Dizzy was a very good donkey, and helped me decide on Cladribine as our next MS drug! My tests for it all came back perfectly, and we were ready to get started!
I was even getting a little excited about it….
I bought some yummy ice cream in case the tablets made her feel a little sicky, and found out the best time of day to take the tablets. Dizzy was on the task of reading other people’s experiences so we could be even better prepared and working out exactly how many tablets we would have to take.
Then the nurse called to say that the London hospital had said no…
No cladribine for Dizzy or Heather!
Because we fitted all the criteria, except one…not currently on MS medication…
I was feeling sorry for myself and Dizzy was huffing all round the house. Poor Dizzy had been listening to be going on about medication for at least 500 years. 🙂
We also then had other options (and yes, of course they were different) of ocrevus (one stayed the same), aubagio, copaxone and one of the interferons.
After more stressing from me and huffing from Dizzy, we decided on copaxone, which does have a few big downsides. The main one being it involves needles! 3 times a week! I tried to bribe Dizzy into agreeing to do it, but seemingly no amount of ginger nut biscuits would sway her. So now I’ve had to move onto poor Sid, who has agreed. Knowing how much of a baby I am with injections, I already feel sorry for him!
Copaxone is also less effective, only 33.3% compared to Cladrbine, which is between 50-60% effective at reducing relapses and disability. But it is one of the few that works by not reducing the immune system, and with Covid around this seems a big positive. It is also the only baby safe one. IF we did decide on a baby Merlin (if a boy) or Winter (if a girl), it would be over the next year or two., and copaxone would mean no starting a new treatment and then stopping it soon after. 🙂
So although we would like to be on a slightly stronger one, it seems like a good option at the moment. 🙂
Now we wait for the needley things to arrive and the nice injection man to pop round and show me (Sid…) how to do them. 🙂 xxx
And meanwhile, Dizzy has returned to bed after our busy week! 🙂
Good luck Heather! I was on Betaseron for 10 years, and even though I was terrified of needles when I began I was eventually able to do the shots myself. Choosing a disease modifying drug is possibly the most stressful part of this disease, and you’ve gotten that part done
Thank you Grace! How did you manage to start with? I’m dreading it! Needles terrify me too. xxx
To be honest, it took me almost a year to be able to do it myself. I have quite a bit of padding in my belly, so I used that area as it hurt less ( i was never able to handle the ones in my thighs)…Also I had two little girls that fed off my emotions, so I HAD to keep my cool. Do they provide an autoinjector for you? Those help too in the beginning
You got there though! And a year doesn’t sound that long. xx They do provide an autoinjector, but I am super skinny, so people have said I might be better with the manual one. There’s not really any fat on me! :/ xxx
Oh I am sorry it has been all so confusing and stressful. The only consolation is that you have no way of knowing for sure if your first choice of treatment would have been right for you any way. Everybody reacts differently and MS is fiercely individualistic in its development. Remember this is not the last choice. Stay strong xx
It’s true, and at least this one comes with very few side effects. I just wish it wasn’t needles, as I hate them! I am hoping I will get better with them over time though… How are you doing? xxx
Ocrevus, ocrevus, ocrevus or is too late
I might go with ocrevus in a year or two. 🙂 The main thing that put me off, was if we decide to have a baby, it will be in the next year or two, and you have to be off ocrevus for a year first. That would mean I would only get one infusion in! 🙂 It is definitely on my list for next one though, 🙂 xxx
I wasn’t sure what the criteria was you didn’t meet for Cladribine . Just that you’re not on MS meds currently? That’s awful. Surely your doc could slip in a quick medication for a week then apply again – that’s what I’d do anyway 😉
I’m sorry Copaxone doesn’t have the same draw to it that the other one does in terms of administration or effectiveness, though I do hope it’s more effective in your case. However, as you say, that it doesn’t dampen the immune system is definitely a big plus! It’s also handy that it’s baby-safe. I love the names, Merlin & Winter. I’d love to be called Winter, though it would be ironic given how much I hate the cold these days!
