
I now need 3 clonazepam tablets to control my leg twitching at night (1.5mg). I have gradually had to increase this from one tablet, which I had been taking for years.
My bladder control is less reliable.
I am falling frequently.
I had a few weeks when I had a return of Trigeminal Neuralgia, which I had really badly last year. It was quite mild compared to last time but seemed to me to confirm I am seeing inflamatory activity, rather than nerve death.
It takes me something like an hour to get dressed in the morning and only slightly less time to get undressed in the evening. In fact everything takes much longer. That’s why I don’t come on here any more - I don’t have enough time to live my life as I want to any more.
I am trying to get back on Gilenya, in the hopes of slowing the deterioration I am seeing. I feel trying Cladribine was probably one of the biggest mistakes I have ever made.
Thank you Alison, I’m hoping that this is mostly inflammatory activity, and I might get better again. I’m fearing it is nerve damage/death and this is the new me. Only time will tell.
I’m very sorry to hear how difficult life has become for you post Cladribine Sewingchick. I do hope your current situation improves over time. Alison’s right, damn MS.
I’m going old school and have been doing mimic fasting - I need to blog about it as I stopped it to take part in a trial and I’m delighted to say, that I kept the weight off even a couple of months of normality. I’ve already re-started it this week, actual fasting does make the brain grow new neural pathways. Naturally the thing I most want to improve most is unchanged but the couple of positive changes are good.
Hi sewing chick I am so sorry that cladribine did not work for you, I have been following your messages since may. I had my treatment at royal London Hospital on 18/1/.20 of October had my blood tested on the 14 November this came back with Lymphocytes of 0.48 which meant that I did not have any more treatment I have not seen any improvement so far not sure if this will change I am still taking the anti viral tablets may try to contact the hospital to see if they have any more information, I am tying to be positive at the moment would like to know if there hve been any more good experiences of cladribine. wish you well and have better luck in the future.
Hi sewing chick, I am really sorry to see this. We all have to try things otherwise we will always wonder if it could have helped. I went to Mexico for HSCT in September. Early days so far but my bladder is better and I only need up once during the night now. People are saying my walking looks better and I only though they were being kind as they knew I had been for treatment. But just recently people who I just know from passing while walking the dog (ie they dont know I have been away) are also saying it.
I chose Mexico because it is less intense that other protocols with less risks. I posted on this sight that I had gone but got very little interest so decided not to add any more information.
If you have inflammation on your Mri then you might be able to get it on the NHS. If you were interested the neuro you need to see is Dr Richard Nicolas at Charing Cross Hospital. Several hospitals in London are now doing it.
Just wanted to update this. I begged my neurologist to let me go back on Gilenya - I’d come off to try Cladribine. My neurologist made me have some specialist blood tests, which showed that my levels of CD3, CD4 and CD20 blood cells were all in the normal range, 6 months after the Cladribine. I started back on Gilenya a week ago.
Amazingly, I have already seen some real improvements, particularly in my walking. For the last few days, I have not needed to use a wheelchair in the house any time in the day. I had been needing it, sometimes straight after breakfast for the last couple of months. I’m using a walking frame now, but have faint hopes that I might get back to being able to walk with two sticks. Even if I don’t, life is easier for me with the frame than the chair and I’ll stick with Gilenya now if I can.
Thanks to Moyna for your post, but I already know I would not be eligible for HSCT on the NHS, because I read the guidelines, web address posted by whammel on here.
Hi Sewingchick, I am sooooo happy that you’re seeing improvements, long may they continue!!! Sounds like Gilenya works for you so, I am so pleased that your neuro listened to you even though you had to beg. Have a very happy Christmas & a healthy happy 2017!!! Love Helly.