Cladribine for MS

[Sanoosh]

I have started Cladribine injection recently. I have change from Ocrelizumab.I would like to know the positive effect of cladribine on my mobility.

[twooldcrows]

sorry don't know anything about it...good luck hope it works for you ...

[BettysMom]

I am suspicious that you are a troll. Why? Because you just joined this site today and you you are making a false statement and asking an ignorant question. In particular, cladribine is not a treatment given by injections. It is an oral treatment that is administered in a very unique regimen over 2 years. Furthermore, MS DMTs are given to slow disease progression, not to treat mobility issues. Please leave this community and do not come back.

[Sanoosh in reply to BettysMom]

You cannot talk me in this way. I have MS and tell the truth.

You do not have enough information about cladribine. It has injrction as well.

I had injection at hospital yesterday and it is three-day injection.

It is better you leave this community.

[dianekjs in reply to BettysMom]

Wow, your comment is not in the spirit of this community, is completely inaccurate, and I suggest you remove it asap. Cladribine has different drug delivery methods and uses, as do many of the meds used for MS. It can be given as an injection/infusion, or as tablets. Further, while the primary goal of all MS treatments is to help control progression, response is highly individual and some people may experience improvement in symptoms as disease activity and inflammation in the CNS is lowered.

Preferred administration (tablets vs infusion) can vary according to prescriber preference, patient medical history, and location.

You owe Sanoosh an apology.

medlineplus.gov/druginfo/me...

drugs.com/mtm/cladribine-in...

[starlight5 in reply to dianekjs]

I agree. Thank you for the clarification on cladribine administration

[Frances_B]

If you have MS it seems a bit strange if you have been having injectable cladribine when the NHS approval for cladribine for MS in the UK is for oral cladribine. Therefore if your neurologist has switched you from ocrelizumab to cladribine I can't see why you would be given it the way it is administered for hairy cell leukaemia. Was a reason given to you for doing it a different way to how it is approved for use in MS? How long has the washout period been since your last ocrevus treatment?

In any case, as cladribine for MS is administered over a two to three year schedule, there is no way of telling what effect switching to cladribine may or may not have on your mobility. As everyone's MS is different and responses to treatment cannot be reliably predicted no-one will be able to tell you. If you have been relapsing what happens to your mobility will be largely dependent on how much healing your body is able to do after a relapse - the time-frame for such healing is also variable so it's a bit of a crystal ball guessing game.

[kdali]

Welcome! 🎉 I am excited that you have joined us! I wanted the injection version , but had to use the pills 😒

So, you are on injection day 2, only one more day to go! 🎉 How are you getting on with it? I hear it's a superior delivery to Mavenclad, which is what I took 6mo ago, so I hope you have fewer medication day side effects this way. I switched from Ocrevus also.

There's a Facebook group for Mavenclad but includes cladribine people too. You can browse there for improvement stories, some of us have improved. There's no way to predict better or worse with any med unfortunately.

[Sanoosh in reply to kdali]

HiThank you so much for your kind words and warm wellcome.

Honestly, I get too upset and my mood changed after injection. Maybe, because I live at UK alone far away my family. I get sensetive and cry although I try to listen to exciting music.

Yesterday was my last (third) day of injection. Next month, I will have another three-day injection that will be decided based on my blood test.

I requested for facebook group but I do not know why they did not accept me so I cannot join the group.

I did not have any washout priod after Ocreuse, I am not sure whethet you had.

Besides, would you please guide me what will happend after two-year course of Cladribine injrction gets completed whether I will get new treatment or no one. What is the iteration I will get MRI scan whether it is after one year or month?

Lovely to hear from you

Thank you

[kdali in reply to Sanoosh]

I did not have heightened emotions, but have read some do and it's short lived. Lean into positive spaces and know it's temporary 🙏 If music is making you weepy, maybe try cartoons or a funny movie? It was also summer when I started, so I had the benefit of beautiful sunny days outside. I had nausea that felt like early pregnancy, intense dreams or a few episodes of insomnia, loads of energy that started around day 4, a few days of bone pain, and fatigue at 11-13 weeks where I went to bed early. I had a relapse work up at month 5, and the MRI is unchanged.

Oh no, I'm sorry they declined your request 😞 Congrats on your first week being done and no daily trips to the hospital for a while now! 🎉

I was not required to wash out, but I had a long delay in starting (partly my own fault for not getting my vaccines started sooner).

I think what happens after depends on how well you were doing before and then during treatment. Some have 6mo scans still and others have none until the treatment is completed. For me, if all goes well, we will wait and see when disease activity returns. I'm hoping for 5 years 🙏 I have seen a few in the group go for a 3rd round of treatment and some had to move on to other drugs, but there's a fair amount past 4-5yrs on no other treatments that give me hope. I would ask your neuro during your next visit what the long term plan for you is.

Feel free to message me anytime, there's a chat function in the group, top header of the screen.

[Sanoosh in reply to kdali]

Thank you so much. Your behaviour is admirable. You are too kind.My journy was too long distance for cladribine injection, I traveled to another city to get injection it was about 3-hour traveling distance that last for three days.

I appreciate it if you let me know whether I can apply multi vatamin such as Bcomplex as well as Q10.

Besides, would you please guide me what to eat what not to eat?

Let me know about the consideration I should apply to have better result through Cladribine.

[kdali in reply to Sanoosh]

Yw! Ty! 🙏🥰 I replied to your message!