flygirl 03/06/17
Last reply 11 months ago
Cladribine and overseas travel

Hello 🙂 I’ll be starting Cladribine treatment early next year but would like to go on holiday to South Africa (from the UK) during treatment? It would be for an important family wedding and would be after the first set of injections but before the second a month later. Should I just delay the start of treatment, not ideal I know but I’m worried about the likelihood of picking up a infection during the long haul flight.
Anyone have experience of Cladribine? How did you feel and did you pick up any infections or illnesses?
Thanks.

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californiadreamin
11 months ago

Is there a reason to not start something sooner then next year?


flygirl
11 months ago

Ah yes, should probably have said… I’m pregnant 😊 Baby due early October and then my virology screen showed I’m not immune to chicken pox so require that vaccination before starting treatment. Unfortunately it’s 2 vaccinations a month apart and then i need to have a further virology screen a month later. Hence we ended up with February 2018 being the earliest I can start Cladribine treatment. Then the very important family wedding was announced for 25th February 🙄 Should I just delay treatment for a further few weeks? I’m just concerned about post-partum relapse…


stumbler
11 months ago

@flygirl , I’d be tempted to delay the start of the Cladribine until after the SA trip. The last thing you want is to risk serious side effects when you’re so far from home.

I’m no expert on post-partum relapses, but why should I, I’m a bloke! However, it is a risk, which I believe can be postponed dependent on whether you breast feed or not.

But, it’s not a definite that you would have a post-partum relapse.


flygirl
11 months ago

Thanks @stumbler for your response. I’m no expert on post-partum relapses either despite being a woman who has already had one child so your option is gratefully received!

Yes, that’s what I’m starting to think. South Africa is a long way from home to be having issues, even if they’re relatively minor it would still be a huge issue and worry. I’m asking my MS nurse and team the same question so will be interested to hear their advice. This is my second child and I didn’t have a severe relapse after my first pregnancy, even when I stopped breastfeeding so hopefully any issues will be minor this time round too. But you never know and the team treating me are astounded that I’ve lasted this long without treatment or severe issues and are keen to begin my treatment ASAP 😫


californiadreamin
11 months ago

@flygirl not knowing your situation I wanted to at least say directly what I would say to my wife if she was in the same situation (and I know how she would respond so I would probably say it several ‘more times and still not change the outcome much)

Having a baby is a stressful situation in itself often and ms is usually made worse through stress. You will be a mother of two and every relapse is going to make that more difficult for you. Weddings are important but so is your well being is as well. Is it really worth going? If it was your wedding and someone was in the same place as you what would you want them to do? My wife and I constantly struggle with prioritizing what is good for her ms over what we think we need to do. Are there other options? Sending a special video? Meeting them at a later date and spending more time with them?

i just wanted to put it other there that you always have options. Consider at least discussing it with some people you trust. I know you didnt have a relapse before but it’s still a gamble. If you have ms, it’s a progressive diease. It will get worse, it’s only a question of how fast.

My wife is following OMS (overcomingms.org). Consider some of its recommendations such as flaxseed oil and lifestyle change. If you can’t take drugs there are some really good lifestyle changes that could help your outcomes and you could start those now. Its approach will be good for you and your pregnancy so it’s something to consider right away.

Wishing you all the best.


flygirl
11 months ago

Thanks @californiadreamin for your comments. Ha, my husband also says things many times to me and doesn’t think he changes the eventual outcome, don’t tell him but his opinion carries much more weight than he thinks 😉
Your points are all valid and I’ve a few months to consider everything before a decision needs to be made. Interestingly my MS Nurse has just got back to me saying that Cladribine has no side effects and although I’ll be taking anti-viral medication, the only restriction will be the need to have a blood test 4 weeks after the first injection. I don’t find that very reassuring though so think there are further discussions and lots more thinking to be done. I’m struggling to find anything published on the matter but that shouldn’t be surprising given it’s still an off-label med… OMS is really interesting and I’m going to look at that in more detail, thanks for the recommendation.


californiadreamin
11 months ago

Little concerning if your ms nurse said no side effects. All these drugs have some side effects. Some rare and serious and other common and minor. A choice of drug is balancing that risk with effectiveness. I can post a few links to help you get familiar with these but I think you have a good plan to see how things go. I am in the US and we can use off label drugs but can you in UK? I didn’t think you could.


flygirl
11 months ago

Yes @californiadreamin, my medical team are pioneering the use of Cladribine here in the UK and told me that it’s actually in the process of being brought on-label as an oral medication. That won’t be in time for my treatment though so I’ll be having the off-label injection variant.
I think my nurse meant there are no significant side effects as there are with other treatments such as Lemtrada. She has sent me the patient information sheet associated with the treatment and so I’ll peruse that and may also ask on here how any others who have been treated with Cladribine fared in terms of side effects.

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