Last reply 8 months ago
Cladribine

Hello I wanted to comment on cladribine. I had my first infusion September of 2016. In March 2017 I starting noticing my foot not working correctly(footdrop). I ended up on prednisone in May with no major benefit. I ended up doing another round of cladribine in October 2017. It is now January 2018. I am still having issues and mostly feel worse then I did before my infusions. I’m sorry that I did them because now I can’t seem to get rid of this problem whereas before I’ve always been able to bounce back. I’m wondering if anybody has any information on their cladribine experience?

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stumbler
10 months ago

@jennyo , have your bloods been OK? And, what does your medical team say about this?


jennyo
10 months ago

I have not had my blood checked since the infusion and the docs think I should not feel worse at this point. From the mess. I’m trying to stay healthy and think positive as they said cladribine is not a quick fix.


jennyo
10 months ago

From the meds


stumbler
10 months ago

@jennyo , it didn’t take me long to find this information about the need for regular bloodwork whilst on Cladribine :-

“You will be checked regularly by your doctor while you are taking Cladribine, to monitor side effects and check your response to therapy. Periodic blood work to monitor your complete blood count (CBC) as well as the function of other organs (such as your kidneys and liver) will also be ordered by your doctor.”

The Doctors can’t really make comments about the efficacy of this treatment without this information.

This is only my opinion. I am NOT medical.


jennyo
10 months ago

Are you on cladribine now?


stumbler
10 months ago

@jennyo , I’m afraid not. There’s no present treatment for me – too old and knackered, obviously! lol 😉


jennyo
10 months ago

Oh no. I feel like there has to be something. What have you tried? Cladribine is one of those therapies that is used when all others have been exhausted. Unfortunately for myself it was always side effects that I could not tolerate. And my doc had great response with people he has put on cladribine. I have been on betaseron, avonex, copaxone, tysabri, Gilenya, and plegridy just to name a few. And I for 20 Years was mostly off then on because of the side effects. I would always stop it on my own. Are you better off meds? I research a lot and sometimes think it’s better to be off if you can practice self healing through, diet, moderate exercise, meditation and things like that. And sometimes prednisone lol. I’ve been readin a lot about healing your gut and gluten. I feel like as the meds just treat symptoms but not the root cause of the ms, which is what I have tried to figure out for 20 years. I’ve had bouts(flare ups) that have been very severe and always healed though an overloaded diet of nutrition and ridding completely of stress. Which is why I’m concerned about taking cladribine. It’s the first time that I am not able to feel better. Hoping the med is still working but I become concerned knowing I put something in my body thats toxic and messes with your immune system a bit in hopes that it reduces the overactive part of your immune system that’s causing flare ups. But I was physically better then now so gerrrrr. Sorry for the long vent. It’s nice to talk to someone who gets it. I’m new to shift.ms so still trying to get used to it. Thanks for lending an ear☺️


stumbler
10 months ago

@jennyo , I think I’m past the point of no return as far as MS is concerned. I don’t think even Ocrevus would do anything positive for me.

I had been on Betaferon some 10 years ago. But then I was considered Secondary Progressive (SPMS) and treatment stopped.

Your rant is understandable. We expect these powerful drugs to give us something positive. But, when everything seems negative, it’s difficult to move forward.

Have you considered physio for your footdrop? Alternatively, there is “the MS Gym”, available as a website and on Facebook, which has exercises, with videos, that might help.

Shift.MS is a community of like-minded people. It’s a very informal Forum, so if it feels right, then do it. There’s always advice and empathy available.


is0bel
10 months ago

Hi jennyo, sorry to hear about your footdrop, do speak to your ms nurse if you haven’t already, as she may be able to offer you some physio to help with it.
I’m interested to read what you say – i feel the same – we will never quite know if some new symptom is drug related or simply ms related. often they seem stress related though!
if only we had a twin!

i wonder if the side effects are worth the drug’s positive effects as almost all drugs only tackle the symptoms and never the cause. i’ve spent the last six years trying to decipher the spider’s web of my life/story and see any/some kind of pattern that might have lead to a blood-brain barrier damage and hence eventually ms.
i do feel the new round of thinking out there is much closer than ever – gut bio, it must be the start of things going off piste….?