I try to think the world works in mysterious ways and that there are positives to see in most crappy situations. Perhaps Cladribine wouldn’t have suited you, and maybe Copaxone is safer given the immune system issue. I just reeeeeeally hope it all goes smoothly! So you’ll be doing these yourself by the sounds of it – I do injections for B12 for my PA and it terrifies me, so if ever you want to chat self-injectionabphobia let me know! Any idea when you’ll get the first shot? Xxxx
That was the only reason… It seems really silly. Especially when they have offered stronger treatment that comes with a greater risk of side effects… I suppose it must make sense to someone though. 🙂
Hehe, I’m not a fan of the cold either. but I do love the name Winter. 🙂 No idea when the first lot of injections will arrive, but tips on injectionaphobia would be greatly appreciated. I’m terrible with anything pointy! xxx
Aww needles aren’t fun. Isn’t Sid doing the injections for you? 😉
I’ve only injected myself in the leg & honestly, I’ve not been too super with it. I don’t have a fear of needles, but doing it yourself is rather different. That said, it’s something you can build up confidence with, especially if you can get support from a nurse/doc in how to do it.
It’s harder in the sense that you need to look where you’re pointing the sharp end otherwise I’d just say look away, close your eyes & hope for the best! xx
Hehe, if I ever have to do it myself, my plan was to just look in the other direction and jab! If I end up doing that, I will let you know how it goes. 🙂 xx Sid will be doing it, but I think it would be useful to be able to learn to do it myself too – at some point. 🙂 xxxx
I am so glad you have such a smart donkey, like Dizzy! I wish you the best of luck with this medication and hope it works out great for you! I know and totally understand how frustrating, stressful, and confusing it is dealing with MS medications, but you and Dizzy are a great team! Please let me know if there is anything at all I can do to help you! I will be thinking of you and sending you many virtual long distance hugs, and hugs to Dizzy as well!!
Thank you so much Alyssa. We will let you know what we start on the new medication. I just wish it wasn’t injections; I am such a baby with them! xxx
You are welcome!! Sweetie, I am not good with injections because the medication always burned so much. I have heard not all the injection medication burn and I hope you do well with it! Let me know if I can do anything for you! xxx
Thank you Alyssa. 🙂 xx I will let you know how we get on. At the moment, there is no sign of the injections – they get delivered. xxx
I have no idea what you are going through or just how frustrated you must be but I am so very sorry and I am sending you heaps of love and gentle hugs.
Thank you so much Wendi. xx Maybe cladribine in the future. 🙂 In the meantime I am just getting more and more nervous about the injections. I wish they would hurry up and arrive now! 🙂 xx How are you doing? 🙂 xxx
I am so very sorry you are having to go through all of this mess………..today, not so good, it’s been a rough one but here is to better tomorrows…………for both of us!
Thank you Wendi. xx I hope this week is going ok for you. 🙂 xxx
Thank you! 🙂
Glad to hear Dizzy is keeping alert. I am sorry you have to go through this and I will put you in my prayers and hope all will be well. Dotty and I send you both many blessings.
Thank you Rasma. xx I hope you and Dotty are keeping well and safe. Is Dotty still behaving herself? 🙂 xxx
Sigh – nothing is easy, but you have a good and safe alternative and I’m glad you don’t have to leave the house for the injections. That is a plus. Eat the ice cream and lots of ginger biscuits anyway – you both deserve them.
Thank you Linda! We are well stocked with both. But I am having to keep reminding Dizzy that they are for when we have the injections. Otherwise, she would have eaten the lot by now!! 🙂 xxx
Yes, treats for when you two when you need them most! Tell Dizzy if it was up to her, she would declare the entire year 2020 a reason for eating all the ginger biscuits that she could carry out of the store!
Hehe, I think we have all deserved a lot of treats for this year!! xxx
Yes, chocolate especially … please tell Dizzy I am glad the Donkey (Democrat) party got in here in the U.S. Donkeys rule!
Good luck Heather! COVID had been one frustrating problem for sure! P.S. that Ben & Jerry’s looks delicious!