Cladribine ... anxious

Everyday living
1

Hi,

I believe I have spms, as I don’t experience relapses, it’s just more of a gradual decline. I was diagnosed 6 years ago with MS, and I have never taken any DMDs, instead, I have focused on diet since my diagnosis.

Anywho, my neurologist will only recommend trying cladribine at this point. My problem is that I am a very anxious person. I worry about side effects greatly.

I have read about possible side effects online, so I do realize they exist, but any thoughts on cladribine from other users?

Cheers,

2

hi

google tells me that cladribine is a chemotherapy drug.

i know that some DMDs are chemo too but can’t work out why your neuro recommends it for you.

maybe it is one of the DMDs that are now being offered to progressive msers.

please please get to grips with anxiety.

anxiety and its brother stress are our enemies!

try mindfulness meditation, it has marvellous results.

if it is a DMD then be happy!

it is good to fight back.

(in my head my DMD makes the sounds that cato made in the pink panther - yes i’m slightly potty)

take care

carole x

3

Hi

I thought Cladribine was for relapsing remitting MS or for people with SP but still having relapses.

As far as I understand it, the idea is that it works on lymphocytes, targeting the bad bits of the immune system that attack the myelin in relapses.

But some people who’ve had it will know more about it.

Meanwhile, try to do some more research into the drug and that might ease your anxiety. Either you’ll decide it’s a drug you can cope with, or that it’s not. One way or the other, as Carole said, try not to get stressed about it. Stress and MS really don’t go well together.

Sue

4

Cladribine isn’t licenced at all for MS except Australia and Russia, I think, it was tried for relapsing remitting MS. When drug regulators in the US (FDA) and EU (EMA) looked at trial results they were perturbed because the there was more cancer in a in those treated with Cladribine than those on placebo. But the number of cases of cancer in the cladribine treated were typical the general population and there were weirdly none in the placebo treated. This has been bourne out by subsequent analysis.

Cladribine - The Scary MS Drug? Cladribine - The Scary MS Drug? - YouTube

Cladribine Mode of Action Cladribine Mode of Action - YouTube

An advantage given for treating SPMS is that it can get into the brain.

I’ve seen mention of increased infections with Cladribine (Multiple Sclerosis Research: OffLabel: cladribine) but that preventative drugs can be used. What side effects have you read of what were the sources?

Good luck!

5

Putting a link to an informative thread by a regular member here…

6

Thank you for your replies. I will investigate the drug a bit more … but follow that up with some meditation to ease my stress.

The side effects I read were from drug.com “Commonly reported side effects of cladribine include: infection, anuria, severe neutropenia, neurotoxicity, neutropenia, thrombocytopenia, fever, acidosis, renal insufficiency, and increased serum creatinine. Other side effects include: pruritus”

Thanks again everyone!

7

ah bless those pharmaceutical companies for putting such reassurance on the info leaflets.

i hope the meditation helps you as much as it helps me.

carole x