do keep doing what you’re doing; keep supporting your own health however you can, it’s important to have some control over the process if nothing else! and you will be supporting the drug in some sort of positive way too. your body has less else to deal with. if that makes sense!?

i’ve tried all sorts too (alternative therapies) but only copaxone as a drug, all it seemed to do was remind me each day i had ms and give me a sore injection site! and as i my inflammation is in my spinal cord, my MRIs look no different over years! and then neurologists pat themselves on the back – copaxone worked then! well no actually, it made no difference!

do keep us up-to-date with how cladribine seems to effect you, it’s a drug i’m seriously considering after backing out of lemtrada. it does seem to be the best of a bunch for tackling awry immune systems so hold onto that. and i hear it doesn’y tough the T-regs which are the cells that tell the immune system to start fighting now, so that must be very good.

here’s wishing you all the best.


is0bel
10 months ago

that last bit;
….and i hear it doesn’y tough the T-regs which are the cells that tell the immune system to start fighting now, so that must be very good.
was all wrong… should read;

….and i hear it doesn’t affect/kill the T-regs which are the cells that tell the immune system to STOP fighting now, so that must be very good.

i.e – the cold has gone, everybody relax, but in ms it’s thought the immune system keeps battling.
as i understand it! happy to be corrected xx


emmad1988
10 months ago

Hi Jenny. Sorry to hear you have had such a tough time on Cladribine. I started Cladribine last August/September so am due to have my second dosage later on this year.
So far so good though. Have not had any new episodes and my latest MRI in December did not show any new disease activity. I have been lucky that i have not suffered with any illness other then a winter cold. So for me it’s been relatively plain sailing. The only downside is the 3 monthly blood checks….not ideal when you have a terrible fear of needles!
What hospital are you under? My consultant is The Royal London and was one of the lead researchers on this treatment so was really keen for me to choose this option.
Emma x


lisapops
9 months ago

I have set up auk cladribine group on facebook


jennyo
8 months ago

I wanted to send a big thank you to all whom have responded. I’ve been consumed with how I’m feeling so I’ve been a bit distracted. I did start going to the physical therapist. She thinks I have a bit of a back issue potentially causing the footdrop. I’ll have to say I’m not totally convinced that a pinched nerve is the cause. though on my MRI I do have an L4-L5 degenerated disc though it is not causing major stenosis. I do feel better though after going to the chiropractor who I periodically see. I’m staying hopeful that I will regain the strength in my leg. Thanks again for all the positive vibes!!


stumbler
8 months ago

@jennyo , there are physios and then there are Neuro-physios! You need to see the latter. 😉


jennyo
8 months ago

I am taking your advice!! For some reason I felt good in the beginning with the physical therapy but then I started noticing that after I would actually have a harder time with my leg. Strange. But I agree that I need someone that’s experienced with ms!! Thanks!!!!!!!


reds44
8 months ago

@jennyo the same story as yours after I did the Lemtrada infusion. Getting a AFO for my footdrop. My Dr. has said before no other med. until 5 years after Lemtrada but I would like to try Ocrevus I have no lesions.


edgarleroy
8 months ago

@jennyo You took cladribine as an infusion, not SC? What was the dosing protocol? I took a total of 90mg over the full year course, injecting 10mg doses SC on 9 separate days.


jennyo
8 months ago

I took cladribine as infusions for 5 days and then repeated dose in 1 month after. I am not certain of the dose I would have to dig out my records. Hmmm confusing. From what I seem to hear it has done an efficient job at keeping exacerbations at bay and possibly diminished disease progression. Last May after I noticed the issue with my foot I had a repeat mri since my last one done in 2015. Two old lesions had become less noticeable but I had a new high right frontoparietal lesion. So some diminished and yet I had a new one. So hard to know did it help or hinder. If I wasn’t on cladribine maybe the flare would have been catastrophic but at the same rate why did I have a flare up in the first place since it is supposed to help you from flaring? Grrrrr.


stumbler
8 months ago

@jennyo , that new lesion could have appeared at any time since your lat MRI in 2015, so may have pre-dated the Cladribine.

So, reasons to be cheerful? 😉


jennyo
8 months ago

Yes that’s what I think too. Crazy could all be coincidental as far as timing goes. I was stressing a lot around the time that I ended up with the foot issue and it was around 7 months after my infusion. So I guess it’s just easier to blame the med. lol

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