Cladribine

[max011]

I have recently been diagnosed as having RRMS. I have only had 2 relapses in the past year, both of which involved temporary loss of eyesight. On both occasions, my vision returned to normal by itself, without any need or medication to be prescribed. However, my most recent MRI contrast scan shows that the lesions in my brain and spinal cord are increasing rapidly in number and my Neurology Consultant has recommended that I now move on to taking a course of Disease Modification Therapy, which would involve taking a drug called CLADRIBINE. This drug seems to have some terrible side effects, so I am extremely reluctant to take it. I feel quite well at the moment and don't want to take a drug that will make me feel worse! I'd appreciate hearing the views and feedback from others who've taken this Cladribine drug

[Hidden]

I am sorry to hear of your diagnosis, and eyesight problems, I was not taking any disease modifying drugs when first diagnosed, however when I had an episode of optic neuritis and nearly lost my vision, and did lose a great deal of t vision and some of the acuity in that I , then I decided to begin DMTS. I don't know anything about i particular drug you are talking about ,but it is always a case of benefits vs risks with these medications. Wish you all the best

[kdali]

Welcome! All of the DMTs have a list of scary side effects, but most people will not experience them. They all work to prevent new brain damage. Resources for learning more about Mavenclad/cladribine are MSLifelines and MSelfie.

I love Mavenclad 🥰 It's been great and seems to be working for my MS 🎉

[hairbrain4]

Sadly all meds for MS have a list of side effects. That doesn't mean you will have them. Everyone reacts differently to meds. I was diagnosed 19 years ago & have tried a few different meds. Some worked for me some didn't. I haven't taken Cladribine but did look at taking it after Ocrevus didn't work. But my insurance didn't cover it at the time. I suggest that you discuss your concerns with your Dr & see if there is something else you can try if you don't feel comfortable with this one.There is nothing written in stone about meds for MS. I highly advise that you do get on a med because they do help to slow the progression of MS. Here is something to think about....You said you had 2 relapses in a year. If you can't get the progression stopped or slowed your symptom may become permanent as the damage to the optic nerve maybe come permanently damaged. That sounds harsh but MS is a progressive disease & sometimes we have to choose the side effects over the permanent damage.Prayers that you can find a solution that works for you🙏

[CatsandCars]

I have not taken Clabridine/Mavenclad, but as an MS patient I understand your dilemma. There are quite a few effective meds for MS. My MS specialist likes Ocrevus, Kesimpta, Gilenya, and Aubagio, and tends to use Mavenclad if a patient isn't responding well to other treatments or seems to be accruing a lot of damage early on. It sounds like your doctor really wants to hit the MS hard coming out of the gate, which is a good thing. We all know what you mean about reading the side effects and going "Whoa!" They sound terrible, and they have happened to someone, but hopefully the odds will be in your favor and they won't happen to you. I've been on four meds in 22 years with MS, and there's always that feeling before you start a new one that's something akin to when they put that bar down and lock it into place right before the roller coaster ride starts. Kind of a panic/too late to back out now sort of thing. 😊 If you're deeply, deeply uncomfortable with the side effects, you can ask your doctor for a second or third choice. But you want to slow down the damage, and I can understand why he made the recommendation that he did.

Hopefully you will get some more responses from those who have tried it. Best of luck to you!

[mrsmike9]

I would say to start taking something, the sooner, the better. You need to stop disease progression. If your first med does something incompatible to your body, try something different. My first two meds caused issues for me, but my third was the charm.

[mscalicima]

Hello there, I wish you the best. Please know these are my opinions because I have had MS for thirty years, first episode when I was 22....if they had DMTs for the first ten years I had it, I would be in a very different place physically right now. Please do not stop taking one....anything is better than none- I have heard reputable neurologists call the DMTs a cure, because once you start the treatment, the chances are you won't progress- you can't undue what is done, but it can stop further degeneration. I am not sure why your Doctor is prescribing Mavenclad- my understanding from my neurologist is that it is really a last drug you want to start, and only if other ones have not been successful in helping slow down further lesions and/or symptoms. I am just starting mavenclad because I am now progressive since I have had it for so long. I was RRMS for 25 years. I have done all the others (Avonex, Copaxone, Tecfidera, Gylenia, Tysasbri, Ocrevus, Kesimpta). I think you should get a second opinion from another neurologist, and I would encourage you to do Tysabri. It worked wonders for me and I loved it. I had to stop it because I test high for PML (a brain disease) - you will need to be tested for that first. They all show lots of possible side effects, which they have to by law and for liability reasons as well.... Start a treatment, and if you don't have terrible side effects (I did not on any of those- just changed because I preferred different administration options), do an MRI in six months (I did every 6 months for many years, now I do once a year because I am progressive) and if you have not gotten new lesions (or demyelination) then stay the course.....ocrevus is one that takes a while to get out of your system, so do something shorter lived like Tysabri and some of the others...obviosuly pill form or infusions are preferable to daily or weekly injections, though weekly is not awful. Just some thoughts..but please do something because the side effects you may have will not outweigh progression due to. not being on a DMT. Blessings to you and best of luck! Amy

[anaishunter]

Sorry for your diagnosis. MS attacks the brain and spinal cord. There's no cure. I followed my neuro's advice at the time of dx to go for the most aggressive DMT available (5 years ago) that my body would handle. It was Ocrevus.

Mavenclad (Cladribine) is of the same category.

I'm so happy I did because I've not had any relapse since, no new lesion and many symptoms are gone (fatigue being the primary one).

I've had 0 side effect, never for Covid. Only had a bad cold this winter. You just have to be careful about protecting yourself a bit more, like washing your hands more often. All worth it.